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AVM Survivors Network

Hi. Interested to hear from anyone with Avm in right parietal lobe in eloquent area of brain


#21

Thank you. :heart: Yes, 3 different doctors said to leave it alone before we sent everything to Stanford and they told us they could treat it. He had his first treatment on 10/17/17.
Its basically a huge gamble. But we felt we were guided to the decision we made. Its extremely difficult to know what is right and it is for sure a giant nightmare. Hopefully we all get to wake up from it someday!!


#22

Thanks to All for your advice. Then I also think my AVM is ‘eloquent’ too. It is in the part of the brain that controls physical movement and balance, right down near the brain stem. This is why docs don’t want to treat it. The damn thing is also large and I can’t have gamma knife without several embos first. I have been told unfortunately that attempting to treat enhances the risk of rupture.


#23

Hi Andrea,
I feel sure that if you felt guided then it is the right thing to do. If you and your son can believe in and imagine having a healthy brain then it will happen. If you can please let me know how it goes. Good luck.x


#24

Hi Lulu,
Yes I’d say that’s probably in an eloquent area then.That must feel devastating not given a choice.
But things can change so hopefully soon the doctors will be able to do it. Medical technology and research is improving all the time. A 'mindfulness course with meditation 'through the doctors really helped me to try to live in the moment more and stop panicking, it may help.x


#25

Hi Gill,

I am also from london, and I have a unruptured 4cm AVM in my occipital lobe (also eloquent). I am about to have the first of several embolisations to treat my AVM at the NHNN at Queen Square on the 26th this month (next week).

For me, my AVM due to its size and high blood flow, I have lost the lower right quarter of my visual field in both eyes. Because of this, my consultant recommended that if I leave my AVM I risk losing more sight, If I have a bleed/stroke I risk total right visual field loss. I was not offered craniotomy because for me I have been advised by two neurosurgeons I would lose my right visual field and highly risk a bleed/stroke and potential right side weakness.

I think the choice for treatment was made easier for me because it felt like less of an option and more of a necessity due to my symptoms affecting my daily life.

I will keep everyone updated on how I get on with my embolisations :raised_hands:

I am sorry I didn’t notice this post sooner since this is very late notice but if you are free tomorrow -

Will definently organise another London meetup soon too :slight_smile:

Best wishes

Corrine


#26

Hi Corrine,
Thanks for your reply. That must be very scarey for you losing part of your sight. I’m glad the hospital are able to help you and pray that everything goes well next week. Yes please let us know how it goes. How are you feeling about it? Are you able to talk about the risks and positive outcomes they have told you about?
They won’t do craniotomy on me either as it’s too dangerous but I’m praying for gamma knife. I guess you will have gamma knife afterwards then. I actually live down the south coast and can’t make Birmingham sorry, but thank you for the invite.x


#27

Hi all
Just to let you know there is hope in an eloquent area as I found out today! I’m going for gamma knife in 3 months time. I can’t believe it can take up to 4 years and that from 6 months to 18 months you are at risk of seizures. I’m worried about how I can cope with this avm over the next few years and how do you all cope with living with the constant risk of a brain haemorrhage? Hope you are all OK.
Gill


#28

Gill,

The only way to think of it is that day by day it is getting better, not worse. Without treatment, it is just ebbing the wrong way.

I guess there are stages in gamma that are more dangerous than before but the overall plan is to work towards getting better. I completely agree that it takes real patience and courage to wait out gamma knife. But it is progress and has real opportunity for people like you.

Very best of luck with it. Much of this game is about patience, I fear.

Richard


#29

Hi Gill, the waiting is interesting for sure. I had Gamma knife 14 months ago now and the first while was the most difficult. Like everything else these things throw at us, we seem to adjust. Part of the journey I guess. I had some more frequent headaches right after, but nothing major. I have them frequently again now, but not to the point of medicating. I’m not sure anymore as I haven’t felt the same since the bleed so can’t chalk it up to one or the other. Look forward to the day, its not bad and it gets the clock started! Take Care, John.


#30

Thank you so much Richard and John for your words of encouragement and for sharing your experiences, it helps me a great deal.
John how did you find the gamma knife treatment? Did it hurt? How long did the whole thing take? Thank you. Gill


#31

Also John how long did you take off work after gamma knife? Thanks.


