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My Story: Structural or TMS Or Both? Can Anyone Help?

Discussion in 'Support Subforum' started by JulietBlue, Jun 21, 2017.

  1. JulietBlue

    JulietBlue Peer Supporter

    Hi everyone,

    I am new on my journey to discovering TMS. A little over a week ago, I was searching the net for possible treatments for the completely debilitating chronic pain hell I have been trapped in for over 9 years now. I've been hesitating to post my story on here because there would be so much to tell going back so many years that I honestly didn't know where to begin or end and I didn't want to post a novel on here thinking people might be scared away from reading. But, I have been through A LOT; that's just the truth of it. And I'm going to be leaving out things just for the sake of cutting down the length of this but I'm going mention what I think may be important and some of the many questions I have now. Please bear with me.

    Currently, I'm 39 yrs old and I started reading "The Great Pain Deception" just in the last week and learned about Dr. Sarno and his work. I definitely see myself in the classic descriptions of TMS. I've been aware for many years now that my nervous system is very "keyed up". I've had a lot of physical and emotional trauma in my life, anxiety and depression and a mix of a bunch of different things which makes things a little more confusing for me in trying to figure this out now. But I'm almost 100% positive that I have and have always had TMS but what makes my case maybe a complicated one, is that I also believe that I did have a structural abnormality that I was diagnosed almost 6 years ago now, and one that I also believe I had to have surgery to correct.

    Pain ruined my life. Period. I lost every single thing you can possibly lose, my career, home, almost every single friendship, relationship, even most of my small family gave up on me long ago. I've been useless to myself and everyone else for years. I even almost lost my mind and it's been a very lonely, frightening journey with very little support. A few short weeks ago, I was still praying for my life to end and trying to figure out how it would be possible for me to go through with doing so by the end of the year. I want to say I might have some small glimmer of hope now but to be honest with myself and whoever may be reading this, part of me is struggling to hold onto that hope. I think I'm feeling more confusion than ever, just trying to figure all of this out.

    A huge part of me thought when I started reading Steve's book that yes, this does sound a lot like me. But..but..but.. I'm sure many of you know how that goes in the beginning. I've been making myself move again more, cleaning things that haven't been cleaned and sorted in ages. Began journaling again and meditation, a little walking and a small amount of more physical activity each day. Been trying to ease into that but mainly because I think all of this is good for me anyway. I decided to just try distracting my mind from the stabbing, aching, shooting pains I have mostly in my head and face but other places as well, like namely my whole left shoulder, neck, back of the head area going into my head and face, and behind my eyes.

    A few weeks ago, I couldn't read a book at all because the pain in my face and especially eyes and head alone were so distracting and debilitating. I couldn't/ didn't want to talk, eat/chew, go anywhere, do anything, including taking care of myself and my personal space. I was having to rely on one family member I live with to help me do everything and It's been my worst nightmare and even this one person doesn't seem to understand at all what I've been going really through. I've always been very independent my whole life and I really don't want to have to depend on anyone anymore. It's been years, but I had to surrender all of that when I had surgery almost 6 years ago. I recently decided that the pain medication I had been using for the last 4 or 5 years to dull everything, was actually making all of my pain/headaches even worse. So I decided to just quit. My doc only gave me the option of going on another opioid type drug to get off the one I was on. I decided I didn't want to do that. I wanted to "feel" what my pain levels and headaches were like without them. I just want to feel anything but physical pain and mental and emotional numbness, period. Plus, I was sick and tired of being the most miserable, inactive, zombified person you could ever imagine and all of my pain in my body, was just getting worse as time went on. I haven't been anything close to myself in years. Frankly, I'm trying to figure out who "myself" even is off of all these drugs. I'm still struggling with brain fog in relation to quitting the drugs and some thyroid issues I'm currently having as well due to a steroid medication I was put on a few months ago that I believe caused me to have adrenal insufficiency; more on that later. So please be patient with me if you choose to read this. Hopefully, I don't repeat myself too much and I apologize in advance if I do. If anyone does decide to read this, I can only say I'm very grateful to you for doing so and would consider any kind of response or feedback nothing short of a blessing. I need some kind of direction. I was once a very bright, intelligent person once and I just hope and pray that she comes back someday soon, somehow. But I just don't know if that's possible at this point or if too much damage has already been done. I just want to be a healthy person in every way so very badly that I'm willing to try or do anything else I haven't or maybe, someone out there has been through something similar to me. Although, I can't find one just yet.

    I found TMS last week while still in the midst of acute opioid withdrawals. My general pain levels did seem to improve when I quit the pills almost 3 weeks ago ( Other then some increased widespread muscle pains at first) and then even more so for a few days last week after I started reading Steve's book and watching and listening to some of Dr Sarno videos online but since then, I've regressed some again and still not sure if it’s due to my lingering doubts or because I may still completely wrong about all of this. I really feel like my cognitive functioning is still pretty poor these days and reading and being able to absorb what I'm reading and to remember what I'm reading has been quite a challenge lately; In fact , Steve's book is the first book I've been able to attempt to read in the longest time due to the severe pain I was in and where it's been located. Couldn’t even look at a tv much either. I never identified as being addicted to these medications, but I was very well dependent on them off and on, mostly on, for everyday for at least the last 5+ years. So here's my history as it relates to physical pain. But looking back now, I can see how emotional trauma was always present in my life and at some of these points, had become just too much for me without realizing it at the time, but again, for the sake of length and where my doubts mostly lay, I'll try to focus more on what physically happened to me.

    I started to suffer from occasional stomach issues when I was only around 5 years old. Looking back, I think a big part of this was some kind of undiagnosed general and social anxiety disorder. I was sick with my stomach often, sometimes to the point of vomiting. I used to get this sick feeling a lot when I knew I had to leave the house, to go to school or camp or anything else. I didn't want to be separated from my Mother who would abuse me one day, but be loving and nurturing the next. She took a lot of her rage out on me, which would make me angry, and If I showed any anger towards her, her anger would only escalate. So I did learn to hold a lot of these feelings inside. I’ve always been pretty laid back for the most part but also have also been a chronic worrier. My Father has always been a very anxious, worrying type who basically put the fear of everything into my sister and I. It was also around this age when my older sibling told me one night that I was grinding my teeth in my sleep. I remember this clearly because I had no idea what she was talking about and had to have her explain it. I would go on to do this almost every night that I slept, even now.

    A couple years later is when I first remember getting occasional headaches. Just this awful pain in my head that would keep me from being the active kid I was. I remember getting them most in the summertime, when the weather would be really hot or humid but I'm sure I got them during other seasons of the year as well. Or if I was running or playing too much, I sometimes would get a headache too.

