Quantcast

AVM Survivors Network

Cerebellum & Brainstem AVM


#1

Hi, Lulu!

I survived a RUPTURED, cerebellar AVM almost 25 years ago. Rapid diagnosis and a skilled neurosurgeon saved my life! I have deficits, but you would not know it. Life changed, but once accepting this, I found new things to fulfill my desire to contribute and enjoy life.
:heart:️ Lifeisgood


About the Cerebellum & Brainstem category
#2

Thanks for sharing. Hope for me yet then. I’m seeing my neuro next month so will have to enquire again. Best wishes.


#3

Lulu,

Are you seeing a neurologist or a neurosurgeon? I don’t know where you live, but I’d check out well-regarded, university medical centers with strong neurosurgical services.

(My surgery was not, but my AVM was bleeding. No time to waste!)

:heart:


#4

Hiya. I’m in Milton Keynes. The nearest neuro hospital is JR in Oxford (about an hour away) and they call me in for scans and consultations every few years. In fact I’m going for a consultation next month. I was offered treatment for my AVM years ago but refused it at the time as I felt the risk of deficit outweighed the risk of bleeding.


#5

Hello, Lulu!

Oh, so you live “across the pond”! I live on the West Coast of the U.S. And, you have been aware of the presence of the AVM for some time? I can understand how you would be reluctant to dive right into neurosurgery. It is a BIG step!

I had an urgent craniotomy, as my signs and symptoms were sudden, and an AVM was suspected and confirmed then and there. You have been monitored, it seems, and until now you have been stable? GOOD!

What I can say is that treatment for AVMs has come a long way. About 30 years ago, I attended a nursing continuing education program. Doctor Charles Drake, of Ontario, Canada, delivered a talk on AVMs. At the time this was extremely risky surgery and he was one of very few to really take on these cases. Since my surgery, in 1993, I am thrilled to see there are other means to treat smaller AVMs.

I am also thrilled to see such a site as as this. Information and support was nil during my time of need.

I will be interested to hear how your next visit goes. Keep in touch!

:heart:️, lifeisgood


#6

Thanks a lot Lifeisgood. Yes I’m in the UK - apologies, I temporarily forgot this was an international site.

You’re right and any sort of neurosurgery is a huge step. Particularly if your AVM is unruptured and you don’t have much in the way of deficits from it. My AVM decided to show itself when I was 12 and it caused Hydrocephalus. They cured the Hydrocephalus with a Shunt and said I also had a ‘birthmark on the brain’. It wasn’t until I was 24 when I was offered my first MRI scan that they knew it was actually an AVM. Here in the UK we seem to be a bit behind you guys in the medical technology stakes. I agree though that things have definitely moved on. Last time I spoke to my Neuro about treatment he said there was only 50% chance of curing me (unfortunately my AVM is a big’un), that I could be opening myself up to deficit that I don’t have now and that I would still be left with the Hydrocephalus. At my forthcoming appointment I would like to check again though and see what they say now.

Good to meet you and I will definitely stay in touch.

Lulu


#7

Lulu!

What a quick response! I didn’t realize AVM Survivors Network was an international site until reading entries, and thinking…mmmmmmm…! That makes it even more impressive!

My cerebellar AVM was described to me as huge. I am glad I didn’t have to make a decision about whether to have surgery or not, like you.

I’ll be waiting for your update,

Lifeisgood


#8

Hi Lifeisgood. Yes, we seem to have members from all over the place.

You’re right and it is a huge scary decision, one that I have always backed away from making to be honest. On the one hand it would be brilliant to be AVM-free. On the other I could end up with deficits I don’t have now and make life worse for myself. At present I really don’t suffer too much in my everyday life. I work, drive, have a family etc like anyone else. I’m hoping I never look back and wish I had treatment when I had the chance. But maybe that’s a little naïve. Its hard not knowing! But I do try to look at the positives. Hope you had a nice weekend.


#9

Happy Monday, Lulu! Good to be alive! Yes, I had a nice weekend. Sat., it was warm and blue, and I worked with shelter kitties. And, Sun., we had a downpour, and my halau (hula school) had a practice run-through of our program, followed by a pot luck dinner. So very nice!

