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HHT brain damage and tremors

Hi,
Many of my family members, myself included, suffer from this terrible disease HHT. My brother has had two brain annurisms and a heart attack from his blood count going too low and is lucky to still be here with us. But really my question concernes my Mom. She is 75 years old. About five months ago a blood vessel broke in her lungs where a coil had previously been placed. She coded and had to be shocked and the doctors say she was out only two minuiets, not enough to cause brain damage. But... after they did emergancy sergery she got phnemonia and had to be sudated for almost a month and we almost lost her then too. When she slowly came out of it, it became aparent that she definatly sustained brain damage of some kind. She had five CAT scans over a period of time and nothing ever showed up to indicate a stroke, but so many of her symptoms seem like stroke. Her vission was affected, therypist said possible vission cutting, she had to learn to walk and feed herself again, dress herself etc. and her speech is still slow and at times studery. Several other doctors have said that they think she has brain damage from when she coded. Know one seems to be able to tell us for sure and she can't have MRI due to metal rods in back and coils in lungs. She finally got to come home from rehab hospital about a month ago and I call her my mirical mommy. She is amazing. At this point I would say she is about 80% back to where she used to be. The biggest challenge we are facing now is that she is having tremors or muscle spasms that efect her whole body. The doctor is treating her with  (please forgive spelling) Bacophin and Adavan. This does help but the Adovan makes her sleepy. My question is... will these trimmers ever go away and will she continue to improve after five months? Thank you so much for your time,
Susan        
2 Responses
Avatar universal
Hi,

I think it is very likely that your mother suffered some degree of brain damage although it is very unusual that it does not show up on CT scan. MRI is a more sensitive tool to pick up soft tissue injuries but like you rightly mentioned it cannot be done in her case.

It is very difficult to say how long will the tremors last but since she is responding well to treatment hopefully she will continue to improve. Take care!
Avatar universal
HHT, certainly can cause strokes... It can cause mini-strokes, as well as major ones. I agree with the Dr. above me that it unusual for it not to show up on a CT, but more likely if it is 'minor' damage. Several tiny bleeds from brain AVM's could cause something like you're talking about. Heart stopping, and restarting certainly counts as extreme aterial pressure, so it would be easy to see how it could cause a previously functioning vein to break. The best advice anyone, dr or otherwise can give you is to get your mom (and family members) to an HHT center of excellence. Almost no doctors outside of the centers, know enough to effectively test or treat HHT. I am an HHT patient, along with 5 of my family members, and my Grandmother was, before she lost too much blood and didn't survive. I am a lay person, but quite a well researched one. I'm worried by one of the meds you mentioned. "bacophin"... i couldn't find any records on it, but it sounds a lot like heparin or warfarin, both of with are anti-coagullents, and generally drug 'families' sound alike. No HHT patient should take anything that increases bleeding, or thins blood. Please look at the HHT website and find your nearest center of excellence.
www.hht.org
-Noelle
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