neurologists in Houston

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neurologists in Houston

Postby anne » Thu Feb 01, 2018 9:07 pm

Hello all, after a long year last year, getting diagnosis on my son, We went out to see Dr Awad in Chicago, and as a precursor to the visit, was set up to see a pediatric neurologist out there as well. Well, the neurologist hit the nail on the head and diagnosed our son who has CM (mult) in the thalamus- with Klein Levin Syndrome. We thought all along his symptoms were being caused by his CM. So the presence of the CM 1:100,000 and the presence of Kleine Levin 1:1,000,000 was never put together. Personally I believe the CM triggered Klein Levin-like symptoms, but despite my reaching out to Dr's from all over, no one is in agreement.

So our son had a bad fall and suffered open fracture of tibia and fibula and required pretty major surgery. After surgery, pain was through the roof and BP (for a 17 year old) in the 150/90 range. well above his norm. The 2 times he experienced symptoms from a micro-bleed in the thalamus, they have been the same and we cannot get a neurologist to understand his symptoms let alone confirm the trigger for the CM bleeding (Which despite expert advice, I still think is BP related).He experiences sensory deception - as in he can see, but then the impulse is stopped after leaving the thalamus so the brain never "acknowledges" what it's seeing so he feels like his brain is playing tricks on him. He'll go back and look at something over and over as he's not sure he saw it in the 1st place. to some extent, same with touch and taste. So in the mecca of medical care in Houston, Have not been able to find a neurologist to understand his symptoms. They know a little about CM's but his does not present with headaches, seizures, etc. so no help to us.

If anyone knows a good neurologist in the Houston area - PLEASE let me know. The neurosurgeons here are excellent but because of the CM location and small size, surgery will not be an option for him.
Anne
mother of 15 year old son diagnosed 8/16.
anne
 
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Re: neurologists in Houston

Postby Elizabeth » Sat Feb 03, 2018 7:00 am

Welcome,

I'm sorry...what a frustrating path. I know how annoying it is to see a bunch of doctors that don't know anything. If you are on Facebook, you might want to check in there...seems most everyone migrated there. I'm in los Angeles and I'm not familiar with any doctors there..you might try a search here. I think there's an active support group in Houston or nearby. They might be able to help you too. Best wishes!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
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Re: neurologists in Houston

Postby kalbright » Sun Feb 04, 2018 11:13 pm

Hi, I was diagnosed with Familial CCM in September 2017 after bleed in the Pons. Since Houston is the closest large city, I was transported there and ultimately seen by UT Physicians, Dr. Akapala. I am new to this but the facility and staff are accommodating and helpful. Not sure of this will help, but it might be a place to start
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Re: neurologists in Houston

Postby Michelle2000 » Tue Feb 06, 2018 1:54 am

Anne,

I also am of no help on Houston, but I want to wish you and your son the very best. I also have a 17 year old son with CM. It's hard to be different when you are that age!

Best wishes,

Michelle
17 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
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