    In my early to mid teens, my stomach issues seemed to calm down a bit but I was still getting some here and there. I loved acting, did a lot of theatre and dance growing up and I know I would get that nervous feeling sometimes before doing a play or dance performance. Not every time though. But it was around this age, maybe 15 or 16 where I started noticing some muscle pain and tension in my neck and shoulders. It wasn't constant, but it was bothersome at times. I'd be sitting in a class and I would get very uncomfortable trying to shift around in my seat and relax my shoulders as much as possible. Carrying a backpack sometimes seemed to make it worse. I started getting worsening headaches, that eventually turned into occasional migraines. This always seemed to be related to the neck and shoulder pain, or stem from it after it would get to be too much. The pain would go right into my head and face. Would tell primary doc about these pain and headaches and of course probably due to my age, I was basically told it's just something that I probably inherited. No explanation for the neck and shoulder pain that was very real to me.

    A couple of years later at 18, still a pretty steady progression with the severity and frequency of these pains and migraines/headaches. But just tried to live around them as best as I could. About a week after my High School graduation, I got into my first major car accident. This is in 1996 when there were no seat belt laws and automatic belts and airbags were in newer model cars, but I was driving a late 80's model that had none of that, and regretfully, I wasn't wearing my seat belt. I would from that day on though without exception. My head hit and shattered the windshield. I had abrasions in my forehead and eyes just missing my iris and pupils. Was diagnosed with whiplash and concussion. So after that and for a while, I had even more pain in my neck and shoulders and now constant headaches for a month or two after and still the occasional migraines that seemed to still be connected to the neck and shoulder pain. Started seeing my first neurologists after the accident and I began to get a little frustrated that they didn't seem to be listening to me either when I told them that this really all started BEFORE the accident, but I was well aware that it didn't help things either. Again, tried to go on hoping that things would somehow get better but I had this feeling that they would just continue to progress and I was right.

    At around 20/21, I started getting this horrific pain in my stomach and esophagus. It seemed to come out of nowhere one day. I got really, really sick with this. Lost around 25 -30 lbs in just under two months. Was referred to gastroenterologist who ran all the tests including an endoscope to look inside my stomach. Was ultimately diagnosed with ulcer and a severe case of GERD. Started antacid medication that I'm still on to this day. Again, was told this condition was probably inherited from one or both of my parents. My older sibling was diagnosed with the same thing. and again, all during this, still getting neck/shoulder pain and headaches/migraines seem to occur more often. It seemed like each passing year was getting more and more pain and headaches. As an aside, I remember the year leading up to this, one thing that happened that caused me great fear and worry. My Father had a mild heart attack and had to have a quadruple bypass. I remember I cried and worried A LOT. I can’t remember exactly but I think this all happened right around this time. Again, thinking in TMS terms here for this. He had the surgery, and ended up ok. But I would continue to worry about him for quite a while after.

    When I was 23, had another major car accident. This time I was hit from behind from a very intoxicated driver while going full speed on a major highway during a late night rainstorm. Car spun around several times before coming to a stop almost tipping over, thankfully didn't. That same car had lost control as well and slammed into my drivers side door about a second after my car came to a complete stop. I remember my neck being jerked first from getting it from behind then spinning, then sit from the side. in almost all directions. Again, diagnosed with whiplash and severe muscle spasm. Was wearing seatbelts thankfully so no concussion. Just even more tightness and pain in my neck and shoulders.

    Same age 23, was also going through some major upheavals in life after the accident. Had my first long term relationship end, I had been living on my own independently with this person and after the break up, was forced to move back home with my parents. Away from most of my friends. This was all very difficult for me at the time and started suffering from major anxiety and depression. The anxiety caused a whole bunch of physical symptoms, one being that my stomach issues began to get worse again. Started taking anti anxiety medication for the first time in my life and it actually seemed to help. But it didn't have any effect on the neck/shoulder and headaches/migraines. Those continued progressing steadily.

    A few years after that, I was diagnosed with high blood pressure. I was told again that this was probably due to the fact that both of my parents had suffered from the same condition and that it was simply genetic. Started trying a few different medications to control it but it was still on the high side at most doctors visits. Was finally put on a medication that seemed to help and still taking that medication today as well. Around this same age 26, I suddenly one day noticed that I couldn't really bend my right knee. It just wouldn't allow me to bend all the way down and started to hurt, a lot. Right in my knee cap. Like a hammering feeling. Started doing the orthopedic and PT rounds when it would not go away on it's own at all. Tried PT two separate times in around a year’s time trying to avoid having a scope done. An MRI showed I had Chondromalacia Patella and the scope showed further damage to the cartilage behind my knee cap where pieces were starting to break off and float around. Had first scope, and pain and swelling remained and only seemed to get worse a year following the surgery and still doing physical therapy. Went to the next state over to see second orthopedic surgeon who treated famous athletes from one of the major sports teams. He's known for only doing surgeries when absolutely necessary. Or so I was told. ( I should mention here now that in the State where I grew up and lived, we're notorious for having a sub par and limited medical system in just about every field. So many people including myself travel to the next state over if possible if they want to get anywhere with their conditions.) He told me my kneecap was shifted, not sitting in it's proper groove and this was causing the damage and irritation. Suggested 2nd scope to get it back on track so to speak. Had it done. Was told that it was just how I developed and years dance study growing up had probably just advanced things to that point. All made sense at the time, had 2nd procedure done. For the most part, I healed and it did improve. But the knee would always continue to give me problems. Still suffering from occasional but more frequent neck/shoulder pain and migraines during this time. Started taking my first migraine attack medications that it seemed like I was needing more and more to depend on to get over them for a while, until the next.

    Around age 30, that pain and those migraines, were still becoming more and more frequent. This was now happening on more days than not. I was working full time, sitting behind a desk at a computer which is btw something I hated and never wanted to do but had to support myself somehow if I wanted to be independent. I had given up on my dreams that I had had since childhood years before that for multiple reasons that I felt were beyond my control. I mention this because I do think that if I do in fact have TMS, then yes it might apply to that but also, having to sit like that all day using my arms so much only seemed to intensify my already problematic neck and shoulder pain. Some days I would be really, really uncomfortable and the inevitable migraine would come. I think it's around this time that I also started to notice that this pain and headaches/migraines, would be much more prominent on the left side.

    Within two years, the pain had progressed rapidly and it was now a chronic, 24 hour condition. Everyday or every other day I had this horrible left sided pain that was now spreading down my arm and into my hand making it numb. The pain was also crawling up the side of my neck and head, into my jaws and eyes and it was becoming more and more difficult for me to move my head. Then one day, I noticed this pain and tightness right around my left collarbone. If I moved my head a certain way, it felt like the muscles underneath would catch and then uncatch. I was quickly becoming disabled by this pain but it was yet to become even worse. I was frantically going from one specialist to another. Neuros, Orthopedists, Chiros, I thought it has to be either my shoulder or my neck, something has to be causing this now debilitating pain that was very very rapidly destroying my entire life. I saw an Orthopedic surgeon who did an MRI of my left shoulder and told me I had very severe tendonitis and bursitis in that rotator cuff and a small tear and that I would need to have a scope done to correct this. Being that I was now completely desperate for answers and relief, I thought maybe this has what has been causing all of this all along. Had the scope done and knew right away that there had to be something else. I was still having this constant, stupefying pain all in my head and face, neck, shoulder and arm. The entire upper left side of my body. I was now housebound for the most part. I went back to work a couple months after the surgery to give myself time to see if maybe it would help. No change at all.

