10 year post cyber knife treatment headaches

[ash]

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

[donjehle]

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.

[ash]

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.

[donjehle]

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.

[ash]

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

[mwatto]

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.

[ash]

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.

[mwatto]

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. Am 5 years in. Full spectrum CBD really helps my nerve pain (had MRI last year and trigeminal nerve normal- going to look at facial nerve this MRI). Try the CBD maybe.

[P C L]

Dear AN community, I have been reading these posts since I was diagnosed with NF2 and an accompanying AN in 2015. What a shock because I am older and my NF2 is not genetic but mosaic, meaning new case, one side, my right side of brain.  The NF2 tumors have been fairly stable, the AN as well until after I got my Covid vaccines and boosters.  I had really strong reactions, wiped out reactions to Moderna, that lasted for months.  I was told it was a good immune response.  But suddenly the tinnitus was full blast all of the time, I had scratchy hearing that hurt, and my AN began growing, as in 7x8mm to 13x11. I see Dr. Jackler at Stanford.  He recommends Cyber Knife with Dr. Soltys who has been less sure, becasue I have NF2 and the radiation dose is much higher, and advised we wait for continued growth. Reading others'  side effects is terrifying. So my questions are, did anyone else have reactions to their Covid vaccines that seemed to be causal with AN growth or symptoms?  And how many years do you have to "watch your back" for symptoms after Cyber Knife? 

Thanks.
PaulaC

[mwatto]

Hi PCL I had a very bad reaction to Pfizer in 2021- a really big flare of nerve pain on my AN side along with various issues- however the MRI since then showed no change - mind you I am due for my 4th MRI so we will see. It took me just over a year to recover from that one vx and never again.

[mwatto]

Hi Ash on my covid long hauler forum some have had symtoms similar to you with B6 toxicity- could your supplement cause the headaches maybe?

[v357139]

Hi there.  Very sorry for your pain.  I have heard of trigeminal neuralgia after radiosurgery.  Obviously I am no doctor.  Impossible to say without an MRI.  If its not related to the radiosurgery, then you want to find out what it is.  I would push for another MRI or some type of other examination, to make sure about the cause.