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Any advice or similar symptoms?

I was diagnosed with CM about 5 years ago.  It was an incidental finding after passing out in the surgery room as a dental assistant. I didn't notice any symptoms at all until about two months ago. Frankly almost forgetting about my diagnosi until my husband brought it up. I went to doctor and did another MRI showing a grown in herniation from a 7mm to 8mm.
I have noticed difficulty swallowing at times. I have to stop and remind myself how to even swallow.
Pain in my hips and spontaneous tingling feeling through out my body.
My heart flips and feels like it will just jump right out of my chest at times.
Right now, the worse is eating. I get a pain in my upper back between shoulder blades and in my upper stomach area. Is gall bladder issues related to chiari. Just seems like a weird symptom.
I notice if I'm rested I seem pretty good. We just got back from a cruise and seemed to be ok. Now that were home I'm working a lot aroun the house and starte feeling horrible again with boughts of crying. Another possible side effect I have read is sexual side effects. Those of which I'm experiencing as well.
I also seem to be getting blurry vision at times and of course the whole pressure feeling behind my eyes as well.
I have a neurosurgeon appointment dec 12 and just want to know what to expect. I'm so nervous and scared and frustrated. I just am so tired and don't understand why this is happening now. I was originally told when I was diagnosed that I would never have problems or the herniation wouldn't get worse.
Anybody have any good questions I shoul have ready for neuro appointment or any similar experiences?
Confused and scared,
Heather
4 Responses
11319529 tn?1417197259
Hi there,
I too have problems swallowing, I choke at every meal! Very frustrating! There are many problems that go with Chiari! None of them are fun! Hang in there & hope you get some help! Good luck !!
246139 tn?1424371973
Hi Heather.
You need to seek out a neurosurgeon who specializes in Chiari. Not just one that says he treats it. Many say they know what Chiari is and then have old information about diagnosing and treatment Chiari. This is very important. There is a list of doctors on this forum who other members have seen and feel they had a good experience with.
I went to a neurologist and a neurosurgeon here in state. The neurologist said he didn't think my problems were from Chiari. The neurosurgeon flat out said I do not have it. Turns out, I not only have Chiari - I also have craniocervical instability. So, please find someone who focuses on Chiari.

Herniations can get worse for various reasons. Symptoms can get worse for various reasons, especially if you have EDS. Injury to the neck can awaken symptoms in someone who previously had no idea they had Chiari - which is most often congenital.

You should also ask about a syrinx, EDS, and craniocervical instability - all common with Chiari. EDS is especially important as if the Chiari is treated alone, and not the craniocervical instability, most often the surgery will fail and needs to be repeated. There are measurements the neurosurgeon can do on your MRI scans that will help identify craniocervical instability. The doctor should pull these up in front of you and show you the measurements.

If the doctor tells you that the herniation size matters - its time to find another doctor. Chiari is not about the herniation. It is about the malformation of the actual skull and the obstruction of proper CSF flow.

EDS can be tested for through the beighton scale and through genetic testing.

http://hypermobility.org/help-advice/hypermobility-syndromes/beighton-score/

You should also ask about a CINE MRI to study your CSF flow and MRI for your cervical, thoracic, and lumbar regions to look for a syrinx. Another common thing you might here is that a syrinx only forms in the cervical spine. That is inaccurate. Its more common in the cervical area, but can develop in other areas as well.

Hope you are able to get some answers and that you don't feel to bad during the process.
620923 tn?1452915648
COMMUNITY LEADER


--Hi-and-welcome-to-the-Chiari-Forum.

--Swallowing-and-digestive-issues-are-Chiari-related-many-of-us-have-many-related-conditions-some-may-cause-similar-symptoms-to-Chiari.Most-of-your-symptoms-we-all-can-relate-to.

Once-you-have-testing-to-rule-out-related-conditions,like-Syringomyelia-ICP-POTS-sleep-apnea-Ehlers-Danlos-tethered-cord-and-a-CINE-MRI-to-rule-out-a-CSF-obstruction.

-Educating-yourself-know-you-are-not-alone-and-researching-Drs-will-help-calm-your-fears.

246139 tn?1424371973
SelmaS,

I want to buy you a new keyboard so bad. LOL I love your posts. They make me smile everyday!
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620923 tn?1452915648
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