    I was now waking up every, single morning with a full blown left sided migraine attack. The tightness around my collarbone was now a constant, poking type pain. It felt like a bone was trying to come through my chest and side of my neck. I felt this thing every minute of the day and night. I would go to work and be sick and in excruciating pain just trying to complete full days without having to leave to go to the ER with level 10 plus pain. My left arm constantly hurt and typing and sitting or even standing sure as hell didn’t help it. I was in bad condition and rapidly worsening and I knew it. My boss even let me try to work from home because she could see how much I was struggling and I couldn't even do that. Light and sounds just made my head throb all the more day and night, I was always sick and nothing would ease any of the pain or discomfort. I'd have to run to the bathroom constantly to be sick or I would go to my car during my lunch break just to lay down. I started having to call out of work more and more because I couldn't drive in this condition much less get up out of bed to get ready for work or anything else. It became so I could barely even take care of myself and I was on my own, alone.

    I was now going to the ER quite often, shaking, crying, writhing almost screaming in pain. I remember during some of these attacks that I would be thinking of the scene from the movie "Alien" where the little baby alien pops out of that poor dudes chest. My blood pressure would be DANGEROUSLY high, almost unheard of I was told and I was already taking medication for that. It felt like my collarbone or something was trying to poke it's way out and the ER staff and the doctors I was seeing, would have no answers for me which was one of the most frustrating and scary things I have ever experienced. No one knew why I was getting this constant pain and chronic daily migraines.

    Then one day, it happened. I woke up and I could no longer turn my head at all to the left side. It would get stuck as soon as I would start to turn it, like something was in the way. I knew something hard was doing this. The same "hard thing" that felt like it was trying to poke out of my body. I thought I was going crazy and at that point felt like it was a sure possibility that this was going to drive me there. Speaking of driving, I had to completely give that up, and I couldn't work anymore. That was it. I couldn’t even move. If I didn’t have a doctor’s appointment and I wasn’t in the ER, all I could do was lay on my bed, either on my back, or on my right side and try not to cry, because crying would only make the migraines and facial pain even worse. Trying to move when the whole upper left side of my body didn’t or couldn’t was more excruciating than I can even put into words. And the head and facial pain besides, again, no words.

    Starting seeing specialists in the next state over because I was getting nowhere where I lived. I didn't know it at the time but I had an appointment with one of the most well known Thoracic Outlet surgeons in the country. He looked at my tests, showed him right there how my neck movement was completely impinged on the left side. Finally, I found someone who seemed to understand what I was telling him. I had a migraine right then and there that day in his office. He told me I had something called Neurogenic Thoracic Outlet Syndrome, and in fact, in all of his years of doing surgery for it, I was one of the most severe cases he had ever seen. He told me I had this congenital anomaly where I was born with this set of first ribs that only a certain percentage of the population are born with (Lucky me!), and an even smaller percentage that are born with them, ever get these kinds of problems from it. It was rare but it does happen. What I was feeling was indeed bone impingement when I tried to turn my head. ( 1st rib and clavicle, I believe) There were nerve bundles and blood vessels between these bones that run up through my neck to my head and down my arm to my hand. That was the reason for the severe pain and migraines I was getting on the entire left side. He told me that there was danger of blood clotting with this as well along with nerve damage. ( This surgeon is also known to be very, very conservative and told me as much himself. Will only do surgery in the most severe cases. Otherwise, other things are tried to avoid it like physical therapy and botox injections.) He recommended we do the surgery as soon as possible to avoid any further complications. We scheduled the surgery for the next week.

    I was 33 years old when I had this 1st rib resection and scalene muscle ( attached to rib and neck) removal surgery. I checked into the hospital alone that day and remain there alone for 5 days. I have a very small family; my parents by this time were having their own severe health problems and were unable to travel an hour away to the hospital where I was. I was single, childless and dating was the last thing I was able to focus on during the few years leading up to this. ( still the case) By this time I had lost almost all of my "friends" who didn't know what I was really going through and were moving on with their own lives., So most gave up on me after a while. I was scared to death but thought, this is the only shot I have at getting my life back. I have to do it. The surgery took around 5 hours and I ended up spending 5 days in the hospital afterwards for recovery with a drain attached to my chest. The pain was horrific. I really can't say if it was worse or not, prior to. I guess worse in a different way. There are two ways to remove the 1st rib, one is through an incision slightly above the collarbone. The other, is underneath the armpit. Mine was done above the collarbone. I remember waking up from the surgery and the raw nerve pain immediately hit me like a ton of bricks but the first thing I did, was to move my head to see if I could turn it to the left, I could. I was at least happy about that. I had asked him before the surgery what could have caused this happen? How did that bone just get in the way like that? He basically told me that it could have been a couple of things, one being that when you’re born with these extra ribs, as you grow the space in the thoracic outlet can get smaller and smaller and you start getting sometimes gradually. Or, a previous car accident could have been the cause when my neck moved a certain way and this bone that's attached could be slightly "jolted" out of place. I could see how it could have been either or a combination of both of these things in my case. But to this day I still don't know for sure, probably never will. Now, to further complicate things, I wonder if there’s even a small possibility that if maybe years of muscle spasm from tension and the resulting oxygen dep might have had anything to do with this at all? Could that have pulled that bone even a little out of place? Doesn’t seem likely given the bone impingement and not being able to turn but I guess it might be possible. I had been holding in quite a lot, esp “tension” almost my whole life. And personally, in the couple of years leading up to this, I was going through all the worse things in life there is to deal with. Death of a loved one, Loss of my first home, another ended long term relationship, etc. Could it all just be a big coincidence?

    The surgeon told me that recovery would be long and could be difficult for me given the severity of how badly the nerves had been compressed for so long before the surgery. Now I had even more angry nerve pain from the surgery itself. He gave me a home physical therapy program to follow for one year. He told me that most physical therapists don't know how to handle the aftercare for this type of surgery and would most likely only hurt me more then help me. So, for this reason he has most of his patients do home therapy. Showed me the exercises would have to do for a year. Also told me that it could take up to two years for my nerves to calm down. I knew I was in for another long road ahead but I was also optimistic that I would heal normally and that the neck/chest/head/facial pain would eventually fade away.