Decisions, decisions! I don’t know how long ago you were diagnosed. And, what were the signs/symptoms that led to the AVM diagnosis? Cerebellar AVMs don’t cause seizures, which send many to the doctor.

Enjoy the week!

:heart:


#10

So sorry you haven’t heard from me before now Lifeisgood. For some reason I didn’t see you message. So glad you had a nice weekend and hope those between then and now have been good too. Lovely to hear that you work with shelter kitties. I would really like to do that but sadly don’t have the time at the moment. Instead we have taken in some shelter cats over the years and have never had a bad experience with doing so. I admire anyone who gives their time to do something like you do. Re my cerebellar AVM, it was diagnosed back in 1997. I knew I had medical stuff going on 10 years before that though. In 1987 I was admitted to hospital suffering from Hydrocephalus. CT scans showed a build-up of CSF that wasn’t being drained by the normal routes (ie blood vessels) and was causing me to have very painful headaches. Fast forward 10 years and I was offered an MRI which showed a large AVM in my right cerebellum that prevented the fluid finding its way to the blood vessels. I guess I am lucky not to have seizures but the Hydrocephalus being recurrent is a pain.

Best wishes
Lulu


#11

Hello. Lulu1!

Sorry it has taken me so long to return your kind email! I have to warn you…my head is a little fuzzy right now, as I got up at 2:30 a.m. to watch the wedding of Prince Harry and Meghan. Now it is quite windy outside and pollen is making me headachy!

Yes, I love cats. I have ONE, 14-year-old, tabby, adopted from a shelter. I volunteer a couple of hours at a time, thus expanding my “feline family”. It is healthy for me and socializing the cats readies them for home life. (“Poppy” found a home today.)

I wanted to check out what you mentioned about your hydrocephalus and your AVM. SO, I took one of my books from the shelf. CSF is produced in the choroid plexus of the ventricles. circulates in its own “highway”, and is absorbed by the arachnoid villi. The CSF pathway and blood circulatory pathway are separate and distinct. “An obstruction at any point along this pathway will lead to dilation (expansion) of the lateral ventricles, termed hydrocephalus.” Maybe the AVM was obstructing flow of the CSF, causing the hydrocephalus? The AVM is best viewed with an angiogram.

I, too, had headaches since the age of eleven. I did not have hydrocephalus. It would have been VERY NICE if headaches had ceased after my surgery, but no such luck! I am extremely blessed to be ALIVE. Lifeisgood!


#12

Hi Lifeisgood. Hope you are well today. I know exactly what you mean about being blessed to be alive. Yesterday I went for an appointment with an interventional neuroradiologist at my nearest neuro hospital. I found it an incredibly humbling experience actually and feel so lucky to be alive and have what I have. He compared a recent MRI scan to one I had done in 2016. That year I went through something like a Stroke that wasn’t an actual Stroke but a ‘mimic’. He reckons a blood clot might have got into my AVM and compressed it giving stroke-like symptoms. He was expecting me to be disabled but I have fully recovered from that. Anyway he is going to consult Sheffield again about doing Gamma Knife. Sheffield has the say-so on what is safe to do and what isn’t here. Years ago they refused me GK without multiple embolisations first. But this radiologist said they might have had a rethink. Fingers crossed huh?

Best wishes and hope all is okay with you.

ps Your kitty sounds gorgeous. I have 2 black and white rescue cats currently. They are sisters and really friendly. I wouldn’t be without them.


#13

Good Morning, Lulu!

That is interesting news. Things change with time. Once you were not a candidate for GK, and, who knows? Maybe you are now. Let me know.

Yep! I am a cat mama! In fact, my 14 year-old tabby is on my lap right now. I love her more as she ages. I have a soft spot in my heart for the seniors, and often gravitate to the seniors while at the shelter. They are often with us after their human dies. So sad. :two_hearts:

Lifeisgood


#14

Hi Lifeisgood.

