Originally Posted by jkl626

I posted a link to a couple of dr's in your other thred.I also have neurogenic TOS and also have started to look into surgery. I have done alot of research, and have read numerous papers on TOS as well as gaining alot of info from this forum. I had a BPMRI which helped confirm my initial diagnosis,but all it showed was neural edema. I would wait until you find a surgeon before you have the MRI because each surgeon has particular tests that they like.

the The Vascular Dr's also operate on Neurogenic TOS. In L.A. All 3 Dr's that do this surgery are vascular surgeons. There are only a few neurologists in the country that do scalenectomy only and maybe nuerolysis) (Dr Brown in San Diego, Dr. Sanders/Annest in Denver) but if you need the ribs taken out you will probably need to go to a vascular surgeon anyway because there are blood vessels and veins involved.

There is a member that had a scalenectomy only but then had to go back for a second surgery when they found the rib impingement because the first dr. wasnt a vascular surgeon.
I'm sure there are some other people on this forum who have had cervical ribs taken out who will weigh in.
if you see Dr. Fantini in NY let me know, I have family in NY and would consider going there.I am still taking the PT route for now, I found a really good PT that is helping me now--- finally

Good Luck,
JKL

Originally Posted by parbie

Hello all,


I'm new to the forum. Been reading for the past few days. I am copy pasting my story below from another thread. Trying to find more info on anyone with neurogenic TOS (and/or having cervical ribs which I know is more uncommon) who has gone or is going to soon be undergoing surgery. What approach was used? And if you didn't have the ribs removed and only a scalenectomy, why did you choose that route?

My Story:

I have bilateral cervical ribs, right one greater than the left, I just found this out recently however have been suffering from undiagnosed TOS for a year. From the research I have done, the best way to ensure that you don't have recurrence of TOS is to have the cervical and first rib resection along with scalenectomy and brachial plexus neurolysis to get rid of the scar tissue in the plexus and it should be done with the supraclavicular approach. My symptoms have been right sided until recently, I am now also having pain in my left side but not nearly as bad as my right. I have done PT, been on every medication you can think of, several trigger point injections, epidural injection, a nerve block and ablation of the medial branch nerves and have seen 12 doctors over the course of the year since I had an injury from weight lifting. Up until now my doctors were focused on my neck and the normal MRI and nobody thought to order a neck xray or CT scan until a week ago (had a CT scan showing the cervical ribs). My pain and numbness in my arm shoulder and hand were ignored until I started PT 3 months ago and then found out I have a labral tear in my right shoulder as well. I have seen 3 orthopeadic surgeons and the last one told me the tear is too small to be causing the pain and it is definitely TOS. A neurosurgeon (3rd one I have seen) ordered the CT scan. My next step is getting a scalene block to confirm my diagnosis, but I already know from my history and symptoms and physical exams that I have neurogenic TOS and am done with conservative treatment. I am also considering getting the NeoVista MRI to double confirm my diagnosis. Has anyone had this done/think it is necessary? Also, I am in New York and have only been able to find one thoracic surgeon specializing in TOS who I am definitely planning on seeing after my scalene block. But can anyone tell me if it makes sense to see a vascular surgeon since I have neurogenic TOS? Or only a thoracic or neurosurgeon? In that case, I am stuck with this one doctor, because the rest in NY are vascular. I am also willing to travel to SF and possibly LA or TX since there is a limited number of experienced thoracic surgeons in general from what I've found so far. Any input would be appreciated.

Originally Posted by Catalinagarciac

I live in Colombia, i am 25 years old and have TOS Symptoms since february 2012. I have cervical ribs in both sides, but I'm only symptomatic in the right side as the right cervical rib is bigger. My Symptoms include reynauds syndrome (white hand, reactive to temperature changes and position changes), pain and lack of strength In the righ arm and hand. I had a nerve block 4 days ago with the purpose of confirming mi diagnosis (neurological TOS) and my hand and arm improved in a 65 percent and the pain is completeley gone, which, according to my vascular surgeon means that I need surgery (because the diagnosis is confirmed). As you I was also not so sure of getting surgery with a vascular surgeon, taking into account my TOS is not vascular, but neurological (only nerve compression). It s relieving to read your case! I has never seen one so similar to mine!

Originally Posted by jkl626

Hi, Can you give a few more details about the nerve block.Was it a Brachial Plexus nerve block? How long is it supposed to last? I am considering it for my arm and hand nerve pain but I havent been told that it was used as a diagnostic tool. I have nuerogenic TOS but not cervical ribs. Thanks,JKL

Originally Posted by Catalinagarciac

I live in Colombia, i am 25 years old and have TOS Symptoms since february 2012. I have cervical ribs in both sides, but I'm only symptomatic in the right side as the right cervical rib is bigger. My Symptoms include reynauds syndrome (white hand, reactive to temperature changes and position changes), pain and lack of strength In the righ arm and hand. I had a nerve block 4 days ago with the purpose of confirming mi diagnosis (neurological TOS) and my hand and arm improved in a 65 percent and the pain is completeley gone, which, according to my vascular surgeon means that I need surgery (because the diagnosis is confirmed). As you I was also not so sure of getting surgery with a vascular surgeon, taking into account my TOS is not vascular, but neurological (only nerve compression). It s relieving to read your case! I has never seen one so similar to mine!

Originally Posted by jkl626

Hi, Can you give a few more details about the nerve block.Was it a Brachial Plexus nerve block? How long is it supposed to last? I am considering it for my arm and hand nerve pain but I havent been told that it was used as a diagnostic tool. I have nuerogenic TOS but not cervical ribs. Thanks,JKL

Originally Posted by parbie

I have started to get symptoms on my left side as well since April 2012 and it's only getting worse. I have decided to go ahead with surgery at the end of August. May be doing both sides, but right side first. But I tried PT (not TOS specific) twice before and now am doing PT more for TOS before going for surgery, but I plan to book everything and most likely will go through with it. Maybe you should give PT a shot first? Many people have gotten better with the right PT.

Originally Posted by Catalinagarciac

How do I find specialized PT for TOS? how long should I try PT before having surgery? my surgery is programmed for the 28th of July. Thank you!