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auldcelt
@auldcelt

Posts: 5
Joined: Dec 16, 2016

Arteriovenous Malformation (AVM) Survivors and side effects

Posted by @auldcelt, Dec 16, 2016

I’m a survivor of an AVM in my right hemisphere. Since the surgery I am dealing wth migraines and wondered if anyone else has experienced this. If you have what have you tried to get back to normal living. I’m also interested in reading about studies and research on AVMs

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Hello my name is Heather. 10 and a half years ago I found out I had a temporal AVM because I had the worst migraine ever and I had a ct in the ER. I was sent to a specialist and because it was so large they had to do 2 separate embolizations. The first one went great but the second one a couple weeks later went bad. The catheter got stuck by the glue (onyx) that they use and I now have a catheter entrapped from my groin to my brain for the rest of my life. A day or so later they had to then remove the AVM, which was not in the plan. That night after my 3rd surgery I had a stroke because my vein closed in on the catheter and I was losing oxygen to my brain. I spent 10 days in the ICU and had to learn after that how to read write and speak again. I now suffer for the past 10 years with horrible migraines and numbness constantly and I am on lots of meds. I also had to have a 4th brain surgery because they missed a spot of my AVM. I am still trying to find an answer. I have even been a patient at Mayo Clinic.

@heather8900

Hello my name is Heather. 10 and a half years ago I found out I had a temporal AVM because I had the worst migraine ever and I had a ct in the ER. I was sent to a specialist and because it was so large they had to do 2 separate embolizations. The first one went great but the second one a couple weeks later went bad. The catheter got stuck by the glue (onyx) that they use and I now have a catheter entrapped from my groin to my brain for the rest of my life. A day or so later they had to then remove the AVM, which was not in the plan. That night after my 3rd surgery I had a stroke because my vein closed in on the catheter and I was losing oxygen to my brain. I spent 10 days in the ICU and had to learn after that how to read write and speak again. I now suffer for the past 10 years with horrible migraines and numbness constantly and I am on lots of meds. I also had to have a 4th brain surgery because they missed a spot of my AVM. I am still trying to find an answer. I have even been a patient at Mayo Clinic.

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Oh, no!!! Would love to know the place that did this! Doctors, etc. and you went to Mayo, too??

@heather8900

Hello my name is Heather. 10 and a half years ago I found out I had a temporal AVM because I had the worst migraine ever and I had a ct in the ER. I was sent to a specialist and because it was so large they had to do 2 separate embolizations. The first one went great but the second one a couple weeks later went bad. The catheter got stuck by the glue (onyx) that they use and I now have a catheter entrapped from my groin to my brain for the rest of my life. A day or so later they had to then remove the AVM, which was not in the plan. That night after my 3rd surgery I had a stroke because my vein closed in on the catheter and I was losing oxygen to my brain. I spent 10 days in the ICU and had to learn after that how to read write and speak again. I now suffer for the past 10 years with horrible migraines and numbness constantly and I am on lots of meds. I also had to have a 4th brain surgery because they missed a spot of my AVM. I am still trying to find an answer. I have even been a patient at Mayo Clinic.

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I went to UAMS Little Rock, AR. It was Dr. Erdem and Professor Dr. Yasorgil. I think I spelt it right. The professor was known as the best in the world about AVM brain surgery. I was the first that he left a piece of AVM. The other Dr. did my embolization and got the catheter stuck. I was the first to have that stuck also. It is now on FDA and there has been about 100 people all over. I went to Mayo Clinic about a little over a year ago for help but they didn’t really help.

Hello, does anyone else have a dura brain fistula? I was diagnosed with 2 of them and haven’t heard of anybody else having brain fistulas. I’ve read a lot online about them, but would like to talk to someone who has one.

Hello… my brother was diagnosed with an AVM and had his second procedure on Thursday. They said the procedure was successful however he is currently still in the hospital with complications that will require him go to physical and speech therapy. He has slurred and slow speech along with limited mobility in his right hand.

Does anyone know if this is expected and temporary and can be treated with therapy? He lives out of state and we are worried about him, I will be going there tomorrow to be with him but wanted to see if anyone has any additional insight or advice?

Thanks

Liked by EES1

@tanvir22

Hello… my brother was diagnosed with an AVM and had his second procedure on Thursday. They said the procedure was successful however he is currently still in the hospital with complications that will require him go to physical and speech therapy. He has slurred and slow speech along with limited mobility in his right hand.

Does anyone know if this is expected and temporary and can be treated with therapy? He lives out of state and we are worried about him, I will be going there tomorrow to be with him but wanted to see if anyone has any additional insight or advice?

