6 month MRI - post CK

[NE Farmwife]

I had my 6 month post CK MRI done on July 6th as well as the hearing test.  Even though I had my hearing test done at the same local facility, they performed two different types of tests for my hearing so it is hard to compare how much it had changed.  The first test was done in November and was not masked but the test that I just had done was masked meaning that they put static noises in the good ear which definitely made it harder to hear in the AN ear.  On the first test I had a 92% word recognition and on the second test I had 48% word recognition.  I wish they would have done them the same so that they were truly comparable.  I don't know what the SRT score means but it was 15 dB in November and 10 dB this month.  I don't know if that is good or bad.

I have been waiting to hear back from Dr. Chang from Stanford, where I had my treatment done, and I finally received a letter today. He seemed pleased with the MRI results and noted significant central necrosis with no surrounding edema.  The size of the AN is stable with what it was previously and he considered my hearing to be stable.
 
However, I had one concern that Dr, Chang did not address and I asked him about it in my letter to him.  The local radiologist noted in his report that there was mild senescent white matter disease that was probably greater than expected for a person of my age.  In doing a search on this site, I didn't come up with anything and searching the internet turned up several diseases pertaining to white matter disease from Alzheimer's to strokes.  Has anyone been told that they have white matter disease when they had their MRI read? 

I guess I feel very fortunate with my AN.  I met someone the other day that had survived colon cancer and was now battling brain and lung cancer.  My hearing is not the best.  I have tinnitus.  My facial numbness comes and goes or else I have gotten used to it.  Sometimes it is worse than others but it isn't painful, just annoying..  I don't seem to have balance problems.  My overall heath is very good and I feel very blessed.

[Jim Scott]

I'm not an audiologist and won't presume to interpret your test numbers with any degree of certainty.  However, I believe that normal hearing ranges between 10 to 20 dB.  There are multiple ranges and factors involved in hearing assessment but I think it's a safe guess that you've lost some hearing in your AN-affected ear.  That is as unfortunate as it is common for AN patients.  The good news is that it has stabilized.  I don't know much about senescent white matter disease except that it is often associated with the elderly and, as you noted, Alzheimer's Disease.  I would certainly inquire about this when you correspond with  Dr. Chang.  Other than that, congratulations on an encouraging MRI report.

I'm pleased to note your optimism and realization that you are blessed, despite the issues you have to cope with.  That is both sensible and helpful in dealing with any obstacles we face in life. 

Jim

[sgerrard]

My first comment is that if Dr. Chang, a neurosurgeon, looked at the MRI, and was unconcerned about the white matter, you should not be either. On my first MRI it was reported as "one or two focal areas of white matter hyperintensity involving the subcortical and deep white matter." The radiologists note this kind of stuff so that down the road, if something starts to change, they have a good reference. In your case, it means that someone reading your next MRI a year from now will see a white matter indication, then see that it was already observed previously, and if it hasn't changed, all is well.

SRT stands for speech recognition threshold, meaning the level of volume boost you need to recognize speech. I score around 60 db or so, meaning a hearing aid is in order for me. I think 10 or 15 db is pretty mild, and the difference between them is not significant either. Your speech recognition number of 48% is significant, though. It means you are not processing speech as well in your AN ear. You hear the sounds, but don't pick up all the details that are needed for distinguishing words.

So, as you said, your hearing is not the best. I agree that having the tests done differently makes it harder to know if that is a change or the same news. (I tried to explain to the audiologist that my tinnitus should serve as adequate masking, but they wouldn't buy that). At least it sounds like Dr. Chang thinks your hearing is stable.

Overall it is a good outcome, and it is good to hear the good news.

Steve

[NE Farmwife]

Thank you Steve and Jim for your clarifications on the white matter and hearing tests.   What a wonderful, supportive group of people on this forum!  I don't know what we would do without you!

[eab]

Thanks for posting your update - I'm only 4 weeks past GK and it's great to hear updates of things going well.  I am sorry to hear about your outstanding questions.  One would hope at this stage of the game if would be a little more clear cut.  If only!

Good luck!
Beth

[Tisha]

Kristie,

On your audiogram, what are your db's for each frequency?  That is how I also tell how my hearing is.  For instance, my AN ear, all my db's are 10-20 up to 4000 frequencey.  25 at 4,000, then it goes down to like 45 -55 for 6000 and 8000.  Those used to be 20 before CK, then I lost all that after my SHL.

Tisha

[ppearl214]

Hi NE Farm and congrats on 6 mos post CK.  Like many, I had temp hearing decrease approx 4-9 mos post CK... which, when controlled by a brief stint with steroids (for me), the temp hearing decline resolved itself and now my hearing is at the same level pre-CK.  CK team felt it was due to internal swelling of the AN, thus the steroids for me at that time.......So, I pass the wellness vibes to you.... and will continue to look for updates from you. They are most helpful to others that are researching treatment options, as you already know  

Hang in there... and stay well!
Phyl

[NE Farmwife]

I guess I really didn't know how to read the audiogram so that it would mean something to me.  Here is what mine says from what I can gather from your information.  In July my AN ear was at 30db for the 250 and 500 frequency, at 35db for 1000 and 2000 frequency and the next one was 55db at 3000 frequency, at 75db at 4000 and at 70db at 5000 frequency.  It said the SRT was 30 and the presentation level was 70 HZ.  I don't know what either of those are.  This one was also "masked" whereas the one done initially in November was not.  The one done in July was 30db at 250 and 500 frequency, 35 db at 1000 and 2000 frequency, 55db at 3000 frequency, 75db at 4000 frequency and 70db at 8000 frequency.  No one ever explained to me what any of it was.  I just know that my hearing is not very good and both the local ENT and Dr. Chang said that it was stable.  It said the SRT was 30 and the presentation level was 70hz with a masking level of 40.  Word recognition in November was 98% and was 48% in July with masking.  My good ear was tested with a presentation level of 55db in November and 50HL in July with 100% word recognition both times.

[Tisha]

Kristie,

Do you have those DB and frequency amounts pre-CK?  I'd being interested in you reading those to me.  There is such a thing called a "speech banana" that you can look up on the internet that will help you read your audiogram, that sort of shows you where normal hearing is for conversational speech.  Perfect, to near perfect hearing is at 1-20db.   I would think that the 30-35 db up to your 2000 frequency isn't too bad, but the big drop at 55-75 is slight to moderate hearing loss.  I know this as I wear a hearing aid in my non-AN ear, so have studied and watched my audiograms for almost 2 years now.  I think you are a candidate for a hearing aid.  If Dr. Chang says your hearing is "stable", then that leads to me believe that these were your hearing stats pre-CK, that's why I'm interested in seeing that.  However, if I recall I don't think you had any hearing issues before, did you?

Tisha