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Short Update On My Visit With New Neurologist At Cc


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Went to the Cleveland Clinic, and the neurologist spent about an hour with me. I was concerned at first because he saw me a couple months ago, and he didn't seem to get it. Now he was much more in touch, and did not dismiss my cervical/cranial instability (CCI) issues even though we have had a difficult time having other surgeons and docs to get it, and how serious this vertebral artery enlargement is combined with the CCI, and poor vascular tone. My orthopedic surgeon gets it, but my geneticist wants me to find a neurosurgeon who gets it due to the artery issue-----------if it is an issue. to me, it feels like an "issue".

He agreed my BP needs to be watched for SPIKES. It's low most of the time, but it does spike, and he is concernd this will affect the vertebral artery. He also said to be conservative with my treatment for POTS, as florinef could cause spikes in BP.

He ordered a ultra sound of my cartoid arteries and vertebral arteries. The left one is missing, and right one is enlarged, but we aren't going to say anything and see what they find.

I saw my PCP today and he is ordering a cardiac echo, and an ultrasound of aorta. He will send me to an ENT to see if I need treatment for mastoiditis. There is mastoid fluid in my lower right cranium. This has showed up on a 2005 MRI, and again on a CT brain scan a few weeks ago. The problem is if the mastoid fluid is not from a prolonged middle ear infection that got out of hand, then what is this fluid from? I've had headaches for a long time now, and they have increased with intensity. they are localized to the base of my skull, but spread up into my right temple, and sometimes spread in a "V" shape. I still have the bulge in my lower neck near clavicle, and when this gets worse so do my headaches.

Here's a link to show a possibility of what else it could be; http://stroke.ahajournals.org/cgi/reprint/33/9/2148


It's possible to have venous congestion and cause all kinds of serious problems. i'm not saying this is what it is, but I do have this vertebral artery issue, poor vascular tone, and the CCI-----------------it's a bad combination.

I go back to the neurologist at the CC in three months, and he has agreed to handle my neurological care----he's also watching the lesions on my brain mentioned in several MRIs.

Still trying........... :blink:

Maxine :0)

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Thanks Sophia,

I forgot to add he's going to try topamax because he doesn't want me to take too much tylenol. I aksed if it helps headaches other then migraine, and he said yes-----------sooooo, I'm going to try it. I took it once before, and it didn't seem to cause any side affects other then making my pop taste weird.

It's hard to remember, as it was over four years ago. As long as it doesn't cause heart issues it should be fine.

Ice helps a lot.

Maxine :0)

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Hi Maxine,

It's great that you seem to have found a good doctor at the CC that is taking your issues seriously and doing further testing. I hope you get the answers you need, and that you don't have to go through more testing than necessary. Take care, and good luck!



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Hey Maxine.

Glad to hear you have a neuro that is taking your issues seriously.

We seem to have many of the same issues ... guess EDS does that.

I will be interested to hear how your carotid u/s goes.

I had one last year. Both rt & left are abnormal.

Thin & tortuous. They'll need to be followed. I have another in a few weeks to see if anything has changed.

I get similar headaches. I tend to think mine have a lot to do with my posture from low tone & hypermobile joints (I also believe my bulbous vessel comes from that too).

anyway, I have been working on trying to strengthen my back, neck & shoulders.

Hoping it works.

Went to the Cleveland Clinic, and the neurologist spent about an hour with me.

Maxine :0)

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Hi Maxine-

I have an appointment in two weeks to see a neurologist at the Cleveland Clinic. May I ask who you saw? I believe the name of the guy I'm see is Dr. Chemali?!? My husband scheduled it and were pretty sure he deals with autonomic conditions. We hope he does or it will be a waste of time. Thanks for any reply.


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Welll you go girl ~! YIPPEEE!!!!

YOUR miracle is starting to enfold...BELIEVE..TRUST...AND SEE HELP IS ON THE WAY!!

Keep us informed.


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