Problems with Jaw post CCSVI

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

Problems with Jaw post CCSVI

Postby kkala » Fri Sep 24, 2010 9:52 am

My mom had the CCSVI Liberation procedure in Poland in June, 2010. She had both jugular veins blocked but only required a stent in her left vein. Since returning to Canada, she's had trouble yawning, eating and swallowing.

She says she feels like something is going to crack near her jawline, close to where the stent was placed. We went last week to have another doppler ultrasound at a vascular clinic in Ontario. The technician said that the stent has not traveled, and everything seems fine. She suggests that it's my mom's body trying to get used to a foreign object and that it should get better with time. However, it seems to be getting worse.

Has anyone also experienced this problem? Does anyone know what my mom should do?
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Postby Cece » Fri Sep 24, 2010 10:06 am

I'm sorry to hear this. If it's getting worse, maybe look for another second opinion? A long while back we talked about some people possibly having allergies to the metal in the stents and that you can get allergy testing done. I've been waiting/worrying to hear if that crops up for anyone. But this sounds like a physical problem, not an allergy problem. (I have no medical experience.) Wishing her the best. Maybe do a google search on side effects of stents? Or visit a vascular doctor? Has she contacted her original doctor in Poland? I wish all of this were easier.
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Postby esta » Fri Sep 24, 2010 10:12 am

hi
i have a stent, and my jaw still aches and its been a month. my stent was placed near my collar bone, so i imagine a sten inserted any further up would be even more painful.
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Postby Nasti » Sat Sep 25, 2010 2:15 pm

I had the same in the post-op days, now it only hurts when I keep my head in an awkward position.
Basically, the nerves that control the back muscles run together with the veins, and inserting the stent does damage to the nerves, maybe this has something to do with it. However, most of the pain should have subsided in the first couple of weeks after the surgery, so maybe you should do more research on the internet and talk to a nerve specialist (don't want to say neurologist :)))))
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Postby kkala » Sat Sep 25, 2010 5:20 pm

Thanks for posting a reply. To those who've had the CCSVI using stents, would you be able to tell me what dosage of blood thinners, ie. aspirin, you were prescribed? We hear varying reports of anywhere from 81 mg to 150 mg that my mom was prescribed by her Polish doctors.
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Postby esta » Sun Sep 26, 2010 5:31 pm

hi
regarding, katowice, poland and my stent as of aug 26th, i am on 75mg plavix and 150 mg asprin together for 1 year...but getting home the asprin size is bigger, 2 baby asprin at 81 mg each so it will be more when i run out of the polish ones.
then just the asprin at that dose for life...
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My mom is better post-CCSVI

Postby kkala » Mon Sep 27, 2010 5:42 pm

Thank you for all your advice and responses. The Polish doctors responded about my mom's jaw problems, and they suggest that she get her TMJ tested.

Dr. Simka said my mom should "visit a maxillary surgeon and
take pantomographic x-ray of teeth this may be the articulatio
temporomandibularis issue."

I do want to add that despite the jaw issues, my family has seen improvements in my mom's condition since she was 'liberated' in June. She is stronger, has better colour to her feet (which used to be purplish in colour), less slurring of words, more energy, better dexterity and better bladder control. She's had MS for 20 years, so we were told to be patient. We remain optimistic and hopeful.
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