Does tinnitus and balance issues go away after radiotherapy?

[luckyone]

Just wondering if after GK or CK, folks have seen tinnitus and balance issues go away after 6 months, 1 year, 2 years?  Just looking for some hope as it's only been a few weeks and it's driving me crazy.  Even driving is difficult, especially when backing out of a parking spot.  Thank you in advanced.

[PaulW]

I guess I can only talk about my own personal experience, and I too would like to hear what others have experienced.
In the first few months after CK I had increased tinnitus and balance problems.
Driving was possible, but I found myself reluctant to check mirrors as much. The days of rapidly weaving between lanes and pretending to be chased by the Californian Highway Patrol were over!  My potential to be an idiot on the road was lost!
Moving my head from side to side rapidly would make me a little giddy and would be a little disorientating.
So I tended to avoid those rapid head movements...and checking my mirrors...
Driving at night on roads with no street lighting I also found a little unpleasant.
I also became tired more easily while driving.

Tinnitus
I had constant mild tinnitus before treatment and about 1-3 weeks after CK it reached its peak for me.
At times it was very loud, rock concert loud. Fortunately the ridiculously loud tinnitus was normally only for a few hours, and it would subside to just annoying. About 5 months after CK my tinnitus was back to pre treatment levels.
Now its gone 90% of the time, and very mild 10% of the time.
It doesn't bother me at all at the moment.

Balance.
Walking on uneven sloping ground in the dark was definitely not my forte after CK
I remember going to a Bonfire in a creek bed.. Lucky I didn't fall into the damn thing..
I had one beer, I stumbled everywhere, and the next day lots of people commented on how well I looked, and how did I avoid the massive hangover, considering how "drunk" they thought I was.. Of course when I told them I only had one beer they didn't believe me.  OK it was one beer and a brain tumour... But it took them a while to buy that story too.

My balance has improved incredibly since those early days.
Bike riding, Kayaking, Snow Skiing, standing on stools to change light bulbs.
I tried to do all of those things within 6 months... None of it was particularly pleasant or intelligent!
I can do all of those things now, and they are once again pleasurable, and standing on a stool to change a light bulb is no longer a death defying stunt.
 
Balance and tinnitus have both improved incredibly.
I feel that my Tinnitus is currently better than pretreatment.
Balance not quite back to pre-treatment levels but very close.
Neither balance or tinnitus bother me at all anymore.

I am 20 months post CK I feel great right now, and I continue to notice improvements.

Hang in there. If your experience is anything like mine you will feel much better as time progresses.

[mindyandy]

I never had much tinnitus before or after CK or surgery. I have always had short bouts of it for less than a minute then gone. As for balance...well I never had good balance. Dark is worst. Its not fall over bad but just noticable. I thought my balance sucked after CK but surgery proved that my balance was not that bad. Now that I am a little over 2 weeks post op my balance is getting better. My dizziness is getting better. I cannot say that I don't get dizzy if I move my head fast. CK for me did not improve my balance nor did it make it worst. I never got dizzy from CK. I did feel trigeminal nerve sensations such as numbness at the beginning and pain almost 4 years later. My AN was touching my trigeminal nerve. I have reason to believe it had been touching before CK was done too. Just from my sx then to now make sense.

Mindy

[Ned]

9 years post radiation, balance fluctuates from some to severe, tinnitus constantly but it fluctuates greatly.  However, everyone's trip is different, I hope your's is uneventful.

[luckyone]

Thank you all for the comments... 
PaulW, I used to drive carefully, but not necessarily slow.  Checked my rearview mirrors and side mirrors constantly, every 5 seconds.  Drive a stick, people always commenting how smooth my shifting was and what a good driver I was.  Now, I feel like an old person (I am currently 42) as I drive slower than Driving Miss Daisy.  My life really feels like it's turned for the worse.  I tried to walk to the park about 200 yards away, to take my 7mo old daughter to the swings and that was a saga in itself.  I know that I should not complain, that it could have been a lot worse, this could have been malignant (well, in theory since they haven't done a biopsy, it could be), but this situation really sucks.  I feel like I am letting my wife and daughter down, that I won't be able to travel like we had planned, go camping, even go for a walk around the block.  At work, I already see a difference in the way management treats me.. they are giving me the runaround asking me to hire someone that has my skills.  It's already bad enough and they want me to hire my own replacement?  I am really praying to God (I have become very religious all of the sudden) that he can forgive me for whatever sin I've committed to deserve this (trust me, I am about as straight edge as it gets, never even trying a cigarette or illegal drugs in my life).  Ok, enough venting.  I hope that my GK goes well next month, and I am one of the lucky ones this time.  I just want to live 22 more years and see my daughter graduate college. 
Thank you all again for your comments and well wishes.

