Quantcast

AVM Survivors Network

Just Diagnosed with Right Cerebellum AVM....have questions!

#1

Hello,

My Mom was just diagnosed with a Right Cerebellum AVM. We are waiting to get into yet another specialist being the one she just saw is referring her to someone else. They have indicated that the AVM is a grade 4. She has not had any seizures and it was only in testing for other issues that they discovered the AVM. From what I have read they don't typically do surgery on a grade 4. I will be going to the doctor with her next week and looking for any additional information out there. Thanks in advance!!!

Loooking4answers

#2

Hello, learning of an AVM is scary ! My best wishes to you ! So far mine has worked out very well, praise God. Eight years ago at age 64 I ACCIDENTALLY also learned I have a 3 cm AVM in the occipital part of my brain. I have never had a symptom,praise God again. The 3 cm is too large for surgery my neurosurgeon advised. But gamma knife ( non invasive/radiology) surgery was offered. I checked extensively and decided not to under go the gamma knife. Here now eight years later and still no symptoms I am grateful for that decision as I am fine and healthy and lead a full life with no detriment from the AVM ! Clearly my age was a chief factor in all of my decisions about the AVM. Thusly in no way do I suggest same for anyone else. We are all different,have to chooose what's right for us as individuals. I send my greatest hopes for the best of health for you and your family. Sally in Birmingham, Alabama.

#3

Hi I discovered my AVM accidentally 4 years ago too. Mine was also grade 4/5, which I know many consider too big to operate on. However my neurosurgeon did successfully remove it via craniotomy. It was not without huge complications though; the surgery lasted 15 years & I suffered a large haemorrhage during it which when I woke up left me with hemi paresis on the left side. I was in rehab hosp for six months trying to regain movement. Four years on I’m a lot better, can walk etc but have v little use of my left hand/arm & fatigue problems. However I’m completely AVM free now and I did have terrible symptoms before (headaches etc). The surgeon told me at the time if I didn’t get it removed the chances of a bleed were high & increasing every year. Obviously having a bleed out of the blue the size if my AVM I most likely would not have a chance to survive.

I wish your mum & you all the very best. X

#4

*hours not years!!!

#5

Hello,

I would suggest to get multiple opinions especially from some of the doctors recommended on this site. I had a few doctors say that surgery was out of the question, mine was considered to be a grade 3. I finally sent my films(MRI, Functional MRI and Angiogram) to Dr. Spetzler at the Barrow Neuroscience in Phoenix. He has 48 hour turn around opinion. He did resect mine last April.
I will keep your mom in my prayers.

#6

Thank you for everyone's information....I really appreciate it. Has anyone heard anything about the doctors at the University of Utah?

#7

Sorry to hear about this. Mine was found accidentally,too and was easily accessible. The neurosurgeon sai,though that I could wake up with motor issues. Mine starting leaking and was removed but I have left side paralysis.
My point is to make sure you explore all the options,get another opinion,and consider the risk-benefi based on your individual circumstances
Bestope all goes well

#8

I had mine from birth it resulted in a strokeI have written two books kindle Peter’s Stroke Of Luck Part1/2 I didn’t know anything until the stroke If I can be of any help my email is ■■■■■■■■■■■■■■■■■■■■■■■■ I’m not a doctor but I’ve experienced it and fighting back I am 58 years old born in England Living in France look on facebook there are some pics

#9

The AVM in my head was discovered in a similar way while looking for something else. They used a gamma knife. The options were gamma knife, embolization and open head surgery. Based on size and position, they felt the gamma knife was best. They did admit post-surgery that the gamme knife caused scar tissue on the side.

#10

I was diagnosed with a very large AVM in my left cerebellum at the age of 30, they were amazed I had any coordination in my left side, my diagnosis was slim to none, after seeing several doctors I was referred to Dr. Robert Spetzler at Barrow Neurological Institute in Phoenix, Arizona, I was told he is the one doctor that could perform this surgery with the highest success, so I made an appt., then flew to Arizona, I am on disability, but I still get around, drive etc., Thanks to Dr Spetzler I am now 54, I have survived 24 years, never give up until you get the answer you are hoping for! God Bless and I wish her with the long life in which I have been so Blessed with! His phone number is 602-■■■■■■■■.

#11

I've had three bleeds. The first was unexpected, didn't know I even had avm in brain. The second occurred while I was in the hospital re-learning to walk/write/talk. That was 14 years ago. However, that's not all of the story. I went on to get married, and become father of two children. Then, 5 years ago I went to a checkup with my neurosurgeon and they saw a small avm that they stated probably wasn't a problem but they would like to go ahead and take care of it. No worries. Well, that was in Fall 2009. February 15th, 2010, the third bleed happened. I had a shunt installed during the previous bleeds, but this bleed required a craniotomy. I am not trying to scare you or cause a stir, but the craniotomy is the worst surgery I have ever had. It was terrifying and very painful. I say all that to say this, if you have the opportunity to have the avm eradicated by gamma knife or embolization, do it. Don't wait on the doctors' advise if you are concerned. Doctors are wonderful instruments of healing. However don't wait if the doctors aren't sure. Blessings.

