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

[ANnIdaho]

As I have been researching various treatment options for my small AN, I have heard that basically what symptoms you have going into radiosurgery (whether CyberKnife or GammeKnife) are basically the symptoms you will have afterwards. Except of course hearing which can deteriorate as time goes on.

My hearing is excellent and I have some vestibular dysfunction on my superior branch of my vestibular nerve.  I really don't "feel" like I have balance issues but after a day working on the computer or outside, my head hurts and I have the strange facial coldness/ear fullness, etc. My blood pressure which was just marginally high and controlled fine by a minimum dose of BP meds is now quite high even with a double dose of my usual prescription.

Most doctors and other folk have told me that most of my symptoms are stress related.  The headaches they say are most likely my other balance systems kicking into gear trying to make up for the dysfunction from my VS nerve.

Can anyone tell me their experience with whether symptoms improved, stay the same, got worse with their radiosurgery treatments?

Thanks,

Bonnie

[rupert]

It's really impossible to say what symptoms will get better or worse,  and impossible to say if it was the treatment or time itself, and then also everyone is different.  How's that for not much of an answer.  
Here's my symptom history pre GK to 5 years post GK. AN size was 2.2CM X 1.6CM.

Pre GK symptoms were balance issues, facial tightness, dry eye, burning tongue with some foods and drink tasting  like wet cardboard.  And of course hearing decline with tinnitus. Only 20% word recognition.

Post GK,  facial tightness, burning tongue and taste issues disappeared almost immediate.  My balance has steadily improved.  Dry eye is now just in the winter months and my hearing is about the same, bad.

I believe the balance has just resolved over time as my body adjusts. Some people find help with physical therapy but I never needed it thankfully.  I believe, but don't really know that the facial tightness, dry eye and burning tongue with taste issues were from the tumor aggravating some nerves and so I believe the treatment helped with those.   Hearing was shot from the start so nothing changed with that of course.,

Most people with AN's will have hearing issues one way or another and there's really  not much you can do.  Balance can be worked on either on your own or through therapy. Other symptoms, individual results may vary.   Good luck in your research.

[ANnIdaho]

Thanks Rupert for your reply!  I wonder if my facial symptoms could be explained as facial tightness and good to hear that went away immediately. I do realize every AN and every situation is different.  But there still are some commonalities.

[rupert]

I call it facial tightness but, I have no technical name just something I came up with to describe it.  That symptom was actually the starting point in finding out I had an AN.  I went to the dentist because I thought it was TMJ. It was bothering me a lot and over the course of a year my family doc put 2 and 2 together on all the symptoms and sent me to an ENT who decided to do an MRI,  just to rule out anything like a tumor. LOL.  I remember thinking it was a big waste of time.   Needless to say I was a little shocked when they called the next day.   My face just felt tight on one side, kind of like a muscle cramp.  It felt better after massaging but always came back.  I have not had that symptom since the GK procedure.   I have no idea why but, I'll take it.

[PaulW]

Before Radiosurgery I had hearing loss, and although I didn't know it, I had balance problems and vision problems as well
When my ENT got me to stand on one leg with my eyes closed I found out I couldn't do it for more than a few seconds.
I also had a defective vestibular ocular reflex (VOR) tested using Halmagyi-Curthoys head impulse test...
Another thing I hadn't noticed.. The VOR is like a Gyroscope for your eyes, without it you need to move your eyes consciously, rather than automatically when head movement occurs... This extra effort on your brain can make you tire more easily. 

It should be noted that most people with AN's have this problem.... they just probably don't notice... It does cause issues where your head is moving a lot in particular..

I was also getting tired easily, felt like I my head was somewhat disconnected from my body, and my brain was living in a fluffy cloud.
My ear had a full feeling, sound in my bad ear was distorted, and was more of a distraction than useful.

That was before Radiation....

Straight after Cyberknife, my hearing went from not good to pretty useless within 12 hours, tinnitus began, and balance got worse.
After Cyberknife rather than having constant symptoms, they fluctuated, hearing would get worse then improve, balance would get worse then improve and the same with the Tinnitus.... I always had 2 out of the 3 symptoms, and things started in a 2-3 day cycle which gradually got longer.

