My only option - GammaKnife

First, I’d like to preface this blog by saying that no two AVMs are alike, just similar by definition. I have been very fortunate in that I found out about my AVM only because my daughter was concerned about my gait and speech which led to my first ever MRI where my diagnosis was made. I’ve never had a seizure (knock wood), hemorrhage/bleed, headaches (one migraine in my entire life) or any of the other signs that most AVMers get.

My daughter, Lindsay (who’s an RN) was able to talk to Dr Duma before any of the days activities began about the functional MRI I was given from the week before. From that MRI, it was determined that my AVM was far enough away from my speech and motor skills area of my brain which was important to help in my GK mapping. Dr. Duma prescribed Keppra, prophyllactically, and had me start taking it as soon as my GK procedure was scheduled. I’m taking 500mg twice a day and will continue to take it for several months. Keppra is an anti-seizure medicine and Dr. Duma said that I could lose my drivers license for 6 months should a seizure occur.

I had my GammaKnife procedure August 10, 2009 at Hoag Presbyterian Hospital in Newport Beach, CA for nearly 10 hrs and what a long 10 hr day it was…my AVM friend Ameenah was ‘right on’ when she said it was a long 10 hours! I had to be at the GK suite at 6:30 a.m. - my neurosurgeon, Dr Duma, put the frame/halo on me (screwed into my skull) at about 7:30. My anesthesiologist was there to put me in a ‘twilight’ sleep so I didn’t feel a thing. Because I’m extremely claustrophobic, Dr Duma previously assured me that he would make every step very comfortable for me. I wouldn’t be intubated but whenever necessary I would be given sleepy stuff intravenously. After the frame was secured I was taken for another MRI which lasted 45 min. I was fortunate that the ‘sleepy stuff’given to me for the frame placement was still in my system, so no more was given to me at the time of the MRI. I was very relaxed. The first part was without the contrast dye, and then I was given a dye for better imaging. I was then taken back to my room where I waited for an ambulance to take me to the radiology department up the hill at Hoag for my Cerebral Angiogram. This was another new experience for me, as I had only heard about this procedure having never undergone it before. For those who don’t know what this is I’ll try to explain – a catheter is threaded through a blood vessel, in the upper thigh area and into the head. Once the catheter is in place, the doctor injects a dye through the catheter and into the targeted arteries. After the dye has reached the arteries, the x-ray images can be taken. My catheter went from my groin to the main artery in my neck from what I understand. Once again, I was fortunate enough to be put in a twilight sleep for the procedure which took approx 1 hr - when they brought me out of the anesthesia (normally patients are awake through this), I had to lay flat for 6 hrs so I wouldn’t bleed. The ambulance then brought me back to the GammaKnife Center. I was shocked when the doctors told me it was going to take about 1-1/2 hrs for the GammaKnife radiation surgery. My AVM is relatively small 1.5x2.0 cm, so I thought it was gonna be quick….boy was I surprised. But at least it helped to cut into the 6 hours of laying flat. I had a team of doctors preparing me for GK – a radiology oncologist, 2 radiation physicists, my neurosurgeon and anesthesiologist, along with specially trained GK nurses. Once again, as they were attaching my head frame to the GK helmet I was put in another ‘twilight’ sleep, this could be because I tried to get off the GK bed telling the doctors I wanted out immediately- I could feel the claustrophobia setting in. Since I was out for the 1-1/2 hour radiosurgery I have no knowledge of what went on. The frame was removed and when I was brought out of the anesthesia they took me back to my recovery room where I had to stay for an additional 2 hrs on my back. I was so very fortunate because Linda, the lead GK nurse was with me just about every minute of the 10 hour day. It was also a nice coincidence because she’s a friend of my daughters, as is her husband whom Lindsay has worked with for 14 years as a lifeguard in Huntington Beach.

The small of my back was aching after laying down for so long and one of the areas where a screw had been placed, hurt like the dickens, so I was given a vicodin to ease the pain. I’m really a big ‘wuss’ when it comes to pain, and I will gladly take whatever I’m given when it’s offered to me. I was also given an intravenous dose of decadron for swelling and that’s the only steroid I was given.

I finally was able to leave the GK Center at about 5 p.m. Even though they didn’t surgically remove anything, I feel like part of me is gone…whether that’s good, is yet to be seen. I realize it will take up to 2 years for obliteration and I’m ready for the long wait.

On Tuesday August 11, two of the GK nurses phoned me to see how I was doing and I really felt good. I have a follow up appointment on the 18th so my head can be checked where the screws were placed.