Lovely to meet a fellow cat mama. I have always been pretty loopy about cats myself. They have such a lot of individual character and are such great company. Good on you for giving the seniors some love. I feel so sorry for kitties that get passed by just because of their age. There is a lot to be said for the older ones and they have grown out of those scratchy kitten habits and developed unique personalities. Long live your tabby. She sounds like such a sweetie.

Yes I’ll just have to wait and see what my long-term prognosis is now I guess. Here in the UK it feels as if knowledge is behind what it is in some areas of the world, despite increasing globalisation. Ho hum.

Have a great weekend.

Lulu x


#15

’ Mornin’, Lulu1!

‘ Waking up to a bright, sunny morning! ‘Just hope it is not as HOT as yesterday… 90s. I had better dress and take my walk pretty soon, before it heats up!

We finally have kittens at the shelter where I volunteer. “George”, a handsome boy that looks like he might be part Ragdoll, was already spoken for by his foster mom! The two, grey, SH girls were probably adopted already, too! Darling! But, as I said, especially during kitten season, I like focusing my attention on the CATS.

As for your visit to the neurologist, it is amazing to me how much more is available to treat AVMs. About 30 years ago, I went to a continuing education class for nurses, physicians, and Dr. Charles Drake, from Ontario, Canada, spoke of surgical treatment for AVMs.
It was EXTREMELY RISKY and he was one of the few who would attempt it. (I did not know that about five years later I would undergo surgery!). Now there are alternatives, depending on where and how extensive the AVM is, and other circumstances. This site is a wonderful boost, too. I had NO support and it contributed to the mental anguish I experienced. No one understood. So, continue to keep on top of the research, be informed, and keep in touch.

Enjoy the coming week!

:cat2: lifeisgood


#16

Hi Lifeisgood. Sorry its been a while. Hope all is okay with you. I can’t believe it is June now. We’re definitely into Summer although the weather alternates between being summer-esque and Spring-like still. Today is a good day. Its not baking, but at least warm and dry, Ahh, so pleases to hear about the kittens at the shelter. Hope they found their forever-homes. As you say, its harder for the full-grown cats. I agree it is amazing how many more options there are for AVM treatment now. When my doctors first saw my AVM on a scan they called in a ‘birthmark on my brain’ and didn’t have a clue how to treat it. I thank heavens for the internet and this site too. Back then there was no information and I thought I was alone with this as well. Have a lovely weekend. Lulu x


#17

Dick thanks for the nod to AVM’s in the Cerebellum. I’m interested in any and all updated information; coping mechanisms; or support or encouragement from fellow AVM-ers.

Hi Lulu. Hope you are doing well. I’ve had a lot of stressors in my life since January, and I’m fearful this could alter my AVM status, which was 4cm and is now 2cm and holding steady. Doctors want to wait a while longer (if at all) before doing another GK procedure. Due for Angiogram soon. How do you guys de-stress??

Sharon D…


#18

infoneeded just found this section our son Cody’s AVM sits on top of brain stem and is very large had another gama knife 5 mos. ago very lethargic [normal?] meet with Drs. in Dec. after another MRI. We are still looking for and appreciate any info on what others are experiencing. thanks Ron [Cody’s Dad he is 37]


#19

I survived Cranial AVM at the age of 9 in 1985 that’s what they called it at the time. I underwent surgery and my mother reached out to a Neurosurgeon in Germany, Dr. Hipocheck unsure about the spelling I was his second successful surgery and at the time he had the most. I do have seizure’s 1 to 2 a year, but I have no headaches although blinking lights spinning rides and flat screens do bother me and can’t drive. But I am now 42 and all but 2 men send I wouldn’t live to see the age of 10. My Neurologist at the time Dr. Fogan always told me to keep my hopes high and my spirits lifted because the moment you doubt yourself or your doctor is the moment you give up. Three ways that I get rid of stress 1 go for a long quiet walk with someone somewhere in nature after relax in a jacuzzi with soft music. 2 practice at your favorite sport mine is basketball so I just shoot hoops. Or 3 get a great book a quiet place and read or go to your local library get a good children’s book and read to them.