Cleveland Clinic TOS
 

Has anyone ever been to the Cleveland Clinic TOS clinic?

I have been talking to my family practice doctor about going there and would like to know if anyone had any experience there.

I have had TOS for 20 years and have had both of my 1st ribs removed and had my left minor pectoral muscle detached.

My left arm bothers me constantly and my right is starting to bother me more and more.

I have constant pain almost 24/7. The pain level and type varies through out the day. I am on both Tylenol 3 and Ultram. I try not to take them but I usually take the both of them a couple of times a day. I also soak in my hot tub and get massages.

I hope it does not sound like I am whining, but it feels good to get it off my chest. My wife is tired of hearing about it.

I'm not familiar with the Cleveland Clinic, but I wanted to say that your comments do not sound like whining at all. Chronic pain is real, and sharing how much and how frequently you suffer from it is perfectly fine. In fact, it's normal.

I haven't heard anything about the Cleveland Clinic TOS clinic..

I've read of the RSD /CRPS Cleveland Clinic.


Moltra did/do you have nerve - NTOS , VTOS or both?
Unfortunately nerve TOS can have lingering pain.. the old - "nerves can't take a joke" thing..

How long has it been since your surgeries?
If over a year internal scar tissue could be part of the problem..

Does any massage pr PT help?
Have you tried any self care things like IF stim or TENS? Some chiros & PL places have them to try before buying one yourself..
* DO NOT let anyone turn them up too high, only a slight vibration sensation should happen..

You might even need to have meds change try some different ones?
any muscle relaxant?
any anti depressant (can help pain control when added w/ pain med)
when we are in pain we tend to hold breath and tense up- this clamps down on cell fluid /lymph system cleansing.. short version explanation..

Or maybe look into SCS - spinal cord stimulator.
We have a sub forum about those..
http://neurotalk.psychcentral.com/forum118.html

I have NTOS.

Right 1st rib removed 2005 and was great until the last 6 months.

Left 1st rob removed 2007 and was back to hurting 6 months later.

left minor pectoral muscle detached 2011 slightly better for about a year and then started bothering me again.

When I had my surgeries the surgeon said that my nerve went through my muscles like spaghetti. So any time I get stressed my left arm starts hurting real bad. Sometimes it is burning, sometimes it is a dull ache.... This will sound funny, but when I have to pee bad my left arm really starts acting up due to my body tensing up. My chest and shoulders and upper back hurts most of the time. I have numbness in the right side of my neck and sometimes the lower right side of my face.

I think I have tried every pain medicine out there. I have tried 4 different muscle relaxers. Either they do not help or make it so I cannot function.

I used a TENS unit for almost 2 years, but now if I try I itch for days afterwards.

I get a message about 1-2 a month and it usually helps for a little while. I also get in my hot tub 3-4 times a week and it usually helps.

I have tried PT and it helped alot, but I have alot of triggers on my TOS and even during the PT I reverted back to where I started after 4 weeks of PT 2 times a week, when the Therapist changed the order of the PT.

I am service connected from the VA with TOS both sides and Arthritis and limited motion in my neck.

I have to watch everything I do. I have to make sure I do not move my arms above my chest, unless absolutely required. Carrying anything heavier than 10 lbs. If I go anywhere I have to make sure that I sit when no one on my left side. I have to move my left arm constantly or it starts hurting. I think I have arthritis in both shoulders, but the VA will not recognize that TOS causes Shoulder arthritis.

I have an appointment in early Feb with a Dr. Rebecca Kelso at Cleveland Clinic. Any seen her or heard of her.

Have not heard of her, sorry. But you can join the TOS group on facebook, maybe someone there knows her.

I went to the Cleveland Clinic and I think that it was a good visit. The doctor did some tests and started me on a different medicines and she wants me to try some other things and if they help, I will post it here or on my TOSBLOG.