Cavernous Hemangioma - Thalmus

[Amy]

Dear Neurosurgery Forum Physician,

     Thank you so much for having this forum.  I have learned alot by reading through all the questions and answers.  
     I am 35 yrs old.  In 10/99 I had a bleed in the Thalmus of my brain. One day I noticed the right side of my face was numb. I thought it was fatigue and ignored it.  Three days later I woke up in the middle of the night and the left side of my body from head to toe felt tingly and numb.  There was an ever so slight headache behind my right eye. The next day I went to the doctor who sent me to the hospital. The doctors feel it is a 2 cm cavernous hemangioma right in the Thalmus. The did an MRI and angiography. I have a repeat MRI sch. in Feb. to make sure it is not a tumor. The sensation in the left side of my body still is tingly and numb and I notice I have headaches from time to time.  They want me to report any changes.  Some days my left side feels more tingly than other days and I have that sort of floaty dreamy sensation I had when I had the bleed.  The other thing is my short term memory seems to be affected and I am more tired than usual. I tend to make excuses like we're all tired, it's the holidays! Are these symptoms typical and do they improve? They said if I bleed again they will want to take me to surgery as my risk for death outweighs the risk for negative consequence of surgery.  I understand these gps of vessels have a tend to bleed, heal and rebleed.  How common is it to rebleed and does the chance of rebleed decrease with time?  Also, I have no children, would pregnancy put me at risk for rebleed? Finally, I plan to move to a location about 10000 ft in elevation.  Could this pose any problems?  Wow, I unloaded all my questions!  If you can help with any of these questions I really do appreciate it.
     Again, I appreciate your forum and want to say thanks for the time and interest you give us all.

[CCF Neuro[P] MD, RPS]

Dear Shera:

Without knowing what type of hemangioma, I can't tell you much.


CCF Neuro MD

[Katie]

I have learned alot from this forem and other web sites. Unfortunately, it all scares me to death.  I really feel like I have a death sentance.  I have had the cavernous angioma for 3 years and have had bleeding in my brain.  Mine is not in an area where surgery is possible.  I am just in a lot of pain from headaches and seizures.  I feel like I am a walking time bomb.  It scares me.  I read what I can but it still doesn't look like I have good chances for a hopeful outcome.  I do appreciate this forem though, because it does let me know I am not alone in this.

[Shera]

Q.  I had an MRI done and my pcp told me that I had haemangioma.  He didn't state anything more than that and I unfortunately didn't ask.  My symptoms over the past few months include: headaches, neck pain, and burning in the generalized area of T1,T2.  He did state that it was a cluster of nerves sitting on T2.  I have an appointment in 4 weeks but I would like your opinion on the type of haemengioma and the treatment you think they would give.  Thanks

[Shera]

Q.  I had an MRI done and my pcp told me that I had haemangioma.  He didn't state anything more than that and I unfortunately didn't ask.  My symptoms over the past few months include: headaches, neck pain, and burning in the generalized area of T1,T2.  He did state that it was a cluster of nerves sitting on T2.  I have an appointment in 4 weeks but I would like your opinion on the type of haemengioma and the treatment you think they would give.  Thanks

[CCF Neuro[P] MD, RPS]

Thanks for your comments.

CCF Neuro MD

[Michelle]

I am so glad to find that there are others with this condition!  I was diagnosed with a cavernous angioma 2 years ago and have had two rebleeds.  Mine is in the "wrong" place and they cannot do surgery.  I suffer from excruciating headaches and nearly daily seizures.  I also have many speech and memory problems.  I am on anticunvulsants, but this doesn't seem to do much more than lessen the severity of the seizures.  I am just glad to know that I am not alone in my ailment.  I do sometimes wish that there was a treatment option for me besides medication.  The daily seizure medicines don't bother me so much, it's the fact I have to sometimes take pain medicine for the headaches.  If it weren't for those, I feel this illness would be easier to handle.  Just wanted to put my two cents in and am glad to know I am not alone!