Thoracic Outlet Syndrome questions/stories/answers
 

Hello All,

I am reaching the end of my TOS treatment journey/experience! It took me over 2 years and 50 doctors to find a surgeon who was brave enough to actually admit that I was suffering from TOS after being turned away from over 50 doctors whom some even admitted that I may have TOS but that it is too difficult of a surgery so they didnt want to get involved....Others told me a variety of reasons why it wasnt TOS when I have x-rays and MRIs showing an elevated 1st rib that was compressing my nerves and arteries...

I tried physical therapy for over a year, botox injections, scalene blocks, stellate ganglion blocks to check for RSD (due to severe nerve issue symptoms) and anything else that each doctor I saw could think of! I travelled over 120 for a few months on a weekly basis, I was about to travel from California to Minnesota where they have one of the largest groups of surgeons who specialize in TOS and Brachial Plexus injuries merely for a consult hoping and praying that something would come of it. Just as I was beginning to make my travel arrangements (I had everything riding on this trip because after 2 yrs and double digit drs and innumerable tests at this point, I was just about broke using the remainder of my savings on the flight and hotel)-anyways, as I was getting ready to finalize my trip to Minnesota, my mom had found one doctor (a vascular surgeon) that I hadnt seen in the 120mile radius that I had been searching, she had found a doctor that ended up being the answer to my prayers!

I had the rib resection and scalenectomy and immediately my pain level was reduced by more than half and as I have been working with PT, my arm is getting stronger and my pain is going away! I am curious about the experiences and journeys other people had whether you have had surgery, or if physical therapy was the answer...I am interested in whatever you have gone through and what worked for you and what didnt. As well, how long you have had TOS, how long it has taken to get some relief, possibly complete relief., etc...

Hope everyone is feeling better lately! Take care!

Kerry
:eek::eek:

Hi, Kerry! I was diagnosed by a thoracic surgeon. I'm going to have surgery soon and hope to have as positive an outcome as you've had. Best of luck in your recovery!

So who was the lucky doctor in the end who saved you ?

Surgery is tomorrow for me.... Yay? Supposed mixed feelings are normal.... excited to finally get to the other side of pain. Healing. :grouphug: Really enjoyed reading others stories and all the tips for recovery!!!

I wish you the best, and a speedy recovery!

I was told by my neurologist that I had "something wrong", and 4 years later and about a dozen dr's and a un-needed ulnar nerve entrapment release surgery, my neurosurgeon took a x-ray and found a cervical Rib.

Then I went for PT and they tested me for the lose of my pulse in the arm and when I lifted my arm above my head, it would be lost.

So I found out thru a combo of a neurologist,neurosurgeon, and PT.

I see the surgeon at The University of Michigan on March 7th,It is a relief to finally know what is causing my issues. Most dr's don't look for TOS or know what it really is, let alone treat it.

Good Luck

Hello, I am happy to hear that you received a diagnosis as that sometimes can be the hardest part with TOS; a Thoracic surgeon sounds like exactly what you need! I am very happy for you! Ill keep you in my thoughts, I am sure that the surgery will go great for you. Prior to my surgery, I once read from someone that immediately once they woke up in recovery after their rib resection, they felt immediate substantial relief. That was difficult for me to believe because I was nervous about the surgery and all. However, I found that statement to be entirely correct! (Although I did end up with a slight complication from the surgery, a pneumothorax, which was completely easily fixed...)-after the decompression and scalenectomy I could feel the relief! I could tell that there wasnt the compression that I had been feeling for yrs causing pain anymore. It was amazing to me that something that had caused so much pain for so many yrs could be fixed and given such relief with just one procedure and so short after!

My point being, I dont know if you have already had your surgery, but if you havent-please take peace and solice knowing that when you wake up you will feel like a new person and will feel so much better as if just with a snap of your fingers! :D I do hope that your surgery goes great! Please let me know how it goes if you dont mind. As well, if you have any questions I am here. Feel free to contact me either here or via yahoo messenger.

Take care,
Kerry

Hello, I was actually the "lucky" one by far! But, I was actually originally diagnosed by an orthopedic shoulder doc, but for a variety of reasons I didnt have him do the surgery. Then less than 2 wks later, when I thought I had seen every doctor possible w/in 200 miles, my mom had found a Vascular Surgeon that had just started working at a hospital down the street from me. He is incredibly knowledgable, has a wonderful bedside manner, and made me feel overwhelmingly comfortable with the surgery (up to that point the surgery terrified me but I needed it so bad). So, to answer the question, my surgeon was done by a Vascular Surgeon. I felt comfortable with that as well not only because he personally made me feel at ease with the surgery, but a rib resection and scalenectomy are high risk surgeries with respect to our vascular structures as well as nerves, specifically the Brachial Plexus. Vascular surgeons and docs that are used to maneuvering around tiny and incredibly fragile structures are great choices for this type of surgery in my book! But that isnt to say that other types of surgeons cant do an amazing job, throughout my search I saw many surgeons in a variety of specialties all whom had done TOS surgeries and had great track records; my case was so complicated it seemed to have scared off many docs. That is why I am curious what response other people are getting out there! :winky:

LOL, I guess I could have answered your question in a single word, but I tend to be longwinded...I do hope that I answered your question however!

Hello, I am sorry that it you have had to endure so many unnecessary tests and that you have been in pain in so long. You are correct, most docs dont look for TOS, some literally deny that it doesnt exist even though there is physical proof that it does. It definitely is a controversy in the medical world, that is why it intrigues me! I hope that it goes well when you go and see the surgeon in March! I wish you the best of luck, let me know how it goes!

Take care,

K :wink:

Thank you so much for your kind words, Kerry. I have surgery in a few weeks, so I'll keep everyone posted. The surgeon said that most people feel as though something is different in recovery. Of course there's significant pain initially, but I'm anxious to get this done and behind me! Thank you again.

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! :winky: (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! :D

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 :D
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.

hi
 

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." :rolleyes:

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!