Quantcast

AVM Survivors Network

My treatment options


#21

Hi Carol. I have a large unruptured AVM of the Cerebellum. I'm well in the minority on this site because I have chosen to leave it be. I found out I had a medical condition at 14 but didn't know it was an AVM until I was 27. I am 42 now. My AVM doesn't give me many problems in my everyday life. I do have slight balance problems and a mild bruit. But thats about it. I don't get seizures or headaches like some folks on here. So I am very lucky. And perhaps that had some bearing on my decision. Due to its size I would also need to have my AVM embolised at least 3 times and then Gamma Knife. Surgery is not an option for me due to the AVM's location. And any of these treatments are risky with a good chance of more deficit than I have now. I don't feel the 'ticking time bomb' response that others describe. I just thank my lucky stars that I'm here and well. What will be will be. Good luck in whatever decision you make. xx


#22

Hey Jean

Haven't quite made the choice yet. I was at Macquarie University on Monday last week seeing the doctor that would operate if I want to have it taken out. They are very nice there, I was referred to them by my neuro in Canberra. I really hope you get some good news from them.


#23

Hi AVM Sandy
Thanks for your reply:) From what I read Dr Spetzler is one of the best for AVM's. I feel very lucky that I am able to be treated and have options. Staying positive is the key for me.


#24

Hi Lulu

Its a really personal decision isn't it. I can understand why you decided to leave yours alone. If I hadn't had a seizure I wouldn't have known I had an AVM. I even think I am lucky to have got to 55 with no symptoms until the seizure. Thanks so much for you reply, I hope things continue to go well for you:)


#25

Thanks so much Carol. That really means a lot to me. You're right and it is a really personal thing. Noone else can tell you what to do. It has to be your decision and come from the heart. I'm a big believer in keeping a positive attitude and think that if you can do this whatever decision you make will be the right one for you. I wish you all the very best of luck.


#26

Thank you Carol I will let you know what they say, I have a video conference to compare treatment options if there are any at the end of May and hope I can either be helped or can move forward.

All the best Carol


#27

I just had a crainiotomy two months ago and I am cured!!! It’s so wonderful to have peace of mind and to never have to worry on a day to day basis. The recovery is long but my incision was 12 inches long like a head band wrapped around my face. Brain surgery is scary but for me… Not knowing what tomorrow might bring was harder. Good luck to you


#28

Hi Jean
I really hope they can help you. I believe quite a few people get referred to Macquarie from other states as I myself was. I guess because Canberra is only 3 hours drive to Sydney. Roll on the end of May so you can see what they say. Keep me posted.


#29

Hi Tania

Fantastic! The peace of mind is a big one isn't it. I was wondering about recovery, guess its different for everyone and whether you have complications. My brother had a craniotomy 4 years ago and he said he was eating chocolate 2 days after the op. Mind you he is a lot younger than me....ahahahah.


#30

Hi! Making the decisions for my son in that situation would be tough. So in that I guess I can say happy I don't really have to. My son at 8 had a rupture and on the Spetzler scale he is a 5, so gamma knife it was that was nine years ago. Just in the past few months he had another rupture with more viens evolving and one with an aneurysm. This time they could embolize 75% the other 25% grade 5, so off to gamma knife again. This time for us if it were all possible I wished he could have it removed, so we can be done with this once and for all.And while the first bleed he recovered well with only a very slight problem with memory, the second has left him with moderate memory and cognitive issues that we know of at this time.He is going to be tested this next week to determine what his true function ability is.He will have rehab this time and tutoring.And memory is definitely affected. And a new life is now begun!In my opinion none of the options are fun or less painful. The more you know the better you will feel about making your decision.Just know that if you choose gamma knife it is a really long day for you and your family!Much love to you and yours. You all are in our thoughts and prayers.


#31

Hi Carol, I had my surgery done by Dr Erica Jacobson at St George Hospital in Sydney...she has since moved to Prince of Wales at Randwick and i find her to be fantastic...keep in mind she specializes in children at Randwick Childrens with brain tumors etc I felt confident in her doing the surgery...I didnt have the option due to a bleed i suffered out of no where and its kind of a gift and curse..i was told if i didnt operate then another bleed could be fatal...She was also assisted by Dr Davies from St George Hospital, who is also excellent from someone i know who had several tumours removed by him not too long ago..its one of thoses decisions you need to make with your family and stay positive and keep your faith in Gods hands...God bless and please keep us posted if you need anything in Sydney.