    Some of the post surgery nerve pain did eventually fade away after a couple of years. But those were very long years of isolation and physical and emotional pain. I was still having pain and weakness in my shoulder, severe tightness and pain all around my neck into my head and face. And sometimes severe arm pain. Was still having this constant, head -rocking headache day and night that never went away, and was still having to take migraine medications for attacks at least a couple of times a week. I’m just recently am not getting as many migraines, but sometimes the spasms in and around my head, neck and shoulder cause me to get one (but this has even gotten somewhat better on some days just in the last week ). And to make matters worse, I began to feel like on follow up visits, my surgeon was beginning to write me off. Which was hard for me to believe but it sure seemed that way. I would tell him that sure, my range of motion in my neck was better but that I still had a constant headache since around 2010 and now even as I type this. Especially on my left side and I still get stabbing pain in my left eye mostly but pain and blurriness behind both. When I stand up, or walk around, my left shoulder feels like it’s pulling down and away from my body and I have a tendency to try to pull this shoulder up when I’m upright or walking around. It also now looks dropped or droopier Than my right side. My trapezius muscle on the left side is also way bigger and more developed than on my right. My posture is still off.

    Going back to the surgeon and follow up appointments; He passed me off after a while to pain management specialists who did nothing but injections that did not work, he said removing the bone and the scalene muscle, he created plenty of room in my left Thoracic Outlet so there would be no further compression but that I would someday need to have my right side removed but it could wait until I started to have symptoms. I've been to physical therapists, chiropractors,etc where I live who had never seen anything like my case before and would take xrays and MRIS of my neck because of the pain I was getting there had been steadily getting worse in and of itself besides the shoulder and head pain. They told me I also have scoliosis of the neck, and I do. Lost the curve in it completely. My left shoulder would be weaker ever since the surgery even today. Infact, typing this much has always been a problem for me, but lately, I'm trying to build up strength on that side and try to ignore the discomfort I've been feeling for years. I do notice this shoulder pain on the affected side does spasm and bother me even more when I’m stressed out or upset, this in still goes in my neck, face and esp eye on the left side. Doing it now in fact, as I recall and worry about all of this. But can also happen if I try to use my left arm “too much” again, trying to ignore this as best as I can lately and sometimes notice a reduction in it.

    A pain management doc that I only recently stopped seeing put me on heavy painkillers a year and a half after the surgery because I still couldn't function at all, not even to make it to my various doctors appointments. I gradually became even more depressed and withdrawn from the world. A virtual recluse by my mid 30's. In the last few years ( And I think this is where TMS may still come into play but not sure) I've had many other physical ptoblems. Saw every possible specialist and tried every kind of treatment you could imagine. My teeth grinding has been a lot worse the last several years. I hated wearing a mouthguard to sleep and started doing so sporadically. On two of these occasions I fractured two teeth. Dentists have told me that my facial pain and headaches could be from the teeth grinding itself perhaps further aggravating the spasm and pain on my “weak” side. I also get some jaw popping or cracking occasionally on the opposite side and popping in that same ear pretty often. Have been told by dentists that my jaws seem ok, that the problem is “muscular” and just wear a mouth guard. However, that doesn’t stop the grinding, just somewhat protects my teeth.

    BOTH my knees started to hurt A LOT during the year I was recovering from the TOS surgery and have gotten worse, particularly my right one which is the one I had the two surgeries on years ago. I was most recently diagnosed with Hoffa's syndrome in that knee and that seemed to start suddenly and separately from the arthritic type pain I was already getting in it. They said this syndrome could happen from a bang or something hitting the knee. The only thing I can remember happening a few months ago was that I went to change a light bulb and had to step up and off a chair to do so and when I stepped down, horrible pain shot through my knee and I felt like I was going to pass out for a second but sure this pain started even before that. It’s just when I noticed how bad it had gotten. I was supposed to start physical therapy for this knee and my posture and tmj problems again with a new therapist the last couple of weeks and I have yet to go to my first appt. My last orthopedist appt with for my knee a few months ago, they prescribed me oral steroids to try to get some of the pain and swelling down. They never told me or warned me about the risks of these medications and I got pretty sick both while I was on them and most especially when the two week taper ended. It felt like I was going through severe withdrawals of some sort. I had very severe abdominal pain for a few weeks, chronic fatigue that would have me just laying on my bed for those same few weeks. New and severe muscle pain in my groin on both sides, I had no appetite and that has been slowly improving the last few months, and horrible, severe brain fog that felt like I had a wool cap on my brain. I’m still experiencing that one now although it’s not as bad as it was at first, it’s still daily and very worrisome. Coupled now with what is probably brain fog and cognitive problems from long term opioid withdrawal, I think. I realize that I probably am experiencing some secondary adrenal insufficiency from these steroids. I feel like they really messed with my Cortisol levels. The worst part is I told the Orthopedist about this and that I wish I had never tried them, and they basically said there was nothing they could do about it now since I already finished the taper. I’ve been calling around for over a month in my state to try to see either an endocrinologist or a naturopath who could do the proper testing and perhaps help me with this. So far I have called a long list of those two types of specialists locally and the ones I called or they no longer practice here, or they are not currently accepting any patients or I have wait times for new appts 3 or 4 months long.. So like with other things, I’ve been trying to be patient and looked up so info about how to start treating myself for this to encourage my adrenal system to balance itself back out, with diet, getting enough sleep, etc. But this new problem has been very bothersome and slow going to correct itself as well. Like I said, the medical system locally is pretty limited and not very good. I’m starting to look at going into that other state to see one but some endos don’t even seem to believe it exists and some treat it by putting you on more medication to balance it out, possibly for life. I don’t drive and getting transportation is often a challenge for me as are my current finances so I can’t afford to travel to another state to see another physician of any kind just for them to tell me they can’t help me. I hesitate to travel to see a TMS doc for this same reason, even though I’m thinking I should try anyway.

    I really do want to figure ALL of this out and recover completely if it’s possible. So far in the last week or two, I identify a lot with the description of TMS in relation to my other problems. Maybe even the post surgery stuff I am experiencing with my shoulder and neck but not sure. I’m very confused at this point. ( Obviously). I have been thinking a lot about going back to the surgeon who did my rib resection and asking him questions about my postural imbalance and continued pain and weakness on that side. I haven't done so the last few years because I felt like he just kind of did a cut and run and I don't want him to talk me into having the right side 1st rib out because I honestly don't think I could go through all of that again and I don't really get any pain on that side, yet. However, if this is what is causing the imbalance, one rib on one side, not the other. Then I may have to if I want to ever look or feel normal again. I can't even find any answers to this on any of the TOS forums I've scanned. Plus, I can't be sure that that’s not what is causing my continued neck and head pain although, it has improved somewhat lately. But I'm still left with constant pain in my face, head, neck and mainly left shoulder on one level or another. So far, enough to keep me pretty much where I’ve been the last 6 years.