[Ned]

Recently, I have discovered the faster I walk the less balance issues, until I stop, then it comes back, but it is weird that walking fast helps.  IMO, God didn't punish you for some sin by sending you an AN.  Please read the book, a Bend in the Road, by David Jerimiah and C S Lewis, Mere Christianity, both helped increase my faith and hope.

[windy]

In regard to your question Luckyone, I personally developed tinnitus on a constant basis after GK. I do not even remember having it prior to treatment and certainly it was not constant, at all. My tinnitus seemed to become much more severe when I lost about 50% of my hearing suddenly, two years post GK treatment. It then became constant. When I first lost half of my hearing recognition and was trying to adjust to the tinnitus at the same time, it was so loud I was surprised others could not hear it....HA! Of course, others could not hear it, but it was just that loud. I now tune it out for the most part. I don't know if I just adapted to it or it is not quite as loud. It is possibly a combination of both. It definitely fluctuates as far as severity. As far as my balance, I had never had a really noticeable problem with balance, either before GK or after.

I wish you improvement on both your issues. Hopefully, there will be some adaption from your body on both accounts. Take care!

[MDemisay]

Dear Luckyone,

I commiserate with you as I am a father as well but had my AN subtotally debulked in November of 2004 at age 47. I am 55 now and am dealing with issues of a reemergence of a thing that I thought I had concurred! My daughter was 14 then, I missed (because of severe depression) 2 years of her formative life.

All I can recommend is be present for your daughter in her life right now, recognize that God has given you a gift that of being more able to spend quality time with your loved ones and being there for them in the present.

My daughter is about to graduate from college this spring, I want to see that and will.

I don't talk about this often, but we all have brain tumors, mistakenly I went on to a brain tumor website and stayed there, theirs is a site that is full of sad stories that deal with metastic tumors, ours happily is nonspreading!

The take away piece of advice that comes from this mistake is "Live your life! Each moment is sweet! Don't be concerned with consumerism! Life is too precious!"


Take care! There are people here that will be praying for you (myself included).

 You are in good company! Come here often and vent!

Mike

[windy]

Luckyone, I think Mike and others have given some really good advice. We all have an AN (or have a loved one) here or we wouldn't be on this forum. This is a great place to share your feelings about your tumor and all things related to the issue. Like Mike said, you can come here often and vent all you want!! I don't think many would understand better than those in similar situations. Our symptoms may vary some, but we all have, or have had, the same tumor. Also, although we do have tumors, they are not malignant. For that, we can be extremely grateful. That is not to say a benign brain tumor is not significant or stressful, because we know otherwise. But, it could be worse.

I sincerely hope your treatment goes very well and things show improvement for you! I think once you have your treatment in April, you will feel a sense of relief.

Luckyone, remember to come here when you feel the need to talk. Someone is always willing to listen! Wishing you some really good days ahead......

 

[luckyone]

Thank you again everyone... reading the messages really help me out, I will forever be thankful to you all.  MDemisay, I am sorry to hear that the tumor grew back.  That's actually another one of my fears... that it grows back and malignant.  Yes, I know I should not be negative but it's difficult not to be given all the complications and life changing events I've experienced in the last two weeks.  I have constant ringing in my ear, balance issues affecting my walking and driving, headaches and migranes, loss of hearing, stress.  But I do take your comments to heart and will look at it on a positive note, especially the fact that things could have been a lot worse.  I've noticed my wife's attitude towards me changing as well, and not in a positive way.  I would never think that she would cause more stress on me than what I am going through but I guess I did not know her well.  She seems to be throwing everything in the book at me, like this morning, saying that she feels her life right now is not going in the right direction, that she's not feeling happy.  Nice timing right?  Anyway, let's see where this all goes, but I just want to not have additional stress.. just want to live a happy life, or whatever is left of it.  Seriously, Murphy's law is in full effect right now.

