Cavernous Angioma

[Garnet Sherman]

My 16-year-old son had a cavernous angioma removed from his right frontal lobe on 11/16/98.  It was diagnosed following seizures involving the left side of his face and neck.  The MRI showed that it had bled. The pathology report said that it had been completely removed.  An MRI on 5/27/99 showed no evidence of an angioma.  On 10/31/99, he began to have seizures again and an MRI on 11/4/99 showed another angioma.  It appears to be near the site of the one which was removed, but not in the exact location.  It has bled.  The seizure activity is being controlled with 400 mg of Dilantin and 300 mg of Neurontin daily.  He has loss of muscle control on the left side of his face and in his left hand.  Surgery to remove this angioma is scheduled for Thursday, November 11.  Our questions:

1.  The appearance of this angioma and its rapid development is surprising.  Is this rare or common?  What would be a possible explanation?  Would we expect this to continue to be a frequent possibility and how should we monitor?

2.  Would his situation (quick occurrence, bleeds into tissue) indicate an increased risk that a bleed could be life threatening?

3.  How does an angioma develop and increase in size?

4.  On this site I have read that the potential for hemorrhage in cavernous angiomas is low.  My son's potential would seem to be high.  Are there indicators or precautions to take in his situation to decrease the likelihood of hemorrhage?

Thank you very much for this valuable service you provide.

Garnet

[Tony Gussio]

I am a 35 y.o. male and was diagnosed with a cavernous angioma ten years ago.  I have been taking mega doses of Vitamin C ever since and have not had any bleeding or noticeable increases in size ever since.  Vitamin C strengthens the blood vessels and your body lacks the capacity to produce "enough" when you age, according to Dr.Linus Pauling (Nobel Laur). The Doctors I have spoken with see no benefit, so there may be none.

If anyone would like to discuss further, my e-mail is ***@****.  I may not revisit this site.

Good Luck

[olivama]

A related discussion, cavernous angioma was started.

[Anne]

Two years ago my son, age 26, was diagnosed with an AVM of 1.3 cm in the pons area of the brainstem.  He was told that this is untreatable and has bled twice before. Later another doctor said that it is an cavernous anginoma. I would like to know the differene between these two diagnosis.  What is the long term prognisis of each?  Have there been any sucessful treatment of malformations in the pons?
thank you

[Anne]

Two years ago my son, age 26, was diagnosed with an AVM of 1.3 cm in the pons area of the brainstem.  He was told that this is untreatable and has bled twice before. Later another doctor said that it is an cavernous anginoma. I would like to know the differene between these two diagnosis.  What is the long term prognisis of each?  Have there been any sucessful treatment of malformations in the pons?
thank you

[meloney]

In 1992, while in nursing school, I was diagnosed as having an AVM.  It was located in the left frontal lobe, left and lateral of the left frontal horn. My symptoms were severe migraine-type headaches, dizziness, and loss of consciousness. An EEG showed the loss of consciousness as partial complex seizures.  I was started on Tegretal then Depakote.  Therefore my only uncontrolled sypmtoms were constant headache and times of the severe migraine-type headached.  In 1998, I began having severe  recurrent depression that was refractive of treatment and fugues.  After several suicide attempts and hospitalizations, a neurologist and neurosurgeon ordered MRA and EEG. The lesion was noted on the MRA but the doctors diagnosed it as a cavernous angioma that was deep within the white cortical matter.  No one would definitely come out and say it was a contributing factor in my depression and the neurosurgeon stated as long as my syptoms were under control, no surgery was needed.  I am now seeing a neuropsychologist who thinks the lesion is a main contributor to my depression.  If it is then my symptoms are not under control.  I have also been having difficulty with memory and concentration.  These symptoms could also be part of the depression, but considering where my lesion is located it may well be the latter.  I am so confused and want some answers before I start on another downward spiral. Could it be a cause?

[Juan P. Escobar C.]

Tengo un Hijo  de 4 a

[Marilyn Waddell]

I am 59 years of age.On May 13th,l996 I experienced a Cavernous Angioma.Since it was on the brain stem I was not operated on as they would operate to save my life only.I have worked very hard to overcome some of my disabilities and really would like a tremor of the right hand to be fixed so that I could at least control it.
I am presently taking olanzapine (zyprexa). This drug has not had any effect as yet.My question is whether I should have the surgery to ensert a pacemaker.This is an option but I don't want to be worse off. By the way,I was in a coma for a couple of days and am in good health now.

