I am so confused about this cavernoma business

[kdeaquinio]

My daughter was recently diagnosed with cavernoma in her brain.  I am still very confused about the whole thing.  I still worry about her like if something serious is wrong with her.  Is something seriously wrong with her?  Lately she has been bumping in to everything as if she can't see it in front of her.  Is that a symptom?  She has a doctor's appointment on the 28th of this month with a neurologist, but I'm still not sure for what.  I would really like some answers about what is going on with my baby girl.  She has had a CT Scan and an MRI.  The doctors still didn't seem to clarify things enough.  I NEED HELP!!!!!  

[jen_reeves]

13 years ago they did an MRI because I kept having migraines and they found out a calcification in my brain. They said it was a parasite and that it had calcified itself. Now, for the last two months I've been with migraines and other symptoms, I had an MRI done and today they told me that I have a "blood vessel malformation". I asked the neurologist if the MRI showed the calcification and she told me that I didn't have that, that I have a blood vessel malformation and that now I have to see a neurosurgeon. This shocked me so much because for 13 years I had been told that I had a harmless calcification and now they tell me a different diagnosis. I'm so confused and scared, I've been crying the whole evening.

[Nzandrea]

Hi Jen, I realise this is a long shot, as it was posted back in 2003, but please let me know what you found out?
I was told the exact same thing (calcification) but now I'm told it's a cavernoma.
Did you find out why it was incorrectly called a calcification?
Thanks

[jhfeyu64yi754h]

I also have cavernoma problem diagnosed in july2015. My consulting doctor operated and removed that bloody thing, now waiting for cure like difficulty in walking, talking, test problem in half of the tongue and handwriting. (from which handwriting is recovered) so don't worry much and fallow your doctor, one thing understand well that it takes time.

[Simplyprincessy]

i was diagnosed in dec 2015. my cavernoma is 6mm on left side near/above ear & i have massive migraines, hearing lost thus intense tinnitus, vertigo, ear pressures, killer headaches & neck aches!  Seeing neuro in april. :(

[momsthebomb67]

wow, we sound like twins! what was your outcome???I see the neurosurgeon on Friday to set a plan in place. I have a family history of brain aneurysms, so I terrified. Mine is 7mm in the left center gyrus!

[Car69]

I am newly diagnosed too officerjo...how are you feeling?

[Jonsosa]

Do u still use this site

[officerjo]

I just ran across this site, I am newly diagnosed.

[agillespie81]

Thank you mrpine for your comments.  As someone with a 3cm cavernoma hanging out in the right side of my brain, I happen to spend a fair amount of my free time browsing sites such as this.  I find it very refreshing to see posts such as yours, that offer very accurate info along with an overall positive outlook.  Good luck to you and all who have this condition/blessing.

[mrpine]

First off, the term cavernoma (cerebral, or cerebellar) refers to any cavernous venal or arterial malformation of the brain. The symptoms of a cavernoma vary widely. The symptoms displayed depend on the region of the brain in which the cavernoma is present. For example, I have been diagnosed with a large cavernoma in the hypothalamus, encroaching on the left ventricle. This bleed, in effect, caused me to lose my sense of spatial reasoning (couldn't tell which way was up, left, right, down, or how far away things were, etc.) I also experienced incredible vertigo and nausea for six months. Depending on where the mass is in your daughter's brain, the symptoms can vary. You should find out where the mass is located and do some research yourself on what that part of the brain governs... For example: If her cavernoma were to be in the hippocampus, then her memory would be affected by bleeds. The best you can do is educate yourself. When it happened to me, I was nineteen, the best information they could give us was that it was a mass and that it was located around some very sensitive tissues. In my case they can not operate, but this is very unusual, cavernomas, for whatever reason, tend to form in the more shallow tissues of the brain and stem. Chances are, your daughter will have a full prognosis for recovery, so long as she is given time to rest. The more she overstrains herself, the longer her body will take to recover. I know this information all sounds very general, and it is, but I've done a lot of research, and I've had first hand experience. So, take it from me, time is your best ally.

[jojo1604]

My husband had a brain haemorrhage in 2006 caused by a undiagnosed brainstem cavernoma.
His first symptom was not being able to place his feet where he wanted to, by the next day his speech was slurred, he had dizziness and double vision and he lost the use of his left side (pretty much same symptoms as a stroke)
I wouldn't worry too much as this all happened to him in the space of 3 days, he was 34 at the time and we had no idea what had happened, we were told that a cavernoma is like a little balloon full of blood, and in his case it burst and the blood pool caused the blockage of signals from his brain to his limbs and speech etc. (it was very frightening)
After mri scan he was diagnosed, and they said they couldn't operate due to the location of the bleed and he just had to rest untill his body absorbed all the blood again.
After an awfull 6 months he started to recover and is now 100% again with a 1% chance per year of another bleed. If it does bleed again they say he'll have stereostatic radiotherapy (basically they zap it with a blast of radiation to kill it, but it has to bleed more than once before they will do it!!!!?)
I think as your daughter has already been diagnosed before anything has happened chances are they can sort it out, but to echo another comment please keep a note of any symptoms as your doctor might need to know.

[neetsiepk]

I have a cavernoma on the left side of my brain which causes dizziness and numbness, migraine headaches, etc.  I have MRI's to see if it keeps growing.  It was explained to me by my neurosurgeon that it's a clump of blood vessels that's leaking a very very small amount of blood, and it reabsorbs that blood.  So they do the MRI every year to see if it's growing fast or not (to tell if they should operate or not).  On some people, they may never have symptoms, and will never have to have an operation, and may never know they ever have a cavernoma (because they may have had it at birth.)  My doctor gives me medicine for the migraine headaches and for seizures (which I have yet to have one, but just in case).  My doctor says if the cavernoma hemorraghes, I will know it, and then he will have to operate.  If the cavernoma continues to get bigger and cause problems I cannot live with, then they may have to operate.  If they operate, there is a very small chance you could die from the operation, I think a 20%? chance your personality will change, and a large percent chance you will survive with great results.  I hope this helps.  Have faith in God. I do.  Anita

[kdeaquinio]

in the CT Scan all they told me was that it looked like she had a mass in her brain and that's why we got the MRI.  When the doc came back that's when they told us about the cavernoma.  Only  they acted like they were rushing us out and didn't really give any info.  I will take your advice, though, and write down the questions I have for that doc on that day.  Thanx

[ampky]

Before she has her appointment, you may want to write-down questions you have for the doctors (including the location of the hemangioma).

There was a time when I also bumped into things.  The CT Scan and MRI should give answers. (Make sure copies of these are given to the Neurologist.)