ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Alphonse on July 19, 2014, 09:37:02 am
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Sharing my experience for others:
My AN is mostly contained in the IAC and is roughly 7 mm dia. x 17mm long. It was finally diagnosed in April after years of chasing symptoms (false diagnosis of Menierres Disease and sensory hearing loss for example - 3 different ENTs and a neurologist).
After the diagnosis, I visited a private practice specialist that I was referred to 250 miles away, Vanderbilt, UAB, and MD Anderson. I evaluated surgery and SRS (Novalis LINAC and GK). I eliminated "wait and see" since I have been doing that for years without knowing it and my symptoms have been accelerating since late last year. I also got copies of an earlier MRI and found the tumor myself in the older images and others also felt that it was growing, albeit slowly. I kept my trusted local internist/primary physician engaged in my evaluation - he is a good doctor and possesses the rare quality of knowing how to say, "I don't know".
After several years of dealing with this unknown malady, false diagnoses, and poorly interpreted MRIs, I have now grown quite suspicious of the medical community's pedestal they place themselves on and the amount of incompetence that permeates the profession. You must advocate for yourself and be well prepared. The value of ANA and this forum is for that very outcome - being well informed and prepared to make decisions you must make.
After my travels and evaluation process, including evaluations of SRS delivery, I chose MD Anderson and opted for the GK. The choice was easy for me and I was able to accomplish my trips and evaluation within a month. My GK treatment at MD Anderson was last Monday on July 14. Here is how it went:
- Long morning starting at 6 a.m. check-in.
Halo mounted by neurosurgeon
MRI - 35 minutes and sense that my teeth were rattling (never experienced that sensation before, could be simply vibration translated to your head due to Halo being affixed to table?)
CT Scan - 15 minutes
Treatment plan development
Gamma knife - 32 minutes
Halo removed within a few minutes by the neurosurgeon (who happened to be handy vs. his Nurse Practitioner)
Short recovery/observation period and intravenous steroid treatment - 1 1/2 hours
Released about 1:00 p.m.
Turns out Anderson's GK has a fairly new load of isotopes and is hot and that allows for quick treatments. Half life of Cobalt 60 is a little more than 5 years. By the way, the GK portion of the process was the least uncomfortable.
I met my brother and wife for dinner that evening in a nearby restaurant and was amazed at how well I felt (spelled steroids).
Slept three hours Monday night - spelled steroids).
Had a nine hour car ride home the next day. As instructed, I waited to be assured no issues during the night, everything was okay, and then we departed. We spent our nights at the Marriott run hotel on campus at MD Anderson and avoiding the Houston traffic and parking issues. It was very handy to walk across the sky bridge to the cancer center and simply have a five minute walk.
So it is now Saturday morning:
- Pin sites are healing well - a little sore but no big issues. I have used ice/gel packs to take the swelling out since Monday night.
I have the sense that there is fullness/swelling in the IAC. I have had some very minor headaches but not really requiring anything for pain. The swelling sensation seems a bit better this morning. Perhaps the steroid treatment helped keep it within tolerance??
I am more dizzy than my recent norm but certainly not debilitated.
I am far more tired and fatigued more than I expected. My wife canceled my business appointments/air travel for next week! I will rest up another week before I try climbing back into the saddle.
My hearing is worse since my ears are ringing far louder than in the past and I am getting occasional Morse code clicking from the treated side. Both seem to be a bit better today however.
Bottom line - I am happy to have the treatment behind me. I am surprised that it made me so tired and wrung out but that is improving each day. I am confident in my choice of MD Anderson and Gamma Knife. I go back for an evaluation in three months to the neurosurgeon (lab blood work and MRI). They have already arranged and emailed me the Lab, MRI, and doctor appointments as well as logging them on their on-line system for patients. They are quite systematic and in control. Of course I am very comfortable with their competency.
Hope this helps others and I will update it from time to time to let others know how the outcome develops.
Best of luck to all -[/list]
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Hope you feel better soon and thanks for the info on your GK experience! Keep us posted on how it all goes.
MG :)
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I hope you are feeling better. I am in the middle of trying to figure out the best treatment option for me. I am leaning towards the GK, but I'd be going to Pittsburgh since it's closer for me. Thanks for the details on your experience.
Alecia
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Feeling much better. I now suspect the steroids were what me feel so wrung out. From the fullness I experienced, I am glad they gave them to me to prevent swelling but it does make you feel really bad in a couple of days.
Pin sites are now essentially healed with the tenderness almost gone.
Ringing in ears decreasing but still more than the norm. The fullness in the head I sensed is on the decline.
Getting back into the work thing next week and travelling again.
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Thank you Alphonse for sharing your experience. I'm undergoing GK August 11th at UPMC and starting to get anxious. I can tolerate life as is, but just pray GK even slightly shrinks this thing. It's 2.5x2.5x1.8 CM after a major emergency AN surgery five years ago. It helped to read your experience to know what I might expect. After having been in an emergency situation, I now experience much anxiety in any medical setting. Thank you and good luck to you.