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

Postby Moebird » Wed Apr 03, 2019 4:49 pm

I've also had similar experiences, one in particular when I was still working and had a couple of important meetings. Fortunately my co-worker stepped up and saved the day, but after it was over I couldn't remember any of it. I also am usually told by doctors early on that my symptoms have nothing to do with my angiomas; then when they are not able to diagnose something they are familiar with, they say my symptoms are caused by either my brainstem angiomas or my spinal angiomas.

I'm waiting for an appointment with a pain clinic, (I live in Canada, where we have a shortage of doctors, especially in the smaller towns) mostly to deal with my constant migraines. My left side is weak, and my Dad's right side was weak and spastic when he died - I have the familial form. I'm right handed, he was left handed - is that significant? I'm frustrated and tired of hearing that my symptoms have nothing to do with my angiomas, and that I don't need an MRI! I finally had one a few months ago, when my family doctor thought maybe I had something other than an angioma there. He has since retired and I am currently without a doctor, until his replacement comes in July,

I find the best things I can do for myself are to take really good care of myself. I go to a gentle exercise class twice a week, eat really clean, and try to get enough rest. Something I learned at the one and only family conference I was able to attend.

Thanks for being here!
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