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 Patti:

No one understands the desert storm syndrome.  So any relationship to it and fibromyalgia is pure speculation.  Although the medication you talk of has been related to cardiac valve problems, I have not read any correlation to neurotoxicity. Sorry that I am not much help to you.

Sincerely,

CCF Neuro MD

[Patti]

have had memory problems since taking fen phen in 1995,, diagnosed with fibromyalgia and periodically get total body paralysis,lasting from an hour to 14 hours. weakness,, etc.. docs thought possible familial temporary paralysis,, had mri and found increased signal in the basil ganglia,thalmus region, and docs said didn't know if this was part of my problem with paralysis.. memory loss bothers me. i read about the results of desert storm syndrome mri studies and found that they showed the same as mine.. fibro and desert storm symtoms are quite similar.. could the use of fen phen have caused neurotoxicicity, thus showing up like that on my mri??

[CCF Neuro[P] MD, RPS]

Dear Jennifer:

The midbrain is an extremely important brain structure.  The communication between the cortex and spinal cord travel through the midbrain.  One can loose part of the hemisphere and function but if one looses part of the brainstem, especially the midbrain it would be difficult to live.

You need to speak to a neurologist who has seen the scan, the extent of the angioma, and talk with him/her about the possibility of pregnacy and outcome.

CCF Neuro MD

[jennifer]

I have spoken to others about my condition and it is said that I have a venous angioma which is commonly found along with a caverrnous malformation. At times it had been called a cryptic malformation which they stated is a cavernous and malformation together.
I had questioned the location of mine and they stated it is located in the eloquent tissue, not the frontal or dominent hemisphers which do not apply in my case, but the mid-brain(part of the brainstem).
They stated that there are some literature which states could have a 20% increase in risk during pregnancy and some say just a 4-5% increase. This doctor felt that since the statistics on this condition was so faint and there are probably many others with this that are not known of, the odds of life being treatened during pregnancy was slim and if were him he would probably proceed with pregnancy knowing there might be some risk involved, live paralysis, etc. but again didn't believe death.
You had question the location and I thought I would get back with you on what I found out hoping this might help you in helping me become a little more comfortable with my condition and in deciding to have our own child.
Please let me know how you feel on this and if you have had patients with this that went through pregnancy fine.
I again want to thank you and your collegues for having these forums and for being out there for us who need someone to chat with on our medical problem.
Thanks for taking the time and hope to hear back from you, I will be watching. Thank you and God Bless!

[Phyllis Catherine]

My husband was diagnosed as having a cavernous hamangioma nearly a year ago. His symptoms were severe headaches and a distortion of vision. As his hemangioma was in a very deep part of the left temporal lobe he was advised to have regular scans and tegretol daily. In the last three weeks he has had different symptoms- like electric shocks throughout his body.  He has an appointment to see his neuroligist, but these new symptoms are very worrying.  I wonder if anyone else has had these symptoms?  I also find the forum a great help. Thank You.

[CCF Neuro[P] MD, RPS]

Dear Phyllis:

I would call your neurologist and let him/her know about what your husband is experiencing.

CCF Neuro MD