Hi I'm New!
 

Hello, I was diagnosed with TOS 16 months ago after experiencing pain for 6 years. I am from England and after reading this site it seems that doctors over here are not as knowledgable about TOS. I have had botox injections today into my right scalene muscle and I am feeling a bit dispondant as I am typing this with cold/numb fingers. Perhaps its early days? I have been seeing a vascular surgeon who is very conservative in his treatment and he is no expert in TOS. Help! I have had to give up work - I used to work in a bank - and I am now going to nightschool learning floristry. I want to go back to work but sometimes you feel everythings against you. Most of my problems have been the time it takes to get to see a consultant and then arrange treatment ( that is after been misdiagnosed a few times!) Oh dear this all sounds very depressing but you all probably know what its like! This site has some very good advice and information from those peaple who know exactly what you're going through and I look forward to chatting some more.:Wave-Hello:

Hi Claire ,
Nice to meet you.
I hope we can help you with support & learning more about TOS along with tips and self care ideas that you can do at home.

Our Useful Links - Websites, Articles & Polls-
http://neurotalk.psychcentral.com/showthread.php?t=84

DOCTORS and PT List for TOS
http://neurotalk.psychcentral.com/showthread.php?t=135

Hi Clare Marie,

Its nice to meet you! We have a great group of people here, looking forward to seeing you round the board. :hug:

Welcome to Neurotalk, Clare Marie!:)

Welcome Claire! Just my 2 cents- It might be tough to find a "good" doc over there, but don't give up or let someone operate if you don't feel they know enough about you and your condition. One other Doc that I (and, I think) many others here use is a Pain Management Specialist. I lucked out, because my pain mgmt doc is by training a Neurosurgeon. So, in addition to his primary role of helping me live my day to day life better, we discuss different longer-term solutions to this WONDERFUL problem.

Anyways - I like how you've already started to re-train yourself for a different career- probably less typing than at the bank!
Again, Welcome, and best of luck. Most everyone around here is kind and will answer any questions you may have.
-dabbo

Welcome!!!

Your post reminds me of one of my early ones...it is frustrating, and I am sorry.

I am going to post a list of tests that I got, and most people do, which helps them to understand what type of TOS they have, if they are good surgical candidates and what they don't have...

I had surgery 1 1/2 years ago - I've had TOS 5 years, and I didn't see a benefit for probably a year, except for less headaches. Although I am doing better gen'ly, I am still bedridden many days of the week, and cannot return to work. (Attorney.) But each person is different with TOS - as someone here posted earlier, "syndrome" means a collection of symptoms, so you don't have to have all or be the same to have TOS.

Hang in there. God bless.

Hi ClareMarie
 

Just want to say welcome.

I haven't had botox injections myself but I know several people on the forum have. Have you tried doing a forum search on the keyword "botox" to see what other people's experiences were? (See the "Search" feature in the blue bar at the top of the page.)

Good luck.

Welcome to our little family!
:hug:

Welcome
 

Welcome Claire Marie...Hope you can find some answers here. I am sure you will!:Good-Luck:

Rachael

Ok, here's that list of testing, it's just FYI. And I hope you all see our party / meeting / get together is at the beginning of November and is SO important! No one will ever understand you and accept you like one of your own.

TOS is a diagnosis when ALL other testing does not show an obvious orthopedic or other reason for all of your symptoms. TOS is a diagnosis when you have ruled out all other problems, because if you do not do the foundational TOS to rule these out, then you might have missed an obvious tumor, etc., but it does not mean that TOS is merely what you call it when you are done with testing. Testing is extremely important. Normal results in all, can still conclude TOS, if the proper symptoms are present. There is no single, one-shot test for TOS. You can't usually "see" it.

I am not a doctor, and this description of tests is just "laymens' terms."

1. You should have ruled out any rheumatological or immunological conditions by seeing a rheumatologist and having these blood tests run. Sometimes they will run a brain MRI.

2. Neuro / ortho / vascular doctors do MRIs of the neck, brachial plexus, shoulder, hand, etc., looking for any obstruction or strucural abnormality. These MRIs can be run with fluid, and may or may not have your arms in differing positions. Mostly, these are for finding any arterial or vein blockages.

3. Xrays are also ordered of the spine, usually in the beginning, and a few TOSers will have additional cervical ribs, but many do not. "Extra cervical ribs" or "protruding cervical ribs", etc., are the terms to listen for.

