AVM - 6.5 CM x 3.5 CM

Hello,


I’m writing on behalf of my sister who just had her 3rd bleed. She is 33 years old and has a large AVM (6.5 x 3.5 cm) in her front left temporal lobe. I wanted to connect with anyone who has gone (or not gone) the treatment route. We are currently weighing the option of the gamma-knife and we were told that there is a 50/50 shot at obliterating it (with many side-effects because the feeder veins are important to other healthy brain areas. The surgeon didn’t seem confident…

Would love to hear some feedback from people with similar AVMs.

All the best,

Hi Shannon! Welcome. Hope your sister is doing well.

There are so many on the board who have been through gamma. And I think the title of your discussion may not be pulling them in so that they can help! (I’m a no-brainer so I can’t speak to this treatment directly!)
Couple suggestions- do a search in the forum, blogs, and member tab for “gamma.” You will find a ton of info just by doing that. It exists and I’m sure you will find answers to some of the questions you need.
Second- send direct messages or wall posts to some of the members you find who have been through this. Maybe even those members who have been at the same hospital as your sister Ask them for some specific info based on their profiles. I think you will find they are happy to respond and help!
We have members who have had complete obliteration with relatively little issues and no long term side effects (for example Ben our fearless leader) and others who have had more issues from radiation damage or just haven’t had the thing shrivel up and die.
Good luck!

Thanks Shalon! This group is really amazing. Ben send me a few threads to go through which I will look at today. Appreciate the support!!!
Best,
Shannon

Dr. K @ UMPC led me to believe that no AVM was unoperatable: http://www.upmc.com/Services/NeurologicSurgery/Pages/our-experts.aspx

I don’t know about that yet as I am on my 2nd month after my Gamma treatment and beside getting use to my medication I have had no measurable issues. Since she has had bleeding they may want to close that up by embolization and then maybe gamma, at least that is how the Dr. explained it to me. I was very Blessed to not have any bleeding they could detect.
Prayers are going your way for your decision and outcome of treatment.

Dear Shannon,
I ran across this posting and I felt compelled to respond. I too had a huge AVM but it was on my left frontal lobe…almost to the temporal lobe. My AVM was 6-7 cm X 4 cm depending on who was measuring it. But if you look up my profile on this site you can see that it was big. It was in October 2008 that I had a seizure that revealed this monster in my brain that had been there all my life…at that time 44 years. In Feb. '09 I went to Rochester, Mayo Clinic, and after having two embolizations done on two consecutive days I had a 6 hour long craniotomy…and major complications after…Blood infection, Blood clots, pulmonary embolisms (23 in all) plus a 6 cm long clot in my heart. I very nearly died. I coded but my wife happened to be in the room when this happened…which is the earthly reason why I am still here today. Following surgery I was completely paralyzed on my right side and unable to speak a word. Not a good thing for a pastor. Call me what you want, a Mayo snob I am. Though we live in Iowa, 4 hours away from Rochester, I had never been to the Mayo Clinic previously. No one practices medicine like the Mayo Clinic. I owe my life to them. If your sister has had three bleeds already that is of grave concern. I don’t know where your sister lives but I highly recommend Mayo Clinic, and doctor Fred Meyer, the current chair of Neurosurgery there. He is the surgeon who operated on me and Mayo is the top rated neurosurgery place in the country. I know there are other great places as well, but Mayo has a special place in my heart and I highly recommend them!

Oh yes, I forgot to mention that they had to perform emergency open heart surgery on me just two weeks after brain surgery because of the monster clot in my heart…At first they thought that the filter placed in to prevent this from happening had gone into my heart. Nope. It was just a monster clot and I was told that if I had not been at Mayo the odds of me surviving this would have been greatly reduced…as in I almost certainly would have died. At Mayo there are no egos. Every doctor does what he/she does and freely consult together serving the patient’s best interests.

We’re heading back up to Mayo tomorrow for the first time in a year for some follow-up visits. I have an EEG scheduled for Wednesday morning, a consult with the Vascular doctor, and a consult with the brain surgeon to read the EEG and see about altering my seizure meds (currently 1600 mg of Keppra daily) along with blood thinners and a compression sock on my lower right leg.

