Treatment Options > Radiation / Radiosurgery

GK Treatment - Dr Jason Sheehan at UVA - Nov 2018 for 14mm AN

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kestes:
Freelander, I sure will, I plan to so that others can research and see what happens during the process.  I had treatment Nov. 2 and am heading to hike The Wave in Arizona and do a few other hikes next week....just 4 weeks after GK, so I plan to update after that trip as well. Thought an update of about every 6 weeks would be good! 

Are you having GK, surgery or watch & wait? 

Freelander:
How are you doing Kestes? Would like to know how your strenuous Arizona hiking adventures went so soon after GK.    Please share a story.

Referring back to your treatment, did the Icon machine move around the way the Cyberknife can, or was it stationary?  I've been on W&W for over three years, and still exploring options between the Icon, Cyberknife and proton therapy, though I would give anything to have an Rx shrink the annoyance.  My latest MRI from October has generated three different measurements from three leading AN institutions (MEEI, NYU, and Stanford), which had over 2 mm of discrepancy in the dimensions since a previous MRI from April 2018. Knowing that a 1-2 mm difference isn't unusual, yet, one would think there would have been concurrence between two of the three.   Most bothersome have been new symptoms since April, e.g., increased tingling and numbness in the facial nerves on the tumor side of the face, and slightly worsening tipsiness.  These additional signs, and the mixed readings on tumor growth, are challenging my innate desire to procrastinate making a decision to intervene, and propelling me toward doing what I always hoped to avoid, especially since radiation does not seem to cure one's pre-treatment symptoms.   Do you feel your symptoms have decreased, increased or stayed the same since GK less than a month ago?   

kestes:
Hi!  an update, I am doing very well.  First 2 weeks were rough, increased tinnitus and hearing loss.  Pain from the pin sites, but that is normal, it was 4 small wounds to my skull/head.  I have had a few minor eye twitching but that may be only once a week for a second.  No headaches at all other than the first few days after frame removed. 

tinnitus is back at PreGK pitch.  It does get louder in louder environments but totally normal.  Hearing loss is still there and may be slightly worse with word recognition, but again all normal for this tumor.

We did just fly to Utah - 5 weeks after GK - and we hiked 25 miles around Southern Utah.  I did excellent.  No trouble flying or hiking. Now....I do use hiking poles to help with my balance, and I stop before I look around or otherwise I would get dizzy.  This all happened preGK also.  I have been in Vestibular Therapy to get some exercises because the looking around - quick turns make me dizzy, but again, I had those same symptoms before GK. 

I have fatigue, which it seems a little worse but I had the fatigue before also.  But I am constantly on the go, cooking, cleaning, exercising, etc.  so of course that will contribute to some of my fatigue along with the AN. 

At 6 weeks I am still doing everything I did pre GK,  a little slower but I truly am doing well all things considered.

Oh, the Icon machine, it did move and would stop and start but I don't remember if the whole table moved or if the machine around me moved. 

Hope this is helpful to you all!  I will keep updating as things progress! 

notaclone13:
Thanks for the update kestes. It is good news to hear that you are doing so well and gives the rest of us in W&W hope that radiation treatment will not make symptoms much worse. Also good to hear you had such a positive experience with Dr. Sheehan. Do you know if your AN was located entirely in the IAC? Did you receive any steroids after treatment?
 

kestes:
Hi yes it was entirely in the IAC - not near brainstem at all, I wish I could post a picture of it.  I will see if I can this weekend.  It was very long and skinny not yet like the mushroom you see.  During the treatment, I had an IV, first because you are in the operating room for the head frame attachment as you are put to sleep with anesthesia.  Iv also allowed fluids since was not able to eat.  They did give me a shot of decadron steroid in the IV also.  I had steroids for 6 days about a week after GK, but it really didn't help or change anything, they prescribed it because my balance was wobbly and I am now in Vestibular Therapy and it seems to be helping. 

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