Symptoms before and after Radiosurgery - personal experiences wanted!!!

[ANontherun]

Hi Bonnie, my tumor was located in the center of my iac and about 2mm from my brain stem.  I chose CK as most of the medical professionals I consulted with advised me that there would be very little collateral damage to surrounding tissue based on my tumors location.  This was also why i acted quickly in the chance the tumor would grow and press against my brain stem or grow deeper into my iac.  The one constant about our condition is that no two AN's are the same.  Each case is unique and ultimately you have to digest all the information, trust yourself and believe in your physician.  Best of Luck and life is great on the other side.

[john1455]

Hi Bonnie,
My pre and post op symptoms are balance issues (a 3 on a scale of 1 to 10), tinnitus, and about 75% hearing loss in the AN ear. Although I can hear just a tiny bit more now in my AN ear than before CK, my hearing tests did not indicate that. How I know is my wife often plays white noise sounds and other sleep inducing music on her iPad at bedtime and whenever I come to bed while it's still playing, all I had to do was sleep with my good ear down on the pillow and all the sounds would disappear. Now, however, when I do that I can hear some sound. They are very muffled but definitely audible whereas before I heard nothing at all. The recent audiology tests I had at Stanford showed that my hearing in both ears were essentially unchanged. I still have 75% hearing loss in my right (AN) ear. So, as expected, CK neither improved nor worsen my symptoms. I am in front of my laptop a lot and I do not have any headache problems at all.

[KeepSmiling]

Dear ANnIdaho
Sorry for the delayed reply.  Just to add to the previous post---

Prior to August 2013 Proton Therapy:
-ringing in his ear or tinnitus that he noticed at least in 2009. He went to a otolaryngologist in 2009 and indicated it was his main concern for at least a year.
-sleep apnea-In 2009 the doctor prescribed a much improved C-pap machine, which was very helpful. 
-He was previously was diagnosed with sleep apnea years ago but he discontinued using  the ineffective and expensive C-Pap machine that was prescribed to him.  He also had abandoned an ineffective  dental appliance that was prescribed for his sleep apnea. From 2009 to present he is using a C-pap machine for sleep apnea and it is helpful.
-had no noticeable balance issues and in fact was bicycling long distances with a group of avid bicyclists.
-had no cognitive issues and in fact took on a huge mental challenge . He successfully returned to mechanical engineering, his field of study- in which he holds an undergraduate degree and a masters degree,  after being in Information Technology for more than a decade.
After the Proton Beam Treatment (my observations)
-occasional tinnitus - I believe it is not frequent. Ask him whether the ringing is worse or better now , I think it could be better I don't know.
-difficulty hearing conversations in places with high ceilings
-sensitive to hearing in his good ear -wears ear plugs to protect hearing in good ear when using vacuum cleaner, mower, concerts, loud movies...
-sharp critical thinking, great  curiosity and good analytical skills. Has easily taken on new added responsibilities at work. Is recognized as an authority on solving a specific problem in his field (rocket science)
-good sense of humor.

If this helps, here is the language found in the hearing test that he had in our state of residence, prior to the proton therapy which occurred at Massachusetts General in Boston. It notes his deafness in the ear.
**Also please note, the language that indicates that he has irregularities in his ears which made testing difficult: "Otoscopic examination- Patient's external ear canals narrow from entrance to TM and tortuous. Tympanometry-difficult to assess due to configuration of canals, repeated attempts necessary. Left: Type A-WNL. Right: Type V-Flat, non complaint. Pure tone and air bone conduction threshold testing: Left: Profound hearing loss. No auditory response by air or bone conduction to stimuli at equipment limits, vibrotactile only. "
*** We would be willing to give more details about family health history in conversation. Want to talk? Please send us a personal message. Then we'll exchange contact info, including e-mails and we'll arrange for a mutually convenient time to talk, maybe tonight. We are eager to provide hope for patients who are diagnosed with vestibular schwannomas. We want to help.



 

[ANnIdaho]

Thank you all for your responses. It has been so helpful having this forum.  Yes, ANontherun, you are absolutely right no two ANs are alike and all our journeys are unique.  But at least this forum means we aren't alone.

Wish I just had a crystal ball and could predict whether radiosurgery or radiotherapy will elevate this smarting headache I get when ever I work (computer) or challenge my balance system (paddle boarding) I hate running at 50% capacity!!  Every day it seems to get worse.

Best of luck to you all in your journeys whether it be as a caregiver and encourager or as a fellow Aner.

Bonnie

[sunny]

Hi Bonnie,

If you are still collecting experiences, I can share mine, although I am only recently treated.
I was diagnosed with my AN in April 2015.
Just yesterday, I completed my three treatments of CK at Stanford with Dr. Chang and Dr. Hancock (and team).

