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Originally Posted by Linschmid3
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
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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