If so, how are you doing? How far along are you in your recovery? If you don’t mind sharing with me the details I would greatly appreciate it. I would like to know what lays ahead for me.
wow i cant believe i found someone else. my avm ruptured in late october of 2010. i bumped my head at work wet my pants, i got so dizzy i cant beleive i didnt fall off my ladder. i went down hill very quickly. i just happen to be working at a friends house. everyone there went into panic mode, they were trying to keep me awake. but i went to sleep. they got me awake the first time and i fell right back asleep. i could here them flipping out as i fell back asleep. i went to a place that i can only describe as when you see the n.a.s.a spaceships floating thru the ozone layer. light on one side and dark on the other, i was stepping from the light into the dark when mr. ross sheridan slapped the life back into me, it gave me an addrenaline rush that saved my life. he picked me up and started running with me, i am assuming toward the ambulance. i am such a stubbern little shit that i tried pushing off him to walk myself. he looked at me and said i got you buddy, so i sucked it up and let him carry me. my recovery has been very difficult, i lost my children, i cant work, i have epilepsy and cant work or drive. but i am alive, wich i guess doesnt happen to often in our situation. i was a single parent with two boys before, since they have had to go back and live with there mother. i had to go back and live with my mother to. i cant not cry when i think of my children not able to be with me. i am probably going to have to take all the money i get back to get my boys back. for the first few months recovery was going very fast. then it slowed down for awhile and its picked back up recently. i hope this helps. good luck to you and your familly. keep your head up it only gets better. we are lucky to be alive
if you would like you are welcome to call me and we can talk.
Hi, Carolina. I had a cerebellar AVM that ruptured two years ago. I had a craniotomy to resect it. No rehab needed. Went back to work a year later, part time. Everythings pretty much normal except I am slightly dizzy all the time, have some focal issues with my eyes, and have an anxiety disorder now. Get some good head and neck aches just about every day but other then that I am doing alright. I have to say that my experiance wasnt all that bad even after having brian surgery. I wont lie, its changed my life in so many ways, but I lived to tell about it. And I think I 'm a stronger, more loving person for having gone through it.
If you have any questions feel free to ask. Best of luck in your recovery.
looking forward to talking to you
Hi Carolina, after surviving a cerebellar AVM rupture back in February of this year, I have to say that my recovery has been nothing short of a miracle and am very lucky to be here sharing my story with you :))!!! I was treated at Boston Medical Center where they did an embolization the night of the rupture which they felt treated 85%-90% of the AVM. I, nor did anyone in my family or circle of friends had ever heard of an AVM so there was alot of educating that needed to be done. After spending almost 2 weeks in ICU, I was scheduled for brain sugery. After having an angio the morning before my scheduled surgery, the doctors came into the room and gave me and my family the best gift ever. They cancelled my surgery due to the fact that 95% of my AVM was treated with the embolization. I just had the CyberKnife treatment to treate the residual 5% of my AVM and hope to be AVM-FREE within 1 to 2 years. After coming home on March 1st, I was riddled with anxiety and fear still not understanding what had just happened to me but will tell you that this did subside in time for me as I focused on the many blessings that this experience brought into my life and continue to live each day as if it were my last. I am a very lucky gal as I did not suffer from any deficits whatsoever and could resume normal life as soon as I was emotionally ready to. I will tell you that I am now back to work full time and am doing the things that I had once enjoyed in my life and try not to allow this fear and anxiety to win the battle. I am definately more tired than I used to me but I look at this as I need to catch up on some much needed rest :)))!
Many blessings to you and please feel free to message me if have any more questions.
well i guess i didnt really kno what cerebellar avm ment. mine was the size of a tennis ball in the front right of my head. sorry about the confusion. i just got excited when i thought you survived the same thing i did. sorry, but i would still like to chat so call or e-mail if you want to. thanks Brian Dube.
Oh my gosh, I can’t believe all that you have been through. As you have stated WE ARE LUCKY to be alive and I am grateful everyday. Of course there are days that everthing just seems overwhelming, like dealing with my lack of balance (I guess having had the left side of my cerebellum taken out can do that), my constant tiredness and sometimes lack of patience with my children (I feel like the worst mom). I am so sorry to hear that you lost your children due to this.
So glad to hear that things have been good for you. What kind of focal issues do you have with your eyes? I have nastagmus on my left eye and have lost some of the peripheral vision (I tend to see things either double or mainly 1 1/2 which is kinda disconcerting).
Hi Michele, so glad to hear that your outcome was a positive one. I too had an embolization of my AVM and 2 days later ruptured, unfortunately I also had complications (I coded a couple of times and suffered a stroke) my recovery has been what everyone considers nothing short of a miracle (I still feel like “come on its been 2 yrs, I shld be bk to my old self”) but like my hubs and mom say the doctors did not give them much hope of anything, so I am a walking miracle. I try to remember that when I am having one of my ‘not so good days’ My girls keep me rather occupied since I am how a full time stay at home mom so I don’t have a lot of time to feel sorry for myself (not that I would) not in me.
