[mamakasper]

Hi. This looks like a great forum. I am desperate for information... I have two quick questions, and then a long intro story...

Do any of you ever get redness in your hands? I have had it for a while, off and on, and I thought it was a rash, but now I am wondering if it is related to this TOS stuff.

Also, if you have the extra rib thing and vascular compression, do you always have to have surgery, or can PT work? I'm so scared of neck surgery...

Forgive me if this is too long... Here is the story. 2.5 years ago, I was rear-ended, typical whiplash symptoms, felt much better after 3-4 months of chiro, massage and acupuncture. About 4-5 months after the accident, I started experiencing numbness in my hands. It got worse and worse, also complicated by the fact that I was now pregnant. It was so bad that I couldn't write or wash dishes, among many other things -- my right hand was so numb and tingly it was often useless. Everyone told me it was preg. induced carpal tunnel syndrom, and it would go away after giving birth. I tried chiro, massage and acupuncture again, which did not help.

6 months after the baby was born, I was still miserable, and now no one could write it off as a pregnancy symptom, so I started seeing the chiro again. I would feel briefly better after each chiro visit, but then it would relapse very quickly. After about 9 months of chiro, I was no better.

Now, 2.5years after the accident, and 2 years after this numbness/tingling began, I finally hired an attorney to deal with the auto claim, and he suggested I see someone for Thoracic Outlet Syndrome. It was worth it to hire that attorney if only for that information!! He directed me to a TOS specialist, who raised my arms, etc, and diagnosed my with TOS on both sides. I've had the ultrasound of my vessels, with X-Rays, MRI and nerve study scheduled over the next few weeks. They suspect both vascular and nerve compression, as well as carpal tunnel. I may have the extra rib thing too.

I can't believe how relieved I feel to have a diagnosis. There is a reason for all these things that are going wrong... I thought I was losing my mind. I was even dropping things. Like dropping a cup of tea... It was almost like I forgot I was holding it. The blood vessels in my hands even started popping out (very attractive...). I also get the worst headaches, to the point of vomiting... Lots of other symptoms, and I'm just now starting to realize how many of them could be related to TOS.

I'm so mad at my chiro for treating me all year long without knowing exactly what was wrong, especially since I wasn't really getting any better...

Thanks for letting me tell my story.

I look forward to posting on this forum!
Shannon

[thursday]

Welcome Shannon!! Dive on into the forum- its gonna be ok (I'm flared up today so pardon my little welcome!)
Its terrible that yr TOs was overlooked when it shouldn't have!! I really hope PT can sort you out instead of surgery. I want to say it can!!
What types of PT other than chiro & massage have you tried? Also has your doctor said for sure you need surgery?

[Jomar]

Hello & welcome,
You're so lucky to have found an atty that even knew about TOS, & he knew of a dr that was up on it too - now that is major lucky

most of us had to search for attys and Drs that even just have a clue about TOS or even chronic RSIs

hopefully your tests will be able to show exactly what the problem is- and then we can discuss options and pros and cons of surgery.

The Mri & Xrays should clearly show if the extra rib is there or not and how big they are. some are a full set and some are small or partially formed.

Posture, ergonomics, body use and awareness are all things you can learn about and use while you are waiting for the tests & results.

useful sticky & Drs & pT sticky
http://neurotalk.psychcentral.com/thread84.html
http://neurotalk.psychcentral.com/thread135.html

I wouldn't rush into any surgery without getting second opinions and researching the surgeon and his experience level with this surgery.

About the redness- is it when you raise and lower your hands?
or does the redness happen for no explainable reason?

[DiMarie]

Originally Posted by mamakasper

Hi. This looks like a great forum. I am desperate for information... I have two quick questions, and then a long intro story...

Do any of you ever get redness in your hands? I have had it for a while, off and on, and I thought it was a rash, but now I am wondering if it is related to this TOS stuff.

I can't believe how relieved I feel to have a diagnosis. There is a reason for all these things that are going wrong... I thought I was losing my mind. I was even dropping things. Like dropping a cup of tea... It was almost like I forgot I was holding it. The blood vessels in my hands even started popping out (very attractive...). I also get the worst headaches, to the point of vomiting... Lots of other symptoms, and I'm just now starting to realize how many of them could be related to TOS.

I'm so mad at my chiro for treating me all year long without knowing exactly what was wrong, especially since I wasn't really getting any better...

Thanks for letting me tell my story.

I look forward to posting on this forum!
Shannon

Hi Shannon, Oh so many years ago we did the short term chiro help for my daughter before her diagx. In fact the w/c doc that first treated her knew what was going on and did not want to let us know how serious.

