New

Hello,

I'm new here. I just found out last week, that I have an AVM on my brainstem. I have had bad headaches pretty much all of my life, and problems with my right eye not dilating. So, to make a long story short I had a mri and thats when they found an AVM. The Dr. said that he would not do any surgery, because that could cause to much damage. This is all new to me, and I have to admit I'm a little scared. So, could some of you that have experience with this give me some information? Tommorrow I go to get a MRA. Thanks for any information. I have to admit I am I not to smart on this subject. I didn't even know what a MRA was until yesterday.

Jolene
We were all new and scared at one time so just hang in there. You have found the right site. We’ve all been where you are. This site is very informative, supportive and therapeutic. I understand you were diagnosed and you have an MRA scheduled for tomorrow. The test you are having tomorrow is very similar to getting an MRI. It sounds like your doctor is still gathering information and maybe getting ahead of himself. As far as him giving you an opinion that you cannot be surgically treated may be premature. Even if you are not surgically treatable, there are other treatments available. I have never had surgery, but have had several embolizations, as well as radiosurgery and am doing well now. I know that you are scared, but it’s very early in your diagnoses and there are alot unknowns. Here’s a link that will describe the various treatment methods:
http://www.youtube.com/watch?v=_w0GYoPy0A0
There are alot of wonderful people that can help you with any information and offer support during this time. Gordon

Thank God they have found it. They have a lot of new technology today and your in good hands.

Gordon,
Can I ask where your AVM is? The Dr. acted like being on the brain stem made it more difficult to treat. Do you think that is true? I am feeling like I need a second opinion.
Gordon D said:

Jolene
We were all new and scared at one time so just hang in there. You have found the right site. We’ve all been where you are. This site is very informative, supportive and therapeutic. I understand you were diagnosed and you have an MRA scheduled for tomorrow. The test you are having tomorrow is very similar to getting an MRI. It sounds like your doctor is still gathering information and maybe getting ahead of himself. As far as him giving you an opinion that you cannot be surgically treated may be premature. Even if you are not surgically treatable, there are other treatments available. I have never had surgery, but have had several embolizations, as well as radiosurgery and am doing well now. I know that you are scared, but it’s very early in your diagnoses and there are alot unknowns. Here’s a link that will describe the various treatment methods:
http://www.youtube.com/watch?v=_w0GYoPy0A0
There are alot of wonderful people that can help you with any information and offer support during this time. Gordon

Jolene
I had two AVMs one on top of my brain and one in back,I say had because the one on top is obliterated so the doctor told me.I’m not sure about the brain stem being harder to treat every one of us have a different AVM and what seams hard to one doctor is not that hard to another, I have found.As far as a second opinion thats a must, I had three and some of our members have had 4 or 5.Here is a list of our members that their AVM involved the brain stem,I’m sure there are more but some may not of put it on there profile
http://www.avmsurvivors.org/profiles/members/search?name=&country=&location=&q20_start_month=0&q20_start_day=0&q20_start_year=&q20_end_month=0&q20_end_day=0&q20_end_year=&q31=&q36_start_month=0&q36_start_day=0&q36_start_year=&q36_end_month=0&q36_end_day=0&q36_end_year=&q33=brain+stem&q34=&q35=

Yes hang in there. There is a lot of new technology and knowledge of this condition today. Thank you Jolene for the You Tube link.

Gordon D said:

Jolene
I had two AVMs one on top of my brain and one in back,I say had because the one on top is obliterated so the doctor told me.I’m not sure about the brain stem being harder to treat every one of us have a different AVM and what seams hard to one doctor is not that hard to another, I have found.As far as a second opinion thats a must, I had three and some of our members have had 4 or 5.Here is a list of our members that their AVM involved the brain stem,I’m sure there are more but some may not of put it on there profile
http://www.avmsurvivors.org/profiles/members/search?name=&count…

Gordon,
Thanks for all the information, and Loretta thank you for your kind words. My thoughts and prayers are with everyone one on here. Good luck to everone.
Jolene

i just found out my daughter has a brain stem avm. she did not walk until 2yrs (she turned 2 last month) she also had a “lazy eye” which is another reason i had her at the dr. we are going for our second opinion in arizona and another angio in 2 weeks. you are the first person i have come across to have in same location. i worry about rupture in this area. i hope your treatment is going great. we will find out soon what can be done for us.