4. Neuro docs do EMGs and nerve testing, including SSEPs, each one believing that only their way is the right way. Usually, it is not always going to show anything. You want to ask if they test up by the neck for the C-8, because if this is slow, the C-8, it tends to show TOS rather than cervical radiculopathy.

5. Doppler tests are like sonograms of the arm to see if there are any blockages of blood flow. You can have neurogenic TOS and still have vascular / circulation type symptoms, but these may not show up on this test. Blockages must be treated usually by surgeries, ASAP.

6. MRAs or MRIs with fluid involves cut-downs along the arm to track blood flow, as you sit or stand. In my case, my nerves were wrapped around my double veins, so we were unable to cut-down all the way up.

7. 3d MRAs (or is it MRIs? I always get this one wrong.) By Dr. Collins shows different angles of the brachial plexus at such a high resolution that doctor is able to "see" compressions, impingements, etc. However, most of us do not get this luxury. (I think the cost is $7,500 right now?)

8. Scalene block - if you feel relief for a brief period of time, this is positive for surgery.

9. Thyroid issues - many TOSers are hypothyroid. Some show up easily on a blood test. Others, are not shown on a blood test. Some are called "Hashimoto's thyroid" such as mine. Mine were based upon symptoms, rather than numbers on a blood test. They incuded: dry hair, or slow growing hair, depression with no real situation or depression that has gone on a long time, nails that don't grow or are brittle, dry or flakey skin, sleeping 10 or 12 hours or a whole weekend like I was and still tired, not being able to sleep at night, tired when forced to wake up, (once I started the thyroid, I slept from 11 AM to 7 AM without problem), slow bowels, like not moving for a week, (not really weight gain or weight loss, though, this wasn't about being fat, but about not good body metabolism.) So anyways, this is a subject for you and your doc.

If all of these tests come out basically normal, this leads to discussion of TOS as the culprit. It is especially hard to tell the difference between cervical ortho causes and TOS, and sometimes shoulder and TOS. But you must go through time-consuming testing to find out all of the results, because if you simply proceed with an ortho surgery, your TOS pain can go through the roof and you can have unexpected complications, so it's rather serious to proceed now with great caution, whereas the work comp ortho surgeons love to "cut and run!"

We have a ton of articles post on the upper left hand corner.

We also have listed some of our docs we have seen, on the upper left hand corner. In my opinion, most doctors ho say they know TOS can NOT diagnose TOS, and I went through over 10 orthos / neuros / vascular surgeons who did not diagnose me, and it wasn't until I flew to Denver and saw Dr. Annest that I got a diagnosis, and then most of these docs said "oh, that's what I thought, too, but didn't want to be the one to make the diagnosis."

Pain control is another big fight.

Be very wary of chiropractors who say they can "cure" TOS. Do NOT do any physical therapy or treatment that hurts you, or tries to strengthen you. TOSers (for the most part) cannot do strengthening exercises, cuz that causes swelling, which is already a problem.

The best physical therapy that I know of is the "Edgelow" system, he is listed in our doctors list in Berkeley CA. Many P/Ts do his system. You can get it via mail, too.

Try to figure out how you got TOS, if you do get diagnosed. Were you in an accident to the collar bone area? Or, were you doing a job that had a lot of repetitive hand / arm movements over an extended period of time? IF you can't say why you got TOS and you're working, presume it caused the TOS, and make sure to get an attorney consult and proceed with a claim. Do not wait, no doctor will take care of this aspect for you. The onus is on you to pursue your work comp benefits, which, sometimes TOS is 100% disabling condition.

:hug:Welcome Claire Marie, My Mother's name is Claire! Nice to meet you, I'm sorry that you have to be here but welcome. We offer alot of support. Good luck in your efforts to find the best medical care you can get. I hope between everyone here you can get as much information as you need.

Linda

Also, Claire, although I am post-surgery, I have had botox from my neck to my shoulder blades to mid-back twice, bilaterally, (at the same time in fact), and I find a big relief from it.

What happens is that the pain in those areas subside, so the TOS pain in my arms / hands and the pains in my lower legs then become very noticeable.

I have three kinds of pain going on - TOS pain, fibromyalgia pain, and then I have had RSD very bad in the past, yet now it's somewhat here and there, comes and goes - I am very grateful the RSD is pretty much in remission.

So welcome to this site, I hope to hear from you more about the types of pain you have, how you believe you got TOS, and what your treatment ideas are.

God bless you.

helpful information