Pelvic Floor Dysfunction after spine surgery

Hi All, I am new to this site and this is my first post. I’m hoping someone out there may have had similar symptoms and can give me suggestions, tips on what to do next

I had Laminectomy in Jan 2021 due to severe spinal stenosis from discs L4 thru L5, S1 closing off spinal fluid almost completely. First 3 months post surgery recovering with some pain symptoms but doing pretty well. Woke up one morning in mid March 2021 for no particular reason with severe burning in legs, back and extreme burning in vagina and rectum with lump feeling in each area. Follow up CT and MRI revealed 2 very large cysts that developed on my spine due to instability of spine most likely pre-Laminectomy. Surgeon did not recommend fusion first because I am very petite and thin. I went to several surgeons before making another decision on surgery and found a highly respected neurosurgeon who reviewed all files, spent quite a. bit of time with me and said spine was not aligned before surgery so after 1 surgery without spine being in alignment and no fusion, this would not be an unusual result. However he said that he was not certain that this new problem of vaginal and rectal problem was from cysts pressing on spine and we would have to wait until after surgery to see whether cysts removal were the cause.

I had a second surgery in June 2021 this time a redo of Laminectomy and fusion of L4 thru S1. This was a really difficult recovery. I was released from my surgeon in Jan. 2022. Spine was beautifully aligned, completely fused but still back pain and he believed vaginal/rectal issue was not from back. He thought I should pursue colorectal and Ob-GYN

I saw a colorectal doctor, nothing much to report on physical exam, had gastro doc exam, Obgyn exam and said no lump in vagina or rectum. Had really no thought what to do. I subsequently had a dynamic pelvic floor CT scan and showed a mild rectocele but no prolapse. Subequrntly went back to Obgyn after doing a. boat load of research on what this could be as I’m at my Witt’s end with burning and can’t do much at all and came up with possibility of pudendal neuralgia. She thought that was an excellent observation and sent me to uro GYN who thought I some symptoms for this problem and referred me to doc for further evaluation and possible block. I saw a second Obgyn too who thought this was a. Ery good idea as diagnostic.
It took me over 2 months to find on my own an Obgyn who referred me to an anesthesiologist/pain doc who did posterior pudendal neuralgia nerve blocks. No one I my area does these. Finally had it done in March 2022 as a diagnostic to see if I had relief. Nothing and the block actually made symptoms a little worse.

yesterday I had a caudal epidural injection in tailbone which they thought might help as the injection hits L4 thru S1 and some of the nerves toward rectum. So far have not noticed much of anything but it’s only been 1 day. Low back still very tight like a knot, ankles feel like big rings around them from moment I get out of bed. The vaginal/rectal burning is constant and I’m literally going nuts. I know stress and anxiety over it is not helping

I’m so so sorry for such a long e mail but I thought details were necessary to see if anyone might have/had this after spine surgery or otherwise.

I learned about this forum through a podcast and hope there are some answers

kind regards,
mspetite

 

Mspetite, so sorry you are going through all of this.
This forum does not address the physical structural issues you’ve been struggling with, but the mental and emotional causes of unexplained pain. That said, people with any type of chronic pain often struggle with these issues - the stress and anxiety.
My first thought is to try consulting with Dr. David Hanscom if you can. He was a spinal surgeon turned TMS Dr and has experience with both folks who needed surgery and those who’s surgical outcomes were not as planned. One of his clients has a movie out recently about her struggles with surgical outcome and her ongoing TMS recovery surrounding it. It’s called Love Heals, here’s Dr. Hanscom discussing her story: https://www.blogtalkradio.com/backincontrol/2022/04/13/discovering-how-love-heals (Discovering How Love Heals) This Dr. Hanscom’s website, his blog is full of insites. Here’s a directory of topics:
https://backincontrol.com/media2/podcast/ (Back in Control Radio)


Reading a book by Dr. John Sarno can help you decide if you actually have TMS - that the genesis of your physical issues are mental/emotionally driven is helpful - most people will resinate with at least some of his personality descriptions. These books also offer a completely different perspective on pain.

Lastly, check out the free resources on this website. There is a short program and a longer one. Both can really help with the fear and anxiety. https://www.tmswiki.org/forum/painrecovery/ (Pain Recovery Program)

In your case I think it might be important to consult with someone who understands both TMS and your physical symptoms. You can often do this via the internet.

Best wishes for a recovery!

 

Thanks Cactus Flower, I do know of Dr Hanscom. I heard him interviewed on a podcast that I listened to. I didn’t know about the movie and I will check that out.

I did also get Dr Sarno’s book Healing Back Pain and am reading it. I also listen to Nicole Sachs podcasts as she was trained directly by him. You probably know about her. I am just navigating this forum and it looks like there may be some people, programs here that can help me determine medical and or TMS.

really appreciate the information

Regards