#32

Hi Adrian
Thanks so much for the info on your doctor. I am very lucky that I had a seizure and not a bleed so far. I've been thinking about staying in Sydney if I have the surgery, friends have even offered an apartment for us to stay in as they are away a lot. I'd rather stick around Sydney for a little bit before racing back to Canberra too quickly.


#33

Yeah I can understand that...look at the end of the day its one of those things in life we have to cross that not many people will ever have to consider in their lifetime...its not an easy one but the right one is in your hands to decide...as you see your not alone and theres a few ppl from here on this site...made me feel better after everything to know theres a big group of us...God bless and again if you need any contact info etc for my neuro i would be more than happy to supply it.


#34

Hi Tony

We were advised that although Prof Morgan was the best in Australia, that he is no longer operating. We (my son has the AVM) were sent to a neurosurgeon in Melbourne instead.


#35


#36

Hi Carol,

I am not sure my if story will be in help or not but thought I will share with you. I was diagnosed with Front right AVM, 2 yeas ago, I am from Melbourne 48 years old. First at Monash I was told surgery was not an option because of the size & location of it.I am on seizure medication. After another seizure, year later, we were led to see Dr. Mogan at Macquarie Neurosurgery. He agreed to do surgery on me despite the fact it was not the easiest. (Spetzler grade3 bordering 4)Two weeks later I was asked to Come to Sydney & said he will not do surgery as the latest research says not to surgery on AVM like mine. (its not very tight on one side) Deciding to say yes for surgery was hard even though I wanted an end to this. But did so thinking that if I had a rupture I will repent that I did not do surgery.
The next & only thing left for me was Gamma knife, so I was refered to Dr.John Fuller.He said this will be the first case that he would do GK of this size. After many months of discussions with Mayo clinic & other places, Dr. Fuller agreed to do GK for me. The first one was done in December & the next is 30th June. I do not feel any thing difference but as you know, we dont feel much symptoms other than the risk of rupture. Any way to see any effect of GK for AVMs takes a long time. I still feel some of the symptoms I used to feel, like ants running on my left arm. They say its normal with AVM. as it affects the blood supply.
I would recommend these doctors & the hospital to any body. They have made me so at ease every time I am there. If you need to know any thing about GK ask me I will share my experience as a patient. The doctors tells all the medical side of it.
Apart from that I still work, do most of the things I did . No driving. I had my seizure while driving. I wish you all the strength to take right decision, as living with this after getting know about it is hard. Also I was all ok to live with out any procedures at the first. It is all a mind thing, I was not very upset when Prof Mogan said he will not do surgery, felt relief kind of( funny isnt it) Let me know if you any more information from me as we live in Australia, we can even talk over the phone Take care


#37

HI ANUSL
Thank you for your reply. It sounds like you have been through a lot. Prof Morgan recommended surgery as the first option for me but was happy for me to see Dr Fuller as well. He did say that Dr Fuller would probably say surgery for me anyway due to it being Grade 1 I guess. I have been referred to Dr Assaad as Prof Morgan doesn't do operations anymore, so I saw Dr Assaad and he was very nice and very patient with all my questions. I still haven't decided which road to take. A friend at work said something to me last week which was poignant: "try and be decisive with this as its a big decision" then once you decide you can spend the rest of your life messing around and procrastinating with the little decisions!! Him saying that sort of got through to me....ahahaha


#38

Your friend is so true and that decision can be done only by you, how ever much our family loves us , nobody can tell us what to do. As long you know that you are not the only person who goes through this. That's sad that Prof Morgan, does not do operations any more. Every body over there is very good. Take Care. Have a good day


#39

Hi ,

Can you please let me know guys…i have one doubt this AVM is related to brain cancer or not…


#40

Some one is got same problem … doctors dis gamma knife surgery…all are said this is brain cancer …but…i have doubt still confusion this is cancer or not.