[CindyCB]

Hello everyone!
Not sure where to start - my history is a long one and I am not diagnosed properly as yet but wondered if anyone could help me with some questions?

I've been having horrible neurological symptoms for about 4 years now but I guess my history goes back further to childhood migraines. I feel like I've always had a headache.

About 4 years ago the right side of my body went numb - an underactive thyroid was (finally) diagnosed but after much trial with medication and reaching my perfect levels the problem remained.

After all sorts of scans and tests nothing showed up - my right transverse sinus vein is partially collapsed while laying down but wasn't thought to be a problem.

In January I paid for a test for CCSVI, even though I don't have MS. I was shocked when it turned out to be positive.

The valves on my internal jugular veins appear to be malformed (but in a different way to what MS patients have) and about an inch above them my jugulars are very stenosed.

The clinic that diagnosed me decided not to operate on me as I don't have MS so I've been researching what to do.

I came across the idea of TOS/cervical rib while researching this and think it fits a lot of my symptoms - numbness of the arms, one sided headache/migraine, pain and numbness in facial nerves etc., carpal tunnel, very stiff, painful shoulders and neck.

I can't lay on my side or flat on my back or my symptoms flare - being upright is best but not always possible! I feel quite spaced out and weird all the time too (presumably from the stenosed jugulars which can't drain my brain blood efficiently).

I emailed my chiropractor this week and she's examined my x-rays but says she can't be sure of anything as it's unclear but there may be 'possible bilateral elongation of the transverse processes of C7'.

I'm trying to work out what to do next... but my silly question is... is it possible in anyway at all that if my problems turned out to be TOS that it could effect my right leg in anyway?? I have the same nerve pain there, on the outside too.

Thanks for reading - sorry it's so long!!
CindyCB. x

[CindyCB]

Anyone?

[Chemar]

hi

I am sure you will get some answers, but as it has been a Holiday weekend, some people are not yet back online

the forums are always quieter over weekends, but especially when they are over a holiday

[CindyCB]

Chemar, thanks for the heads up!

I will check back in a few days

[tossucks]

Hi CindyCB.
Your case sounds very "unique" Many of the symptoms you talk about are TOS symptoms, but there could be a host of many other things causing them as well.
I too have had symptoms since I was young, progressing over time. It is not uncommon for people with tos to have leg problems as well, because of overcompensation of the body because of pain in other areas.
I think you have got alot of research to do, including reading here, and trying to find more specialists who will do more testing on you. As much as i respect the work chiros do, I would have a specialist read the xrays, and order further scans. Do consider seeing a tos specialist. If I remember I read somewhere here a specialist to see in the UK, is dr. Thompson.
Not sure what else to say...Im not a dr. but it does sound like you have more going on than just regular tos symptoms. But you are doing the right thing and taking your own intiative in researching for yourself, just continue on in pushing to see more specialists to find answers.
I hope that helps some, and I hope others have better answers, just wanted to chime in my thoughts.
Cheers,
Jay

[CindyCB]

Jay,
Thanks for the reply.

Ha, yeah, 'unique' for sure. That's one way to describe it all!

Yep, I agree re the chiropractor and am in the process of trying to secure a scan this week with a clinic I am going to for more extensive CCSVI testing.

I'm trying search combintations on whether the C7 could compress the jugular veins and if TOS/cervical rib can cause neurological brain symptoms but I am not getting very far.

Any suggestions?

After reading quite a few posts on here I've realised my symptoms in my arms and shoulders are actually pretty bad and I've been putting them second to the neuro problems.

Can't lift things, trouble with putting things in cupboards or anything above my head, even hanging washing on the line makes my hands go numb and my neck ache. Reading or playing with my iphone in bed sends shooting pains up my arms.

Also doctors have had trouble getting a pulse reading from me when taking it manually ... probably a clue?

CindyCB

[tossucks]

Well, as I said before, I think my best sugestion is to work with your chiro, but also with your GP, in getting a referal to a tos specialist in the UK, to help diagnosis the problem. They are better trained at this.
Hopefully your GP can get you the referals to the proper people to see. I know its a crappy feeling, expecially when you arent sure what is going on, and how to deal with it. Just a seperate comment....if it hurts, dont do it, try to relax the muscles as much as possible....i know easier said than done. What areas does your chiro work on? and what kind of treatememts does he do? Do they help relieve the symptoms at all?
Jay

[Jomar]

Have you had a MRI yet? Sometimes they won't show much unless an obvious anomaly - but good to have to be sure no other causes from the c spine etc.
If a cervie rib it should show, but possibly they didn't look for it, or missed it?
Also could be large bones or ligaments, unusual anatomy (we all aren't exactly alike after all -some unusual vascular /muscle configurations have been mentioned here)

But often the more difficult diagnosis will take more time and must rule out many other dx's before a positive TOS dx is made.

Be sure to read through our sticky threads up near the top.

How is your overall posture?
hunching shoulders or letting them roll forward just closes down the area that TOS affects so while you are working on a dx you can always try to work on posture , to see it if helps at all.
Same with head jutting or being forward of the shoulders - ears should line up with shoulders.
The weight of the head forward constantly pulls on the very muscles that we are trying to relax. So it should be balanced over our body in line with the spine.

[CindyCB]

Thanks for the replies

My posture is poor! I worked in a job for a number of years that either had me hunched over a desk or using a manual knitting machine which is set up to create a bad back, I'm sure of it.

Add to that I was misdiagnosed with ME/CFS for a long time, lots of lying/sitting around and I bascially have no core strength and my shoulders roll forward, my right one more than my left - I can actually see it in my field of vision which you shouldn't be able to do.

I've been doing exercises for about 2.5 years through an osteopath, chiropractor and muscular masseuse to help sort out this problem but it seems no matter how hard I try the muscles want to pull forward.

Weirdly when I tried strong blood thinners, recommended by a doctor I was seeing, the muscles relaxed totally for the first time in years and better posture came much more naturally to me. It kinda feels like the problem (whatever it turns out to be!) has me in a vicious cycle.

I've had MRIs looking at my brain and spinal cord but I *think* looking at them they are not detailed enough to show the C7 area in detail from the front. The side views are certainly too confusing for me to tell if there's any problems. I have a basic understanding of anatomy through having to research all this but I think I would need something much more focused on the area.

Been working my way through some stickies (and yes, I am hypermobile too!) but trying to find any articles on cognitive function and/or jugular veins.

I mean, can C7 compress the internal jugulars?

[Jomar]

you might have seem similar pics already - this site shows the int jug running under the clavicle/top rib area -
http://sfgh.medicine.ucsf.edu/educat.../centrallines/


I found this - by googling "C7 could compress the jugular veins"
http://docs.google.com/viewer?a=v&q=...UB6akLblI7PuMA