[tdinant]

Hi - I'm new to this site and was so glad to find it and read some of the posts here. Gosh! it's such a felief to find people who are going thru what i've been thru. I was just dx with bilateral TOS in Jan of this year after a long 3+ year battle. was originally dx with c-5 c-6 buldging discs and CTS. have been thru multiple testing, doctors, MRI, EMG, CT surgery, injections, trigger points, cervical traction, pain stimulator, pain management, psychiatry, pt, pt and more pt.

I'm very undecided on surgery mostly scared and dont know what to expect. My injury is to the right side which effects my entire neck, shoulder arm and hand but in the beginning when i first started gioing to PT i had an immediate onset of symptoms on my left side. my left side has not been related to my WC claim as of yet. My vasc surgeon wants to do the left side first to try to save it where i would atleast have 1 good arm, I've had my vasc surg and my neuro both tell me that there's a good chance my right arm will not get better even if i have the surgery. Yikes! I cant seem to even think clearly enough on what to do and need someone who's been thru this to talk to. It seems that everything i've done to try and get better i've taken 2 steps back and what if my left is worse after surgery?? Then i'll be left with 2 bad arms. Need to know from anyone out there about this surgery. How do you feel? How's the pain now? What's the recovery time? I'd love to hear from someone who's been dx with this after suffering with it for a few years such as me and then who had the surgery and how they feel now. Also, migranes !! They are getting worse - almost went to the ER last week but the snow storm stopped me. Was in bed for 4 days. They are causing extreme pain on the right side above my eyebrow, right jaw area, and circumference around my right ear. I feel that i need some kind of numbing cream or pain patch on that area it could help.

Any suggestions are welcome! Thanks and cant wait to hear from anyone!

[dawn3063]

First off I want to Welcome you to our group. I am sorry that you have to deal with this awful TOS stuff. You will find a lot of educational information on this forum as well as all the support you need. It has taken most of the people here years to get a diagnosis for there TOS. So many Dr just are not educated in it. It sounds as though your Dr's are. Just to let you know to there is a sticky located in the top left corner of the main page with TOS Dr's that have been used and recommended by previous TOS pts.

I have been diagnosed with bilateral TOS by a very reputable neuro surgeon and then had it confirmed with a neurography. Have you had or looked into a neurography http://www.neurography.com
I also had a herniated disc at C5and C6 which was a failed fusion and correctly fused this last year.
I've had two TOS surgeries within one year. Both were on my right brachial plexus. I didn't have a rib resection; I had a scalenectomy and neuroplasty done I had a anti axillary approach as well as mid clavicular approach. I had nerve as well as some vein involvement. The reason for the second surgery was the septra film that was used to help prevent scar tissue didn't take around the ulnar nerve and I had large amounts of scar tissue building up causing sever compression on the ulnar nerve. He had to go back in and free up the nerve and redose the area with double amount of septrafilm. He also had to resect more off the middle scalene and remove adhesions from the top area of the middle scalene that weren't previously there. I am holding off on my left TOS side at this time because I need a break from surgery since I have had 3 in the last year.

I also have a history of sever migraine headaches just as you described. Initially nothing would help them. I in fact had gone to the ER one day prior to my TOS diagnosis for a sever migraine and droopy right eye in fear that I was having a stroke. They ran a CT with contrast and nothing showed up. Which was great. My General Practioner prescribed relpax and placed me back on topamax for migraines. The relpax was a godsend for me. After my first TOS surgery my headaches calmed down but it was about 8 month after the first surgery that they started to slowly return. Now that I have had the 2nd surgery and the adhesions removed from the scalene they seem to have slowed down considerably. I don't know if the adhesions are a part of the problem with the migraine but I have a good idea they were.

My surgery in general was not really difficult. My surgeon had great pain control and I had great pain control at home as well. Keep in mind that I didn't have a rib resection so I can't speak for that.
Although after this last surgery I am having some issues with a very irritated ulnar nerve in my right arm and I am now on a medrol dose pack to help reduce the inflamation. I was allowed to drive about 3 weeks to a month following surgery it depends on what your surgeon will allow you to do and your range of motion and comfort without damaging anything.
Keep in mind TOS can be helped with surgery but generally not cured. Everyone’s experience is different.

I hope that others will post there experiences for you here and give there opinions.
I wish you the best of luck and I'm sorry you had to join club TOS but
Many Hugs
Dawn

[Jomar]

Hi tdinant,

Was your PT and other therapies TOS specific or more of a general PT approach?

Is your TOS more vascular related than nerve related- or both?
If vascular i would think surgery would be a benefit for both arms- but maybe not a severe cause of the sx?

Have you done bodywork , posture work, - Peter Edgelow, Sharon Butler, Alexander tech types?

maybe search the terms scar tissue, adhesions, and read about the possible RSD & TOS & surgery threads.

If you are really considering surgery ask doctors about the possibility of RSD after and if they take precautions for that.
And be sure your surgeon has done very many of these types of surgeries and is an expert at it.

I forgot to ask how you got TOS?
a repetitive injury over time , or an acute injury of some sort?

[johannakat]

Tdinant-
Glad you found us. Much more active that the yahoo group


to meet you under the circumstances....

As I said in my email, I have not had surgery, so I do not have much to offer up except to make sure you have a good doc if you are having your rib removed, and if you have any chance of developing RSD, get the appropriate blocks before surgery.


Johannakat

[Markev]

Hello Everyone!


I am new to the board and need people to talk to who have the same pain and problems. I will tell me story below.

Dec 26, 2005- DVT in subclavicle and neck and lung. Came on sudden.

Since then I have seen numerous doctors about the swelling in my arm and discoloration. I have been told many times that I just have to live with it. All the physicians I have seen have not done any other tests. I also have tingling and numbness in my arm. Recently I came across this board and many of the people have the same type of symptoms. I called Dr. Sanders and he spoke with me asking me to get a venogram. I went to my local physicians office to obtain and order, the physician preformed the allen test and it was positive. He was shocked and then didn't know who or how to call the order in. I waited another day and then called Dr. Sanders office, they are going to see me next week.

One of my questions is, is it possible to have a positive allen test and not have TOS?
Also, have any of you had the DVT and then been diagnosed with TOS?

I would appreciate any feedback or comments! Thanks in advance.

Mary

[Jomar]

Mary- I'm going to make your post in a new thread so we can say hello and answer you.