    Despite everything I'm still trying to apply TMS principles to all of my pain conditions or what I know of it so far. I do believe the brain has a huge role in all this and I’m trying to be conscious with regard to reconditioning my brain and doing practices to calm down my nervous system. I was also diagnosed with fibro a few years ago but I never felt like that was accurate. Yeah, my muscles have been tight and achey throughout my body and I know I hold a lot of tension in them, especially my upper body but mainly because I couldn't really be active at all with what is going on in my upper body and head every single day. I'm trying to push a little more physical activity the last week or two as well but so far my knee is still popping and cracking and hurting and difficult to bend. I’m trying to do more exercising at home to start moving more despite how my head and shoulder/neck feels, but my knee will only move so much and it hurts enough that it slows me way down when I’m trying to get on the floor or do any kind of lower body exercises. Again, still not sure if I should give PT a shot for that and my posture/shoulder problems but I’m really on the fence about that.. Yeah, I know, I’m a mess. It’s true. ( Also hard on myself a lot.)

    So, in my case I think I MAY or MAYNOT have a perfect storm of TMS and structural. Like I said at the beginning of this very long story, I focused on most of my physical problems but I've had a lot of horrible, traumatic things happen to me along the way as well and I know I have a long history of repression. I just can't really see how those things could have caused the mechanical problems with the TOS that happened but not ruling that out. But for the anxiety, stomach issues, HBP, TMJ and maybe even my knee issue, I could see how it could be TMS. I also wonder if TMJ is considered a TMS issue, how I can stop this one thing when I only seem to do it in my sleep. I continue to cause damage to my teeth because of this, even with a mouthguard. I’m slowly undoing all the dental work I had when I was younger to make my teeth so nice. And again, not working yet so I do worry how I’m going to pay to undo all the damage I’ve already done with that. I had an appt scheduled with a TMJ/headache specialist in the next state but I had to cancel it when my transportation fell through. Then starting reading about TMS.

    I feel like I’m still too young to be living like this and having all of these different medical issues. I’m angry with the physicians who caused some of these things or just have been so apathetic to what I’ve been through and still dealing with. I don’t want to live like this anymore, I really don’t.. Even with postural difficulties, asymmetry, should my body still be healed by now? Why am I still getting constant headaches? Facial pain? I’ve also had my eyes checked although not recently but was told they are ok. I’ve tried to rule things out as I’ve gone a long as well. I know TMS books say not to continue seeing a chiropractor but I’ve been working with one for a year now and doing home traction to try to get the curve back in my neck. My neck pain itself has improved somewhat compared to what it was but I can’t figure out why I’m still getting headaches and pain. Had CT scans as well. This is going back before I was diagnosed with TOS however just to rule out brain tumors and such with the chronic migraines. But all of that came up ok thankfully, when I had them done and I was no doubt in even worse shape then than I am now..

    I guess I’m so lost right now that I’m hoping for any kind of feedback on any of this jumbled mess if it makes sense to anyone at all. I feel like I have more to say and more questions to ask but I think if I want anyone at all to read this, I better stop here. Does this sound like I have this perfect storm that I mentioned earlier? All I can find online so far that Dr Sarno said about TOS, and no I haven’t gotten to read his books yet but the only thing I found so far was that he said that it’s rare to have the bilateral rib anomaly and rare that it cause TOS to the point where surgery is needed. Or something like that. Does it even matter now? So what can I/should I do now about all of these physical and mental issues that have kept me from having any kind quality of life? I just would do anything for some of that back. I have so much to rebuild and I feel like I need to start feeling better in order to do that.

    Again, if you read this whole thing and especially if you chose to respond; either way I thank you from the bottom of my heart. I know it couldn’t have been easy to read this till the end. I’m just throwing this out there in hopes that at least one person can get through it and give me any kind of response, direction or feedback. I also tend to be on the sensitive side ( just read about HSPs in SteveO’s book) I ask that if you do decide to respond to this, please be kind. And again, thank you for taking the time to read this and respond if you so chose. Really, thank you.
    jaumeb likes this.
  2. Tennis Tom

    Tennis Tom Beloved Grand Eagle

    Just came across your post, you've been through so much and spent and done so much so far. You sound like many others who've landed here as the last resort, physically and financially exhausted. Read all you can about TMS, if that's not enough to convince you, there's a list of TMS physicians here, figure out how to get to one, whatever it takes. You write very well, are you a professional writer?
    JulietBlue likes this.
  3. JulietBlue

    JulietBlue Peer Supporter

    Hi Tennis Tom,

    I really have been physically and financially exhausted. I think it was for those reasons why I started searching more online one day and kind of stumbled upon Dr Sarno and the books on TMS that I'm just really getting into. I'm trying to remove the rest of my doubts and just keep learning as much as I can about this everyday. What convinces me even more, is that I've had a very small amount of success so far but I think I still have a long way to go. I think I will pursue the TMS physician route. It just might have to wait a little while I get the funds for transportation together. I sold my car a couple of years ago because I could rarely drive it and it was just costing too much money to hold on to and of course, I needed what little I had to spend on more doctors and treatments. But I think it might be worth it for me to see one.

    Thank you so much for reading my story and for your very kind response and compliment. No, I'm not a professional writer but I always enjoyed it and at one point was thinking about trying to get something published. That unfortunately was just another thing I put off when the pain took total control of my life.
    Tennis Tom likes this.
  4. jaumeb

    jaumeb Peer Supporter

    I think reading the books would be a good starting point. And then trying to slowly rebuild your life. Socializing, trying to do things that you enjoy ...

    I learned about tms one year ago and I still have a long way to go, but I am happy to say that I am doing things now that would have been impossible for me in the past.
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  5. Lavender

    Lavender Well known member

    Welcome JulietBlue and thanks so very much for writing your story, As you continue along , you will read of others who have had similar experiences. It is a help to know that a TMS person is not alone and that life experiences have left their mark.
    Knowledge can be power.
    JulietBlue likes this.
  6. JulietBlue

    JulietBlue Peer Supporter

    Thanks @jaumeb. That's what I've been trying to do reading and trying to learn more each day. The socializing aspect is a little harder to get back into for me for a few reasons but I do want to get there. I'm doing a more in general in the past week then I have in a very long time. Patience is something I'm trying to work on as well with myself and healing. Thanks so much for your advice and encouragement!

    @Lavender, Thank you for reading my story. I have to admit, it was a little cathartic just putting everything that's happened down and sharing with others. It means a lot that it's being read. Every little piece of advice and feedback helps at this point. You're absolutely right, knowledge IS power and it really does help to read others experiences so far. I'm glad I found this forum.
  7. Lainey

    Lainey Well known member

    Juliet Blue,

    Juliet, your story is compelling. First off, I wish you a complete recovery. I think you are on the right track.