[patricia]

I also have a cavernous angioma in the brainstem.  It has bled three times now.   The deficits are not great - lack of temperature on right side; burning sensation right side body and left face.   Slight left gaze nystagmus and occassional hiccups and slight balance problem left side.  I have been recommended for surgery as radio therapy after second bleed proved unsuccessful.     The first bleed was the worst, the last bleed causing very little problem.   Any advice on surgical outcomes for removal of cavernous angioma in the area of the medulla would be appreciated. Alsodvice on removal following radio therapy would be appreciated as I understand surgical removal is much more difficult following radio theraphy.

[patricia]

Is this forum still active as I have a question I would like to post.

[CCF Neuro[P] MD, RPS]

Dear James Bliss:

If your right frontal lobe is not your dominant frontal lobe (language on the left hemisphere, right handed etc) then the surgical option might be a possibility for you. It would depend if the cavernous angioma was in a portion of the frontal lobe that is necessary for function.  Many times, large areas of the frontal cortex can be removed without decreases in neurological function.  We do remove frontal cortex for epilepsy surgery. What does your neurologist say?  This might be a way of being able to stop the lamictal.

Sincerely,

CCF Neuro MD

[James Bliss]

I am a 23 year old active male that was diagnosed with a cavernous angioma when I was 19. I have only had one seizure my entire life which was when it bled. I take 100 mg of Lamictal a day. At first my neurologist said to just leave it alone but now they are saying it could be removed. It is located on my right frontal lobe. I know you can't look at mt scans but is surgery a viable option?

[CCF Neuro[P] MD, RPS]

thanks for your comments.

CCF Neuro MD

[CCF Neuro[P] MD, RPS]

????????

CCF Neuro MD

[Aurora]

io ho un angioma cavernoso del tronco encefalo, vorrei, per favore, avere pi

[CCF Neuro[P] MD, RPS]

I don't understand your posting.  I would suggest your posting be in English.

CCF Neuro MD

[sterfnii irne]

engioma alfegato di bimba di soli 35 giorni , come trattare una patologa del genere?

[Maynard]

I had a right side cavernous angeoma that bled...it was the size of a golf ball and had to be removed.
The surgery was a success, but I was left with Hemianaposia, half vision, plus hearing impairment.

[CCF Neuro[P] MD, RPS]

thanks for your comment.

CCF Neuro MD

[CCF Neuro[P] MD,RPS]

Dear Garnet Sherman:

There are at least three genes known to cause cavernous angiomas and they are inherited in a dominant autosomal manner.  That is the patient has a 50% chance of inheritating the disease.  One usually sees cavernous angiomas in at least one of the parents.  Coiling is a technique to clot off an aberrant vessel or aneursym.  It is used by the neurosurgeons when the abnormal vessel or vascular mass is of the appropriate stuctural shape.

I hope that helps.

CCF Neuro MD

[garnet]

Thank you very much for your response.  The information which you have provided is very helpful.  Would you please explain "autosomal dominant type" and "coiling"?

Thank you.

[CCF Neuro[P] MD, RPS]

Dear Garnet Sherman:

Sorry to hear about your son.  The literature suggests that about 10% of patients with cavernous angioma have multiple angioma (unless your son has the autosomal dominant type then the percentage will increase).  Some angiomas are so small that they will not be detected by angiography and only when they become symptomatic do their presence become obvious.  They do have a tendency to bleed, and when they are located in a quiet part of the brain, there will be no symptoms.  It does seem that your son has more than one.  It might be prudent to have the MRI that he previously had read by a good neuroradiologist to see if there are multiple angioma.  As far as how dangerous these may be it depends on where the lesions are located.  So, I really can't tell you.  The angiomas will bleed, heal and rebleed.  As they do this they grow in size.  There is little that one can do about the bleeding.  If the angioma is located in a place where surgery or intervention (coiling, etc) can occur, then these are possible ways of controlling bleeding.  One needs to know the location, however.

Sorry, I can't be more helpful.

Sincerely,

CCF Neuro MD