Thanks

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So sorry to hear about your brothers complications. What type of procedure did he have done?

Liked by tanvir22

@tanvir22

Hello… my brother was diagnosed with an AVM and had his second procedure on Thursday. They said the procedure was successful however he is currently still in the hospital with complications that will require him go to physical and speech therapy. He has slurred and slow speech along with limited mobility in his right hand.

Does anyone know if this is expected and temporary and can be treated with therapy? He lives out of state and we are worried about him, I will be going there tomorrow to be with him but wanted to see if anyone has any additional insight or advice?

Thanks

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Thanks @stellgma! I am not sure of the medical terms but he had the procedure that involved the medical glue to stop blood flow to the AVM.

I had that too-an embolization. My procedure closed part of the fistula, but they couldn’t safely get it all. I have an appt at Mayo in May to find out if the dr can do open brain surgery to remove a 2nd fistula. Best wishes to your brother!

Is AVM the same as Osler-Weber-Rendu? (Also known as HHT)

@susan1955

Is AVM the same as Osler-Weber-Rendu? (Also known as HHT)

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I haven’t heard that name used for my AVM-dura brain fistulas by the neurosurgeons-not sure.

@susan1955

Is AVM the same as Osler-Weber-Rendu? (Also known as HHT)

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Hi Susan, Untangling all the conditions and symptom, and their associated acronyms can be confusing.

Hereditary hemorrhagic telangiectasia (HHT), also known as Osler-Weber-Rendu disease, is a genetic disorder that affects blood vessels. It can cause bleeding in the digestive tract, anemia, increased risk of stroke and other symptoms.

With HHT some of the networks of blood vessels that join arteries to veins (capillaries) aren't correctly formed. In small blood vessels, these abnormalities are called telangiectases. When they occur in larger vessels, they're called arteriovenous malformations (AVMs). People who have HHT may have both kinds of malformations.

Here's more information about HHT from Mayo Clinic https://www.mayoclinic.org/diseases-conditions/hht/symptoms-causes/syc-20351135

AVMs can occur for a variety of reasons. Having HHT is one possible cause.
AVM is explained in this article https://www.mayoclinic.org/diseases-conditions/brain-avm/symptoms-causes/syc-20350260

I hope this helps.

Hello! I recently had open brain surgery (craniotomy) at Mayo to treat a 2nd fistula that couldn’t be safely reached by embolization. At day 23 I am pain free! No headaches, pressure or nausea!! It was a rough 22 days after surgery-lots of Tylenol and icing my head. It was discovered during surgery that I have a 3rd lesion that will probably need gamma knife radiation. It’s been a real rollercoaster ride the last 11 months, but I have total faith in my Mayo Clinic neurosurgeon in Rochester.

Hi – some of you have mentioned arteriovenous malformations (AVMs), and I'm wondering how things are going. I'm sure others will benefit from hearing about your experiences.

@stellgma – have you continued to be pain free following your craniotomy? Do you know if you will be getting gamma knife radiation on the third lesion found in the surgery?

@tanvir22 – how is your brother doing?

@auldcelt – how are your headaches?

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@lisalucier

Hi – some of you have mentioned arteriovenous malformations (AVMs), and I'm wondering how things are going. I'm sure others will benefit from hearing about your experiences.

@stellgma – have you continued to be pain free following your craniotomy? Do you know if you will be getting gamma knife radiation on the third lesion found in the surgery?

@tanvir22 – how is your brother doing?

@auldcelt – how are your headaches?

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Hi! I’m doing well. No headaches, but my dr put me on 325 mg a day aspirin which seems to be irritating my stomach. A lot of nausea. 😖 He reduced it to 81mg at my brain angiogram on sept7, but still not better yet. My primary care Dr put me on Zantac 2x a day yesterday…hoping this helps! My 3rd lesion apparently is in a bone and is not using a brain vein to drain at this time so the surgeon will do an MRA in a year to check it.

@stellgma

Hi! I’m doing well. No headaches, but my dr put me on 325 mg a day aspirin which seems to be irritating my stomach. A lot of nausea. 😖 He reduced it to 81mg at my brain angiogram on sept7, but still not better yet. My primary care Dr put me on Zantac 2x a day yesterday…hoping this helps! My 3rd lesion apparently is in a bone and is not using a brain vein to drain at this time so the surgeon will do an MRA in a year to check it.

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Hi, @stellgma – glad to hear from you and that you are doing well and not experiencing headaches. That is unfortunate the daily aspirin the doctor put you on is irritating your stomach.

You mentioned your primary care doctor put you on ranitidine (Zantac) now. Is that helping the nausea and stomach issues at all?

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