    As TMS develops it is in response to a part of our brain working to protect us from some emotional trauma that our minds are not fully aware of, creating a pain symptom in our bodies. You have evidently been through many, many traumatic events, both emotional and physical. I found personally that getting in touch with some of my early, emotional traumatic events and then processing them as to why they were problematic and what exactly is my emotional response to them was helpful.

    I did this by journaling, but others do not journal. I have been a writer all my life so find writing easy and comfortable. I did not keep these journals but destroyed them shortly after finishing them. I wanted this stuff OUT of my life. For example, I had an early life childhood trauma of my older brother beating me up, multiple times. When processing my anger I knew, on the surface, I was angry at my brother. This was true, but upon deeper reflection, after many, many times of recalling these events I realized that another part of the story that created anger in me was the fact that my mother, who was close by and present, did not try to stop these periodic abuses. I had anger at my brother but also my mother. I realized also, that her own inability to involve herself in conflict created this scenario. Eventually the ideal is to come to forgiveness for all of the parties in whatever scenario but this will take time and usually brings on lots of emotional draining. Some of these realizations allowed me to talk to my brain, and eventually offered some relief to the physical pain being felt. I agree that you should try to get in touch with someone who can listen to you and advise you since you have no close family or friends that may be available to hear you.
    I know there is online help within this forum, but do not know how it works. You may want to connect with this site for the help they offer.

    I wish you well. Keep us up to date on your progress.
    plum, JulietBlue and Tennis Tom like this.
  8. Tennis Tom

    Tennis Tom Beloved Grand Eagle

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  9. JulietBlue

    JulietBlue Peer Supporter

    "Eventually the ideal is to come to forgiveness for all of the parties in whatever scenario but this will take time and usually brings on lots of emotional draining. Some of these realizations allowed me to talk to my brain, and eventually offered some relief to the physical pain being felt. I agree that you should try to get in touch with someone who can listen to you and advise you since you have no close family or friends that may be available to hear you. "

    Thank you so much for your kind and helpful response @Lainey.

    I've been trying to do more of this lately and journaling has been somewhat helpful with this. I have had a couple of realizations so far and I hope more will be forthcoming soon. To be honest, I just keep having doubts and I know that's counterproductive to what I've been trying to do. I've made some changes in the last couple of weeks by just trying to do more and think more psychologically and those types of things and I think in general it's been good for me. But yesterday, had some bad pain in my head and face again and it's hard to look in the mirror and see inconsistencies from one side to the other and tell myself the pain isn't coming from that. At the same time, I know I have always held a lot of tension in my body from untreated anxiety and some other repressed emotions. I'm just still feeling somewhat doubtful and a little stuck I guess. I'm trying to continue to learn about all of this, but part of me is just afraid that I still won't heal somehow and I would have just wasted more time. If that makes any sense.

    I would really like to see a TMS therapist but Unfortunately, there are none in my state and I can't really afford to talk to one through Skype or phone. Instead, I'm trying to look for one who at least has experience with clients that have or have had chronic pain and are familiar with mind/body type therapy. I guess that's better then nothing. But I agree, I need to talk and it's hard to find anyone to talk to these days.

    Thanks for the list @Tennis Tom. I'm hoping I can see one in the next state over in the next month or so when finances allow. I just hope it's worth it and not another disappointment for me. I know I shouldn't think that way, but hard after everything I've been through and everyone I've gone to for help so far.

    I just want to lick all of this. I really do. So tired of the pain and anxiety. Some days lately I feel like I might be getting just a little ahead of it and it's working, and others I still doubt that I'm someone this could work for.

    I really appreciate all the feedback I've received so far. You are all so kind for taking the time.
  10. Lainey

    Lainey Well known member

    You are welcome. That is what this forum is about, giving support, seeing yourself in others stories, and offering personal revelations from time to time. I too have had moments of doubt, but I have had a couple of healing events that allow me to keep going vis a vis TMS protocol.

    In my understanding of TMS I think you are correct in believing that your pain in your head/face could come from the physical inconsistencies, but and this is a big BUT, in spite of our physical problems pain is not because of them but because our unconscious brain is trying to keep us from the awareness of other emotional and traumatic events and is using these sites (such as your face/head) as a means of doing so. When thinking about our pain we have little inclination to reflect on our past traumas in depth. The part of your brain that controls the oxygen to your muscles, etc. cuts out just a bit of O2 to these already injured parts and this creates the pain.

    I recently read a book called Back in Control, by an orthopedic physician, Dr. David Hanscom, in Seattle WA. I thought the book had some good info as far as scientific studies go for finding the parts of our brains that process pain, how and why they develop, etc. It offers the reader some insights into the workings of our brains and in my opinion solidifies Dr. Sarnos protocol of how to rid ourselves of these pain syndromes. Dr. Hanscom has developed his own protocol which has similarities to Dr. Sarnos, but he is still a 'surgeon' and still in practice, so in my opinion, waffles a bit about when this mind body protocol is to be used. Nevertheless, I found some of the info in his book substantiated my belief that I am on the right track with the Sarno TMS protocol.

    Good luck, let the forum know how you are doing,

    JulietBlue likes this.
  11. JulietBlue

    JulietBlue Peer Supporter

    "In my understanding of TMS I think you are correct in believing that your pain in your head/face could come from the physical inconsistencies, but and this is a big BUT, in spite of our physical problems pain is not because of them but because our unconscious brain is trying to keep us from the awareness of other emotional and traumatic events and is using these sites (such as your face/head) as a means of doing so. "

    I think your right about this. I've been trying to notice lately where I hold the most tension in my body. And I know this is something I've always done. My neck, shoulders, head and face. Once again yesterday, when I was trying to concentrate on learning about TMS and journaling, etc, my pain levels went down again. Not away, but down. This has happened a couple of times. The main problem I'm having lately, is that I still have so much anxiety. Really hard to deal with anxiety. I know my nervous system is still in such high gear despite the changes I've trying to make. I have this pattern lately of waking up in the middle of the night with only a few hours of sleep and right away the anxiety hits me. My mind goes into overdrive about all the things I'm worried about and beating myself up over. My stomach tightens, my heart rate increases and I'm laying there just desperately trying to get back to sleep and it only seems to get harder. Yesterday, my pain levels were down a bit but I noticed I had a lot more fatigue as well. I guess I'm trying to learn how to break the cycle. How to change this anxiety pattern. So far journaling and meditation, more exercise only seem to be helping so much here and there.

    "I recently read a book called Back in Control, by an orthopedic physician, Dr. David Hanscom, in Seattle WA. I thought the book had some good info as far as scientific studies go for finding the parts of our brains that process pain, how and why they develop, etc."