Rachel,
I hope everything goes okay for your daughter. She will be in my prayers, good luck.

My AVM is also on Brainstem and they found it in an MRI after moderate headaches. Surgery was not an option, so the doctor did two embolizations followed by Cyberknife radiation treatment. Also had stroke after second embolization. Recovered around 95% in 8 months after stroke.

Since reading the comments on this board I realize my husband is very fortunate to have recovered from his AVM bleed. The Medical Profession first time said they couldn’t find anything and second time said they didn’t know what it was. Third time it bled and he lost the left side of his body. It was on the right where it affects the motor skillson the left. When he had this there was no place where I could get any information on this . Thank you all for your comments. Its been a long hard road back for him and me as his caregiver.

Manny Patel said:

My AVM is also on Brainstem and they found it in an MRI after moderate headaches. Surgery was not an option, so the doctor did two embolizations followed by Cyberknife radiation treatment. Also had stroke after second embolization. Recovered around 95% in 8 months after stroke.

They put a clip in my husband so he wouldn’t have a stroke. It stops blood clots from reaching your heart or brain. He had blood clots in the Rehab from being immobile in the bed. They were not turning him like they were suppose to. So thank God they put the clip in . If he had had a stroke on top of this it would have been terrible. As it was what happened turned his life and ours , the family’s upside down.

Loretta Selkirk said:

Since reading the comments on this board I realize my husband is very fortunate to have recovered from his AVM bleed. The Medical Profession first time said they couldn’t find anything and second time said they didn’t know what it was. Third time it bled and he lost the left side of his body. It was on the right where it affects the motor skillson the left. When he had this there was no place where I could get any information on this . Thank you all for your comments. Its been a long hard road back for him and me as his caregiver.

Manny Patel said:
My AVM is also on Brainstem and they found it in an MRI after moderate headaches. Surgery was not an option, so the doctor did two embolizations followed by Cyberknife radiation treatment. Also had stroke after second embolization. Recovered around 95% in 8 months after stroke.

Being scared is normal if u weren’t then I’d be worried. I first found my avm a year and a half ago. Same thing they said it was a migraine. But i’ve suffered from migraines since I was 10. It was different and a MRI showed it. AVM! Now I’m still wondering what to do. Had the ct scan. The angiogram. Went to UCLA to see dr Martin The man! He wanted surgery but then talked to his intervetional radiologist n decided it too risky to do surgery. Mine is 4.1x2.9 centimeters in right cerebellum. He brain stem area I know is probably more difficult. As it is in the center of it all. Be aware of the things doctors say n research is Important. There are many options.
I saw my doctor in may. And found out in June no surgery. I thought that was the route for a year Now back to square 1. But you also have to live life. Don’t forget to do that. If u r constantly overwhelmed sit back n breathe. That is what I try to do. Good luck n you have found a nice sight with lots of insigh
Renee

Being scared is normal if u weren’t then I’d be worried. I first found my avm a year and a half ago. Same thing they said it was a migraine. But i’ve suffered from migraines since I was 10. It was different and a MRI showed it. AVM! Now I’m still wondering what to do. Had the ct scan. The angiogram. Went to UCLA to see dr Martin The man! He wanted surgery but then talked to his intervetional radiologist n decided it too risky to do surgery. Mine is 4.1x2.9 centimeters in right cerebellum. He brain stem area I know is probably more difficult. As it is in the center of it all. Be aware of the things doctors say n research is Important. There are many options.
I saw my doctor in may. And found out in June no surgery. I thought that was the route for a year Now back to square 1. But you also have to live life. Don’t forget to do that. If u r constantly overwhelmed sit back n breathe. That is what I try to do. Good luck n you have found a nice sight with lots of insigh
Renee

Jolene
I also had an avm on my braistem. I did not even know what an avm was, never heard of it. I had surgery in August of 2009. I am still recovering. I still have numbess on the right side of my face and a pins and needle sensations in my legs and feet. I saw the surgeon last month for my one year check up. He told me that these feelings are probably going to be around for the future. I can live with that. I have come a long, long way since the surgery. I hope you MRA went well and I am praying for you.