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AVM Survivors Network

New AVM family looking to learn a few things


#1

My ten year old daughter recently suffered a rupture of her AVM, something we weren’t aware she had until it occurred. Fortunately she is almost 100% after just a month. Unfortunately her AVM is both large (huge actually) and deep in her brain. We’ve been told by doctors Dr Spetzler and Dr Rosenwasser that it’s inoperable (not surprising given it’s size and location) and that embolization isn’t an option. Someday radiation may be, but not until she reaches adulthood. Perhaps what’s most difficult at this point is feeling alone in this experience. Not that I haven’t felt there aren’t others with AVMs to talk to, but I’ve scanned the profiles and don’t see anyone on here who has, or has a child who has, a very large AVM that’s untreatable. I would love to talk to anyone in the same boat. I could use some success stories help me feel more optimistic.



I am also wondering if anyone has explored diet as a way to strengthen veins and increase health to possibly decrease risk of ruptures? We are scheduled to see a macrobiotic counselor this week. I don’t know if I’m doing the right thing. While my daughter is a willing participant, even cutting back on the sugar and certain foods has been frustrating for her. I’m concerned and uncertain if the change is worth the stress.



Something else I don’t understand and intend to talk to our doctor about this week; I keep reading about how hormones are bad for an AVM. My daughter still hasn’t gone through puberty. Does puberty pose additional risks? And will her AVM continue to grow? That may be a sesperate question and unrelated to hormones. I can’t get a handle on this and would love to better understand what’s to come.



Finally, how many opinions should I be seeking? I understand the anatomy of her AVM and the uphill battle we face. I was told early on that if Spetzler wouldn’t touch it, don’t be seeking out someone else who would.



Sorry for the long message. Thank you for your time.


#2

Welcome, FamilyFirst, you are not the first family here to have a child with an inoperable avm, and I will broadcast this discussion in hopes that others with similar situations will come forward. Keep in mind, too, that our adult members with inoperable avms were in all likelihood once children with inoperable avms, though they didn't know it at the time. About this sentence, "I was told early on that if Spetzler wouldn't touch it, don't be seeking out someone else who would," I think that is wise advice. About puberty and growth, that is somewhat unpredictable. Pregnancy, however, is generally not considered advisable with an untreatable avm, though please confirm this with your daughter's doctors. There are many success stories here. This is a place of hope. I hope you will hear some of them soon.


#3

Thank you very much. I really appreciate your reply. I look forward to hopefully hearing from others who are living through a similar situation.


#4

I would highly recommend the team at MGH in Boston - dr. Paul Chapman leads proton radiation team. Feel free to reach out to me to exchange emails. We have a now 11 yr ok’d don who’s avm is inoperable due to location and I have had an avm in occipital part of. Y Brian removed 20+ years ago. I can share diet advice from y Jen personal experience and current treatment with our son.


#5

Hello,

My 8 year old daughter has a very large, deep, untreatable AVM as well. I’ve gotten opinions from both Dr. Spetzler and from the Rochester Mayo Clinic. Both told us the same thing - attempting to treat would most likely cause more damage than it’s worth, creating permanent stroke like symptoms or worse. She experienced her first actual bleed just a couple of weeks ago. Luckily, it was minor as far as bleeding in the brain can be.

I haven’t researched anything related to diets or hormones. Sounds interesting. Hormones raise a particular concern to me as I began experiencing migraines with puberty. She already has them, I wonder if they’ll get worse?

Please feel free to contact me at any time. I haven’t found anyone else with a child who is considered untreatable.



Kelly Jensen


#6

Kelly, if you friend each other you can private message using the site messaging system. I am going to edit out your email here, though you are welcome to exchange privately, as we get the occasional spammer.


