I did have significant pain initially however not anywhere around my incision, but outside my ribcage because of punctured lung complication, it took almost 2 days of my complaining and me losing over 2/3's of my blood for them to believe that I was really in alot of pain and something was wrong. However, because of all the nerves that are surrounding the surgical area, my incision area was completely numb along with 4 other places on my arm and back of shoulder, so it was a few days for me before I felt the pain from surgery. But, everyone has different experiences. But for me, just about right after surgery the pain was so much better, range of motion better (3 days after surgery I could shower/wash my hair with far less pain after as opposed to prior), most of my symptoms and things that would generally aggrivate the pain pre-surgery were much less severe just days after. As long as everything goes well during your surgery which I am sure it will, you will feel much better after.

It isnt necessarily some magical recovery, it took me 2-3 months before I could begin PT and because as the numbness wore off the pain became stronger, also nerve regeneration is no cup of tea so Id def ask your surgeon about what to expext with that because it caught me by surprise and I had to call my surgeon...

Also, because you have had the symptoms for 4 yrs, 1 yr longer than myself before surgical help, physical therapy takes patience (I am not a patient person, lol). I basically havent had any use of my left arm for the entire 3 yrs so I had alot of atrophying in my hand up to my shoulder; so, its as if I have a new appendage that I have to rebuild the muscles and learn how to use again.

My advice, hoping it all goes great for you-be greatful for all the relief you feel (during rough times, just remember how bad the pain was pre-surgery), take everything in stride, nerves take a while to heal, make sure to find a great physical therapist that you trust (if possible, find one with experience helping pts after TOS surgery, it is rare...I changed my pt place after 6 wks because it didnt feel as if it was helping at all), and just do your best to get your life on track! (I have been on disability for over 2 yrs now and consequently lost my job, I have to work hard to see what my best is going to turn out to be and then work on finding a job once my pain is tolerable or perhaps even gone!

I wish you the best in your surgery, I am very happy for you that you finally found a surgeon who can help you. Patients dealing with the pain of thoracic outlet arent just dealing with physical pain but so much more, it is something that very few ppl know about, therefore it is very hard for ppl to sympathize because they have no way of knowing what we are going through, i mean half the medical community even fails to believe it exists so where does that leave the rest of the population. I have just always told my family and friends that, "I dont expect them to understand what I am going through, just for them to give me love and support to help me through this time." That way I dont get let down etc. Ok, well this is longer than expected. I suppose I just remember all of the questions I had prior to surgery, being scared and nervous, scouring the internet to find out all I could...I guess I am just trying to help protect you from the fears that come from the unknown and surgery, I can only do so much. If you do have any questions in the next few wks or after feel free to ask, I think it helps me to talk about it as well since like I said, noone really "gets it".

Otherwise, best of luck to you for your surgery! I hope you wake up feeling a great deal of relief immediately! After 4 years you deserve it.

Take care,

Kerry

O! I just read your post again....I just realized I didnt tell you what I was planning to write about in the first place! oops. You said that your surgeon stated that, "ppl wake up feeling as if something is different". That could either be the numbness, I still have quite a bit of that 5 months after surgery but its not a big deal. Maybe my "feeling different" was just the feeling of less pain. I dont necessarily feel as if I am missing a rib at all, if I didnt know that it was removed or that I had the surgery I really wouldnt know. One of the issues that for some reason I didnt notice until about 2 months after surgery is (my TOS was on the left, so I had my left scalene muscle and left 1st rib removed) if I am laying on my right side, whether watching TV or trying to sleep on that side, if I let my left arm hang in front of me, for some reason it feels as if it is missing some type of support. I either have to have my left arm rest upon my side or fluff up a pillow and have my arm rest on there. I had to have alot more of my posterior (in the back/rotator cuff area) scalene muscle removed than most tos pts do, unsure why-so that may be just a prob that me personally will have. if I let my arm hang, it feels like there is no support but that it needs support (whereas I can let my right arm hang however and there are obviously no issues) but I am struggling in PT to strengthen the back of my shoulder so that may be why I feel "as if something is different" just because my arm isnt that strong yet and if it hangs in any capacity it doesnt feel "right" yet. I did ask my surgeon if I would be able to tell if I was missing a rib and he said, nope. The first rib isnt structurally nec for anything except muscles i think. So I will be interested to hear how you feel after surgery and as you are healing, as well as if you feel as if something is "different" when you wake up in post-op.

