Any similar post-GK side-effects?

[Petrone]

Hi All,

I had shared with you that I had GK 10 weeks ago (tomorrow) for my 1.8 cm left side AN.  Anyway, for the first 7-8 weeks, I had zero side-effects, but about 2-3 weeks ago I began noticing a fairly sharp decline in my AN side hearing (I'm guessing down to 30-40% from the 50-60% range on my last audio exam in October 2012). Also, more head-fullness, and more tinnitus the past few weeks. I've also been feeling more off-balance and wonky whenever I'm walking or jogging (nothing while seated/driving/sleeping [not at the same time, of course. ]).

I'm trying to be optimistic that these effects might be signs that the radiation is doing what it's supposed to be doing (perhaps, a bit sooner than expected) and the pressure (compression) on my hearing and balance nerves is causing these various side-effects. I called my MD to ask about getting a hearing-aid to help me with word recognition around the office, etc., but they want to wait - presumably because my hearing could get worse, before it gets any better. 

I realize that we all respond differently to these procedures, but I am wondering if anyone has had similar experiences after GK or CK at the 8-10 week mark, or later?  Was there improvement after the initial set-back?  Any thoughts are appreciated. 

Best regards,
Petrone


   

[dtorres135]

This is the first day so I don't have any input but will keep you posted if I do.  Keep us posted on your symptons

[Petrone]

Thanks DT, 

It's nothing I can't handle, but I shared these experiences in the interest of the raising awareness about possible post-GK side-effects. We all respond differently to these procedures and you may not experience anything like what I have described above.  But, if you do, don't be alarmed. It's all part of the healing process. 

My best, Petrone

[robinb]

Hi Petrone-

My post has details on my spasms; but I also get dizzy with elevated heart rate; consult your GK doc, as they may want to prescribe something. Since my facial spasms started, I have a weekly call with the PA in my doc's office to review my symptoms and how the last week went.

[dtorres135]

its day three after GK and I could only report I have headaches and still sore.  I was expecting headaches the prescription helps for now. I will continue to post. 

[Nannybee]

My SRS treatment was about 8 weeks ago and the tinnitus is louder, hearing in the AN ear down and I am so fatigued and having issues with short term memory and balance. I am getting hearing aids next week, the audiologist recommends Phonak which has the capability to do CROS if it becomes necessary.
Because I work as a medical professional, I will be taking a medical leave for the next few months to hopefully work on these issues.
Good luck to you!

[robinb]

Hi Petrone-

I think my hearing had diminished on the AN side too; the tinnitus changes, sometimes more noticeable. Dr. Lunsford wants me to go back to ENT for audio test before I get the MRI, hearing was down to 40% prior to GK, so not expecting much. To me, if I cant hear with ear buds or the phone in that ear, its not useable. But it is what it is, I just don't dwell on what I cant do.

[Petrone]

Question for anyone who has complete SSD,

Does tinnitus continue when you lose ALL hearing on your AN side?  (Maybe this is a bit like the age old question: if a tree falls in the forest, but there's no one there to hear it, does it make a sound?  )  My AN side hearing dropped after GK from about 50-60% down to 10-20%, but my tinnitus on that side is now that much louder.  Since my AN side hearing is all-but-useless now, I'm wondering if the consolation of eventually going all the way down to 0% hearing on that side will be relief from the tinnitus? 

Thanks,
Petrone   

[terisandler]

Unfortunately, I have been told by my doctors that the tinnitus does not go away. 

[Jim Scott]

Question for anyone who has complete SSD,

Does tinnitus continue when you lose ALL hearing on your AN side?  (Maybe this is a bit like the age old question: if a tree falls in the forest, but there's no one there to hear it, does it make a sound?  )  My AN side hearing dropped after GK from about 50-60% down to 10-20%, but my tinnitus on that side is now that much louder.  Since my AN side hearing is all-but-useless now, I'm wondering if the consolation of eventually going all the way down to 0% hearing on that side will be relief from the tinnitus?

Hi, Petrone ~

Unfortunately, no.  Tinnitus (I think of it as static) is not directly related to hearing ability.  Many people with diminished hearing suffer from some level of tinnitus.  The precise origin of tinnitus is somewhat complicated (associated with the way the brain processes sound - or the lack of it).  I regret to be the bearer of bad news but to the best of my knowledge there is no real 'cure'.  If anyone discovers a cure, let me know because I'm SSD and also suffer with (a mild case of) tinnitus.

Jim 

[mesafinn]

Alas, as Jim notes, tinnitus is not related to the hearing but rather the brain.  Because something's going on in the AN ear, the brain is wondering where the former sounds are--so it sends its out (the tinnitus) to communicate with.  Once it's triggered, it's hard to turn it "off."  Allegedly, the brain could decide it doesn't need to send out the signal (the tinnitus) any more and just stop it but it gets to decide that on its own.   

Hang in there.  White noise can help at night!

[Nannybee]

My audiologist just programmed in tinnitus masking (white noise) into my hearing aids and I'm giving it a try for a few weeks. It may be a placebo effect, but I do think it helps a tiny bit. I can still hear the constant high pitched tinnitus, but I think the white noise is distracting my brain. The Phonak Audeo-Q has the capability for multiple programs so she did masking with hearing aid, and just masking (for at night). I'm still in my trial period, so will have her play around with any options that might help with the infernal, maddening ringing!

[nftwoed]

Hi;
   Thought to mention I agree with what you say, but, some of tinnitus originates in the cochlea if the auditory nerve is still intact. This is because the cochlea, fluid and ciliary hair is still functioning. That's how/why Auds measure sound impulse of Ota Acoustic Emissions.

Alas, as Jim notes, tinnitus is not related to the hearing but rather the brain.  Because something's going on in the AN ear, the brain is wondering where the former sounds are--so it sends its out (the tinnitus) to communicate with.  Once it's triggered, it's hard to turn it "off."  Allegedly, the brain could decide it doesn't need to send out the signal (the tinnitus) any more and just stop it but it gets to decide that on its own.   

Hang in there.  White noise can help at night!

[Petrone]

Hi all,

I almost hesitate to post good news because I don't want to jinx myself, but after about 2 months of very bad post-GK side effects (stabbing headaches, nearly constant dizziness, shrieking/squealing tinnitus, daily facial twinges/tremors), I've been feeling much better the last 3-4 days. I know 3-4 days is not a long time to measure progress, but it feels almost like I've come through something.

Then, this afternoon I felt a deep, dull ache behind my ear for a minute or two, and then I felt a sensation deep inside my AN side ear canal, almost like something "popped." I had noticed less dizziness the last couple of days, but after that "pop" I felt almost no dizziness at all for the first time in about two months. That clearer feeling overall has continued into this evening. I went for a jog tonight and that brought back a little dizziness and also amped up the tinnitus, but all of my post-GK symptoms seem to get temporarily worse whenever I exert myself physically.

I hope this "popping" feeling I experienced today and this sudden feeling of clarity are signs of better things to come.   

Petrone

   

[dtorres135]

Its two months after GK and I'm feeling better.  At times I get very fatigued but I'm fighting through it.  Back at work and back at the gym.  I already set up my 6 month MRI and follow up and hope for good news.  Doing research and asking questions really helped shaped my decision in the procedure and I think I made the best one for me.  I'll keep posting.

Dian