Author Topic: 10 year post cyber knife treatment headaches  (Read 423 times)

ash

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10 year post cyber knife treatment headaches
« on: October 04, 2022, 07:42:23 am »
Treated at Stanford. New mri shows no growth.  Headaches are now unbearable.  Two specialists in Philadelphia state radiation damage, start reading lips and pain management.  Stanford feels 10 year out highly unlikely and is auditory nerve virus and put on strong steroids. Any information is appreciated. Thank You
Born deaf in left ear, Diagnosed AN in right ear 2/1/ 2010 4 x 3 x 2mm; 8/1/2010 4 x 3 x 4mm; 9/1/2011 6 x 4 x 4 mm; 3/1/2012 8 x 4 x 4mm; Recommendations: U of Penn-GK; Stanford-CK; NY-CK; Cooper-Novalis; Pittsburgh-GK; HEI- still waiting ; Treatment: Stanford-CK 5/10/2012 (Dr. Chang, Dr. Soltys)

donjehle

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Re: 10 year post cyber knife treatment headaches
« Reply #1 on: October 05, 2022, 08:25:40 pm »
Thank you for updating us, ash!

I'm glad to hear that the mri shows no growth.  That's wonderful to hear!  It's not so great to hear about your terrible headaches.  I have no idea if this could come ten years after treatment.  Hopefully, some others on the forum can share their experiences and whether it could have come from a virus.  I hope the strong steroids help you more than they did me.

Let us know if you find an answer.
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

ash

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Re: 10 year post cyber knife treatment headaches
« Reply #2 on: October 09, 2022, 02:29:18 pm »
Almost finished steroids.  No help. The headaches seem to be caused by higher pitched sounds.  I can’t use my hearing aids anymore. I struggle to get through the day.
Born deaf in left ear, Diagnosed AN in right ear 2/1/ 2010 4 x 3 x 2mm; 8/1/2010 4 x 3 x 4mm; 9/1/2011 6 x 4 x 4 mm; 3/1/2012 8 x 4 x 4mm; Recommendations: U of Penn-GK; Stanford-CK; NY-CK; Cooper-Novalis; Pittsburgh-GK; HEI- still waiting ; Treatment: Stanford-CK 5/10/2012 (Dr. Chang, Dr. Soltys)

donjehle

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Re: 10 year post cyber knife treatment headaches
« Reply #3 on: October 09, 2022, 04:54:36 pm »
I hate to hear that, ash!  If you can't use your hearing aids anymore, what does your audiologist recommend?  And what, if anything, helps with your headaches?  Please share so that others may benefit from anything you have learned that helps.
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

ash

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Re: 10 year post cyber knife treatment headaches
« Reply #4 on: October 11, 2022, 11:37:32 am »
My hearing aid amplifies  sound so they make the pain worse. These headaches are unimaginable. They talk pain management but what I’ve read the medications did other damage to the body. Don’t know what will be suggested by Stanford when I contact them when I’m formally done the steroids. I just know I won’t be able to tolerate this long term. If anyone has information about pain medication please contact me. Thank You
Born deaf in left ear, Diagnosed AN in right ear 2/1/ 2010 4 x 3 x 2mm; 8/1/2010 4 x 3 x 4mm; 9/1/2011 6 x 4 x 4 mm; 3/1/2012 8 x 4 x 4mm; Recommendations: U of Penn-GK; Stanford-CK; NY-CK; Cooper-Novalis; Pittsburgh-GK; HEI- still waiting ; Treatment: Stanford-CK 5/10/2012 (Dr. Chang, Dr. Soltys)

mwatto

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Re: 10 year post cyber knife treatment headaches
« Reply #5 on: October 13, 2022, 03:45:11 am »
For neuroinflammation I am using Low dose naltrexone (I take 0.25mg with a ginger filler), levagen PEA, melatonin. I also take gentle herbal tinctures like lemon balm, CBD...I get bad stabbing pain-behind eys, deep in ear, throat even almost 4 years post CK. I dont really get headaches - but this all helps me with my nerve pain. I also saw a jaw and neck physio as some of my issues could come from there. I also find that a very low dose aspirin helps and also a fragment of zolpidem which I take now and again. From what I have read overactive micro glial cells can cause pain. I hesitate to even share this tbh as some see it as offering medical advice- but I feel for you and this is whats helping me.
Michele
20 x19x14mm AN diagnosed Feb 2019. Cyberknife .
Mri Oct 2019 showed shrinking to: 18x17x13 mm.
Mri Oct 2020 - no cystic components visible now. Slight shrinking, stable.
MRI 2021 stable no change
MRI 2022 stable no change.

ash

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Re: 10 year post cyber knife treatment headaches
« Reply #6 on: October 31, 2022, 12:11:39 pm »
Stanford had me on medication to dry me out. It didn’t help. I have been directed to pain management. I think I have either recruitment or Hyperacusis which is causing my headaches but there’s been no mention of it. I have contacted a pain management near me and they recommend seeing their neurologist first. He has good reviews but the first opening is third week of December! I use melatonin at night and a time release b complex for tinnitus. I feel it helps. Research says aspirin and Tylenol brings out tinnitus. Thank You for the support.
Born deaf in left ear, Diagnosed AN in right ear 2/1/ 2010 4 x 3 x 2mm; 8/1/2010 4 x 3 x 4mm; 9/1/2011 6 x 4 x 4 mm; 3/1/2012 8 x 4 x 4mm; Recommendations: U of Penn-GK; Stanford-CK; NY-CK; Cooper-Novalis; Pittsburgh-GK; HEI- still waiting ; Treatment: Stanford-CK 5/10/2012 (Dr. Chang, Dr. Soltys)

mwatto

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Re: 10 year post cyber knife treatment headaches
« Reply #7 on: November 09, 2022, 12:55:58 am »
I have had hyperacusis most of life- a bit better after CK now. However I was told by audiologist that this is a damaged acoustic nerve. I get very bad stabbing ear pain before and after the CK. For me like yesterday, lemon balm tincture (the alcoholic one) helps , I also took boswellia, bromelain and PEA. Last night I took a slightly higher dose of the liquid compunded melatonin also- no nerve pain today, slept soundly too. I have never had much tinnitus tho ever. My hearing 4 years after CK is good. So is balance. Just this stabbing nerve pain behind eyes , in jaw and deep ear throws me every time. I declined all drugs so far. I did try LDN too but am not taking now as it seemed strangely enough to cause joint pain.
Michele
20 x19x14mm AN diagnosed Feb 2019. Cyberknife .
Mri Oct 2019 showed shrinking to: 18x17x13 mm.
Mri Oct 2020 - no cystic components visible now. Slight shrinking, stable.
MRI 2021 stable no change
MRI 2022 stable no change.

 


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