#32

Gill, the only thing that hurt was the mounting of the frame, it was uncomfortable but sure wasn’t that bad. They freeze the 4 sites, and I would describe it more as pressure. I was in the hospital at 0630 and released at around 1230. They did a CT, and MRI and then the actual gamma knife took 24 minutes. Has another angio been required I would have been there much longer. This all happened on a Thursday and I was back to work on Monday. I know these times vary, they told me to be prepared for a long day, and I know some stay overnight, but all went perfectly well so I was sent home. John.


#33

Hi John,
Thanks for the information I’m glad to hear yours went so well and quickly. I’m having another angiogram as well that day. My Avm is about 1cm. Do you have all the tests at the same time, ie angiogram, scan, gamma or do you go back to the ward then wait to go back in again for the next test?. I want my family to be there but I don’t want my 4 year old to see the plate on my head, will he if he’s waiting in the ward? You are being such a help, I’m very grateful.
Gill


#34

Hi Gill,

Sorry for such a late reply, Thankyou very much for your kind words and wishes :heart:

I feel at this point (less that 8 hours before my 7am arrival time) nervous and tired. I am just ready to get it done - bags are packed, bedroom is tidy and clean for when I return, lets do this!

Cons: There is a small risk I believe of a bleed/stroke, there is also a small risk of me losing some vision. But these risks are far lower than that of a craniotomy for me or of me living without treatment. I am likely due to the position of my AVM if I have considerable swelling to experience visual loss until the swelling goes down (which might require me to take steriods to reduce swelling which comes with its own side effects) - I can only speak for my case. There is also a risk embolisation isnt sucessful, that the feeder/s aren’t successfully blocked or that new main feeders sprout in reaction.

Pros: They believe they can shrink my AVM by maximum 30% safely per embolisation. I could experience a considerable relief in symptoms of my avm once ive recovered from each procedure. I may potentially if I am responsive to the treatment, have my AVM completely eliminated after 3 embolisations. Or I may need gamma knife to eliminate the remaining AVM once it is fully embolised - but hopefully once my AVM is fully embolised it is hoped it will be small enough not to cause as many troubling symptoms.

Have you had your angiogram yet? Is embolisation an option too?

Would london work for you? I am thinking once im recovered from my embolisation to organise another london meet up :slight_smile:

Best wishes,

Corrine


#35

The first thing they did with me was attach the “halo” as he scans were taken for precise position and it is used to hold your head completely immobilized. I went to the CT scan, then to another room for MRIS and back to the Gamma knife department where they originally attached the frame and then into the gamma that was in another room. If I needed angio it was in another room, but close. The CT and MRI were quite a “wheel” away. I guess it depends on the hospital set up. It was a little entertaining getting wheeled down the hallway with the frame attached, people tried not to look, but did. I would try to catch there eye and say “g’day”, most replied hello. It was entertaining and lightened my mood, the nurse wheeling me was getting quite a charge out of it as well!


#36

Hi Corrine,
Thank you for sharing that with me. The pros sound really positive so focus on that today. I will say a prayer for you and look forward to hearing your great news when you have recovered.
I had the results from my angiogram at Queens square on Wednesday, you are in the best place! They said embolisation wouldn’t work for me and gammaknife was my best chance.
Yes I’d love to meet up in London, I may have to bring my 4 year old, but he is a lot of fun!
Good luck for today, you will feel great later when it’s all over.x


#37

Hi John
Thanks for the information it’s great you have such a good sense of humour even with a frame on your head! :slight_smile: I hope I can be as brave as you on the day. Take care. Gill


#38

Hi John or anyone that knows,
The neurosurgeon told me there’s a chance of a seizure or epileptic fit after gammaknife. What precautions are you taking incase that happens. Ie should I stop driving and swimming until it’s gone? Thanks
Gill


#39

No limitations for me Gill, I understand there is always a risk but my Dr felt mine was low given the location. I think it varies greatly on where located , size and if a previous bleed. My bleed didn’t result in seizure, but do have a “void” as a result of the bleed and subsequent clot around it which allowed them to apply a liberal dose. Not to sound like a politician! The seizure risk was discussed as a likely result of a craniotomy due to the AVM being deep. One reason why I went gamma, less risk of seizure and a number of other side effects. John.


#40

OK thanks John. Take care.