Later
K

I've actually been dealing with pain, numbness, muscle spasms, etc. for close to thirty years. I'm very much hoping this gives me some relief.

Wow! What a long journey you had. I'm on the same road, please tell me who the Dr. is that fixed you. Did you ever see Dr. Gelebert at UCLA or Dr. Jordan? I'm meeting Dr. G this week. I can't afford Dr. Jordan any longer and he doesn't take my insurance.
I'm so very happy for you that you are on the road to recovery!!!

Best, Mitsy

Hello Mitsy,

The Doc that performed my surgery is Dr. Niren Angle. He is a Vascular Surgeon working out of Mission Hospital. He is incredible. Great bedside manner, knows what he is doing, answers any questions....I had neurogenic and vascular TOS so my nerves are regenerating at an incredibly slow pace....so even almost 6 months after surgery, if I have a question or concern he will get back to me right away. By the way, this is in orange county.

Now, if you are in the Los Angeles area, I havent had a consult with Dr Gelabert, but every dr/patient/med professional that I have mentioned his name to that knows of him says he is like the master of TOS! He sounds like an amazing dr. I have been researching TOS surgeons for 4 years now, I have heard of all of them in orange county, and a handful in each LA as well as San Diego. Eitherway, I do not know who the dr Jordan is, never heard of him or her, but I would def feel confident seeing dr gelabert. I am unsure of what testing you have had completed, do you have a definitive diagnosis of TOS? I dont doubt you that TOS is what you have, it is just so hard to get a surgeon to actually say "you have TOS" lol, its like the amazing race. Race around the country searching for at least semi friendly competent docs who know about tos and who will admit to the diagnsis, and if they cannnot help, hopefully send you to someone who can. Its challenging. I am interested in hearing your story. How long you have had the injury? What tests have you had done? Dr Gelabert is mainly at UCLA, I am unsure if you are seeing him elsewhere, but he works or worked closely with a Dr James Collins who is a radiologist, however he specializes in TOS. He definitely knows his TOS! However, there was a 4-6 month waiting list just to get an appt to see him. If you dont have tests that definitively show an elevated rib or compression of the nerves or arteries, dr gelabert may want you to see dr collins. Its a good news bad news situation. The tests he does help in the longrun because they help the surgeon-helps them to see exactly where the problem is, gives them a bit of an extra clue before surgery. Collins just does difff tests than others do, he takes great pride in his work and he spends alot of time with his patients....you could be there all day (I was there from 10a until 10p, lol) anyways, I am getting off track!

For TOS, it can be a vicious cycle if you find a great doc who says they can help but cant take your insurance, because good tos docs r few and far between, however I know quite a few now. I know from many ppl that dr gelabert is great. I would love to hear how your consult goes if it went well for you. one thing i learned is sometimes the drs and pts just dont click. just the way it goes sometimes..


ok, well it is almost 330am over here, I was doing some other work and stumbled upon your response. I truly was trying to give you good advice. lol. I can write another response after I get a bit of shuteye...

best of luck to you and your appt!

take care,

Kerry

I hope your appointment goes well tomorrow!! I also had to find out my diagnosis through several different doctors, vascular surgeon, sports medicine physician, PT, athletic trainer, and on and on.. Funny enough, my GP denied that I had TOS and tried to refer me to a psychologist because he thought it was "all in my head."

Thanks so much for this information. I reached out to Dr. Angle via his website and he responded to me tonight. I am going to consult with him after I have my angiogram with Ahn. I really like that Angle is in Orange County. He worked with Ahn and Gelabert at UCLA. The information I have gathered from Ahn and Angle is consistent and I am starting to believe Gelabert is a bit outdated in comparison. I still like Gelabert though as he was so nice!

i am dying to know who in minnesota you were going to fly to since i live here and need desperate help!

thanks!