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 Amy:

Sorry to hear about your cavernous angioma, especially the location.  The thalmus is the sensory regulatory pathway of the brain.  So, having a hemorrhage in this area would definitely affect your sensation.  As the thalmus is located near the hippocampus area where memory is generated.  However, unless you are left handed, most of the written and verbal memory is located on the other side, the left hemisphere.  It is not uncommon for these to bleed, and there are no predictors for this.  The brain regulates its pressure and so living at 10,000 feet would not be much more of a risk then living at sea level.  Pregnancy might put some added risk, but the degree of risk would be individual.  It would depend on how big the angioma, the problems encountered in the pregnancy such as seizure, high blood pressure, etc, and the difficulty of delivery.  Your age is also a factor, since you are alittle older.  I would speak to someone who has seen the MRI, knows you, and can follow you during the pregnacy.

Sincerely,

CCF Neuro MD

[Dear CCF Neuro MD]

Thanks so much for your input. Don't have to worry too much about pregnancy at this point but the thought has crossed my mind due to the biological clock ticking. :) Do the sensory changes ever get better in this kind of bleed? Sometimes the sensation almost feels burning or humming.  The main thing I guess at this point is that I don't rebleed. Seems from reading that rebleeds are kind of common.  Hope this isn't so in my case! Anyway thanks again for all your advice and for being here!

[CCF Neuro[P] MD, RPS]

Dear Amy:

The sensory changes will be your clue that something is going on with your thalmus.

CCF Neuro MD

[Amy]

DEAR CCF NEURO MD,
THANKS AGAIN FOR YOUR INPUT. WILL KEEP MYSELF ALERT TO ANY CHANGES WITH SENSORY, ETC.  HAPPY NEW YEAR!!!

[CCF Neuro[P] MD, RPS]

Dear Amy:

Your are very welcome, Happy New Year to you also.

CCF Neuro MD

[Tina in PA]

Hi, ,I would like your comment on my condition...Sept. I got hit on the left side of my face.  It killed a tooth, dislocated my jaw and damaged my sphintur muscle in my left eye.  Today I talked to the neuro surgeon after repeated CT's and MRI's.  They now tell me the fluid on the whole underside of my brain is not from the injury I sustained, it is a large fluid cycts and that part of my brain is missing??? But I don't understand ,  They say this is not causing the terrible headaches & I don't have to go back.  They are not removing it either.  I did not have the headaches til after the time of the injury? What do you think should I get another oppinion?  I Going to turn 30 on the 18th??  Your advice will be treasured, Thank-you Tina

[CCF Neuro[P] MD, RPS]

Dear Tina:

I am not sure what to make of your posting.  Headaches can be from arachnoid cysts, if that is the type of cyst they told you that you had.  If the cyst has been there your whole life (a possibility) and you didn't have headaches before the accident, then they are probably correct.  It may be that you have traumatic induced migraine or headache.  I would talk to your neurologist about this.  Maybe a visit to a headache specialist.

Sincerely,

CCF Neuro MD

[Amy]

Quick update. Guess this is kind of rare. Will repeat MRI next mo. to make sure it is not a different kind of brain tumor. If cavernous hemangioma may benefit from gamma knife. Not sure as so deep in Thalmus. If no surgery indicated I will go about my life peacefully and chalk it up to increasing awareness.

[CCF Neuro[P] MD, RPS]

Dear Amy:

I am not sure whether gamma knife is a viable long-term option.  The possible side effects likely outweigh the possible benefit of not doing the surgery.  I would doubt that your cavernous angioma is something else, because very few things would look like a cavernous angiom on MRI.

CCF Neuro MD

[Amy]

Thanks. I prefer to not have anything done. They tend to feel the same but want to repeat the MRI to see what's what. I seem to find alot of conflicting data about percentage of rebleeds. In the big pic I guess it doesn't matter because it will do what it does. Still once in awhile I think about it. Esp if the left side is real tingly. One day at a time. Thank you again.

[CCF Neuro[P] MD, RPS]

Dear Amy:

You are welcome.  Stats are just numbers generated from retrospective studies and the number do vary.  However, overall the percentages are not all that high.  They are in your favor of not bleeding.

