I'm a 29yr old female that was recently diagnosed with neurogenic TOS after suffering 6 years going to doctor after doctor and specialists,. My symptoms got worse the last few years and recently in July. Symptoms were severe shoulder and neck pain on the right side, numbness and tingling in arm hands and fingers, discoloration and swelling in fingers, unable to lift heavy items or lift my right arm all the way above my head, lose my radial pulse when arm is above head. After all the years and numbers of tests done, MRIs, X-rays, CTs, EMGs , dopplers, ultrasounds, nerve studies every single test came back normal.

Anyone who has gone through this know it's tough but don't get discouraged even though tests came back normal. I was told by a few that I need a shrink and that it was all in my head, but deep down inside and my gut feeling I knew something was wrong. I felt a sigh of relief when The doctor I saw told me the news and looking forward to a better less painful life.

My surgery is scheduled for November 25th just under 3 weeks away. My vascular surgeons name is Dr. Enrique Criado who is through the Uniiversity of Michigan and is told he is the best in the state of Michigan for TOS cases. I've never had surgery before abit scared about it. I was told they will be doing a first rib resection with neurolysis and scalenectomy. I understand what is gonna happen with the surgery I'm wondering how the recovery is and what the first week is like. Any info helps thank you .... Lindsey

Hi Lindsey,

My story sounds exactly the same as yours, 6-7 years to find diagnosis and the symptoms all match up, for me both sides were affected.

I had a 1st rib resection & scalenectomy on my right arm back in April this year, I've got my left arm doing in 2 weeks time. My Left arm was the worse affected, but my surgeon advised me to have my dominant hand done first and see how I go, by the 10 week mark after surgery I decided I definitely wanted the other side done (despite not being fully healed, but I was symptom free).

For me the recovery wasn't anywhere near as bad as I anticipated, however the first week was both the hardest and the most surprising - for the first 3/4 days after the surgery I was in a lot of pain and stayed in the hospital on an IV drip for painkillers, I was discharged after a few days and went back home. The day after the operation I could only move a few fingers of my hand, and each day the range of movement got better and better, 7 days post op I could get my arm above my head with not a lot of pain. Keeping up with the physio exercises was crucial, I could feel a bit more movement each day and a little less pain.

Expect uncomfortable sleeping for the first week or so, i'm a side sleeper but now find sleeping on my back more comfortable as I spent a week forced into that position by pain, I kept my self flat on my back with a pillow under my elbow to keep my arm elevated which was more comfortable.

I spent 3 weeks off work just resting as I was unable to drive myself to work, I was able to drive again after 3 weeks so started back at work. I was still taking painkillers for a couple of weeks after that but I couldn't face sitting at home for any longer.

For the first two months or so, I had to change the way I do everything, being right handed it was quite difficult to use my arm as it felt so weak, I was living as a leftie for a few months. The strength slowly came back but I made sure I didn't lift anything heavier than 10pounds for the first 2 months.

3 months post op I started returning to sports, and found myself climbing/cycling/running as normal, as my symptoms had dissapeared from the right arm I felt a lot better, albeit weaker. Building strength back up took a while, but I was happy when I could finally manage a single press-up without any pain or tightness.

I'm now 6 months post op and I'd say I was fully healed and stronger than before, I do however have a numb patch around my armpit area and the back of my tricep but the surgeon said this was completely normal and could take some time to disappear (if it ever does). I get the odd shoot of pain or strange feeling (like my symptoms were coming back) but apparently again, this is normal and can take a few years to stop. I'm finally able to lift my arm above chest height with no ill effects.

Going in for 2nd op on the 19th of this month, so hoping recovery is the same and I can look forwards to being back to full strength and symptom free in both hands by next summer.

Feel free to PM me if you want any more info.

Thanks,

Jonesy

So glad to have you here with us, but sorry for the reasons why. I can really relate to your story - a lot of us had to go through the "TOS shuffle" for years, seeing doctor after doctor, submitting to test after test, to finally receive the dx of TOS and a promise of recovery with surgical tx.

I assume your surgeon performed a scalene block on you to confirm the dx. Is that correct? If not, how did he arrive at the dx, if you don't mind my asking? Do you have "true" neurogenic TOS or "disputed" neurogenic TOS? That is a distinction with a difference, only because if it is the former, then proceeding to surgery straight away makes sense. If it's the latter, however, then in my experience, most of the top TOS docs would have you try a couple of other things first, just to see if your sx can be managed nonsurgically.

For example, some of us have had good results from Botox injections into the anterior scalene, subclavius and/or pec minor muscles. The effects can last for several months at a time. Another avenue, often complementary to Botox injections, is a course of the "right" form of PT - meaning one using a TOS protocol, NOT the "no pain, no gain" modality most PTs are trained to use. Lastly, some TOSers have had amazing results using chiropractic care to manage their sx and avoid having to have TOS surgery.

Lindsey, I know you are excited to have answers at last, and I am certainly not trying to discourage you. It's just that this is a risky surgery with no guarantees that it will make you better, and it has a long and difficult recovery for most of us. You've come this far, and there is no reason to rush into surgery without trying some other stuff first.

I wish someone had said this to me when I (finally!) got my NTOS dx in 2005. As it turned out, even though I went to one of the top TOS surgeons in the country, my surgery failed and I am still working to get back to where I was BEFORE the TOS dx. I don't blame anyone; it's just the nature of the beast!

Please just consider taking some time to enjoy the holidays, learn more about NTOS and who the best healthcare providers are in your area for this blasted disorder (you're going to need a TOS-savvy PT whether you need the surgery or not), and maybe try some of the noninvasive or less invasive tx options before making such a major life decision. You're so young!

I wish you the very best. Keep posting here and let us know how you're doing, OK? We're here, if you have any questions or concerns. Take care!

Alison

Thank you for replying and giving your opinions I'm taking all that into consideration, yes, I have exhausted all other forms of treatment physical therapy nerve block injections, epidurals, chiropractors, I know the surgery has a risk of not helping or healing but at this point I'm willing to take it. Ten days til surgery started getting things together, I've got a good support system right now and committed helpers and family after the surgery. I will keep you updated'


And thank you again for all your support

Lindsey

Have you asked your surgeon how many tos surgeries he has done and in what timeframe that would be (100 in his career, five a year for five years, etc). Imo, it is imperative to have a surgeon who is highly experienced with this particular operation. I am not saying your doctor isn't, I don't live in MI, don't know the docs there.

I would plan for at least 3 months off. It all depends on your body and how you heal.