Hey Brian, don’t worry I think any kind of brain AVM is pretty rare so we are part of a rare group
Hi! So glad things turned out the way they did for you, and you are right healthcare professionals do make the worst patients, hahahahaha. I used to be an administrative assistant in the Care Management Department in one of our community hospitals. I have not been able to return back to work, not that I think I would survive the hectiness of my previous job. I am lucky to be alive and live everyday thanking GOD for giving me a second chance.
My 9 year old son had an AVM rupture in his cerebellum on December 3rd, 2019. It has been a long 3 months but he has made an astonishing recovery! He is fully walking, talking, and eating on his own. Doctors at first told us that it was operable but they wanted to wait a few months for his brain to heal and settle down, so they had scheduled an angiogram/embolization and surgery for the beginning of February. So in February they did the angiogram and said that they were only able to embolize about 60-70% of it and needed to do another angio/embolization before the surgery, so they scheduled another angio and surgery for last week (beginning of March). He had the angio done on Wednesday of last week and everything went well and they said that they were able to get it about 95-99% embolized. While we were recovering, our neurosurgeon came in and said that he did some research and saw that the mortality/morbidity rate in an AVM resection in the posterior fossa and cerebellum was about 20% which was more than he originally thought, so he started to tell us that he thinks we should now search for a neurosurgeon that has more experience with removing posterior fossa/cerebellum AVM’S and cancelled our surgery that was scheduled for last Thursday… so now we are heartbroken as we thought that this nightmare was finally going to be over and we would be recovering and moving past all of this… Can anyone suggest any neurosurgeon in the US that they know of that have successfully removed AVM’S in the cerebellum? We are desperate! Thanks so much!!!
Hi Cera, sorry for very late reply, what I learned from my experience is to see a neurovascular surgeon. They specialize in AVM. I don’t know where you live but here are the top 10 children’s hospital in the U.S.
U.S. News: Best Children’s Hospitals Honor Roll
- 1- Boston Children’s Hospital
- 2- Children’s Hospital of Philadelphia
- 3 (tie)- Cincinnati Children’s Hospital Medical Center
- 3 (tie)- Texas Children’s Hospital, Houston
- 5- Children’s Hospital Los Angeles
- 6- Children’s National Medical Center, Washington, D.C.
- 7- Nationwide Children’s Hopsital, Columbus, Ohio
- 8- UPMC Children’s Hospital of Pittsburgh
- 9- John’s Hopkins Children’s Center, Baltimore
- 10 (tie)- Children’s Hospital Colorado
- 10 (tie)- Seattle Children’s Hospital
Again my apologies for not responding sooner, but one of the many “gifts” of my event is short term memory, easily distracted. Best wishes to your son
I had brain surgery for my AVM 17 years ago and life has gotten better and better. I was in a coma for 6 weeks and stayed in the hospital for 2 months. I have had a life close to the Lord and am very thankful I recovered.
Hi my 21 year old daughter had a rupture 3 years ago and she had to go for 8 half hour operation to have the AVM removed she spent 4 weeks in hospital in ICU and HighDependency she’s doing great all her hair has grew back she’s walking talking even back to college dancing finished her 2nd year course but she has struggled it’s not been easy and she’s not fully recovered she gets tired so easy her headaches are unbearable she goes to hospital every 12 weeks for a/ steroid injection in her head to help with the pain her body temp is always to hot or cold she’s recently has numbness in her feet hands and she takes absence seizures but other than that she’s our miracle we’re so thankful we have her like I said she’s just had her 21st birthday she’s amazing we live in uk bonnie Scotland xx
Hi Michele, I wanted to see if you could give us an update as to whether the Gamma Knife worked for you? Also, did you experience any major side effects from it? The doctors ate now suggesting that GK is best for my son and I just would like to hear others outcomes of having the GK done in the cerebellum. Thanks so much!!
Hi! May I ask if your AVM was anywhere near your Brain Stem? My son’s is located in his cerebellum and is right next to his brain stem but does not involve it. We would really like to have it resected instead of GK but the doctor we are working with is pushing for the GK. Could you tell me what doctor performed your surgery? Thanks!!
My daughters AVM was in her cerebellum and the first we knew of it was its rupture. Very severe. The bleed compressed her brain stem and she was 100% without function for months. We are extremely lucky that she has recovered well after a very long hospitalization, recovery period and tons of therapy. Her surgeon credits quick response in getting her to the hospital because she didn’t suffer any oxygen loss. Anything you can do to prevent a rupture (or a second rupture) is very important. A bad bleed in this part of the brain causes devastating damage.
Thank you very much! We are now working with 2 doctors in Miami, Dr. McCrea and Dr. Starke. Has anyone had any experience with them? We were put on hold because of Covid but we just finally got another MRI done this past week. The doctors are saying that they now need to see another angiogram to be able to make a decision on surgery. As of right now, they are leaning more towards GK over surgery since it is right next to his brain stem (but it does not involve it). I really would rather the surgery as I have just seen so many people with a re-bleed after GK (and a success rate of obliteration of only 60-70%) and doctors say that he would most likely not survive another bleed in the cerebellum. Has anyone here had a successful GK in the cerebellum next to the brain stem or a successful surgery with a deep cerebellum AVM?