My family dr thinks I have Fibro...can you have Fibro and TOS at the same time? I guess what I'm asking is, are they related?:confused:

I've been told that I have it. I think that TOS causes a lot of other things. Irritated nerves can affect your whole body, over time. I've read posts from others saying this, but they don't post much anymore.

[QUOTE=Nellyzen;1042527]My family dr thinks I have Fibro...can you have Fibro and TOS at the same time? I guess what I'm asking is, are they related?:confused:[/QUOTE

I believe that each persons situation can be different however after researching Fibromyalgia after my doctor explained to me about what I have been thru and ongoing problems now with more neck pain, body wide nerve pain, fatigue, etc. (and this is 3 years post TOS surgeries with complications) my situation is definitely post op chronic nerve damage because the nerves were over stimulated from the 3 surgeries the nerve pain I have is amplified compared to what a person would normally have.


After reading the info that I found online about the theory of the positional cervical cord compression being a cause for Fibromyalgia "symptoms", It could likely be the cause of some TOS "symptoms" especially when neck pain is one of the symptoms. I found after watching the 2 videos and reading the research that Dr. Holman presented to be so interesting and thought that this certainly could be related to TOS and who knows probably other conditions.

It is frustrating to know that problems not seen on a Neutral View MRI can actually be seen on those 2 addtional views (flexion & especially extension), but are not usually ordered.

The videos are a bit lengthy but I have watched them several times and read and reread the research paper & website online and it to me is a possible relation to TOS also.

chloecasy

Well, went to the chiropractor yesterday. He didn't think I had a pinched nerve (which is consistent with my MRI results), but did say that I was one of the ten worst cases he'd seen in 25 years of practice. I think because I've been rehabbing and eventually having a left shoulder surgery has left me out of balance due to over compensation on the right side.

I walked out of there feeling great, but alas, as evening approached, the same ol' symptoms creeped back in. Another night of battling pain demons and trying to sleep on my back without great success.

It could be that this may take a number of attempts with the chiropractor. He did say that my scalenes are taking on too much of the brunt because of the way I was aligned. Not much comfort in the short term.

Will go back for another adjustment Monday and see if things improve.

All eyes now towards an appt. with Dr. Donahue where I will want to get the botox shot on the fast track. That's probably easier said than done. He'll probably want to redo CT scans and circulation exams and, the insurance approval is a pain if I remember correctly.

KY

Not to make this my daily log, but I met up with Dr. Donahue today. Actually, he called me last night to start. Said a surgery had to be rescheduled so he was concerned he'd be short on time today so wanted to do some legwork prior to my arrival today so we weren't pinched for time.

I mean, how great is that? Most Dr's I know would have you show up after driving 2 hours only to tell you that you have 5 minutes with the Dr.

As usual, I was impressed with his memory of my specifics, the care he takes with every detail, and just his overall approach. It's impossible not to feel comfortable and trusting in this guy.

Anyways, he feels that botox is the best route here...especially considering how well it worked on my right side.

What was alarming is that Dr. Donahue feels that based on my scans that I have a very high level of compression going on. In his words, most people who match my unique anatomy end up having the surgery. That said, there's something about me that makes me get away with it and enables the botox to work. Still, this is scary. I wonder if this is really a ticking time bomb where I inevitably need to have the surgery. Could be in a year, five years, or who knows.

Will keep folks posted on botox and reaction to it. Hoping it can get done in the next week or so.

Thanks for the update. I am very interested on Donahue's take on the Botox.

I don't understand why repeated BOTOX can't be used to atrophy the scalene muscles so that there is no need to remove them???

I asked the same question.

What he has seen is diminishing marginal returns. On each successive use of botox, it works less and less. Eventually you reach the point where it's not worth it anymore. I think he said he had one patient that just refused surgery and they did botox 18 TIMES!

That's interesting.

I met someone who had the exact opposite experience. Each time she got Botox, she had longer and longer relief periods. Of course, she was doing PT and who knows what along with the botox....

I was diagnosed with fibro after the tos started. Savella works great with fibro. Maybe after my rib resection I won't have fibro any more?!? Okay, not likely, but that would be cool, just saying.

What kind of "scans" did he do?