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Chiari Malformation Community
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Avatar universal

Chiari symptoms are progressing

Hi all, I appreciate reading the Q&A here and thought I would jump in...
I had seizures in my sleep 2 years ago and had a CT scan that was consistent with chiari.  The chiari was not a concern to anyone and I was diagnosed with sleep apnea and got a mandibular advancement splint.  Since that time, my apnea seemed to change more from obstructive to central.  I feel that I exhale and don't inhale again, or else my breathing is just too shallow.  I also have more difficulty when sleeping on my left side:  pounding heart and shortness of breath.  I also have "shocks", pulsations, and jerking muscles in my sleep.
In July, I finally got MRIs of neck and head which showed a 9mm type 1 malformation with no associated syrinx. The neurologist said that there was no blockage and that 5mm is still considered normal so I'm really only 4mm over. He said if I wanted to see a neurosurgeon I could, but he thought the NS would be very abrupt that I didn't need surgery and was not concerned.  I declined the NS consult at the time but now think getting laughed out of there might at least be reassuring.  
Since that MRI 2 months ago I've had increased headaches, brain fog, weakness, pressure, blurry vision, and dizziness.  I had experienced each of these before but not all at one time.  I'm wondering if anyone else has experienced a rapid progression of symptoms.
I've ordered the book Conquer Chiari to educate myself.
I'm also curious about what alternative therapies exist.  I've been drinking more water and am interested in trying natural anti-inflammatories and am wondering if anyone has had any success with that.  I'd like to leave surgery as a last resort.
Thanks!
3 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Did they do a CINE MRI to check for an obstruction to flow? A regular MRI can not show if there is one....also what areas did they do the MRI's of? To rule out a syrinx MRI's of the cervical, thoracic and lumbar spine need to be done,
Size of the herniation is not the only consideration when discussing Chiari as it comes with other related conditions. As you already know since you have sleep apnea.

When your symptoms increased, look to what activities you were involved in and if you had any added stress..

Make sure you research Drs as not all NS's are even aware of how to ***** those of us with Chiari....they do not look for the related conditions and only look at the length of herniation....Chiari is not the herniation but the malformation of the skull.

Having the right Dr is key. If you would like names of Drs to research let me know what area you can go to...and keep in mind you may have to travel. And know, you are not alone.
1 Comments
Thank you Selma!  No, they did not do a CINE MRI yet.  I will ask my neurologist about it.  The MRI was head and cervical only.  I didn't realize that a syrinx could form in thoracic or lumbar spine!
I definitely had added stress from work when the symptoms increased.  I'm hoping they decrease again and that this is not the "new normal".
Do you have any names for doctors in Vancouver, BC?
620923 tn?1452915648
COMMUNITY LEADER

  Chiari symptoms also cycle, so they can come and go...lessen and then worsen....so it is a real roller coaster ride for sure;.

We do have a small list for Canada....not sure how close any will be to you...keep in mind this list is not a referral nor an endorsement of the Drs listed....research ALL drs

http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-CANADA/show/1270605

Keep in mind you may have to travel many of us do
Avatar universal
Make sure to look into other surgical options before jumping into decompression. Decompression usually only provides temporary relief before symptoms return and progression continues.Tight or diseased Filium  is a major cause of chiari and syringomyelia. I had chiari, a syrinx, syringomyelia, mild scoliosis and several bulging cervical discs. I Had a simple surgery in Barcelona with one night in the hospital. Doing fantastic. 100% of my symptoms were gone within two days of surgery. Doctor here is now invited to serve on the new worldwide chiari and syringomyelia task force. Global expert. Know many other people who had the same procedure and all doing great years later including small children. France and Italy Healthcare system will pay for the surgery in Spain. The doctors in Barcelona will review MRI's and history for no charge and let you know if you are a candidate for their procedure.
http://institutchiaribcn.com/en/diseases-we-treat/arnold-chiari-syndrome/
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620923 tn?1452915648
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