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AVM Survivors Network

Cavernous malformation in the pons of the brainstem


#1

Would anyone be willing to share symptoms, and how you are coping? What is your lifestyle like. For those who have had a serious bleed, what happened?


#2

Personally, I have had lots of tongue tingling, some facial sensations and numbness, heavy head, scalp sensations, pain at the base of my skull, left leg numbness.


#3

There is a subgroup on this site you may wish to join to more specifically address your questions called the Cavernous Malformation Support Network. Go to the groups tab and you will see all the subgroups there. Best of luck to you!


#4

Hi Tami,
So sorry another CM was diagnosed.
Was your MRI recent & are you in the follow-up care of a CM knowledgeable neurosurgeon who can best advise a direction of care you feel is right for you?
I too have multiples & it's no fun.
My right thalamic (above brainstem) CM caused facial tingling & weird sensations after progressive bleeding.
I did have surgery to resect the thalamic CM & while the surgery was successful, I developed left-sided numbness & central pain syndrome post-op.
Our CM Support Network is @ http://www.avmsurvivors.org/group/cavernousmalformationsupportnetwork?xg_source=activity. Hope this helps.
Best wishes,
Patti


#5

Thank you Patti. I have joined your group. I am working on getting an appointment with a Neurology team in Boston at Beth Israel. My MRI was Wed.


#6

Tami, Welcome. The Cavernous Malformation Support Network will have more experience when dealing with a CM or multiple CMs. It's a kinda "we're all in this together" place of support. Please find a neurosurgeon who knows about CMs and takes them seriously. Some of the ones I visited just smirked about them compared to other brain conditions. I experienced seizures when mine bled, but mine was deep within the left frontal lobe just above the temporal lobe. I am still on seizure meds today even after Cyberknife and then Resectionto to remove the CM and the area of hemhorrage. I do not know about a CM or CM bleed in the Pons. As to my lifestyle, I run to keep my body healthy, and I write to give my brain some exercise. Hope this helps. Just keep posting for support. George


#7

Hi I had a bleed back in the fall and have had continuous headaches since .I have a weird feeling in my head when I stand up sometimes too. I am going to have surgery in a couple months to remove it before it bleeds again. I was told the risks are higher once you have had one and the risk of seizure too. Have you had surgery yet. I use Tylenol extra strength and Tylenol 2.


#8

Hey there! Just wondering if yours is a CCM as well? Very interested to hear more about it, as I’ve been told mine is inoperable.


#9

Hi mine was a cavernoma . It was in the left occipital area of my
head, and I had it removed last year in May. Everything went well and
so far no more problems. I still have to go for annual MRI’s and see
the speicialist. Where is yours located .Is that the reason they can
not operate. I wish you good luck . Lana


#10

Yes. Mine in in the brain stem. Surgery is too risky unless it’s a catostrophic situation. Glad to hear you are well & doing better since your surgery. At this point, I’m just hoping my symptoms subside!


#11

Hi again , what are the symptoms you are having. I have heard of a
number of people with AVM’s and CM’s in the brainstem. There don’t
seem to be as many people with CM’s compared to AVM’s. My symptoms
were non stop headache and I had to brain bleeds before surgery. Since
then only the occasional headache. I was also dizzy a lot before. I
wish you the best of luck its too bad they can’t just zap it with
lazer or something like that. Lana


#12

I know! A laser seems like an easy fix lol. I kinda have a laundry list of symptoms from dizzy, uncoordinated, headaches, severe eye pain, can only read/write/look at my phone or computer for a few minutes at a time, certain loud noises feel like I being stabbed in the brain, droopy eyelids, etc. in the process of getting into another neurologist - the one I saw had no idea how to treat me & never even looked at my scans!! Being on Medicaid isn’t making things any easier. I thought (or hoped) my symptoms would have decreased by now, but no luck there either


#13

I know! A laser seems like an easy fix lol. I kinda have a laundry list of
symptoms from dizzy, uncoordinated, headaches, severe eye pain, can only
read/write/look at my phone or computer for a few minutes at a time,
certain loud noises feel like I being stabbed in the brain, droopy eyelids,
etc. in the process of getting into another neurologist - the one I saw had
no idea how to treat me & never even looked at my scans!! Being on Medicaid
isn’t making things any easier. I thought (or hoped) my symptoms would have
decreased by now, but no luck there
I assume you live in the US. I am here in Canada . I live not to far from
Toronto. I had my surgery in a city called Hamilton Ontario. The doctor I
have is very good . Keep pressing for another opinion. There has to be
something they can do to help relieve some of your symptoms.


#14

Hi Tami and all in this thread,

My boyfriend, Kawan, had a cavernous malformation in his brain stem and had a third brain surgery in Oct. 2017 to fully get rid of it.

Post op, he had half facial paralysis (half of his face was paralyzed), slurred speech, dizziness, weakness on right side of body.

5 months post-op, Kawan’s whole face moves and he’s getting better everyday. Bodily wise, he is still struggling with right side weakness and some slurred speech so the symptoms really vary. but stay strong, we surely are!

Best of luck,
Sydney