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.

[double_K_mommy]

A related discussion, Should I wait another 5 weeks to see my neurologist? was started.

[Stefanie0613]

A related discussion, operation was started.

[Roxy180]

A related discussion, Blood vessels coming apart around my Cavernous Angioma on the cerebellum is this bad? was started.

[maggie]

Thanks for your response. I have been waiting for an update before posting. My GP has referred me to a Movement Disorder Clinic for the tremor, weakness and speech difficulties. I am aware that they will be looking at Parkinsons. Maggie

[CCF Neuro[P] MD, RPS]

Dear Maggie:

Usually tremor is caused by chanes in the basal ganglia or cerebellum and not the midbrain.  There might be a small possibility that the tracts that go to the cerebellum might be affected but this would not be bilateral as you described.  I would think that your tremors are from another entity other than you midbrain cavernous angioma.

CCF Neuro MD

[maggie]

I can't believe I found a forum to address cavernous malformations. My MRI indicates a focal patchy area in midbrain, 8 mm, probable cavernous vascular malformation. Also 3-5 micro T-2 flares which represent ischemic changes. The neurologist was very concerned because I also presented with tremor, weakness in the left leg and both arms. Pain, cramping and twitching in both lower limbs.

The vascular surgeon did a clinical evaluation and reviewed the MRI. He seemed to suspect Parkinsons and referred me back to the neurologist but did not seem concerned about the malformation. His staff did call and request I see him again in two months.

The tremors and fatigue and a recently developing difficulty with words affect my life the most. Should I continue to pursue neurology for a diagnosis? The only one I have seen was for spinal cord disease. Thank you for providing this website.

Maggie

[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

[CCF Neuro[P] MD, RPS]

Dear Ursula:

I would highly, highly, recommend that you go to a comprehensive epilepsy center before considering surgery.  If you are in the majority, then your memory and language centers are located in the left temporal lobe.  Removing it would have grave consequences.  Get fully worked up and evaluated before any decisions concerning surgery are made.

CCF Neuro MD

[ursula reilly]

Q  I AM A 24 YR OLD GIRL.IN 97 MY FRIENDS AT WORK NOTICED ME HAVING SHORT BLACKOUTS AND TOLD ME TO GET THEM REVIEWED EVENTUALLY AFTER ALOT OF PERSUASION I HAD A CT SCAN DONE IT SHOWED A BRAIN TUMOR LEFT TEMPORAL LOBE, THE NEXT WEEK I WENT FOR SURGERY TO DISCOVER AFTER THEY OPENED MY HEAD UP IT WAS AN OLD BLOODCLOT WHICH PRESENTED LIKE A TUMOUR.
2 YRS ON I AM STILL ON TEGRETOL AND STILL GETTING THE VACANT SPELLS (BLACK OUTS).
I RETURNED LAST WEEK TO MY NEURO-SURGEON AND WAS SENT FOR AN MRI ONLY TO FIND OUT I HAVE A CAVERNOUS ANGIOMA ON THE OUTSIDE OF THE TEMPORAL LOBE ,HE SUGGESTED SURGERY TO ME AS I CANNOT DRIVE ,CANNOT DRINK ,AND TO GET MY LIFE BACK IN ORDER.
MY QUESTIONS ARE WILL THIS BE THE END OF BLACK OUTS OR MAY I HAVE THEM FROM THE THE SCAR TISSUE?
IF I DON'T HAVE SURGERY HE SAYS IT MAY BLEED AGAIN SO AM I BETTER TO HAVE THE SURGERY?
CAN THE SURGERY LEAVE ME WITH FULL BLOWN EPILEPSY/BRAIN DAMAGED?
THE DR ACTUALLY ADMITTED THAT IT MAY HAVE CAUSED THE OTHER BLEED AAND THEY MAY NOT HAVE SEEN IT WHEN THEY WENT THE LAST TIME.

I NEVER REALISED THERE WAS PAGES ON THE INTERNET LIKE THIS I AM SO GLAD I HAVE SOMEONE TO TALK TO AND JUST TO LET YOU KNOW YOUR WORK IS REALLY APPRECIATED.

       REGARDS URS.