At around 6 months things actually felt better than pre radiosurgery. Around 8 months my hearing had actually recovered and was almost back to completely normal... It took 2 years before things felt really good again..

I am now close to 5 years post Cyberknife.. My hearing is better than it was pre radiosurgery, although it did decline between 8 months and 48 months.
My current hearing has been pretty stable over the last 12 months. My Hearing is completly normal up to 512Hz, I have mild hearing loss from 1KHz and above. Despite this my pure tone average still places me in the Normal Hearing Range.. I don't use a hearing aid, audiologist still deems it unnecessary.

My Balance has improved significantly over time, a few weeks before CK I went snow skiing... I found it very hard to stay upright when visibility was bad.   
I really didn't enjoy it at all. Two years after CK I began skiing again and enjoying it, without feeling dizzy, and having good balance, even in a whiteout.
Have since skied in Japan and Australia with the family and had a great time.

Life now goes on as it did before I even knew I had an AN, except for the mild hearing loss....still without a hearing aid.

I don't live in the US. I had single session CK at the European Cyberknife Centre in Germany. They were brilliant



 

[NYLady]

For me, my primary issues were balance difficulties, tinnitus, fullness feeling in my head and loss of hearing in my AN ear.  I had already had hearing loss in both ears and wore hearing aids, but my audio noticed a dramatic drop in hearing on my AN side and sent me to my ENT.  He, in turn, ordered the MRI which confirmed diagnosis of 5.4mm AN.  Not big, but causing a lot of mischief.  From what I have been told, sometimes its not the size of the tumor, but its location that is problematic. Mine is very close to the cochlea, actually a bit inside.  After GK last July, I felt absolutely great....for about three months.  Then slowly but surely, hearing deteriorated and balance issues got worse.  Tinnitus is still there, but very manageable at this point.  Fullness sensation happens only once in awhile.  On my six month MRI, the tumor shows a black area inside, which was described as necrosis.  Will have another MRI in July at one year mark.  I am hopeful that most symptoms will become somewhat better in time, but as my surgeon told me, and other surgeons have told their patients, treatment does not guarantee that.  I am grateful that my treatment seems to have stopped the growth of this little devil before I developed worsening symptoms, which also could have remained with me.  Honestly, Idaho, we are all so different in the location, size of tumor, symptoms and just the way we respond to all of it, including treatment, that it really is hard to judge just how any individual will end up.  I will be starting vestibular therapy (going for evaluation tomorrow), which promises to help somewhat with the balance/unsteadiness problem.  I now wear Phonak BiCros hearing aids, which have made an enormous difference in my life.    I believe that each of us must educate ourselves so that we are able to choose the options that are best for ourselves.  Place yourself in the hands of good doctors who inspire confidence in their recommendations  based on high volume of patients they treat, and move forward, with the commitment to do all you can to help yourself achieve the best result for you.  Wishing you the best in your journey.

NYL

[ANnIdaho]

Thanks for your feedback PaulW.  That is interesting about your VOR testing as that could explain while computer work causes fatigue and headaches.  I too was the same and thought my balance was fine til Dr told me to close my eyes...huge difference. I just try not to walk around with my eyes closed anymore.  Your getting back to skiing is encouraging indeed!

Bonnie

[ANnIdaho]

Thanks NYL for your feedback and encouraging words.  Good luck to you on your journey as well. I hope you find more shrinkage/necrosis on your next MRI!

[KeepSmiling]

Bonnie
After months of study and deliberation my husband proceeded with a type of radiation called proton beam treatment. It required an extended stay ($) in Boston, which is not near where we live, but we are pleased to report that he has had a very good outcome. (The one year post-treatment MRI showed that the tumor has no grown at all and there is a darkening on the inside, indicating the cutting off of the blood supply to the tumor)

His outcome has been excellent. He had 28 sessions of Proton Therapy at Massachusetts General Hospital. There were no side effects during treatment. None at all. He continued to work each day and often was teleconferencing. He was feeling completely well. He went to the gym each day and worked out vigorously on the elliptical machine and the bike. We walked all over Boston. He had no fatigue. When we returned home he was bicycling in the hot sun, doing distances that range for 50 to 70+ miles. He was feeling fine.

