Author Topic: GK Treatment - Dr Jason Sheehan at UVA - Nov 2018 for 14mm AN  (Read 2208 times)

kestes

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GK Treatment - Dr Jason Sheehan at UVA - Nov 2018 for 14mm AN
« on: November 12, 2018, 09:16:28 am »
Hi to all, I wanted to update, just had GK treatment for my 14mm AN with Dr. Sheehan at University of Virginia.  Procedure went well.  They put you to sleep for the headframe so I just woke up with it on. Bravo!!! There was some pain at one of the pin sites but it was manageable.  Dr. Sheehan and his staff were great – Greg, Charli, Kim and Karen and all the others.  Great experience at UVA.

After GK, pin sites were painful but was able to manage with Tylenol .  Still get some shots of pain every once in a while around the pin sites, but I am sure it is the nerves healing.  Right after GK my tinnitus and foggy head were through the roof.  After a week it has settled down – it is still there but basically back to preGK status.  My balance does seem a little worse but I will start Vestibular Therapy in 2 weeks to get some exercises to help with that.  I can hear but word recognition is very difficult – I hear sound but cant recognize words out of that ear.  No way to know how that will play out as it just takes time to see what happens there.  I have had a very slight headache, but it is off and on and has not been consistent.  Pin sites have healed up nicely. 

I was treated with 12GY, at 50% Isodose for 34.6 minutes to be exact.  UVA has the new Gamma Knife Icon machine which allows for a CT scan right before treatment just to make sure everything lines up. 

I will update monthly as time passes on just to keep others posted and aware.

Next MRI May 1, 2019
12mm diagnosed Feb 2018
14mm at 6 mo MRI Aug 2018
tinnitus, high pitch hearing loss, balance issues
GK at UVA Dr Jason Sheehan Nov 2, 2018
MRI May 2019, slight swelling of AN but showing necrosis - experiencing vertigo issues
Columbia, South Carolina

notaclone13

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Re: GK Treatment - Dr Jason Sheehan at UVA - Nov 2018 for 14mm AN
« Reply #1 on: November 12, 2018, 10:17:04 am »
Hi Keyes, Happy to hear the treatment went smoothly. Hope that the uptick in symptoms will be short lived and resolve quickly. I was under the impression from what I have seen and read on the Internet that the icon did not require the use of a headframe but rather used a mask.  Do you know why they preferred to use they had frame? Also, did you receive any steroids during or after treatment. Did they mention that they could prescribe some if necessary?

kestes

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Re: GK Treatment - Dr Jason Sheehan at UVA - Nov 2018 for 14mm AN
« Reply #2 on: November 12, 2018, 10:38:56 am »
The Icon does use a headframe, never a mention of any mask, so I am not sure. Others that I know that have gone to UMPC Pittsburgh and Mayo who also have new Icon have headframe as well.   I actually was given a steroid shot Decadron I believe prior to my treatment and yes they did say I could call back and they would put me on steroids if I had symptoms.  I have not called because mine have been minor or Tylenol has helped.  If I had a pounding headache or eye twitching for hours then I certainly would call them and I still may have to, I take it day by day.  I am drinking waters and electrolytes along with diet sodas :(, have no idea if that helps other than staying hydrated. 
12mm diagnosed Feb 2018
14mm at 6 mo MRI Aug 2018
tinnitus, high pitch hearing loss, balance issues
GK at UVA Dr Jason Sheehan Nov 2, 2018
MRI May 2019, slight swelling of AN but showing necrosis - experiencing vertigo issues
Columbia, South Carolina

Freelander

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Re: GK Treatment - Dr Jason Sheehan at UVA - Nov 2018 for 14mm AN
« Reply #3 on: November 27, 2018, 03:13:17 pm »
Thanks for the news about GK, UVA and the Icon machine.   When you can, keep us posted on your symptoms, etc., always informative to learn about the experiences. 
BEST WISHES!

Blw

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Re: GK Treatment - Dr Jason Sheehan at UVA - Nov 2018 for 14mm AN
« Reply #4 on: November 27, 2018, 07:56:44 pm »
I went there as well. Great team.

kestes

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Re: GK Treatment - Dr Jason Sheehan at UVA - Nov 2018 for 14mm AN
« Reply #5 on: November 28, 2018, 10:45:10 am »
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? 
12mm diagnosed Feb 2018
14mm at 6 mo MRI Aug 2018
tinnitus, high pitch hearing loss, balance issues
GK at UVA Dr Jason Sheehan Nov 2, 2018
MRI May 2019, slight swelling of AN but showing necrosis - experiencing vertigo issues
Columbia, South Carolina

Freelander

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Re: GK Treatment - Dr Jason Sheehan at UVA - Nov 2018 for 14mm AN
« Reply #6 on: December 08, 2018, 07:40:14 pm »
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

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Re: GK Treatment - Dr Jason Sheehan at UVA - Nov 2018 for 14mm AN
« Reply #7 on: December 27, 2018, 10:11:38 am »
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! 
12mm diagnosed Feb 2018
14mm at 6 mo MRI Aug 2018
tinnitus, high pitch hearing loss, balance issues
GK at UVA Dr Jason Sheehan Nov 2, 2018
MRI May 2019, slight swelling of AN but showing necrosis - experiencing vertigo issues
Columbia, South Carolina

notaclone13

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Re: GK Treatment - Dr Jason Sheehan at UVA - Nov 2018 for 14mm AN
« Reply #8 on: December 27, 2018, 11:03:11 am »
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

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Re: GK Treatment - Dr Jason Sheehan at UVA - Nov 2018 for 14mm AN
« Reply #9 on: December 28, 2018, 10:39:08 am »
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. 
12mm diagnosed Feb 2018
14mm at 6 mo MRI Aug 2018
tinnitus, high pitch hearing loss, balance issues
GK at UVA Dr Jason Sheehan Nov 2, 2018
MRI May 2019, slight swelling of AN but showing necrosis - experiencing vertigo issues
Columbia, South Carolina

kestes

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Re: GK Treatment - Dr Jason Sheehan at UVA - Nov 2018 for 14mm AN
« Reply #10 on: April 09, 2019, 08:17:59 am »
5 month update – just had my followup mri, AN showed slight increase and also showed some necrosis in  tumor.  All of this seems normal for the course of a recently radiated tumor.  My doctor will see me in 6 months and expects the tumor to shrink over time.  I have begun experiencing some slight vertigo episodes, lasting maybe a minute or so.  I am trying to learn what triggers them and then don’t do that particular thing.  For instance walking up stairs I get woozy, but walking downstairs I am ok – so I take the elevator instead.  When I run, I have to look straight ahead – but I still run 2 miles a few times a week.  I have taken a round of tapered steroids but that made me feel worse, so I will keep exercising and adjusting to what I need to adjust to.  Fatigue is a factor, but I had fatigue before GK and is about the same.  Tinnitus before GK and about the same now as well.  Hearing seems to have decreased but not sure how much. I can still talk on cell phone but things are kind of static.  Otherwise I feel good, no headaches or facial spasms at this point and will continue living and enjoying life! 
12mm diagnosed Feb 2018
14mm at 6 mo MRI Aug 2018
tinnitus, high pitch hearing loss, balance issues
GK at UVA Dr Jason Sheehan Nov 2, 2018
MRI May 2019, slight swelling of AN but showing necrosis - experiencing vertigo issues
Columbia, South Carolina

 


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