We had to get an attorney and fight. The redness could be the extra blood into the hands and compresions do not let it flow out well. I have this a lot, especially driving.

The cup of tea, or holding a can of soda etc being dropped: there is an explanation for that.
If you lose sensation in the sensory nerves, you can not feel the cup. The only way your mind has to know it is there is to "see" it, and the motor nerves will pick it up. When your eyes move away, the sensory nerves not realizing it is in your hand let the grasp loosen and WHOOPS.

The headaches to vomit I had triggers. They are not migrains traditionally, Mine are cervogenic in nature. Meaning that the spasms from the neck and trapizus across the shoulder try to protect inflamed nerves and wrap around in spasms. Especially you can feel trigger points; where the enrve inserts into the muscle it is so tender, but your press to release the spasms.

I had a knot in the base of my skull that flared for four years 24/7 headpains that flared to ER level. My last Epidural spine injection I was going into a huge flare with tears and had the anestiaologist feel the know the path of pain. He injected my C/5 whre the hump in on the upper back and directed the deproMedrol to that area. That was the last I ever had that flare, and the last I ever was in ER for pain.

My daughter had two failed surgeries as she had a lot of problems with scar tissue on the nerves, and then a clean up with the nerves wrapped in gortex, pericardial patch material did not help. She did not have an extra rib, they did remove the first rib and scalenes muscel removed. There was a lot of permanant nerve damage, The relief from the cleanup and surgeries were short lived.

I never had surgery (whiplash strain) and was diagx and off work right after my car accident. Surgery is not an option, I accomadate and some medications. I only work part/ part time.

If you do have an extra rib do not let them say that is why you got TOS. It may have been an anomolie you had, but for the accident it would not have caused TOS. It did not coincidently develope the syptoms the time of the accident.

Welcome to the forum, some of us here are going on ten eleven years or more on the forum, and longer dealing with TOS.
di

[astern]

Hi mamma and welcome to the forum! Jo had some excellent advice. Let us know when the results are in. I am amazed that you found an attorney AND tos dr... can you add them to our stickie at the top of the list of threads?


Anne

[mamakasper]

Thanks for the nice welcome. Interesting explanation of how TOS can make us drop a cup of tea. I really did think I was losing it!

The redness in my hand, well, I get two kinds. One is intermittant, following whiteness. Other is more persistant, such that my hands, esp the right one, look like they have an old tan. Splotchy, brownish-red color between the knuckles and the wrist. Something with the capillaries? I'll ask the dr when I go in next.

The doctor is a Physiatrist, and he really seems good, but I can give names once I know more. He seems to take my problem seriously, and really gave me a thorough exam. He found a position that caused me to lose my pulse completely. In any case, my hands were trembling for hours after the exam, and I was a mess the rest of the day... I'm in Seattle, BTW.

A couple more questions. How will an MRI pick up any compression, if I'm in a tight tube that doesn't allow me to get in any of the problematic positions? Wouldn't this be a problem with most tests, given the intermittant nature of the issue?

Anyway, thanks fot te welcome. I gotta run take care of the kids...

I'll post an update once I get my tests.

Thanks!
Shannon

[ozzy14]

Hi Shannon,

Welcome. Your story is very similar to mine. 1st whiplash injury, seen physio/chiro for 6 years then finally got to see a very good Dr who send me for doppler ultrasound tests and MRI which showed I had TOS. I also have C5/6/7 disc protrusion with nerve entrapment. I also have a set of cervical ribs although they are only a partial set, not a full set. They caused no problems until my whiplash/neck injury. I get the purple / swollen hands and severe headaches everyday. I also experience facial pain everyday, similar to sinus pain.

I have been medically retired form work (Im from Australia, different terms in USA). I spent 4 hours with a Dr last year and then was told I would never work again. Currently the insurance company is pushing for me to have both the TOS and neck conditions operated on. If they could tell me I would be 100% cured I would go with it, but what Iv heard with statistics there are no guarantees I would feel better. I, like you, hate the thought of having surgery, I am absolutely terrified (beyond belief!!!) so I know where your coming from. Good luck with it all and keep us posted. I encourage you to ask as many questions as you can. There are some very well informed people here (I found more info here than from all the Dr's iv ever seen!)

Ozzy

[Jomar]

The MRI is more to find out if any other things could be causing a problem, or if bones or structures are a problem.
You're right about the position part of it-
They usually won't clearly show a soft tissue compression - unless it is the special MRA{?} but those are few and far between.
The results depends on the skill of the rad/tech/dr that reads the films too.
Much of the testing is to rule out and narrow down the possible causes of your symptoms.
I think some have said that they were able to be in the certain positions during their MRI - but I can't remember who.