Please note that I continue to write here at this forum with updates about him but they are rather boring, since he has had no problems.  Please take a look at the posts submitted by me (Keep Smiling) at the forum section called radiation for more details.

It is now 2015 and he still feels well. His condition has not changed. It is the same. He still has deafness in that ear. His good ear is sensitive and he wears ear plugs when we go to the movies sometimes to protect the hearing in that ear.  He has occasional tinnitus. He has very sharp thinking and superior analytical skills=no cognitive issues whatsoever. There are no facial seizures, no balance issues. Last weekend he was on his bike and kept pace on his bicycle for 70+ miles with the other guys, a few who are in their 30's (one guy regularly wins triathlons). It was very hot here.  He has not missed any time at work. Not one day.

Feel free to contact us by sending us a personal message. We'll talk on the phone if you want more details.

[PaulW]

Most "Symptoms" from radiation are linked to changes in the hearing/balance nerve (They are the same nerve).
From my observation people who are completely deaf, have fare fewer "symptoms" after radiation.
Probably because the nerve is already dead. People with functional hearing seem to have more issues with balance, hearing, and tinnitus after radiosurgery. The nerve after all gets the full dose of radiation, just like the tumour.

If you have hearing, expect some symptoms after radiation.
If your hearing is completely gone... there is a greater chance you will just breeze through.

[ANnIdaho]

Dear KeepSmiling

What a wonderful success story for your husband. Did he have any other symptoms besides hearing loss before his treatment?

Dear PaulW

Interesting point about hearing loss before treatment making it easier to breeze through radiosurgery.

Thank you both for your input!

[arizonajack]

Most "Symptoms" from radiation are linked to changes in the hearing/balance nerve (They are the same nerve).
From my observation people who are completely deaf, have fare fewer "symptoms" after radiation.
Probably because the nerve is already dead. People with functional hearing seem to have more issues with balance, hearing, and tinnitus after radiosurgery. The nerve after all gets the full dose of radiation, just like the tumour.

That never occurred to me but it could explain my relatively boring and uneventful Post-GK life. I was already SSD for at least half a year before my GK.

ANnIdaho, you can read my history at the link at the bottom of my post.

[ANontherun]

I had CK at Stanford in May of 2013.  Just completed my second post treatment MRI and hearing test. My tumor was small to medium and located in a favorable spot.  My hearing has remained mostly in tact though there has been a slight deteriation in my AN ear (left) since my last test in 2014.  Overall, my hearing has diminished to 75% of normal.  My side effects were very light, mostly fatigue for a few days but I chalk some of that to the stress related to deciding on what treatment and the actual treatment.  Overall, I'm back to my normal pre-AN life with very few side effects.  The tinnitus can be managed but ultimately you learn to live with it.  It is a bit of a bummer that the idea of complete silence will never be enjoyed again but overall I feel blessed.  Stanford is a first class facility and would highly recommend Dr. Chang and his staff.

Best of luck.

[john1455]

My pre OP and post OP symptoms were the same after all the dust settled. For the first week after CK, my symptoms worsen just a tad, though. I recently had my second annual post OP MRI and hearing test (May 2015) at Stanford and the AN showed slight decease in size and there was no change in my hearing. I second ANontherun's comments about Stanford and Dr Chang and his staff!

[ANnIdaho]

Hi ANontherun,

When you say favorable spot what do you mean by that?  Did you have any symptoms before the treatment?  I too have heard wonderful things about Dr Chang. I did send him my MRI and hearing/balance tests and he took my email questions.

Hi john1455.  What kind of symptoms did/do you have? How is your hearing? You said no change but not sure what it was before.

Have any of you had any issues working on computers/reading giving you headaches...I call it more of a "smarting" pain than a deep inside headache.  I work on computers for a living and still need to get two kids through college etc so I can't retire quite yet...bummer...

Bonnie