Just found out I have TOS and need help
 

I have been dealing with the symptoms ever since I fell 17 feet off a roof back in 2006. The numb in my right arm and weakness has gotten worse over time. Well In 2008 I went to a Neurosurgeon and he said that it was ulnar Nerve Entrapment, so I had the surgery to release the sheath around the nerve. Well No relief, so I keep going to the Dr's Neurologist,Neurosurgeon, and after many test and visits I have been told I TOS and I also Have a Cervical Rib in the right side.

Well I went To a Cardiovascular Surgeon that is One of only 7 i found in the state that deals with this cervical rib issue.

Well This was on Monday and he said he wants me to do Physical therapy. Well Monday Night I wake up and my right arm is Numb, Pain in my neck and right side of my upper chest.

So I go to PT today and as she is doing my assessment, she has me put my right arm above my head and turn my head to the left, and she said as soon as I turned my head I lost my pulse.

So I call this surgeon back, who said if it gets worse call him. Well he calls me back a little while ago and politely tells me there is nothing he can do and just keep going to PT.

Well I called around a few different cardiovascular surgeons and they all said to go to the above mentioned Dr or One at The University of Michigan(he is know for his surgery), well I'm on disability so I have medicare and medicaid, and they don't take it.

I have been dealing with other injuries and getting treated with this insurance is like finding a Million Dollars laying in the middle of the road. As long as its office visits or test they take me all day long but getting surgery is not happening.

The scary thing is, this TOS now that they have pinpointed it has been going on since 2007 and only been getting worse.

So does anyone know if there are other dr's(what field) that Remove Cervical Rib's

Thanks for letting me rant on a new Board:D

Rich

Dont know exactly where you are from, assume michigan, but i had mine done at the cleveland clinic by dr daniel clair. he did a 1st rib resection, i dont have cervical ribs but did have arterial compression. good luck, i know how aggravating this tos can be.

Hi Rich
 

[I am so sorry you have this problem. The injury and TOS I know are hard to deal with. I am glad you found Neuro Talk. There will be others along to help you with direction in dealing with this. I do have a suggestion. I received a cervical fussion because I went through a hospital advocasy person. She put me in touch with a physician who would greatly lower the cost. I didn't have health insurance at all. Now I have medicare/medicaid too, and you are right, there are doctors who will not see you with that condition and be willing to take you on as a patient. The Gov. is not giving them enough in payments to take your case. I would go to the hospital advocasy person, at the best facility you can find. Ask for help, and tell them of your situation. They may be able to help you find a doctor willing to accept you as a patient. Then write him a letter and actually ask him for help. NONE of my doctors excepts medicaid, therefor I actually owe 20% of my costs through medicare. NONE of my doctors are requiring me to pay the 20%. I told them the truth about my circumstances and they dropped this issue and still kept me on as a patient. My pain specialist actually gave me infussions until I received medicare. Help is out there, even with the medical conditions you have. You just have to be persistant, and be willing to ask for the help. I really hope you find that special physician willing to do for you, what can be done to make your life better. I really wish you all the best. ginnie

Thanks for the Welcome and Advice. Since I am one to not sit around and wait, I called my insurance company and told them that I needed to see a Out-of network dr and they said it wont be a problem(just need the dr to call and get pre auth.

So I called The University Of Michigan and they have ONE Dr that treats this. It was great to speak to someone that knew what I was talking about, when I was giving all my info.

I have to have some reports faxed over to him, and then they said they will make the appointment but she said that from what I was describing, the Dr will want to see me sooner then later.

I called 3 other dr's (thoracic) today and they all said call U of M.

This is just one of many issues I have from My fall, but this one is by far the scariest.

I will be reading and posting on this site a lot, because it is nice to speak to people that can relate to what you are going thru.

Thanks and God Bless

Rich

Most people who have the surgery have it done by a Vascular Surgeon. Is it Dr. Criado you are seeing at U ofM? Dr. William Brown has also been mentioned a few times with positive reviews on this site.:


O. William Brown, MD
31700 Telegraph #140
Bingham Farms, MI 48025
Phone: 248-433-0881
Fax: 248-433-1628

Yes Dr O. William Brown is the dr that i was referring to when I said

"Well I went To a Cardiovascular Surgeon that is One of only 7 i found in the state that deals with this cervical rib issue.

