seeing specialist for 2nd opinion - having weird symptoms

Discussions of issues related to living with cavernous angiomas

Re: seeing specialist for 2nd opinion - having weird symptom

Postby PattiG » Wed Jun 28, 2017 3:21 pm

I echo Elizabeth and Michelle.
Too many doctors claim symptoms aren't CM-related. The brain is too complex to write off symptoms as unrelated. Whatever happened to common sense? :(
If possible, I'd encourage another opinion.
In my experience w/Stanford and UCSF, neither specialists charge to review your films. :idea:

Take care and best wishes,
Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
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Re: seeing specialist for 2nd opinion - having weird symptom

Postby PattiG » Wed Jun 28, 2017 3:33 pm

gardengirl1975 wrote: I also drink ginseng drinks from local Asia Mart - with the root in the bottle - it really helps....when I can remember to get them.....sigh.


Hi gardengirl,
Just wanted to encourage research on ginseng drinks, as it appears on the net to be a blood thinner. :(
So many 'innocent' herbs, OTC and Rx meds (as you unfortunately know) that are potentially dangerous for us.

Best wishes,
Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
PattiG
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Posts: 1094
Joined: Mon Sep 27, 2010 12:38 am
Location: Oregon

Re: seeing specialist for 2nd opinion - having weird symptom

Postby Nschantz » Fri Feb 08, 2019 2:21 am

I have a cavernoma in my left cerebellum, as well, and I have been experiencing the same symptoms, the pressure can be so overwhelming and drive me crazy!, anxiety, double vision, ringing in my ear, sharp pains right at that location, and dizziness, as well as the numbness and tingling of my lips and parts of my face, and just completely blanking out or being confused and unable to describe certain words...

I was also told that these symptoms were not relative to my cav and sounded like seizures. The pressure tested fine from the lumbar tap that I had in December, and I have not been able to take any of the anti-seizure meds without worse side effects. I just don't understand how this isn't relative to my CCM, it can be very frustrating.

I notice that my biggest triggers are stress, pressure changes, and yoga (downward positions).
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