Tarlov Cysts

[Beach1969]

Hi there. Has anyone had any experience with Tarlov Cysts and TMS? Have been dealing with relentless pain and spasming for over a year in my glute and leg, nerve pain, etc. MRI last summer revealed 2 tarlov cysts in my sacral spine. Most times asymptomatic, but for some symptomatic. A basically benign condition, except for those who are symptomatic, where the literature says it can be pretty painful. It is considered a
"rare disease" and so there are only a couple of docs in the country that provide surgical treatment, which is not the greatest of options for a number of reasons. I have been putting off consultation with one doc, because to be honest, because I am sure he will recommend surgery and I am so not feeling good about it.
I have dealt successfully for years with TMS in various areas, usually draw my attention to Sarno's principals and what ever the symptom is (ex: Plantar fasciitis) it dissipates. This one however has me completely thrown And mentally it has been hard to put myself in the space I usually am able to put myself in to apply the principals that have so worked for me in the past.
I am definitely dealing with life stressors, only child caring for my 90 year old mom who i am very close with, is still fairly independent but still requires my assistance with meds, doc visits, food shopping, etc due to mild dementia. Teen still at home, and I have cut back on work to be available to my mother, so there is some financial stress. Sounds like the perfect TMS storm, but the diagnosis has me spooked.
Sorry so long winded!

 

[JanAtheCPA]

Hi @Beach1969, I can tell you my story about accepting the need to have surgery in one instance, while I'm still avoiding it in another instance.

TL;DR: Sometimes, accepting medical intervention is the right thing to do. Also, it depends.

Also, having had several female relatives who lived to 90+, I became resigned some years ago to the reality that thanks to modern medical science, with so many of us fortunate enough to survive past middle age, our physiological processes just don't work quite as efficiently as they used to, and we end up dealing with things like cysts and growths and other inconveniences, some benign, some not so much.

At around the time I thankfully qualified for Medicare in the US (at age 65, five years after my TMS recovery in 2011) I discovered an odd small nodule on the outer side of my left ankle, in the depression next to the Achilles tendon. It behaved like a ganglion cyst, because it was extremely nervy and painful if it inadvertently got tapped ever so slightly, but otherwise it caused me no problems at all, so my doc and I agreed to wait and see. Unfortunately, it kept getting bigger and started getting unexpectedly hit more easily. Each time that happened, I would gasp at the sudden brief but intense pain, even though the "hit" was almost nothing, such as slightly touching the edge of a chair leg if I was wearing skimpy sandals - that's how nervy this thing was. I wasn't careful because it was so easy to forget about it between incidents, but they became more frequent as it grew.

So my doc sent me to Ortho, where I got my first and only MRI. The nodule was determined to be a tumor of the nerve sheath, (benign in my case) called a schwannoma. My big-city HMO (Kaiser) has plenty of surgeons, but surprisingly they referred me out-of-network to a surgeon who specializes in removing these tumors and working close to the Achilles. He warned me that there would be some loss of feeling on that side of my ankle and maybe part of my foot, but that my mobility would not be affected. So I agreed to the surgery. I was pretty nervous, as it was the first time I'd had general anesthesia since I had my tonsils out at age 5 (my only other surgery, to insert pins in my mildly fractured femur after a 2008 biking accident, was done with a spinal block and a bunch of Demerol) but everything went smoothly and I healed fast. I did experience some numbness for a while, but eventually got back most of the feeling along my foot. There is always a weird bit of numbness on the outside of the heel, which interestingly sometimes gets worse when I'm stressed.

I had no hesitation and no regrets. Opting for that surgery was definitely a good choice which clearly improved my quality of life.

However, since then, I have been dealing with a hard cyst (I forget the type, it's in my records somewhere) on the "working" side of my right thumb, at the bottom of the pad, just above the joint. This has become bigger and more annoying over time. The hand specialist at Kaiser said that the surgery to remove it is kind of like bunion surgery - very painful, with a long recovery and a pretty significant chance of recurrence. I confirmed more about this myself after the consultation. The cyst itself is not painful unless it gets directly irritated, which happens a lot since, you know, I kinda use my opposable thumb all the time? But I can't really say it's something that is significantly affecting my quality of life, and it also seems to have stopped getting bigger after several years of growth, which is a relief. It's annoying and aesthetically unappealing, although probably unnoticeable even to people I spend plenty of time with.

So in this case, I kinda hate it, but the surgery just doesn't sound like it offers enough - if any! - QOL improvement to offset the downsides.

So look - obviously this has to be your decision, but I will always advocate for getting the medical consultation. You need to get the information and then do your own research. Avoiding the consultation out of fear of a doctor recommending the surgery is just a form of repression. It's dismissive of the power you have to know what's right for you. It does not bring resolution, it simply prolongs your uncertainty and doubt and inner conflict.

You've already received an indication that the condition is not dire. What you need now is more information about the chances of achieving a significant improvement in your quality of life compared to whatever downsides there are with the surgery. This is all doable.