Gamma Knife Today!

Today was the long-awaited day. We entered the hospital shortly after 6 AM. I was fitted for a frame, and then was given injections in the four locations where the screws would be inserted into my skull. I must admit that I have a high tolerance for pain, but there injections were like none that I can remember. The needle was long, and as the nurse pushed the anesthetic into my skin I felt pressure and a burning sensation. During the insertions of the needles, I passed out. It began with just the pain, but I rapidly became very nauseous until I saw everything swim in front of me, and the nurse laid me down. After a few minutes I felt better, so I was sat up again and the next step began: inserting the screws. I did not feel the intensity of the pierce of each screw since I was numb, but as the screws were twisted more and moer into my skull, the intense pressure put me in excrutiating pain, and again I began to feel dizzy. This time the nurse knew to look out for this reaction, and quickly laid me down again. This pain did not let up at all for about 5 minutes, and the general pressure sensation didnt go away for about an hour. The next step was my being loaded onto a stretcher, and I was wheeled through the hospital to the MRI Suite. A few more heavy gadgets were attached to my frame, but this did not bother me at all, as they did not touch my head, or increase the pressure. The MRI took about 45 minutes, and was just like any other MRI, except for the fact that I was attached to my frame which was attached to a part of the stretcher to prevent me from moving.

After this I was again given a tour of the hospital from my view on the stretcher, until I reached the angiogram suite. I was expecting to be fully out of it for this part of the day, and did not expect to be so conscious. This made the experience interesting but also more painful. I felt a slight pain when the catheter was inserted in my groin, but then I did not feel anything as it snaked its way up my body. When it reached my neck, I was told by the doctor not to "breath speak move or swallow" and I felt a drag as the catheter traveled up my neck into my head. it explored a bit, then I was told again the same directions, and I felt a drag as it went back down. A few seconds later the cycle repeated itself- up my neck, explore, and back down. Finally, it was removed, and I was back on the stretcher. Towards the end of this procedure, I had again become nauseous- probably from the medications and dye from the MRI.

I was brought back to my cubicle where the last steps were prepared for me to have the Gamma Knife done. The mapping of the computers were done very quickly. But I was still feeling very nauseous. I was given medication to help, but I didn't see it making a significan difference. I was told that we were to start the Gamma Knife, and if anything bothered me (or I felt that I had to throw up,) All I had to do was talk, and the microphone will help the nurses hear me, they could stop the treatment, and help me until I was ready to finish the treatment. About half-way through the treatment, I felt extremely nauseous and therefore was unable to call out for help. I threw up- mostly water since I had not eaten since the day before- and was finally able to talk into the microphone. The treatment was stopped, the nurses came in to help me feel more comfortable by changing the wet bedding, and the rest of the treatment proceded without any furthur problems.

I was wheeled out of the gamma room, and was told that I could finally have the frame and pins removed! You can imagine how excited I was, since although I was not experiencing any more pain, it was extremely uncomfortable and heavy. The pins were unscrewed, and bandages were applied that made me appear like a Civil War soldier. Less than a minute later, the pain came back with a vengeance. The four prior pin sites gave me such immense pain that I felt like my whole head would split in half, and, you guessed it- the nausea made its entrance yet again! But the pain this time was like none other before- I persisted and didn't ease by even 1% for close to an hour. Even now, 8 hours later, I still feel the pressure and slight pain emanating from the four locations.

I laid flat for the next 3 hours until 4:00 to finish the primary healing of the angiogram site, and then I was set to go.

Would I recommend this to anyone else? If your doctor recommends such a procedure there is no reason why you should not go through with it, but I might suggest that you ask if full anesthesia is an option to avoid all of this discomfort and pain. -And this is coming from someone who typically has a very high threshhold for pain!

Any tips or suggestions from anyone who has gone through a typical experience?

Hi Birdie. There is a sub-group on here you may wish to join...

http://www.avmsurvivors.org/group/radiosurgerypatientsgammaknifeother

I’m glad you made it though it! I just had all thus dine about 2 weeks ago but had a different experience, no screws, they used a plastic mesh mask made for my face and the angiogram was pretty fast, I don’t remember much of it no pain when they inserted the catheter, well they did poke me in both sides! But I did vomit mid procedure and the only pain I felt was when the dye went into my brain. The actual surgery was fast maybe cause I was Xanaxed… Overall I can’t complain. God got me through it, now it’s the waiting game!

I’m going in June and prefer this experience.

ESTHER C said:

I’m glad you made it though it! I just had all thus dine about 2 weeks ago but had a different experience, no screws, they used a plastic mesh mask made for my face and the angiogram was pretty fast, I don’t remember much of it no pain when they inserted the catheter, well they did poke me in both sides! But I did vomit mid procedure and the only pain I felt was when the dye went into my brain. The actual surgery was fast maybe cause I was Xanaxed… Overall I can’t complain. God got me through it, now it’s the waiting game!

I hope today is a better day for you!!!

Birdie, Congratulations for getting that out of the way. I don’t understand why some doctors don’t use full anesthesia. They did with me and I had very little pain. My only advice is to demand it!