#7

My AVM is both large and Inoperable and I have seen Dr Spetzler on several occasions and he has advised me not to have radiation on my AVM. To just live my life and enjoy myself. I am 58 and found out about my AVM when I was 45. By that time I had three grown children, each of my pregnancy was normal with the exception that I experienced a lot of mirages tha lasted for about a month the first trimester. I had nice deliveries, no drugs, I used Lamaze, and it worked beautifully.All three of my children were born healthy. The increased hormones caused me headaches for a short while during my first trimester. Back when I was having symptoms weakness on my left Side and headaches they did not have MRI to check us out with. Hope this helps! Your daughter can live a beautiful normal life. I won’t lie to you sometime ti seems unreal to have this condition but I have done soo much since I found out that I have an AVM. It has not stop my life! Changed it some, yes redefined it yes! Made me appreciate more certainly! Good luck with your grandchildren.


#8

FamilyFirst,

Welcome to the group; I'm glad to see there are a couple members here who have run into a situation similar to yours that you can talk to - that's always helpful.
As far as hormones go, there are case studies that have shown that hormones can stimulate the growth or regeneration of an AVM. I had an AVM that was obliterated via craniotomy 20 years ago. At that time, it was thought that once an AVM was completely removed in an adult, there was no way it could grow back. Children, however, could have an AVM that was removed grow back simply because their blood vessels were not finished growing.

It turns out that the hormones contained in oral contraceptives and the shift in hormones in pregnancy can also stimulate an AVM to grow which is precisely what mine did. The normal hormones which occur when kids go through puberty is not something I have much information about, but that sounds like an excellent question to ask your doctor.

However, keep in mind a large AVM is not necessarily more dangerous than a small one, indeed, small ones are more prone to rupturing than larger ones, and other things such as how the AVM drains have more influence on risk than how large the AVM is. Most people who have an AVM that is not treatable via craniotomy, embolization, or radiactivity have their AVM closely monitored with yearly MRIs to track any changes that may occur.

Don't think that "inoperable" means the doctor is going to not do anything at all or that you're on your own; most likely the doctor will want to monitor the AVM.


#9

Hi Familyfirst. Perhaps it would make you feel better if you knew my history. I am now 56 years old. I have no idea how large or complex my AVM was. However, it was probably pretty complicated since the first 2 neurosurgeons thought I was Inop. The 3rd neurosurgeon operated and the AVM was obliterated.
My AVM did not bleed until I had just turned 30. Everyone says it should have bled earlier. I have to say I probably did everything incorrectly for someone who had an AVM. I lived in the Orient for 2 years in a rural area. I lived in Europe for a year as well…traveling to remote places. It did not bleed until much later.
I worked at Walt Disney World as a VIP Tour Guide Hostess. I rode roller coasters for a living! I then worked as Flight Attendant for Eastern Airlines. I worked to South America all the time. It did not bleed then either.
The AVM bled while landing in Miami!
Yes, the bleed was massive! I had less than 2 hours to live at one point and received Last Rites. I survived and learned to sit up, crawl, and walk again!
I returned to flying and I am now currently working for American Airlines.
Never give up hope!!!


#10

Thanks mom2three. I have sent you a friend request. I will send you my email, as well. I did write someone from MGH this morning. While she is not an AVM specialist, she is a Ped Neurosurgeon who is a personal friend of a friend. I figure she will redirect me to the right person. Sounds like Dr. Chapman may be the person. I have been interested in proton therapy. I would like to hear about the diet advice you have. Thank you.


#11

Mom, I found this online, however, I do not know if they do Proton Beam Radiation on children with brain AVM's. What I can say is that I had Proton Beam Radiation to attempt to treat my AVM and I had a massive brain bleed 6 months after the radiation.

http://www.proton-therapy.org/treating_braintumors_story.html

Perhaps you can check on it, but from any knowledge I have Dr. Spetzler would give you the best advise.

Your daughter will be in my thoughts & prayers. Please stay strong & positive, Mom!


#12

Thanks Kelly. I'll email you and have sent a friend request. I look forward to talking with you.


#13

Thank you Shirasaya - I really appreciate you taking the time to share your information. It was very helpful and gives me greater perspective.