Well This was on Monday and he said he wants me to do Physical therapy. Well Monday Night I wake up and my right arm is Numb, Pain in my neck and right side of my upper chest.

So I go to PT today and as she is doing my assessment, she has me put my right arm above my head and turn my head to the left, and she said as soon as I turned my head I lost my pulse.

So I call this surgeon back, who said if it gets worse call him. Well he calls me back a little while ago and politely tells me there is nothing he can do and just keep going to PT."


So I m going to see Dr. Criado (hopefully), I faxed over all the paper work and he is going to review it and set up a appointment. It was nice to speak to some one who was aware of what I was talking about and showed concern when I told her my symptoms

HI Rich
 

Please do your home work and ask away questions with the surgeon before any cutting. Be wary of the promises and make sure every thing is written down. We are getting so many patients who had surgery and the surgeon is releasing them too soon and or telling them they are an unusal case and I cant help you. They arent recieving post surgical protocol or in worse shape with no where to turn to.

It's difficult to know what the surgeon's success rate is but make sure he is highly trained and has an abundance of success, has a post surgical protocol of physical therapy, swimming, medication regimne, etc.

Before You Consider Surgery...
 

As an 18 year old tennis player I have had TOS for 2 years, and as i was recruited for college tennis I knew I needed to take drastic steps for improvement. I scheduled surgery, and went through with it a month ago. I had every complication there was imaginable. From lymphatic duct leaks, to having a chest tube put in, it was a nightmare. I had a first rib resection, scalene muscles removed, and surgery on my pec minor. I was in the most competent hands but there are many risks with the surgery. I spent 9 days in the hospital, on constant pain medication, nothing ever seemed enough, and they were constantly increasing my dosages. Looking back on it, I wish I had spent more time on my physical therapy. While receiving treatment I continued to play tennis almost every day, or do some workout routine. Whatever you do, do every single exercise they tell you, and do it religiously. I looked at this surgery as a last option and a fix it all, but it is an extremely serious thing to go through. I know I got more than most people have with this surgery, but sitting in a hospital bed helpless for 9 days is something I would never wish upon anyone. Take it from me, someone whose been through it all, DO THE PHYSICAL THERAPY AS BEST AS YOU CAN! I am approaching a month since the day of the surgery and I am still feeling the pain, and I cannot even start the recovery of physical therapy since I have not completely healed yet. I have many months of hard work before I can even think about picking up a tennis racket or even living normally again. If you have any questions please let me know, and I will gladly answer everything. As a side note I was left with an $85,000 hospital bill, without doctors fees ($30,000 just in medicine costs)

I totally agree olecyn. THINK before they CUT!
I'm post 5 months op now and despite that my arterial/venous compression has been released I am pretty much regretting having had the first rib resection op done! At the moment I'm dealing with alot of skin sensitivity next to the incision of my scars, x2 which are 3 1/2 " above and below the collarbone ( not the prettiest of sights on a fairly youngish woman). Also muscle tenderness/weakness in the breast and underarm region. Unfortunately I am VTOS bilateral so a future op is eventually on the horizon.................. BUT only when absolutely necessary!
I have asked my surgeon to pospone the next op on the other side as the first was so intrusive.... it hit me pretty hard, physically and emotionally! Obviously I am concerned about the risk of thrombosis but I will deal with that if and when it becomes a serious life threatening issue. For the time being I am focusing on recovering from the previous op. Just be aware that such an op cuts through some major tissue.
Some patients are lucky some aren't.:confused: It's a game of chance.:Reality is despite having an op for A/VTOS I will still have ongoing issues in the thoracic region , as like so many of us I also have neurological issues too, which are often not solved with first rib excision op.:(
Despite my op I have ALSO discovered today after having additional EMG testing that I also suffer from carpal tunnel syndrome! Apparently according to the consultant it's only mild...... regardless of the fact that I often have distrupted sleep and can awaken on an average of x5 times per night......... every night with numb hands!!!!!!!!!!!!!!!!! If I'm a mild case than I truely pity those who have severe carpal tunnel. :(
Personally the best thing for me so far has been CBT and acupuncture...... coping with pain with the aid of the mind........ positive thinking. Oh and the occassional glass of red wine.........hic!!!!! :):hug:
A BIG hug to ALL!!!!!!:grouphug:

SD- Is you Arterial / Venous TOS cured and neurological kind worse? Did they find exactly what was causing decromoression because if they did I'd figure you'd be healed for atos ?