AVM - Hemangioblastoma located between spinal cord and brain - foggy floating feeling

Types of Avm's Spinal AVM
1

Hello - I just joined AVM survivors. I had surgery on 11/06/12. I had a growth located between my brain and spinal cord. My spinal cord was compressed and I had trouble walking, balance problems and my head felt like a "bobble head." I was told by my neurosurgeon I had an AVM. My pathology report came back with three possible diagnosis - first of all how is that possible?? I think they should know. The possible diagnosis are - vascular malformation, capillary hemangioma, and capillary hemangioblastoma. But - last sentence states - "The present of inhibin in some polygonal cells at least suggests that this is a capillary hemangioblastoma. So I am confused did I have an AVM or a brain tumor???

Does anyone else have an AVM/Hemangioblastoma that was removed from their brain/spinal cord?

It has been over two months (almost 3) and I feel a weird foggy feeling and can't concentrate long and get overwhelmed easy. I feel like I am "floating" along every day. Does anyone else feel this? or has felt it? How long does it last? Forever? Thank you to anyone who can respond.

2

Are you on any medications, Xtine?

3

Xtine, you may wish to friend Claudia Brown, who was also diagnosed with a hemangioblastoma: http://www.avmsurvivors.org/profile/ClaudiaBrown

I briefly read up on these, and saw that they can coexist with AVMs and can also mimic AVMs, so I can see why the report couldn't be totally conclusive. It looks like the location of your vascular anomaly may be more typical for hemangioblastoma than avm, though.

4

Hi dancermom-
The only medications I am on are - Amlodipine 5mg (blood pressure). Omeprazole dr 20mg (antacid), Triamcinolone Acetonide nasal spray (chronic cough), and Lorazepam .5mg (I only take one a night to help sleep).
Thank you for your help.

5

Thank you again dancermom!

6

Lorazepam is a possible culprit here. So is amlodipine. Both can cause fogginess; plus, it is possible that the interaction between the two is causing your symptoms. Neither one should be stopped or even adjusted without medical supervision, though. Tell your doctor about the fogginess, and see if he would like to adjust your medications.

7

Thank you for all your help.

8

I also was diagnosed with an AVM but has a hemagioblastma and hydrocephalus. Had tumor removed home after 14 days in ICU
Feeling better since 600 ml of CSF fluid removed from my head. Balance speech and memory are better life is beginning to feel good again.

9

My avm turned out to be hydrocephalus and hemangioblastoma symptoms similar as yours memory issues walking head was full of 700 ml csf fluid had surgery removed home recovering.