#14

Thank you, Barbara, for sharing your story. You're obviously still flying, which is great. I had been told early on that flying/changes in cabin pressure could be unsafe (by a friend, not a doctor). The doctor told me that wasn't the case, that flying was okay. Have you ever been told you shouldn't? If you have it obviously hasn't affected your approach to life, which I think is great. You talked about how you did everything incorrectly. Do you mean because you lived in rural areas? I get the roller coater reference. I've already broken the news to my daughter, who loves any roller coaster, no matter how big and fast, that her days of the big coasters are over. She is accepting of that fact, although she's been accepting of most everything until faced with not doing it. I don't think we'll be heading off to the amusement park anytime soon. Thanks for your response. I really appreciate it.


#15

Thanks Donna. The last line of your message made me cry. I'm hopeful we get there someday. I have not been too concerned about pregnancy because, quite frankly, if she decides it's too unsafe to carry a baby someday, there is always a surrogate. I just want her to live a good life. I appreciate you sharing your story. It means a lot.


#16

Thank you, Louisa. I appreciate the information.


#17

My AVM is both large and Inoperable, I'm 30 and my AVM was discovered when I was 5 because I had a semi paralysis on the left side of my body. They're not sure how the semi paralysis occured, if I had a minor bleeding or if the AVM has affected the rest of my nerves. Surgery is out of the question, so is embolization as they are both very dangerous. I had radiation when I was six and although they believe it has stopped the AVM from growing, it has not stopped the bleeding and recently I've been told that my paralysis has been getting worst as I get older due to the radiation. So I suggest that your daughter waits for her brain to fully develop before she receives radiation. I also have been recently told that pregnancy would be too dangerous due to the hormones but puberty did not affect me, My only option is to leave it untreated, which has worked out so far. I'm in Montreal and asked my doctor for a referral to a clinic in Toronto, a second opinion won't hurt. Hope this helps.


#18

Hi!
I am 21 years old and also have an avm that is too big to operate. I got to know this 2 years ago. I’ve been seeking alternative medicin and I go to a acupuncturist that says I will be 100% recovered in 2 years. I don’t know if I believe her but I hope so. Soon I will go over all the investigations about the avm, which I will do every other year until it “changes” I guess. I haven’t seeked a second opinion though, which I should.

Keep holding on and don’t trust the doctors 100%, seek alternative medication as well. Since I went to this “witch” I’ve been decreasing my epileptical medicine (caused by my avm).

Hugs!


#19

Hello, first off no need to apologize. I have always believed the more info the better. I do not have a child with a brain AVM but I myself(now 34) have what they are calling an AOVM(Angiographically Occult Vascular Malfornation I suffered a mini stroke from it in my senior year in high school but did not find out what I had until 2006 after moving to the current state I live in. Just wanted to share that go with your gut and don't take no for an answer. My malformations are not too big but they ARE in deep parts of my brain and they don't want to try and remove then as I have more to lose than gain. My limitations are light and sound sensitivity, I have memory issues(especially short term, and my childhood memories are like swiss cheese. I have problems focusing and bad anxiety as well.
If you have any other questions feel free to private message me.


#20

We found out that my son had an AVM in his brain-stem at 12 years old. It was stopping the flow of spinal fluid and so he developed hydrocephalus (spelling?). They first had to do a ventriculotomy (cutting a hole in a brain ventricle) to relieve that problem. Then he had gamma knife at the University of Virginia with Dr. Steiner. I know that they told us that they had no idea what function he would lose when the AVM was obliterated because they did not know what the vessels were connected to. I'm assuming that this could be the reason that a really large AVM should not be radiated. It took about 2 years for his to be gone with regular follow ups and I am happy to report that he is now 18 years old in his Freshman year of Engineering School at VCU and a very active skateboarder and surfer. His AVM did grow as he grew which is why it suddenly blocked spinal fluid flow at 12. I hope that maybe this answers a few questions. I know this group is very helpful and uplifting. Blessings.