    This book sounds interesting, I'll definitely look into this. Anything that can help me at this point sounds great. I'm really trying to learn as much of this mind/body stuff as I can. I know I'm even hard on myself about this now. Trying to learn more everyday and to heal as quickly as I can. I need to remember that the time frame isn't as important. I also need to learn how to take back control of my mind and nervous system. I think that's going to be key for me in overcoming my life long anxiety and pain problems.

    Thank you again Lainey, so much for your words of advice and encouragement. You are a peach!
  12. Lainey

    Lainey Well known member

    Type in the name Hanscom in the search box and it will take you to some info on him and his writings. Also the help page can lead you to info on some of the other people who have written docs/books on TMS.
    JulietBlue likes this.
  13. MWsunin12

    MWsunin12 Beloved Grand Eagle

    Steve Ozanich would listen to Sarno's books on tape over and over. That might be a big help for you, so it slowly filtrates into your mind.

    I've been able to order his books on CD through my local library. They come from other branches and are put on a hold shelf for me. I hope that service is available to you.
    JulietBlue likes this.
  14. Lainey

    Lainey Well known member

    Hi again
    Juliet, in addition to what Marcia writes above, I came across a 3hour 24 min lecture by Dr. John Sarno on you tube. I would recommend listening to it and the repeating it as you like. He lectures much of what his book 'healing back pain' states in writing. I found it helpful and healing as well. You can locate it by searching for 'Healing Back Pain' by Snow Monster. It is data 8/2/2014.
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  15. pspa

    pspa Well known member

    If i may ask you to summarize how many different physical/structural diagnoses have you received and how many different areas have been problematic over the years?
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  16. JulietBlue

    JulietBlue Peer Supporter


    Thanks for your suggestions. I'm now looking into some of Hanscom's stuff. That's lead me to a lot of other names on the topic of mind/body healing as well. I did watch an interview with him and his story was very interesting. I did keep in mind that he is still a surgeon and some of his recommendations to his patients, like physical therapy seem to differ a bit with what I know of Sarno's teachings so far though.

    My doubts and beliefs seem to be shifting a bit from day to day but I'm almost completely convinced that I do have some form of TMS. I'm trying to be more mindful of the tension, anxiety and anger I hold in my body. I know there is a lot of it but not sure yet completely how to change it. Whether or not it has/had anything to do with my Thoracic Outlet and extra Rib, I'm not sure though. I think it may be an area that ever since my brain has been conditioned to still feel pain. I guess I'm just trying to figure this all out as I go along. Thanks again for your great advice.


    That's a great suggestion. Since my finances are an issue for me currently, it's been difficult to commit to purchasing all of these different books I want to read. It's like everyday I learn of more titles. I'll definitely check my local libraries to see if any of them have Dr Sarno's books on CD as well as some of the other books. I do remember Steve saying in his book that he did that and how helpful it was to him. That definitely sounds like a great idea, as well as listening to the video on youtube that @Lainey mentioned. I was watching and listening to many of his interviews on youtube at one point and was finding it helpful and even a difference in how I felt. But then the doubts started to come back and I stopped. Damn doubts! :(


    Thanks for your question. I'll try to summarize as best as I can so I'm not repeating the long saga of my first post. Here's the list:

    *Stomach issues/Gerd/Ulcer - still taking daily medication for this. Lactose intolerance as well, although not sure that can be a TMS issue. I just stay away from diary.

    *Anxiety attacks/ panic attacks. Forgot to mention there was a period in my early 20's when I started to get those. Have only had one panic attack around 9 months ago when the SSRI I had been taking for years suddenly stopped working for me. Stopped the med and tried a couple others. Too many side effects so now I take nothing for it. Anxiety still an issue I'm trying to work on but I'm no longer taking medications for.

    Problems with my right knee that I'm still having today. Had two scopes done on it about 10 years ago for chondromalacia Patella and Lateral Release for a "shifted" knee cap. Been trying to apply TMS mind/body techniques for this and the pain has lessoned somewhat recently but definitely still a big issue, especially with climbing up and down stairs. Last diagnosed with Hoffa's Syndrome a few months ago after new MRI. Knee cracks and pops and hurts when bended. Told I need PT which I haven't done yet when I found out about TMS.

    *Hypertension- been on medications for since mid 20's. Late 30's now and still taking daily. Said by my doc to be genetic from both parents.

    * Neurogenic Thoracic Outlet Syndrome - was diagnosed as having the extra rib anomaly that a small percentage of the population have. The pain started as chronic neck/shoulder/arm/face/head pain and migraines on my left side and gradually continued to get worse over years until I lost complete range of motion on the effected side and had constant migraine/facial pain and arm and hand pain and numbness. Had surgery to remove the compressing first rib. Problems with pain and weakness on the "surgery" side ever since. Was blamed on stemming from car accident where I had whiplash injury when I was younger.

    *Tendinitis and Bursitis of left Rotator Cuff diagnosed and had scope done prior to TOS diagnosis

    *Chronic neck pain that continues in the back and some tightness and pain in the front left side near where I had my first rib extracted slightly above my collarbone. I'm aware of holding my neck in tension and forward position a lot as well. Was diagnosed by chiropractors as having scoliosis in my neck or "lost the curve in my neck" and also "destabilization" of my spine due to one rib being removed. ( But I've read of well known athletes and musicians who have only had to have one of their 1st ribs removed and seem fine after without removing the other side.) This is not a surgery I would ever want to repeat unless I had no other choice like on my left side. It ended up with me being completely disabled for the last 6 years. (Right side doesn't seem to bother me much unless I'm leaning on my arm or hand too long and I get some tingling in it.) Been working on strengthening my left side recently, that left shoulder seems "dropped" more then my right ever since but I'm aware that I probably used it less as well since it felt so painful and weak. Still get pain that seems to radiate to my face and head. Pain seems to go into the back and top of my head as well. Been working with chiro for almost a year to get curve back in my "straightened" neck. Again, recommended I do PT for Postural, TMJ and Knee issues. Really don't want to but still on the fence about it, to be honest.

    *Chronic, almost life long insomnia. Have had issues sleeping since I can remember, basically.

    *Chronic headache, head and facial pain/ Chronic Myofasicial Pain Syndrome

    *TMJ disorder caused by chronic nocturnal Bruxism. So bad I've fractured teeth in the past.

    *Lower back pain/spasms for years. Back looks okay on xray. (This has been better lately after getting a couple of deep massages.)

    *Fibromyalgia - wide spread muscle tightness and pain and fatigue. Tough I've never been fully convinced I had this condition but diagnosed by a couple of Rheumos anyway.

    *Diagnosed with Trigeminal Neuralgia post TOS surgery. Facial, jaw, eye pain. Again, never fully convinced I had TN although I was given nerve medication for this. My doctor still doesn't know if it stems from possible "nerve damage" from my TOS surgery or from TMJ or what. Never can get any straight answers from these docs and they all have different opinions of course. Answer is always more medications.

