Treatments

I am new to this group. I had my first bleed August 2009, and I have just completed 3 embolization treatments. This has all happened so quickly. I met with my doctors this past Thursday, and they gave me the options of radiation or brain surgery as treatment methods.

I did some reading this past weekend on both, but from personal experience, can anyone provide me with their experiences, decision making process, etc… Anything you may want to share would be appreciated that might assist me in making this decision.

My AVM is in the left hemisphere of my brain right in front of where my motor and speech functions are controlled so surgery scares me. On the other hand, the uncertainty of radiation scares me too.

Anything you might want to share would be appreciated. Thanks.

Hello Jill, welcome to the group. You’ve come to a perfect place to get advice and experiences from others who have been where you are. As for my experience, I had a major bleed which left me in a coma with no options other than embolization and surgery. My doctors believed that another bleed was imminent (not just likely, but as in soon!) so I wasn’t coherent enough to know any of this was happening to me, which I am grateful for. You’ve got a huge decision ahead of you, but what I would suggest is getting at least a second opinion, if not a 3rd or 4th. Also, make sure your surgeon is knowlegable about this condition and ask how many cranis he/she has performed. You just want to feel very comfortable with your doctors, no hesitations about their abilities. I wish you the best of luck as your pursue the best options for you.

Thank you Trish. I appreciate the feedback. People tell me all the time to trust in God, not get religious, but I get angry with that response, because I think how is that going to help me make a decision. It sounds like in your case that holds some truth though.

How horrible for you that your bleed put you in a coma, and I am glad you are doing well. You are in a way fortunate to not remember the embolizations. The 3 I have had were not great experiences. Each embolization seemed to be worse than the last, and I am in a state of mind where I just want this behind me which is why I am leaning toward surgery, but radiation seems to be a lesser of two evil option. I just felt so overwhelmed after my doctors’ appointments.

Thanks for sharing, and good health to you.

Trish said:

Hello Jill, welcome to the group. You’ve come to a perfect place to get advice and experiences from others who have been where you are. As for my experience, I had a major bleed which left me in a coma with no options other than embolization and surgery. My doctors believed that another bleed was imminent (not just likely, but as in soon!) so I wasn’t coherent enough to know any of this was happening to me, which I am grateful for. You’ve got a huge decision ahead of you, but what I would suggest is getting at least a second opinion, if not a 3rd or 4th. Also, make sure your surgeon is knowlegable about this condition and ask how many cranis he/she has performed. You just want to feel very comfortable with your doctors, no hesitations about their abilities. I wish you the best of luck as your pursue the best options for you.

I don’t know what to tell you to do, but I choice GK over crainiotomy, I had a stroke from embolization, so I figured this avm did not want to be bothered with a craniotomy LOL.

People have done well with both procedures.

Peace,
Ameenah

Thanks for sharing Ameenah. Is your AVM gone now? How long did it take for the GK to work? Did you experience side effects from the GK?

Ameenah said:

I don’t know what to tell you to do, but I choice GK over crainiotomy, I had a stroke from embolization, so I figured this avm did not want to be bothered with a craniotomy LOL.

People have done well with both procedures.

Peace,
Ameenah

I have not had my folllow up MRI yet, I went to ER 3 times because I felt as though my head was tight/pressure, the docs did not see any swelling on the CT scan or MRI and they said that the avm was doing what it was supposed to.
Whatever that is LOL I assume it is shrinking.
I got GK 7-22-09, they said that it could take up to 3 years to go away. I hope it’s gone now :slight_smile: I get another MRI in January, I will know more then.
Every person and every avm is different, I was very sleepy after GK for about two weeks, I mean exhausted, I don’t feel tired now. I’ve had so many things happen to me, some of the things I feel could be from other stuff. I had a bleed which led to a stroke 12-12-08 I had an embolization 4-16-09, that gave me another stroke, after the two strokes, I had GK. Some of my problems could be from stroke or the avm, maybe not all issues from GK. Tiredness, definitely from GK.

My avm was located in the back of my head. The dose was 21gy for 37 minutes. I read that if the dose is to high, it can cause problems, if too low it usually doesn’t work. Online they said 19gy, not more then 25gy.
At Jefferson Hospital in Philadelphia the doc said they have had better results with 21gy so they couldn’t give me 19gy. I hope this helps.

Peace,
Ameenah

Hi Jill, I had a large bleed in Jan 2009 (cause unknown at the time), but my AVM wasn’t noticed until June 2009! I had the option of radiation, or craniotomy to completely remove my AVM. Both treatment options have their pros and cons, and I was obviously worried about the problems with surgery, but went with the craniotomy as it would, theorteically be an ‘instant fix’! The op was performed in August 2009 and fortunately, all went well, apart from the fact that I have started to suffer from some intermittent partial focal seizures! But hey, that’s not the end of the world. In all honesty, it was pretty much expected! I had a cerebral angiogram immediately after the surgery which confirmed the removal of the AVM. So, I’m happy.

Saying all this, I guess each of our options is dependent on the size and location of the AVM. I had a small, fairly superficial AVM in my right parietal lobe, so according to the neuro team, surgery seemed to be the best option. Hope this helps.
Ali

I’m in a similar boat. I would love to hear how others made this decision. It just seems impossible.

Ali,

Thank you for your encouraging and inspiring story! I have been leaning toward the craniotomy myself, and I am scared. I share your philosophy on the “immediate fix”. The surgery seems to scare me less than the idea of dealing with the unknown for two or three years from radiation and all the complications associated.

I appreciate your words, and I wish you continued treatment success and good health!

Ali Nabijee said:

Hi Jill, I had a large bleed in Jan 2009 (cause unknown at the time), but my AVM wasn’t noticed until June 2009! I had the option of radiation, or craniotomy to completely remove my AVM. Both treatment options have their pros and cons, and I was obviously worried about the problems with surgery, but went with the craniotomy as it would, theorteically be an ‘instant fix’! The op was performed in August 2009 and fortunately, all went well, apart from the fact that I have started to suffer from some intermittent partial focal seizures! But hey, that’s not the end of the world. In all honesty, it was pretty much expected! I had a cerebral angiogram immediately after the surgery which confirmed the removal of the AVM. So, I’m happy.

Saying all this, I guess each of our options is dependent on the size and location of the AVM. I had a small, fairly superficial AVM in my right parietal lobe, so according to the neuro team, surgery seemed to be the best option. Hope this helps.
Ali

How have you done with the Gamma Knife? Do you know whether or not your AVM is shrinking?

Ameenah said:

I don’t know what to tell you to do, but I choice GK over crainiotomy, I had a stroke from embolization, so I figured this avm did not want to be bothered with a craniotomy LOL.


People have done well with both procedures.



Peace,

Ameenah

I get another MRI in January, I will see my doctor January 15th, I will know more then.

January will be the 6 month mark since GK, the docs said it could take up to three years to
obliterate. I hope it is gone now :slight_smile: My understanding is the younger you are the faster it obliterates.
I’m 50.

I was real tired for the first two weeks after GK, my head feels tight/pressure.
I went to ER three times because I felt pressure, but the docs did not see any swelling on CT Scans or MRI. I took a tapering dose of steroid all three times, for a week each time. The docs didn’t see anything, but I felt tighness, the tightness could be from the stroke before GK, I don’t know.

The docs feel as though I’m doing well.

Peace,
Ameenah