Wow this is great! thanks for the heads up about the group!

Barbara H. said:

Hi Birdie. There is a sub-group on here you may wish to join...

http://www.avmsurvivors.org/group/radiosurgerypatientsgammaknifeother

That's exactly what I would recommend for anyone going through this procedure- it wasn't intolerable, but if you can avoid the pain and discomfort, why not?!



Brett D said:

Birdie, Congratulations for getting that out of the way. I don't understand why some doctors don't use full anesthesia. They did with me and I had very little pain. My only advice is to demand it!

Today is a new day and I feel 10 times better than I did yesterday/last night. I had a solid 8 hours of sleep, woke up with a slight headache which intensified only when I bent over to pick up somthing from the floor, or did some other intense activity. I'm still pretty sluggish, but I would attribute that to the tiring day I experienced yesterday. I go back to work tomorrow so I will try to get to sleep early tonight. Thank you all for your continuing support!

I would definitely recommend full anesthesia if your doctor allows it. Either way, you can be comforted by the fact that it is only one day, and should hopefully improve the rest of your life. Good luck with your big day!

btw, who is your doctor for this procedure? I used Dr Isaacson and Dr Ghattan...

Stephanie said:

I'm going in June and prefer this experience.

ESTHER C said:
I'm glad you made it though it! I just had all thus dine about 2 weeks ago but had a different experience, no screws, they used a plastic mesh mask made for my face and the angiogram was pretty fast, I don't remember much of it no pain when they inserted the catheter, well they did poke me in both sides! But I did vomit mid procedure and the only pain I felt was when the dye went into my brain. The actual surgery was fast maybe cause I was Xanaxed... Overall I can't complain. God got me through it, now it's the waiting game!

I’m going to Toronto Western Hospital. Dr Cusimano is the neurosurgeon taking the lead. AVM found by accident. Calcification in it indicates a bleed at some point; likely when I was very young.

Birdie said:

I would definitely recommend full anesthesia if your doctor allows it. Either way, you can be comforted by the fact that it is only one day, and should hopefully improve the rest of your life. Good luck with your big day!

btw, who is your doctor for this procedure? I used Dr Isaacson and Dr Ghattan…

Stephanie said:

I’m going in June and prefer this experience.

ESTHER C said:
I’m glad you made it though it! I just had all thus dine about 2 weeks ago but had a different experience, no screws, they used a plastic mesh mask made for my face and the angiogram was pretty fast, I don’t remember much of it no pain when they inserted the catheter, well they did poke me in both sides! But I did vomit mid procedure and the only pain I felt was when the dye went into my brain. The actual surgery was fast maybe cause I was Xanaxed… Overall I can’t complain. God got me through it, now it’s the waiting game!

I wish you all the best with your procedure, and look forward to hearing good news after…

Stephanie said:

I'm going to Toronto Western Hospital. Dr Cusimano is the neurosurgeon taking the lead. AVM found by accident. Calcification in it indicates a bleed at some point; likely when I was very young.

Birdie said:

I would definitely recommend full anesthesia if your doctor allows it. Either way, you can be comforted by the fact that it is only one day, and should hopefully improve the rest of your life. Good luck with your big day!

btw, who is your doctor for this procedure? I used Dr Isaacson and Dr Ghattan...

Stephanie said:

I'm going in June and prefer this experience.

ESTHER C said:
I'm glad you made it though it! I just had all thus dine about 2 weeks ago but had a different experience, no screws, they used a plastic mesh mask made for my face and the angiogram was pretty fast, I don't remember much of it no pain when they inserted the catheter, well they did poke me in both sides! But I did vomit mid procedure and the only pain I felt was when the dye went into my brain. The actual surgery was fast maybe cause I was Xanaxed... Overall I can't complain. God got me through it, now it's the waiting game!

Hi Birdie,

So sorry you had such a rough time with the pain and nausea, but I'm happy you're through it now and feeling so much better.

Keep feeling better, and keep hanging in there!

Best to you,

Tori

Tori,

Thank you for your support! It's people like you, who constantly think of others, that make a difference in the world.

-Birdie

So.....did you have ay hair loss or anything like that after the GKR procedure? or any other symptoms?

nope- no hair loss, and only symptoms are mild headaches- always manageable with either advil or tylenol. Every situation is different, but I have heard of many positive experiences from others as well. My more recent discussion threads describe my symptoms in detail if you have the time to read them...

holy crap! I didn't know Gamma was such an arduous experience. If anyone has the choice, I recommend the crainy. Mine was certainly not this painful. I was out cold the whole time with plenty of morphine in the following days.

PS, nice job staying tough. Keep on trucking. All the best

Thanks for the support! Sometimes, you're only option is to remain positive and keep moving forward. Over time we all realize that's the best option- noone wants the alternative.
as far as the gamma tx: craniotomy is not an option for those with very deep avms, or in a highly sensitive area. (mine was much too deep). I would highly recommend a/o considering gamma to ask if full anesthesia for the day is an option. The drs are professionals. Nothing they do is without reason.