4 days post GK and tinitus

[Walter M]

Hi all,

Last thursday (Feb 22nd) I received my one shot (linac) treatment. Everything went relatively fine. Though the invasive headframe was a bit uncomfortable the treatment itself was painless and very straightforward.

The doctors put me on Dexamethason (steriods) for 3 days, and I felt quite well the day after treatment. However Since I stopped taking the drugs, The tinitus came on strong and really feel unbalanced in my hearing. There is a high pitch sound in my affected AN ear and it really disturbs me.

Now of course I worry that the tinitus will stay with me. I'm wondering whether I should continue the steriods to suppress the swelling and hopefully suppress the tinitus.. Of course I'll ask the docs, but I thought some input from you guys up here would not be a bad idea either ...

Thanks,

Walter,

[kbh1950]

I think tinitus is like floaters in our eyes.  If we look close we see them, but if we look at the whole picture they fade in the background.  Tinitus was there before my AN surgery and it is still there today.  If I think about it I hear it, but if I get busy it seems to just be in the background.  Hope things improve for you.

[Walter M]

Fortunately the tinnitus seems to be a bit milder today... However now my hearing seems to be almost gone (Had only a little left anyways). It seems you can't have both can't you ??

[kat]

Hi Walter

Since it is only a few days since your GK it might be too early to assume that any of your new symptoms will be permanent . I remember just feeling a bit like jet lagged for about four days or so but my hearing or tinnitus did not change at all . Our An are as different as we are and a lot depends on their exact location . In my case the tumour did not swell at all but is showing signs of
shrinking now 21 months after GK .

Best regards Kat

[ppearl214]

Walter,

I had enhanced tinnitus immediately post Cyberknife, but it eased after a month or so... I think the initial shock of the beam hitting the growth, while sitting on the hearing nerve, may throw it out of whack (just my thought).  Have patience and give it a little time... hoping it eases for you soon.

Phyl

[Walter M]

Thanks all...

The tinnitus really is fluctuating... Sometimes worse and sometimes like pre-radiation. I can live with it for now. My hearing however does seem to be seriously affected. I silently hoped that it would be on the same level before treatment or even a little better, but I think that idea goes out of the window.

Anyways, Just 6 days post-op now, off drugs for 4 days and feeling better every day. I'm taking enough rest and go to bed at noon for about one or two hours. Essentially that did not change (I already was tired before treatment). Fortunately I work from home and have flexible hours so that is not a big deal for me.

One question though... I know there was an article about radiation and fatique, and that you can get it through memebership... How do become a member and how do I get the article ?

Thanks...

[ppearl214]

HI Walter,

It has been determined that fatigue affects many with any kind of brain tumor (benign or malignant).  If you follow the link below to a past thread here on the boards, stein78 does a post (2nd post on thread) with a link to a brain tumor and fatigue pamphlet that I picked up at Brigham and Woman's Brain Tumor clinic.  Since it's a .pdf file, you will need Adobe Acrobat/Reader on your computer to open it.

http://anausa.org/forum/index.php?topic=1969.0

I hope this helps with some questions..... it does cover all forms of brain tumor treatments and how fatigue affects us all.

Hang in there! Glad to hear the tinnitus has been easing a bit.

Phyl

[Walter M]

Thanks for that... I hope it will help explaning the insurance.

[pearchica]

HI Walter- I've been really lucky, my tintinitus  is a low humm.. It does get worse at night, or if I have been in the car all day. ( I HATE SPELLING THIS WORD and am at the point I refuse to spell it correctly)!  Hopefully your's will diminish over time or be a dull roar like mine is. The high pitch types are a real pain to deal with.  I'm going to Las Vegas with my girlfriends and will see shows, but plan on wearing hearing plugs. If some one give me grief I'm looking foward to explaining in detail that I am part of an elite group of intercranial tumors and for their rude behavior they need to my me and my posse a round of drinks!  (I'm one of the goofy posties...) however, I find humor is the best medicine for me.  Good luck and keep us updated on your progress- BTW - check out Brucifer and his postings, I think he's going to do LINAC like you.. take care, Annie

[linnilue]

I hate to say this but I am 2 years post linac and I have tinnitus every day.  However, I am used to it now and really only notice it when it varies in volume or tone.  I also lost my acoustic reflex so noise is quite bothersome and I actually wear a muscian's earpiece to block loud noise from my left ear.  The other thing is that I lsot almost all of my hearing 4 months post linac suddenly one night. 

