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.