Unoperable CVM's and blood pressure following bleed

Symptoms & Treatment
#1

I have three CVM's (2 of which bled....front right lobe and pons region) that are inoperable due to their location. I NEVER had a blood pressure problem until the bleed. I actually giggled when the ICU doctor told me that it was imperative to keep my blood pressure down. Now, I have severe BP issues. I am now on 2 different BP pills. I was admitted for 4 days last week to the hospital for high blood pressure, chest pains, and shortness of breath. All of the tests came back clear (heart cath, xrays, so many tests that I can't even remember, type of thing). They released me for the simple fact that all tests they could do appeared clear. I have an outpatient f/u visit with a pulmonologist. I am still short of breath, having chest pains, and my head is killing me. The odd thing? The nitro drip worked while in the hospital. I was free of the symptoms....now they're back, but I know the hospital will do me no good since they released me. My BP is actually running normal. I'm confused and worried. My thinking has become irrational maybe to think that somehow/someway the bleed in these delicate regions of the brain has affected my heart rate, my BP, causing the shortness of breath, the chest pains, and headaches. Is that too far-fetched? Time to call my Neuro yet and report? Seeking opinions, experiences, thoughts....this is really affecting my every day life at this point. :( (In addition to the dizziness I'm already dealing with).

Thanks for letting me vent, and thank you in advance for any insight you may be able to give me.

Hugs,
Crystal

#2

Hi Crystal,

Who and how many neurosurg have you been evaluated by? My husband Dave who is oleblue had 3 neurologist and 2 neurosurgeon and only one knew what he was talking about. Remember this is a "Rare Disease". It is more rare to find a physician that knows this disease in and out. Dave went to Stanford that began hope. Dr. Gary Steinberg is the best in the area on the west coast. He knows this disease period. Better then anyone I have spoken to.My husband is going on 7 months of recovery 3 CVM removed. 2 Frontal and 1 Temporal. New life has begun. He still has multiples, but they are quiet at this time. So vent anytime, that is what we are all here for.

#3

Hi Crystal. Do you have a cardiologist? I wish you lived nearby Memphis because I know a great one who loves to figure out medical mysteries. I am going to send you a private message.

#4

Hi Crystal,
If it's not one thing it's another...just what you don't need!:(
I echo Oleblue in getting another (or multiple) opinions from renown specialists treating CM's.
I'll send you a private message.
Take care,
Patti

#5

Crystal,

How have you been doing lately? Haven't seen you on the chat line. Hope this email finds you doing better then last message. Thinking of you and sending good energy you way. Stay in touch.

Dave & Barbara