[CCF Neuro[P] MD, RPS]

Dear Jennifer:

It usually isn't too difficult to tell a Cavernous Angioma from an AVM.  There is a big difference in prognosis.  The initial thing is to sort out the diagnosis.  Another issue, is where the abnormality lies. If it is in eloquent cortex then the questions become more serious if you have a bleed.  Then the question is how big the lesion is, the bigger the more serious it becomes if it bleeds.  Let's suppose it is small, in an area where if it bleed it wouldn't cause too much problem (frontal cortex on the non-dominant side of the brain), then I think the odds would be in your corner to have a child without a high level of risk.  However, there is always risks with brain vascular lesions.  The next issue is if problems arise in pregancy, such as hypertension, edema, HELLP syndrome, eccamplsia.  There are alot of things to think about.  It is always best to get multiple opinions and advice (neurologists, OB/GYN, etc).  I am sorry that there isn't a simple answer.  Always hope for the best but plan for the worst.

Sincerely,

CCF Neuro MD

[jennifer]

Dear Dr. CCF(neuro):

I have sent my film to mass. to dr. olgivey a specialist in aneurism's and he felt it was a carveneous angioma, along with two other specialist one in Col. MO and the other in KC. My neurologist at one time called it an AVM and another time a Carvenous Angioma. I am just confussed on what to do.
Have you ever treated a patient with one of these and were they pregnant. If so, and they were pregnant did they carry and deliver without complications? I have gone to a high risk gyn. and he too says that it is up to me but everyone takes risk everyday. But that doesn't help me any, I just get more confused, making me feel as if this is really dangerous and they aren't telling me. Don't you feel that if it was life treatening they would tell me not to have a child? Would delivering early help or is the most dangerous time in the early stages of  pregnancy? I hope that I am not boring you it is just I have never been able to have someone to ask these questions to when I think of them and I am very appreciative that you are here.
Please see if you can comfort me a little. My husband and I are however a little more comfortable about going ahead and having our own child since it has been several years now without any problems. I do still have the headaches during my period and lightheadedness some but I was told by an ENT that I have a deviated septum and I do get several sinus infections a year, better then it use to be.
One last thing, I know you probably can't believe it. Do you know of any good and trustworthy doctors in the Columbia area? I would appreciate your input.
Thanks for listening and such prompt response.

[CCF Neuro[P] MD, RPS]

Dear Jennifer:

It is so difficult to tell you anything about prognosis without seeing the films etc.  I think that you have to balance what you want with the possible outcome (and living with the outcome).  I think that you need to find out if you have an AVM or a cavernous angioma.  If an AVM bleeds it is much worse as there are arteries involved, while a cavernous angioma is just low flow venous vessels.  Child birth can be tramatic, but if you have a C-section, alot of the increased ICP generated from pushing would be reduced.  Talk to your neurologist who knows what the scan looks like and then make some choices.  Most cavernous angioms are found when patients have symptoms, I would suspect that there are alot of patients who have this entity who go through life without much problems and have many children.  But, alot depends on where, how big, etc your lesion is.  Sorry, I'm not much help.

CCF Neuro MD

[jennifer]

I too am glad to hear that I am not alone.
I was in a car accident in Mar. 1991, right out of college. My head hit the windshield and I received several liesions on the forehead.  The night of the accident I was treated and released with no CT completed. I was at home and somewhat o.k. for 48hrs. then started sleeping constantly and having some tingling in the tips of my fingers which then lead to the left upper extremities and left side of the face, primarily in the V1-V2 distribution and some into the anterior V3. I then went to see another doctor at a different hospital whom stated that I looked o.k. by the in office neurological exam but because I had a head injury a CT should have been completed the night of the accident. I was given a CT scan and it was discovered that I had a bleed from a venous angiom in the superficical quadrigeminal area of the mid-brain. I also developed hydrocephalus on the brain which called for a VP shunt to be placed. I have what I have heard progressed remarkably although still develope times of tinglyness on the left side of the face. I have been seening a chiropractor where I have been receiving tense that has helped greatly with this. I do however, still experience headaches(mainly during my menstrual time) which are being treated with migraine medicine(Zomig). I have had a balt with anxiety through all of this feeling as if I am a walking time bomb, like others have felt. My main concern at this time is rather or not it is safe for me to have children. I am 31 yrs. of age and will be 32 in June and my husband and I would truly love to have a child of our own. Could you please give me your feelings on this and if you have ever had a patient with this. I have also been told that I not only have the venous angioma but also an either Carvenous Angioma(which most believe it is) or AVM. Please give me you input of the danger involved for me in having children and the percentage of death in having one of these.
I am so thankful that I have found you and am able to talk with others on this.
To others with this, if any of you have had children with this condition and could get back with me I would appreciate it. E-mail me at [email protected]. I hope I have not bored anyone but this means a lot to both my husband and myself. Thanks for the time and being there.

[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!