[Ned]

Yes, the clouds are dark and stormy, but a brighter day will come.  I promise you it will get better, you will learn to adapt. Your complications will diminish, hang in there.

[Larry]

My understanding is that tinnitus has a direct relationship with the amount of hearing loss. That is, the more hearing loss, the louder the tinnitus.

As i originally had surgery before radiation treatment, I lost my hearing and hence have to put up with the tinnitus.

Balance issues can usually be significanltly improved with regular exercise


Laz

[Tumbleweed]

Luckyone:

My experience post-CyberKnife (CK) treatments is much like PaulW's: since treatment, my balance has improved about 80% and my tinnitus is about 90% lower in volume (on most days, not always). Statistically, it is rare that tinnitus improves after radiotherapy; Paul and I got lucky. Dr. Steven Chang (esteemed CK specialist and neurosurgeon at Stanford Univ Medical Center) told me that about 25% of CK patients see an improvement in their balance at some point after treatment (it might take several months before that happens). My energy level has rebounded pretty dramatically, too, since treatment.

The reason why Ned's balance improves with faster walking, I believe, is because it stimulates his balance system more. The more active you are, the more your brain compensates for imbalance caused by your damaged vestibular system.

As others have said, you will come to grips with this brain tumor soon. Two weeks after I was diagnosed, I was still a train wreck; I literally thought my life was over. Now, life is great. It takes time, but you'll get there, too.

While it's a bummer -- and unfair -- that your wife is being so needy and, dare I say it, disloyal right now when you need her support the most, that will also work itself out in the long run. There are many positive lessons that come along with the misery of having an AN. One of those lessons is it tests your closest relationships. You find out who your real friends are. The best relationships grow stronger, and the weak ones become obvious. What you do about it is up to you, of course, but it's all part of your journey toward living a happier life. Please forgive me if that sounds really patronizing. But I think a year or two from now you'll see the positive side of all this and where it has led you to. That won't change the fact that having an AN is not what you would have chosen, and it will still suck. But the proverbial lemonade is being made right now from the lemons you've been handed.

You will feel better soon, I promise.

Best wishes,
TW

[luckyone]

Thanks Ned, Larry and Tumbleweed... great comments.  I am getting stronger as each day goes by to confront this head on.  Looking forward to GK and I will accept what comes after.  I will keep you all posted of my progress   Thanks again!

[Tisha]

Lucky,

I also was a basketcase for about 2 weeks after I found out about my AN.  I started having mild anxiety problems and slipping into a depression.  I cried all the time and couldn't eat.  I was so scared.  The weekend after I find out I also believe I started suffering from psychosomatic symptoms.  My hearing became distorted all of a sudden, hypercussus, it was very strange and it frightened me even more.   Those super intense symptoms never came back and I feel that is was my anxiety/stress level those first 2 weeks.

I went to church and prayed.  Many of us here have gone thru the feelings that this is a tragedy, and the "why me" stage.  I prayed for strength and for my "normal" feelings to be given back to me so I could research and deal with this.  It was given almost immediately.  i was so thankful to have "me" back, and felt I could proceed in finding the answer.  Although my DH was supportive, it wasn't until I really told him the depth of my despair (that is how I felt), my terrible fright of having my face paralyed and not be attractive.  I don't think unless you go thru it, you can truly understand it.  That is what this forum is for.   You didn't do anything bad to have an AN.  We are imperfect..imperfect souls, imperfect people, imperfect bodies.  They break down and die.  The cells on you balancing nerve just grew to fast and formed a tumor.  Just keeping thinking how lucky we are to be living now...50+ years ago it would have been a death sentence.

To answer your questions.  I didn't have tinnitus until after my CK.  It doesn't bother me and I hardly notice it.  It's a soft static.  My balancing problems didn't start until about a year after CK, and it just now started to get much better (3 yrs).  It's really different for all of us.  Hang in there.  You will need to find something to help.  Valium (5mg) helps me alot.

Good luck with everything! Tisha