#12

#13

Paul, in regard to your statement of choosing embolization or gamma knife to eradicate an AVM, rather than waiting for a possible craniotomy to be necessary, may I further address fron all the information I've ever received gamma knife is 80% successful, not 100%, and usually takes at least 1 1/2 - 2 years to be fully effective, and there are possible negative after effects, many of which we also read about from people contributing to this very site. . Point being there is no guarantee, whatsoever, that gamma knife will obliterate the AVM. So many, many things to consider-----.like I have most of them. And thusly my choice not to undergo gamma knife for ny AVM which was found accidentally over eight years ago when I was 64, and since then no symptoms whatsoever. Granted if I were younger I might make different decisions. But I am most satisfied and pleased with my decision and pray for my continued AVM symptom free good health . Sally

#14

Hi there....firstly welcome! I wasnt aware of any gradings of AVM's? I had one removed in 2011 in the same location (see my bio for more info).

Anyway it maybe that she can have it treated by laser and not require surgery...either way will keep your mom in my prayers and keep us updated...God bless

#15

Hi Paul! I to have suffered multiple bleeds, I basically lost count after the 13th hemorrhage. My AVM was always inoperable. Six years after the first bleed, I suffered my second. This time they had developed proton beam radiation, so I was treated with that. Three years after treatment I was treated again. I continued to hemorrhage, relearn everything, and finally graduated from college. I went on to get married, but chose to not have children. It would have been great difficulty in raising them, lifting them, waking up early, etc. I knew this stubborn AVM was still there and not done with me. I was right. Some 38 years after the first hemorrhage and the time the AVM presented itself, it bled again. This time a craniotomy was necessary and the hematoma on my brain stem had to be evacuated. Dr. Martin at UCLA also was able to remove the massive AVM. He is half of the Spetzler/Martin AVM grading scale. It is one hard surgery to recover from,that is for sure. That was 2 1/2 years ago and I am still recovering, yet no one would ever know it. On the outside it appears as though nothing happened. To see the world through my eyes is quite another. Every single thing I do is difficult, so I understand. It is nothing but a miracle that I have survived, but I am struggling.

1 Like
#16

Hi
My parents found out I had a large CAVM when I was about 6 years old. There were no symptoms at that point. They and then they and I decided against surgery as surgeons said the risks were too great. Then I got some headaches, nothing too serious but I decided to have the AVM treated when I was 25. I didn’t want to really get going in my career and then have planned surgery so the time was right. The surgical techniques obviously improved a lot from 50:50 life/death when I was 6, changed to a much lower risk of death and a 60% chance of no adverse side effects. I had I think 4 embolisations, craniotomy and then another embolisation. I have no idea what grade my AVM was as they didn’t tell me/my parents. The surgery was 13 years ago. I have epilepsy which is controlled, but I also have depression which has been much harder to deal with.

I know that it is frightening and the decisions are hard. I agree with the others about a number of opinions. Treatment can be for the best, but sometimes it is too risky. There are improvements so even if you decide now not to do anything right now it doesn’t mean there can’t be a review - the surgeons gave a lower risk even between when I was 21 and 25.

#17

Hi, I had a 3.5cm AVM with two aneurysms,( one aneurysm was coiled on a emergency basis).My AVM was located in the right perito occipital lobe. I had two embolizations and a craniotomy at Duke in North Carolina with doctor Zomorodi. I haven't had a headache since. My remaining aneurysms shrunk in just 6 months. Get a couple of opinions. I don't know where you are located but people here can really help you with doctors, question or if you just want to blow off steam. You came to the right place for help.If you have any questions feel free.

#18

Well, at least the good sign is that your mom has not had any symptoms so far! Many, many years ago, I heard that some AVMs can just live in someone with out any problems. However, that might be more rare, but do not quote me.

Good, good luck to you and your mom's future!!

Lisa

#19

Lisa, yes, yes, many people have AVM's and never know it ! They never experience any symptoms. I am one of those whose, one whose AVM was found by accident ! Well, no, I am not dead yet ! But I am 72 1/2 and so far, so good, thank God, I have not had ANY symptoms and hope I will die one day without ever having had one! Many AVM's are disovered during autopsy despite the deceased was never aware of having any symptoms of anything typical of an AVM.

Let's also remember there's not a great wealth of previous research and/or findings on AVM's because only technology in the last X number of years was developed so they could be found. Plus AVMs are rare. I think I've read only 300, 000 cases in the United States--such a small per centage of the population for medial science to be willing to pledge very many millions of dollars for research to hopefully benefit such a few.

Regarding technology advancements, the same is true for the coils and embolizations and gamma knife methods used these days unlike in yesteryears' absence of them. Which reminds us what a promising future of techonolgy and medical science discoveries there will be for future generations. How promising for today's young people with AVMs and those in future generations !

#20

Hello,

Incidentally, I also had a grade 4 AVM, in the left half of the cerebellum. I underwent several years of therapy afterwards, and made significant progress. Good luck to your Mom!