De-lurking with a personal Eureka moment....

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

De-lurking with a personal Eureka moment....

Postby kaykayaa » Fri Jul 03, 2009 8:57 am

Hi everyone. I've been lurking for a couple of months now and have PM'd Cheer about "coming out" but still feeling rather shy about it. But I had a "eureka" moment this morning as I was waking up and I wanted to share with you all.

First off--I was only recently diagnosed (I'm 45) incidental to another health problem that has since resolved. But while they were scanning me for that, somebody noticed a few lesions and raised the red flag for MS. The only relapse I've ever had was 21 years ago, a time when MRI was only available to a few. At that time the best they could do was tell me that if it happened again, I might have MS. Well I worried over it for about 4 years. But it never happened again. Through the years I've had a few weird tingles and buzzes but nothing dramatic or that couldn't be attributed to fatique, muscle strain or whatever. So I stopped worrying about it. (In retrospect--my ignorance was a true blessing in disguise!!) I have a very low lesion load and only one lesion on the cervical portion of my spine.

So here's the eureka--at least for me. I realized that after that incident 21 years ago, I began to do something that I have literally done for almost every single night of my life since and that is to wear a bite guard for treatment of TMJ. I had suffered from headaches for years and also used to grind my teeth at night as a child and well beyond. I had braces to straighten teeth then all wisdom teeth pulled to keep them straight. That backfired and as my bite began to change, the TMJ got worse (jaw would pop out of joint and lock!). Maybe pulling my wisdom teeth was part of it but probably, the TMJ is really just a side effect of the way my skull is genetically structured.So 21 years ago, I got braces AGAIN--this time to correct my bite. And I have faithfully worn my bite guard/retainer every night since.

Anyone who treats TMJ will tell you that a host of issues go along with it from headaches to neck pain and so on--because the major arteries and nerve bundles to your BRAIN run very close to the mandibular joint. So I now I'm wondering if my jugulars have been affected by all the motion, distress, compression, etc that has gone on for me. I'm not saying TMJ caused MS--but rather that treating TMJ may have inadvertently alleviated stenosis of the jugulars..... Cheer's comment that Jeff, genetically, had very narrow space for jugular stuck with me and it was only this morning that I realized the timing of all this, at least in my case.

Well, I write this not knowing all the physiology involved. I will have a spinal and brain scan this summer. As well as an appointment with my TMJ doc who is great. I'm dying to know if my jugulars are affected but I think contacting Dr. Dake may be premature at this point. I was hopeful about the Buffalo thing but if they're not releasing results, I don't feel I would really benefit in any way so I'm going to wait it out. If they want to fly me up, I'd happily do it for the sake of science only but if I'm paying for a flight, I'm going west for some real answers!!

In any case--I would love to hear if anyone else out there has had TMJ or a similar experience. I know everything about this disease is wacky and that's why CCSVI holds such promise for answers.

I guess I'm officially de-lurked now. And so I can say, having secretly observed you for months....what a great group you are. You are all extraordinary folks.

Blessings
KKA



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Postby catfreak » Fri Jul 03, 2009 10:21 am

kaykayaa,

I too have TMJ, I have been told to get braces but I have heard it can really make things worse. I also wear a bite splint every night and was just fitted for a new style on Wednesday. This is in hopes that it will help my extreme headaches and neck pain I am experiencing right now. It will be a couple of weeks before it is ready and I am excited about getting it and seeing if it helps.

My TMJ is so bad that I have broken a lot of my teeth from grinding. I have actually chewed through several of the hard plastic molded splints.

I wonder why right now my TMJ is so bad, then I wonder if it is an MS flare. Who knows?? I also think the CCSVI is related and I think my jugulars may have stenosis.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby mrhodes40 » Fri Jul 03, 2009 10:37 am

Hi Kay,
wow, my compression is right at the angle of the jaw as was Jeff's so I can see what you mean there it is an interesting idea. A misaligned jaw seems a logical candidate for compressing things in ways they should not be.

Note the thread where I posted a paper that outlined a person with a disc out that pressed on VEINS and then the veins pressed on nerves....

why not a jaw?

I think any kind of compression of the veins draining the brain could end up being the cause. Zamboni's dec 08 paper outlines several patterns of blockage that he saw associated...Dr Dake feels that Dr Z's patterns are too limited and that other patterns can and will emerge given time. That does seem to be playing out as the type Dr D finds most is high jugs.

Personally I have perfectly straight teeth that I was born with but I have a big jaw too, the better to talk with.............. :wink:
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby cheerleader » Fri Jul 03, 2009 10:46 am

Hi Kay....congrats for de-lurking and welcome to the light :)
Just to add to the jaw theory...Jeff has his 4 wisdom teeth and they are very cramped. His dentist (s) have been on him for years to have them removed. He never had braces or wisdom teeth removal because he didn't want to stop playing trumpet. And yes, that is the area that showed crimped jugulars on the MRV....next to the mandible, where his cervical lesion is as well. hmmmm....
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Fri Jul 03, 2009 12:00 pm

Just to add mine are gone the wisdom teeth that is... I don't know but it does not seem you'd make more room by pulling them cause they are in the jaw which is bony tissue ??? Cheer it will be interesting what the dentist says if you ask your tooth guy as a curiosity.........
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby daniel » Tue Jul 14, 2009 10:11 am

I haven't had an MRV done yet to confirm any blockages... but last time I was at the dentist she commented on how strong my jaw muscles were and asked if I chewed gum a lot... I told her no. I don't know why my jaws would be clenching enough to grow stronger...

My wisdom teeth were removed in high school, so they're long gone...

Edit: and I did have braces as well
Last edited by daniel on Thu Jul 16, 2009 12:56 pm, edited 2 times in total.
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Postby kaykayaa » Thu Jul 16, 2009 11:55 am

I wrote more on a thread called NIH but I just wanted to mention here that a neuro I'm working with thought that based on my TMJ history, an MRV might be in order. I was actually a bit surprised. I was sure she would shrug it off but her ears actually perked up at that....hmmmm....she's going to see if she can arrange it for my next visit in August. I'll keep you posted. thanks for all replies!!
KKA
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Postby CureIous » Thu Jul 16, 2009 12:18 pm

:)
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