My Cyber Knife Adventure

[notaclone13]

Hi Gary, so happy to hear you are doing well and are back to taking on some challenging  activities. It is amazing you were able to hike those mountain trails just 2 months post radiosurgery, despite the dizziness. Hopefully the dizziness will diminish with time as your brain learns to depend on your one fully functional balance nerve.  I notice on my daily walks that I don’t feel too off balance when I am looking down at the path, but when I look up at the horizon it’s a different story.  After 30 - 40 minutes of walking, particularly if it is hot and sunny, I am downright dizzy and this is on flat ground. I can’t imagine how I would do on a long hike on mountain terrain. Thank you so much for posting this as it alleviates some of of the fear for those of us that may require  Radio-surgery in the future.

[gary.s]

I am hopeful that my functional 8th cranial nerve will provide enough balance in the future that some of the dizziness will go away. Prior to CK I went on a full moon hike in the mountains close to my house, and things did not work out very well. The terrain was rocky, and looking up at all the star formations while hiking was extremely difficult. The darkness caused some sensory deprivation to my vision. With both sight and balance essentially diminished, I was not having a good time. If I stood still, things were kind of okay. The moment I started moving, the world was spinning in darkness. I will have to try another full moon hike in the future and see how things turn out. Have to give my brain some time to adjust and adapt to my new normal. 

[gary.s]

It is now a few days past my three month mark post Cyber Knife radiosurgery. In general I am feeling okay, although some symptoms are occurring each day. The ringing in my AN ear comes and goes, although about one week ago it was loud and constant for a few days. During that time, I had one episode of a very loud sound that actually hurt my head. Now the ringing sounds are soft and less frequent, and I can ignore them most of the time. I have been having what I will call mini-dizzy spells. They last for about 10 seconds and occur several times a day. At times they seem to evolve into mini-vertigo spells that also last for several seconds. Nothing terrible, just have to take a deep breath and wait til my head clears. Facial numbness lacks consistency, some days my face almost feels normal and other days it is very numb. I do get a facial pain every now and then, always on my AN side. My tongue has lost its ability to taste most foods and my palate on the AN side has lost some sensation, but this was happening prior to CK. The deafness in my AN ear also seems worse, but a hearing test next week will indicate if I am imagining it or not. I flew to see family last week and was worried about the pressure issue at 30,000 feet. It all was fine and no big deal with take off, flying and landing. All of these symptoms are very tolerable and life is really pretty normal. I will report next week as to how my hearing test went.

Gary

[notaclone13]

Thanks for posting Gary. Sorry to hear about the episodes of dizziness. I have them too even though I have not yet had treatment. I have to grab onto something or sit down until it passes.  Most of the time they pass after a minute or two but they are scary for sure. They usually come on when I move too fast from one position to another. Hope they resolve for you quickly. Did any of your doctors suggest vestibular rehab to you?

[gary.s]

I am sure my doctors would suggest vestibular rehab if my symptoms were serious enough. At this point in time, they are more of a nuisance than anything else. My radiologist did tell me that various symptoms would be occurring from the tumor swelling during the 3-6 month period after CK. So that is where I am at and things are okay right now. If the symptoms become more bothersome, and hopefully they will not, then I will have to ask my doctors for help. Personally, I am trying to live my life without more and more doctor appointments, and without any additional prescription medications. So I will just tough it out.

Gary

[Gtmochi]

I am so glad things are pretty normal and ok, Gary! That’s fantastic. Also fantastic that your symptoms are more of a nuisance - that’s where I am too. Like you, I loathe the idea of more appointments or any medications, so I am on the tough-it-out train! The tasting issue though - that’s the worst. I really hope that after the 3-6 month period passes so does that problem! I know you mentioned that it was a problem previous to treatment, but with luck, the dang AN will shrink and voila! Taste!!
I am also super happy to hear that flying was no problem - I am flying to see family on the east coast in a couple months and was debating whether I’d need to avail myself of the mini bar on board...  .

[ANSydney]

Is the tasting issue on the side of the tongue that the AN is on? I have altered taste on the side of the tongue of my AN. This mainly affects sweet taste. My mind has altered habits so that I chew sweet things on the other side. Also, with time, the altered taste has become less noticeable. I guess I'm getting used to it.

[gary.s]

Hi ANSydney,

Yes, the tasting issue is on my right side which is the AN side. My lower lip and soft upper palate on the AN side are also numb most of the time. I am able to taste certain spices, like chili powder and cinnamon. When I eat sweet things, I get a very bitter after taste which is not pleasant. Salty and bitter foods like olives or pickles have become too strong for my taste buds. I also have a tendency to burn my tongue by eating foods that are too hot out of the oven, probably due to the numbness in my mouth. I have tried to eat only on my left side, but it seems like food just migrates all around my mouth. I love to eat exotic foods, and having taste buds that do not work very well is really a bummer. Not complaining, just a fact.

I have not heard from you in a very long time ANSydney, hope you are doing well.

Gary

[ANSydney]

Hi Gary, Overall, particularly considering the size of my tumor, I'm doping coping well. I haven't had active treatment and my next MRI is late August. I'll post my results. Fingers crossed.

[gary.s]

I wish you the best ANSydney. I know you have been on Watch and Wait for some time now, hopefully the tumor remains stable with no additional growth. Those darn MRI's cause so much anxiety in all of us, but they are necessary. I will keep my fingers crossed for you. Take care.

Gary

[gary.s]

I took a variety of hearing tests and the results were what I was expecting. My AN ear only has 50% word recognition, which means every other word is gibberish. The words I do hear sound like they are coming out of a very broken speaker. My AN ear is essentially non-functional. My good ear is losing the high tones due to my age. So the doctor told me to always wear ear protection and stay away from very loud noises. It was recommended that I wear hearing aids called bicros. The AN ear would wear a microphone type of device that would send the sound to the hearing aid on my good ear. It is all wireless and state of the art. I have seen on this forum that other folks really like the bicros systems. So I will give it a try.

Gary

[SP]

Hi Gary,

I'm sorry that the hearing is not so great. I found that my hearing aid has really helped over the last year or so (it's different from a bicros). It took a few weeks of weekly appointments for fine tuning, which was frustrating at the time, but worth the effort in the long run. I hope yours is a smooth journey.

Best of luck getting fitted , I hope it makes a wonderful improvement to your hearing.

be well,
Stella

[gary.s]

Thanks for the encouragement Stella. I am happy that your hearing aid is working for you. I am hopeful that I will have the same experience. My appointment with a hearing center recommended by my doctors is on August 21. I am sure it will take several appointments to get fitted and fine tune the devices. Very excited about improving my hearing.

Gary

[notaclone13]

Sorry to hear about the hearing loss Gary.  It is something we all dread, but unfortunately it is the usual outcome with Cyberknife.  I hope the hearing aid will help. Other than the hearing, I hope you are doing well and not experiencing too much dizziness.  Hopefully it is not keeping you from enjoying your usual activities.  Thanks for the update.

[gary.s]

Hi notaclone13,

I do not think that hearing loss is a usual outcome of Cyberknife. My hearing was non-functional before radiation therapy, and has only decreased with time as a result of the acoustic neuroma. My team of neurologists told me that 50% of AN patients will lose their hearing in 5 years, and another 50% at the ten year mark and so on. Although there are some surgeries that can potentially  save hearing, it is inevitable that a large number of us will lose our hearing. It is a consequence of the disease and not the therapy.

Gary