Sincerely,

CCF Neuro MD

[Evie]

I am in a similar situation to Amy's, having been diagnosed with a cavernous angioma in the cerebellum peduncle and been advised to wait and see what happens.  In my case leakage or "oozing," which occurred 12/99, caused double vision, vertigo, nystagmus and tinnitus, plus throw in a few headaches.  Most of my symptoms have cleared up, and I am happy to avoid surgery, but I would still like to know the prognosis for this condition.  I am a professor and am unable to teach when these sypmtoms occur.  I also plan on doing research in Southeast Asia in a year and wouldn't want to have a rebleed while I'm there.  I understand that they might or might not rebleed, but have only seen the figure of 2% a year likelihood of a rebleed. Let me ask you, in your experience at the clinic, what has typically happened with patients who have been diagnosed with cavernous angioma and been advised to wait-and-see? Do most of your patients with this end up not having to have surgery? If there is a rebleed, in your experience, are they usually the same or worse than before?  With the longer passage of time, are you more likely to have a rebleed or not?  I understand there are no definitive answers, but your impressions on this would be most helpful.  Thanks for your time.

[CCF Neuro[P] MD, RPS]

Dear Evie:

Sorry to hear about your cavernous angioma.  The rate you quote has been in the literature but it is biased.  I think the rate is actually lower, because only those cavernous angiomas that are being followed are documented as rebleeding.  However, many are never detected.  So the actual rate is likely lower.  There is no way of telling what symptoms you may have with the next bleeding episode, if there is another episode.  So, it depends on how adventuristic you are.  You are your own indicator for bleeding.  Since you have had your angioma since birth, how many times have you bled?  Your symptoms may or may not be like the last bleed, and no one can tell you what the next one will be like.  So, it is a **** shoot either way.  You will have to go with what you want out of life.  However, don't live in fear of your problem or the problem will become your life.

Sincerely,

CCF Neuro MD

[Ulla]

Our13-year-old daughter was diagnosed with a Cevernous Hemangioma in the hypothalamic region/third ventricle when she was seven years old. She had her first bleed in November'93 with recurrent bleeds in May'94 and June'95. It shows that in some cases a Cavernous Hemangioma can have a high tendancy to rebleed.
Our daughter suffered a lot from headaches, vomitting, fatigue as well as neurological deficits after each bleed. Luckily she recovered pretty well with only minor problems. Our doctors (in New Zealand) advised against surgery because of the position the the Cavernous Hemangioma and its risks, but recommended radiotherapy. We did our own investigation and learnt that radiotherapy was not an option for these lesions.
We were running out of time and realised that our daughter was sitting on a time bomb, as any recurrent bleed could have taken her life. We made contact with a surgeon in my home-country (Germany), who was in favour of surgery. The Cavernous Hemangioma was completely removed in April'96. Unfortunately, the surgery left her severely brain damaged. We personally feel that in most cases a Cavernous Hemangioma in this area is best left alone and for nature to take its course.
Is surgery in the floor of the third ventricle possible, without doint any damge?
Is there othe websites on Cavernous Malformations?

We wish to have had access to a service like yours six years ago.

[CCF Neuro[P] MD, RPS]

Dear Ulla:

I am so sorry to hear about your daughter.  Unfortunately, there is always someone who is willing to do anything for anyone regardless of the risks.  I can only hope that your story will find its way to who needs to hear it.  I do not know of any websites on cavernous angioma.

Sincerely,

CCF Neuro MD

[Eric]

My wife was just diagnoised with a cavenous angioma in the right frontal lobe in a region of magnetic susceptibility,which has previously hemorrhaged and is 8mm in size.She suffers from severe migraines and chronic headaches and also has chaiari malformation which is 8, mm. our questions are,Can either or both of these cause her migraines? Is 8mm large for a cavenous angioma?And are there any medications to control the angioma or is suegery a must? Thanks Eric

[CCF Neuro[P] MD, RPS]

Dear Eric:

What did your neurologist tell you?  When a cavernous angioma bleeds it often will produce a headache.  Whether this is causing your wife's migraines I cannot tell.  8 mm is not a huge angioma and lucky that it is in a area that should not cause alot of neurological problems (I am guessing by what you told me). We usually just watch the angioma, but if it looks like it would severely compromise the neurological status, surgery may be undertaken if the location of the angioma is not in a bad place.

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!

[CCF Neuro[P] MD, RPS]

Thanks for your comments.

CCF Neuro MD

[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

[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.

[CCF Neuro[P] MD, RPS]

Dear Shera:

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


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 [e-mail]. 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 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]

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 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

[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 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

[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

[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!

[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

[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 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

[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 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]

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

[Roxy180]

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

[Stefanie0613]

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[double_K_mommy]

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