Author Topic: Gamma Knife 12/22 - seeking reassurance & support  (Read 1117 times)

suz

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Gamma Knife 12/22 - seeking reassurance & support
« on: December 17, 2017, 09:35:52 am »
Hello all,
It has been years since I have posted anything because life has been good and I have not had any major concerns with my AN. For the past 3-4 years after my annual MRI my neurolotologist has said "you should think about gamma knife" but never gave a distinct recommendation. This past summer after careful remeasuring of the growth over the past three years he told me that the growth has been consistent & steady year to year and that now is an ideal time to get gamma knife done. He made a good point about the size of it now and the location and that it is in a good position to treat with GK. I usually have a difficult time making up my mind about taking these big steps but what he said made sense and so I slowly went through the steps to get scheduled. Over the course of three months I met with the neurosurgeon, the Neuro NP, and the Radiation Oncologist and set the date.. All went well and I had really no anxiety until last week when I saw on the calendar that the big day was less than 2 weeks away. YIKES. Minor panic attack ensued. I think I had been viewing the upcoming event with a nurse's objectivity and not really personalizing it. Suddenly I saw the head frame going on my head, being bolted to the table, and I have had butterflies in my tummy since then. I am using meditation and trying to stay active and keep my mind occupied. I realize that it is completely normal to feel anxious about this procedure and the potential side effects up to 6 months afterwards. I am having the procedure done in a top notch institution which I am not going to name because I also work for this health system and I want to be able to speak freely moving forward.
I know some of you are probably wondering about the size of the tumor now and how much growth it demonstrated but I am terrible with remembering numbers and frankly it helps me obsess less to not focus too much on that.
I am really asking for good old ANA Discussion Board empathy and support. Even though I am an RN, my colleagues really don't understand this condition or the challenges it presents. Of course, my friends and family understand better. GK feels like less of a big deal than the actual surgery I had but on the other hand it is still a big deal.
Any words of wisdom or encouragement are welcome!
Suz
Tumor 1.8cms x 1.5 cms x .5 cm;partially removed 7/14/10 by Drs. Friedman & Schwartz of House Ear Clinic in LA. Moderate SS hearing loss.
Re-growth approximate 3 mm per year; GK planned for 12/2017.
Philadelphia, PA area

rupert

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Re: Gamma Knife 12/22 - seeking reassurance & support
« Reply #1 on: December 17, 2017, 03:34:26 pm »
I see you had surgery some years back.  Going through that before is possibly part of adding to your anxiety.  As far a GK, it's really a non event for most people.  If you're going to a top notch facility you're in good hands.   Forget about the frame, it's over before you even know it.  You're not really bolted to the table, the frame just attaches to the machine.  I was able to sit up and move around between each phase when they switched out the columators   As far as side effects, most people don't have any myself included.  I was a little tired for a while but that was it.  Many people have GK each year with no side effects.  Just relax and take into account that you have a very high chance permanent success.  Good luck to you.

suz

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Re: Gamma Knife 12/22 - seeking reassurance & support
« Reply #2 on: December 17, 2017, 04:01:18 pm »
Thank you - I appreciate your reply. I like the way you described - as a "non- event".
Hoping that's how I describe it afterwards.
Suz
Tumor 1.8cms x 1.5 cms x .5 cm;partially removed 7/14/10 by Drs. Friedman & Schwartz of House Ear Clinic in LA. Moderate SS hearing loss.
Re-growth approximate 3 mm per year; GK planned for 12/2017.
Philadelphia, PA area

Freelander

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Re: Gamma Knife 12/22 - seeking reassurance & support
« Reply #3 on: December 18, 2017, 10:58:12 am »
Good luck Suz, sounds like you are well versed and prepared, and should I ever need treatment, I hope to be as well informed.  The December 2017 issue of ANA NOTES, has a good article about Resiliency and five key steps to help reduce the emotional toll of an AN diagnosis:
Understanding the brain, Mindfulnes, Coping Skills, Positive Thinking, and Healthy Lifesyle.   Practice leads to improvement. 
All the Best, keep us posted.

Patti

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Re: Gamma Knife 12/22 - seeking reassurance & support
« Reply #4 on: December 18, 2017, 04:18:51 pm »
I had a re-growth treated 2 years ago and it really was a non-event.  It did not shrink the tumor but it has stopped it from growing.
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

errnkk

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Re: Gamma Knife 12/22 - seeking reassurance & support
« Reply #5 on: December 18, 2017, 11:17:32 pm »
Do not go through radiation. Your AN is small enough to remove it without complications. I am an RN as well. I made the decision to radiate my very small AN. It did not work and I did my research, went to the best doctors in NYC (that is why I think their statistics are tempered with). Then had my AN removed anyway because of the growth after radiation. Fortunately, my AN was still small and I had no complications post surgery. But I regret radiation because the surgeons could not remove the whole tumor. They had to leave part of the it that scarred from radiation to save my facial nerve. If I would do it again I would never go through radiation. Remove it right away when it is small. You have the best chances for the best outcomes. the surgery is state of the art now for the small ANs.

CHD63

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Re: Gamma Knife 12/22 - seeking reassurance & support
« Reply #6 on: December 19, 2017, 06:40:05 am »
Just a note of clarification.  suz says she had surgical removal some years ago and now is experiencing regrowth, hence the recommendation for Gamma Knife.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

suz

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Re: Gamma Knife 12/22 - seeking reassurance & support
« Reply #7 on: December 19, 2017, 09:47:09 pm »
ERRNKK - Since I already had surgery I did not want to go through that again. It was rough! I did it because I was told that it would be the only option that would put this behind me - that it was likely they could get the whole tumor and I would then be finished with watching and waiting. That is not what happened. 1/3 of the tumor was left in - seemingly by accident - and then the residual tumor has grown. Clearly nothing has a guarantee. I don't regret the choice I made to have surgery initially and I don't particularly fault the surgeons for not getting all of the tumor. I am feeling pretty confident that GK will finish off the little peanut in my head.
THanks to all of you for responding. It is so wonderful to have this community to share with.
I will let you know how it goes!
Suz
Tumor 1.8cms x 1.5 cms x .5 cm;partially removed 7/14/10 by Drs. Friedman & Schwartz of House Ear Clinic in LA. Moderate SS hearing loss.
Re-growth approximate 3 mm per year; GK planned for 12/2017.
Philadelphia, PA area

Pembo

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Re: Gamma Knife 12/22 - seeking reassurance & support
« Reply #8 on: January 02, 2018, 12:47:04 pm »
Not sure if you've had it done yet but I went through gamma for regrowth in October. It was so much easier than surgery!!!  The best part for me was the ativan they gave me soon after I was through the doors from the waiting room. That took all my anxieties away and I mostly dozed on and off the rest of the morning. The head frame wasn't as awful as I thought and the procedure itself was nothing. I know they bolted my headframe to the machine but I didn't know. It really was a nice hour of relaxing to music and quiet.  Walking out the door of the hospital made it all seem rather routine.  I think you'll be pleasantly surprised at how easy the actual day will be.

Good luck to you. I'm 3 months out and other than some minor headaches and a battle with fatigue, it's been a quiet recovery.
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

 


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