In the meantime, my aftercare instructions said to ice my eyes and keep my head elevated which I didn’t do, so after telling the nurses I was doing great I took a setback…My eyes on Wed and Thurs were almost swollen shut, with horrible swelling beneath them as well as on my forehead. I guess 8 hrs with the halo frame screwed in my skull did some ugly things I wasn’t expecting. The aftercare instructions say eye swelling should resolve in 72 hrs…its 8/15 and the swelling is finally coming down except beneath my eyes. On Thursday I did call the GK center and I was told to keep icing and not lay flat and in some patients it can take longer than the 72 hours — I’m one of those patients… My forehead looked like ‘Herman Munsters’ with my swollen eyes looking worse than Kermit the Frogs! I know that because I didn’t ice and elevate on Tuesday, I paid dearly for not following instructions.

Post script:
My sweet Alicia and dear Ameenah, thank you both so much for the strength and positive energy you’ve given me. My experience is so small compared to what you’ve been through… and a special thanks to all the AVM survivors, family and friends on this site.

So far this is my GammaKnife experience….I’ll share more as time goes on….it’s a continuing saga that’s for sure…remember, always believe.

my dearest robin,
i am so pleased to hear all went well…and that you were put into a twilight sleep and not intubated…my prayers were answered…keep positive that avm is on its way to obliteration stay in touch love and best wishes xxx

Hi Robin, you are so right “always believe” .
I don’t remember the instructions saying to elevate my head, but I did because I stayed down stairs on the love seat for weeks, I had to elevate, I didn’t have any room to lie down I’m short too. LOL I might of helped myself without knowing it because I didn’t have any swelling. I took a tapering dose of steroids twice because my head felt very tight, when they did a ct scan, mri, mra and looked behind mt eyes they said they didn’t see any swelling. I know my brain felt like it was pressing against my skull. I think the steroids helped, I’ll be off today 8-17-09, my second tapering dose since GK. I hope I don’t need them again.

Robin rest as much as you can, don’t let anything get on your nerves, stress is the worst for us.

My husband and I took my 17 year old to college Saturday 8-15-09. Her sassy mouth, I couldn’t take it anymore. She was very nice at the school, she has to stay that way. I don’t know what her problem is, I guess she is 17. My 22 year old is very helpful with her, she told me don’t buy her anything else, she took money and got what she wanted, she is not worried about curtains, you are. My 22 year old is right, my 17 year old has to grow up. My 22 year old is pregnant. I’m glad to see new life coming in my condition, especially. All I have to do is play with a baby.

I’m glad you are feeling as well as can be expected, keep being as positive as you are.

Peace and Blessings,

Hi Robin,
I don’t where my head is, because I meant to wish you all the best for the Gamma Knife, and August 10th came and went! So glad it all went relatively well. Sounds like you had a lot of TLC at the hospital compared to my experience (no drugs whatsoever, no talk of icing or elevating,no steroids, nada!) and I’m sure your eye swelling will go down soon. Please keep me update on how you’re feeling.
Best wishes,

Hey Robin, I very glad to hear you are doing well. Fortunately, I didn’t have swelling of my eyes, only a slight headache,assuming from Halo. I been told they will be contacted about twentythird of Sept., to tell me what up then, sort a little of suspense.LOL My right eye is red,looks like clearing up, but will have to wait and see. It’s great to you doing well. Take care,Phil

Very glad to hear your gk procedure if behind you. The next couple of years may be emotionally taxing, so make sure you reach out to us if things get overwhelming. I hope they pass by quickly and without any hiccups. Best wishes, Ben.

I consulted with Dr. Duma regarding Gamma Knife a few weeks ago and I’m suppose to go for a functional MRI on Oct. 2nd. It’s nice to hear about someone else that has been there. Mine is close to sppech & motor stirp but is a bit bigger that your. I think close to 2.5 to 3 cm - Keep me posted on how you are doing …

FYI - my AVM was found because of my clumsy gait as well as tingling & numbing sensation in arm.

Hi Robin,
I was wondering if they treated your aneurysm seperate prior to gamma knife. Did they discover the aneurysm at the same time they found your AVM?

Hi again Robin! I’m so sorry you are having to go through this medical trauma. I know how unsettling it is (to say the least!), but you seem to have the best attitude…always believe. Thank God for your daughter, huh? Sometimes the people we love know us better than we know ourselves, or maybe it’s the fact we don’t want to face what might be a mountain to climb. I’m just glad she got you to check it out. I am going to write my story about my son’s AVM, but not right now. It’s a long story, and it’s late. I’ll keep you in my prayers, along with all the other AVM sufferers.