Although I understand ANs are typically slow-growing, I made the choice to have treatment before giving my symptoms the chance to get worse. The partial hearing loss (audiogram measured as 56% word recognition) and tinnitus (which I personally describe as a loudness of "2" on a scale of 1-5, and non-stop) appeared quickly, seemingly overnight, and I didn't want to wake up one morning and have my balance affected, as well. Dr. Chang referred to them as my "baseline symptoms" and we discussed that baseline symptoms are not typically reversed by treatment. I didn't want anymore irreversible baseline symptoms.

I can tell you that the treatment and care that I received at Stanford was top-notch, that the actual time "on the table" (3 times, 30 min each) was almost easy. Radiation turned out to be the choice that I was comfortable with. I know that choosing radiation over surgery can be seen as postponing possible side effects (with the possible tumor swelling down the road due to the radiation), but I have an active lifestyle, good health, supportive family, and will be prepared as I can be for whatever comes.

Good luck to you, Bonnie, with your research, choice, and outcome.
We are so fortunate to have this forum of generous people sharing their experiences and knowledge.
I hope to continue posting my progress to give other ANers another account of CK recovery.

All the best to you.
sunny

[ANnIdaho]

Thank you sunny for sharing your experience. I wish you all the best after your ck treatment. It's those baseline symptoms not going away after radiosurgery that kind of make me lean towards surgery. I have daily "smacky" head headaches and my hearing is still excellent and if I can preserve that it would be great but I shouldn't count on it. Thanks again for posting!

[CattAN]

Thank you all for posting on this topic.  I re-read this thread as I prepare for my CK treatment next Wednesday, 9/2/2015.  This Forum or support group plays a huge role in my journey.  I read that symptoms fluctuate.  I guess this is good, since I will not have to live with constant tinnitus or headache, or whatever the AN brings.  I've been told that I will not regain my hearing.  That is not my expectation.  I will be ecstatic if I leave with what I bring to the zapping table.  I am going without crutches, i.e. no Xanax, no Ativan, etc....just my iPod and me.  I put my faith in my doctors and in the shared experiences I read on this Forum. 

[MG]

CattAN, I wish you the best of luck ! Keep us posted!

MG

[sunny]

CattAN,

All the best to you on the "zapping table" on September 2nd!
I think you will find the treatment quite do-able, and the staff, amazing.

I didn't know that CK could be done in one visit, so please post when you're done and tell us how it went.
Take care,

sunny

[PaulW]

For a small tumour your baseline will not necessarily improve either. The risk of headache, facial nerve and hearing nerve damage are all higher with surgery. Balance nerve issues favours surgery by a small margin. in surgery they cut the balance nerve, which reduces symptoms but may make your balance worse but without as many problems with dizziness and nausea..
If your balance is bad after radiosurgery it can be treated with an injection into the eardrum using an antibiotic Gentamicin... In the right dose hearing is saved but the balance part of the ear is damaged permanently. With your tumour being so small I would question whether your headaches and AN are even related.. I think I would be exploring the headache issue seperately to the AN

[ANontherun]

CattAN, best of luck next week.  I use to call my AN my "Dark Passenger" but over time I realized it made me appreciate everything in my life that I hold dear.  Yes, some days are better than others but life is great on the other side of your CK treatment. 

[CattAN]

ANontherun,

Thanks for the reassurance, my team of doctors (Dr. Chang & Dr. Gibbs) is the same as yours.  It's good to know that life will continue, and yes the AN makes me appreciate many things I took for granted.  It seems that depression is one of its side effects, but I find that a good sense of humor will carry me out of it.   As Eric Idle says "Always Look on The Bright Side of Life".

[mcrue]

Thanks for the information on this thread. I'm sure a lot of people who are considering radiation have their "top 10 list" of possible fears that may or may not manifest after radiation treatment. It sounds like the most common side effects are hearing loss, fatigue, and balance issues.

[DizzyMamaIL]

I just wanted to chime in and say thank you for sharing all this information. I recently decided to go with GK, but my tumor is larger than any I've seen mentioned in this forum, so that's quite worrisome. The neurologist and the Internet research I've seen suggest I'm still a candidate, though. Anyway, didn't want to just silently read all of your posts without saying thank you!

[tdlight]

Hi Dizzy - I'm no expert but from what I've read it sounds like 1x2 cm is well within the range for GK.  I have seen mention of tumors in the 4-5 cm range on the forum; I think those sizes are more likely candidates for surgery, but you should not worry about the size of yours.  As you have read outcomes seem to have a lot more to do with your personal circumstances, largely tumor location.  I have a relatively small tumor but it is very near the cochlea, so I am being proactive in my treatment (CK in two weeks!) before my symptoms worsen. 

Good luck with treatment!