That’s why I’m here on this site tonight and saw this posting and felt compelled to respond! Going tomorrow to the place that changed my life for the good just a year and a half ago…46 days at Mayo and St. Marys Hospital with rehab. Today my life is good, though I do have what I can only describe as Post Traumatic Stress Disorder as related to the trauma that both me and my family went through not so long ago.

Blessings upon you and may you encourage your sister to be more agressive in getting second…third opinions!

By the way my name is Mike Evans and if you do a google search for Mike Evans Blog or pastor mike evans blog it will be the first thing that pops up…that is if you want to hear the whole saga. And that’s really what each one of these stories is…an individual saga, no two avm experiences exactly alike.

Thank you, Michael. It does seem like every AVM is different and its an individual saga but it is helpful to hear some of your story and have the support! Yes, we need to get second and third opinions. And good luck with your appointment today!!

Michael E. Evans said:

Dear Shannon,
I ran across this posting and I felt compelled to respond. I too had a huge AVM but it was on my left frontal lobe…almost to the temporal lobe. My AVM was 6-7 cm X 4 cm depending on who was measuring it. But if you look up my profile on this site you can see that it was big. It was in October 2008 that I had a seizure that revealed this monster in my brain that had been there all my life…at that time 44 years. In Feb. '09 I went to Rochester, Mayo Clinic, and after having two embolizations done on two consecutive days I had a 6 hour long craniotomy…and major complications after…Blood infection, Blood clots, pulmonary embolisms (23 in all) plus a 6 cm long clot in my heart. I very nearly died. I coded but my wife happened to be in the room when this happened…which is the earthly reason why I am still here today. Following surgery I was completely paralyzed on my right side and unable to speak a word. Not a good thing for a pastor. Call me what you want, a Mayo snob I am. Though we live in Iowa, 4 hours away from Rochester, I had never been to the Mayo Clinic previously. No one practices medicine like the Mayo Clinic. I owe my life to them. If your sister has had three bleeds already that is of grave concern. I don’t know where your sister lives but I highly recommend Mayo Clinic, and doctor Fred Meyer, the current chair of Neurosurgery there. He is the surgeon who operated on me and Mayo is the top rated neurosurgery place in the country. I know there are other great places as well, but Mayo has a special place in my heart and I highly recommend them!



Oh yes, I forgot to mention that they had to perform emergency open heart surgery on me just two weeks after brain surgery because of the monster clot in my heart…At first they thought that the filter placed in to prevent this from happening had gone into my heart. Nope. It was just a monster clot and I was told that if I had not been at Mayo the odds of me surviving this would have been greatly reduced…as in I almost certainly would have died. At Mayo there are no egos. Every doctor does what he/she does and freely consult together serving the patient’s best interests.



We’re heading back up to Mayo tomorrow for the first time in a year for some follow-up visits. I have an EEG scheduled for Wednesday morning, a consult with the Vascular doctor, and a consult with the brain surgeon to read the EEG and see about altering my seizure meds (currently 1600 mg of Keppra daily) along with blood thinners and a compression sock on my lower right leg.



That’s why I’m here on this site tonight and saw this posting and felt compelled to respond! Going tomorrow to the place that changed my life for the good just a year and a half ago…46 days at Mayo and St. Marys Hospital with rehab. Today my life is good, though I do have what I can only describe as Post Traumatic Stress Disorder as related to the trauma that both me and my family went through not so long ago.



Blessings upon you and may you encourage your sister to be more agressive in getting second…third opinions!



By the way my name is Mike Evans and if you do a google search for Mike Evans Blog or pastor mike evans blog it will be the first thing that pops up…that is if you want to hear the whole saga. And that’s really what each one of these stories is…an individual saga, no two avm experiences exactly alike.

Hi John, Thank you for the info/reply. We are not too far from Pitts. so perhaps we’ll go for a second opinion there. I will look into Dr. K. Thanks also for the support!

John Low said:

Dr. K @ UMPC led me to believe that no AVM was unoperatable: http://www.upmc.com/Services/NeurologicSurgery/Pages/our-experts.aspx


I don’t know about that yet as I am on my 2nd month after my Gamma treatment and beside getting use to my medication I have had no measurable issues. Since she has had bleeding they may want to close that up by embolization and then maybe gamma, at least that is how the Dr. explained it to me. I was very Blessed to not have any bleeding they could detect.

Prayers are going your way for your decision and outcome of treatment.