[Walter M]

I hate to say this but I am 2 years post linac and I have tinnitus every day.  However, I am used to it now and really only notice it when it varies in volume or tone.  I also lost my acoustic reflex so noise is quite bothersome and I actually wear a muscian's earpiece to block loud noise from my left ear.  The other thing is that I lsot almost all of my hearing 4 months post linac suddenly one night. 

What do you mean with acoustic reflex ?? Anyways, today some 17 days post op... The tinitus is still there, but managable... My hearing seems to be more or less like post op (some 15% left).  I'm really doing as well as before treatment, iow, so far I'm doing ok.

I wonder whether I should have pushed for CK rather than one shot linac, or should have done GK. But I guess as long as other symptoms stay away it does not matter much. But I'm glad I choose for radiation rather than surgery.

[ppearl214]

Walter, IMO, we should never question our choice of treatment.... we made the best educated decision that we could at the time of treatment and hope that it works out for each of us... this is what others shared with me during my decision process. We went with our gut and pray that it works. 

I know, in my case, the tinnitus was really enhanced for the first month or so post-CK... now, 11 mos later, it's very intermittent and extremely tolerable. I know, for me, there are situations that set it off (ie: being overtired, loud areas such as restaurants and busy stores, the loud engine of a motorcycle like a Harley, etc). My  hope is that your's continues to subside soon.

Hang in there!
Phyl

[linnilue]

The acoustic reflex is what helps us to regulate sound.  When I lost my acoustic reflex which was 5 months post linac I could no longer tolerate any loud nosie  i.e. many people talking, paper tearing, aluminum foil, etc.  I now use a musician's earpiece to help cut out the nosie and it helps.  I am basically deaf in my left ear but still have problem with loud noise.  By the way there was a new study published in August which shows that GK is much more precise than linac.   

[Walter M]

Hi Nikynu, Phyl

Thanks for the explanation. Yeah. I did read some as well, though I though that it was more evident in smaller tumors. In larger tumors (mine was 2.2 x 2.1 x 1.8cm) the Linac had some advantage as the radiation was more evenly spread (as was explained to me). My neurosurgeon had expressed to me that linac was as accurate as GK in this respect.

To me, only the result counts, and my neurosurgeon had some pretty good statistics so I had not much to doubt. Since I'm living in the netherlands (yeah, I'm dutch, and no I'm not making a living in growing tullips and putting my finger into the dikes and walk on wooden shoes all day), and though we have all possible treatment options available I had the feeling I should no longer wait and just go for it as I was worried about increasing symptoms (I did lose my servicable hearing in a matter of months and developped some dizziness and did not want to risk facial twitching or the like), I was not feeling I could risk another three months of getting to another doctor and waiting for treatment.

When I expressed my concerns to my neurosurgeon, he booked me in for treatment within 4 weeks after initial consultation. So far I'm pretty satiesfied. No real changes compared to pre treatment. The fatique the same, the hearing the same and the balance the same, only the tinitus seems to be more fluctuating. Time will tell though. It is too soon to draw any conclusions.

walter,

[linnilue]

Hi Walter,  I'm just wondering how you are doing.  How's the tinnitus and the rest of your recovery going?  as I write this I can hear my ear humming to me...as usual.  I will be honest with you once more, I really have gotten so used to it that I almost don't notice it msot of the time.  But one thing is for sure, weather changes, loud places and stress do effect its' volume.  Keep in touch.  Also, do get the musician's earpiece, it helps.