Could use some advice on sudden hearing loss post treatment......

[windy]

Hi,

I am one year and four months post GK treatment.  I woke up last Thursday and had a very sudden change in hearing.  I woke up with fullness, tinnitus, and definite loss of word recognition.  I went to the ENT doctor this week.  Apparently, I have suddenly lost 50% of my hearing since my last visit.  My hearing test have all showed 100% word recognition until my last test that apparently showed a 50% loss.  

The ENT doctor said the sudden loss was not good and indicated inflammation or swelling of the tumor.  He thought my tumor might be back.  That is not the way radiation works is it?  Can't the tumor swell and cause hearing loss without the "tumor returning"?  He thought I needed a MRI ASAP.  He called my neurosurgeon who said he thought it was late radiation toxicity from my immune problems.  He said he was afraid that would happen.  I think both doctors are good, but I don't know if they see a lot of patients with AN problems.  Does either doctor sound on target about the hearing loss at over a year out?  Does it have to be a tumor returning or late radiation toxicity?  I was sent for a MRI the next day, but have not heard back yet.

Also, the ENT physician wanted me to start on 120mg of prednisone for three days and taper down for about two weeks.  The 6 day Medrol Dosepak is what I have taken post treatment for other symptoms and it usually helps my symptoms well.  It was also what I was given in case I lost hearing from my GK treatment center.  I have struggled with symptoms from the Dosepak and did not want to take even larger doses of steriods.  I asked for the Dosepak and the ENT said he did not have a problem giving me that instead.  Do you think the Dosepak will be enough to restore my hearing loss since he really wanted me to take a much larger dosage?  What is the norm for hearing loss?  Also, he said time is of the essence when you try to revive the hearing.  Do you think a week and a half is too long to have gone with loss?  

Sorry to ask so many questions.  I hope someone can advise me.  Thanks in advance!    

[Jim Scott]

Hi, Windy ~

I'm terribly sorry to learn about this sudden hearing loss you've experienced.  Unfortunately, I have heard of this occurring post-radiation, although it is more often a gradual loss of hearing.  However, I'm not a physician and cannot credibly offer any medical advise as to what, exactly, caused this to happen.  The steroids should help but you shouldn't need a heavy 'dose'.  An MRI is likely prudent, if only for your peace of mind that the AN hasn't suddenly re-grown, which in  my (non-physicians) opinion, is highly unlikely.  Still, anything is possible so the MRI is definitely a good idea at this point.    I leave others more knowledgeable than I to offer you further commentary and possibly some advice.  Meanwhile, I hope and will pray that this issue can be quickly resolved with no further loss of hearing.

Jim

[mk]

Wow, 120 mgs of prednisone  and I thought that my 60 mgs was a heavy dose.
Windy, I am sorry that you are experiencing sudden hearing loss - but as you already mentioned this is usually reversible. I experienced sudden hearing loss twice, once before treatment and the second time 6 months post-GK. Both times I took 60 mgs of prednisone for one week, and then a tapering dose. I was fortunate that prednisone did not have very serious side effects (other than the classic difficulties in sleeping etc.) and it certainly did its job. My hearing was back fully within one week.
The second hearing loss coincided with my 6 month MRI, but the MRI didn't show anything that would explain it. Hearing loss may be caused by reduced blood flow to the nerve due to the AN - this is something that is not visible on the MRI.
Good luck and keep us posted, I hope this will resolve soon.

Marianna

[sgerrard]

I guess both explanations are possible, it could be growing back, but it is more likely that it is late swelling. I have certainly heard about swelling effects right through the second year. Whichever steroid you take, hopefully it will check the swelling and bring back the hearing. Fingers crossed.

Steve

[Tumbleweed]

Windy, as Steve mentioned, swelling can occur for 2 years (even longer) after radiosurgery. Dr. Steven Chang (esteemed Stanford-based neurosurgeon and CK practitioner) says the period of greatest vulnerability to tumor-swelling is between 6 and 18 months after treatment; you are within that time range.

It is far more likely that your hearing loss is due to your tumor swelling than it is to recurrence/regrowth. An MRI might not show the swelling, which can be internal (called "clinical swelling"). But given the dramatic onset of your rather severe hearing-related symptoms, I think an MRI is probably warranted (if for no other reason than to put your mind at ease).

Your doctors are correct that time is of the essence. I'd hop on a steroid regimen ASAP. I can't advise you on the dose; I just don't know what's best.

You can also try taking fairly large doses of vitamin E (1200 IU) daily for a week or two. Clinical research exists that validates vitamin E for sometimes regaining hearing after sudden sensorineural hearing loss, although its success rate is thin.

I hope your hearing returns!

Best wishes,
TW

[windy]

I greatly appreciate all of your input!  Thank you for all of your replies.  It is good to hear from those with AN experience and knowledge.

I started the DosePak this week-end.  I am mad at myself for not handling the situation more quickly than I did.  When I woke up on the Thursday of the prior week, I felt like I had a lot of congestion.  I initially thought I was getting sick.  By Friday evening, I thought it must be the tumor.  I made an appt. the following Monday and saw the doctor on Wednesday of last week.  The MRI was on Thursday.  The steroids were not started until Sunday due to some stomach problems.  I just hope the 10 day stretch was not too long to have waited.

I lost hearing one other time two months after I had radiation.  I started the DosePak the next day.  My hearing came back to 100% word recognition.  I could not have been more pleased.  When I went to my ENT he said I should have seen him first before taking treatment.  I think I was coming from the premise that I should see him before taking any steroid, thus waiting until the next week.  If the hearing does not return, I will wonder if I could have prevented the loss by acting sooner.  The ENT said usually a month is too late.  He said I was still within the time frame, but I read something on the Internet this week-end that you have a 24 - 48 hour window.  I don't know if that is correct or not. 

Anyway, I will know sometime in the future.  I am not scheduled for a hearing test until February now.  I guess I will not know for a while.

 

[Tisha]

Wendy,

I will be keeping my fingers crossed for you that these steroids do the trick.  I do know that some steroids are more for "brain tumor" swelling than other steroids.   You'll be in my thoughts....Tisha

[Anomar11]

Hi Windy,

I'd also be willing to venture a guess that it's swelling.  Hope all goes well.  I'm now one year out and showing about 2 mm swelling in a couple of directions.  Take care. 

Mona

[HeadCase2]

Hello Windy,
  AS others have mentioned, post radiosurgery treament swelling can vary by individual.  Here's a link to an earlier post that has some graphs related to post GK AN tumor swelling, http://anausa.org/forum/index.php?topic=6493.msg63049#msg63049    Since you're 1 year and 4 months out from GK treatment, you could be still in the swelling phase, but that will hopefully begin to turn around and you'll be seeing AN shrinkage.
Regards,
  Rob