    *Diagnosed with Depression due to years of chronic pain and disability.

    *Not currently diagnosed but I believe I've been experiencing some type of adrenal insufficiency for the last few months due to an oral Steriod taper it was suggested I try a few months ago for my knee pain and swelling by my Ortho. Got really sick while on it and right after the taper, only to very gradually improve the last couple of months, somewhat. Haven't felt the same since before I took them. Doc just kept telling me to " hang in there" while on taper even though I wasn't sleeping at all among other things. They made me feel horrible. Still dealing with some brain fog, memory issues, blurred vision, fatigue, loss of appetite and muscle pain. Also had cortisone injection in left knee right before I took the oral steriods. Not sure if it was one or a combo of these things that caused it.

    I think that's about it. Can't remember anything else significant anyway. I still can't believe this list when I look at it but there it is. Hope this helps answer your question @pspa.
    jaumeb likes this.
  17. pspa

    pspa Well known member

    Well i am no doctor. But take a step back. Can one person truly have this many different physical things wrong with them? Or is there a unifying psychogenic expkanation? That is, anxiety, somatization, tms, whatever name you prefer.
    plum likes this.
  18. MWsunin12

    MWsunin12 Beloved Grand Eagle

    @JulietBlue You are a young woman, still. You can get through this. Start planning the life you want to have. See it in your mind.

    First, be happy you found the TMS info at your age. Some of us didn't get it until later.

    Also, you have been bombarded with diagnosis for most of your life. I think your brain is in the habit of "expecting" ill health.
    I think everything you mentioned is part of a TMS symptom, so that's good news.

    Find compassion for yourself. Begin by thanking your body instead of feeling that it has betrayed you. It's easy to feel like we've been handed a bum deal.
    You can come back from this. Read success stories. Call your local library or look online. Most libraries are online now and you can order a book, if it's available.
    plum likes this.
  19. JulietBlue

    JulietBlue Peer Supporter


    Logically, a huge part of me feels like you are right about most of my other conditions. However, I still have a lot of doubt in regards to the surgery I had to remove my first rib (and scalene muscle that connects to your 1st rib and neck on one side.) Ever since, I still have this tenderness and tightness, sometimes pain around my collarbone and the front and side of my neck near where that rib was removed. It felt raw there for a few years and couldn't even touch it around that area. I feel like the muscles were shortened somehow and/or perhaps some scar tissue and I'm aware a lot that something feels like it's missing on that side. Well, because now there is. My struggle about this now is whether or not it could be TMS ( which I still think could account for almost everything else I've been diagnosed with) or from the surgery. I was told it was possible that the compression was going on for so long that there could be some nerve damage, in addition to the very kind of brutal surgery it is. It's not a pretty procedure at all. This is the event that disabled me completely. And that side/ shoulder has seemed weaker and more prone to pain still ever since. Pain that radiates into other places at times. Just going through a surgery like that and having something taken out in such a sensitive area can be a traumatic event in and of itself. But at the time, there really didn't seem to be any other choice in the matter.

    So in my original post, that's why I ask specifically if in my case, this problem could be from a major change in my spine, or TMS? There is a small percentage of people who have had this surgery and remain disabled or at the very least, never the same before they had symptoms. I've hesitated to go back to my surgeon for a few different reasons. There are other treatments they can try now such as botox injections in the area. I don't know at this point if I'm a candidate for that or not. I just know that last time I saw him, he was trying to talk me into having the other side removed. And I just don't think I could ever go through something like that again unless all other options were off the table and I physically couldn't move, such as with my left side. Like I said before, I still haven't come across anyone yet who had this particular surgery and feels like they might have tms as well. It's just not a common thing.


    "You are a young woman, still. You can get through this. Start planning the life you want to have. See it in your mind. "

    "Find compassion for yourself. Begin by thanking your body instead of feeling that it has betrayed you. It's easy to feel like we've been handed a bum deal.
    You can come back from this. Read success stories. Call your local library or look online. Most libraries are online now and you can order a book, if it's available."

    Thanks again so much for your continued encouragement MWsunin12. It's nice to have someone cheer me on. . I continue to at least try to live everyday in ways that I haven't in years and definitely trying to be more compassionate to myself. I do wish the TOS and resulting surgery didn't have to happen as I feel like that was the nail in my proverbial coffin. Some of my pain does seem better at times, particularly the constant headaches and facial pain which up until recently, I still was wondering if that was connected to the post surgery stuff as well. But still I feel like I have some unanswered questions in regards to that last surgery I had which was the one that completely changed everything for me like I said to @pspa above.

    Everything else I've been dealing with, I can see how all of that could be due to TMS even my knee ( 2 surgeries) which has been making it harder for me to exercise particularly when I need to bend it but I feel like I can deal with that so far. I just hope it gets better. I feel like I go back and forth a lot lately with the TOS surgery thing. I've been doing strengthening exercises to try to strengthen up that left shoulder and pick it up so it doesn't at least look so different then my right but the tenderness and tightness in that area still concerns me. Again, going a little nuts trying to figure out if it's because the surgery, if those muscles and nerves were just damaged in some way before or after and that's why I feel what feel in that area. They were cut and changed after all. In addition to the fact that I have a 1st rib on one side and not the other, along with a scalene muscle that is now on one side but not the other. It's like I can feel this difference and my muscles around that area are constantly trying to compensate. I've been trying to ignore it and besides the exercises, been trying to self massage the area in case this is from scar tissue or something like that especially when they get really tight and there's all kinds of sensations, tenderness and noises in that area when I move my neck. I've gone to so many different specialists trying to find answers for this one specific thing over the years and always it seems like I'm the first one they've ever encountered that has had this type of surgery. The only way I think I'll get any answers about this little known surgery is if I go back to the surgeon himself and ask. I'm just going to be very adamate that I will not have my right 1st rib and scalene muscle resected. That's totally out of the question.

    I hope I didn't just confuse you anymore. It's really hard to wrap my mind around all of this myself. I'm still reading a few success stories everyday and they do make me more hopeful. But I still would like to read at least one that is similar to my own in terms of the rib resection. If anyone reading this should happen to hear about or see someone who has, PLEASE let me know. It might be very helpful for me. Thanks.
  20. JulietBlue

    JulietBlue Peer Supporter

    I do recall reading in a few different sources so far that there is a lot of teetering in the beginning of this process with doubts and going back and forth in acceptance and etc. That's pretty much where I've been. Sometimes I go back and forth several times during the day. Just beginning the free TMS online study program as well. I guess maybe I just haven't read enough detailed info on people who have had such surgeries and recovered completely after. Maybe I'm just too early in the process; I don't know. Just wondering if the body and nerves, muscles, tissues, etc really can regenerate and come back from something like this after being so significantly altered.

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