trip to audiologist... 6 months after ck

[carter]

i had ck in Jan 2009. 

lately, i have had more trouble understanding the wife and or TV.  i caled audiologist that helped to find the AN.  she no longer will service my brand of hearing aid --oticon.

called to dr's office that sold it and they referred me to a practice that had split from their's.... the take insurance for testing ...  co pay was almost half of their fees. 

today i arrived and file dout the forms   ... and waited.  then i met Dr Fry.  she was pleasant.   she did word recognition.  gosh, i was shocked at how little that i could even faintly recognize... i listened for the beeps later.

she sat me down and told me that while i have lost some hearing.....  i am now have word recgnition of 20% in the left ear.  it was measured at 80% last fall.  and simular scores for the past years.


her suggestion is to stop wearing the  aid....  she can amplify teh sound, but my brain is handling the signal??   she admitted to knowing 0 about CK.....  she said that she will read about it.   

she suggested to program teh aid to help teh right ear... to use a disposable ear piece to see if i like it.   she programmed the aid to use on the right with a seperate program to switch back to the left.

drove home and told the wife  .....  i am not ready for....

i m trying to decide -- call neuro dr?  swelling              or call ent that i actuallly respect???


anotehr turn@~%!^$&$

[Vivian B.]

Hi Carter,

Sorry you are having these issues. Don't you need to follow up with the people that did the CK anyway? you may want to give them a call. I was under the impression that the MRIs continue after treatment and this can determine if any swelling which from what I see on the forum sometimes occurs and you may be able to get medication for it. I think it's just all part of the recovery process and possibly losing more hearing after treatment. I don't think it's anything serious but I would check it out.

Vivian

[Keeping Up]

I won't be able to help much - especially as post treatment CK.  I agree with Vivian - at least talk to the CK team and see if they recommend a follow-up MRI, steroids etc to potentially reverse some of the loss.  I am not sure if steroids help with word recognition scores or not.

It sounds from your post that while you have lost some hearing ability (i.e. the beeps - or pure tone average) the real issue is the loss in word recognition. 

I can only relate situations to my position as I am very new to this AN scene and have no medical training - just an immense curiousity.

As background (this isn't about me - I promise), I had a hearing test today and absorbing the results - but it is somewhat similar to your situation (but much more mild).  While my PTA average has barely changed (25db on the AN side) the word recognition score (at 50db if anyone is as curious about this stuff as me), I only recognize about 76% of the words.  This is much much much lower (statistically significant) than it was 2 months ago. 

As the audiologist and ENT explained, loss of word recognition is very common with ANs.  In my case, it is the result of two issues - one the AN is damaging the hearing nerve (which equates to both hearing loss as well as lower word recognition scores), the damage is permanent and irreversible and will continue and second the other side is taking over (the use it or lose philosophy).

The hearing aid which it seems you got for the AN ear can only amplify sound - it cannot make a fuzzy word sound clearer.  So, regardless how well tuned your hearing aid may be - you will hear the noise of the word, but may not have a darn clue what is being said.  In my situation, it may as well be the television is on in a foreign language - I can hear the noise, I just can't distinguish the words all the time.  The louder you tune the hearing aid - the more noise you will hear, but won't help to discern the actually word.

Thus, at 20% word discrimination, it may make sense (according to your audiologist) to switch the hearing aid to your other ear.  I will gander you must have a hearing loss on the right side as well. 

Your situation is different than mine - the audiologist suggest I am very early borderline, wouldn't recommend it, but still an available decision to get a hearing aid - not because amplifying sound will help with my word recognition, but will help to keep the left ear busy and potentially slow the decline in both hearing and word discrimination (back to use it or lose it).  For the record, I will wait for the next hearing test (6 months) to see if this was a true result or if the scores continue to decline - then re-evaluate.

So, one very long description that may not be worth much.  I am sorry you are struggling so much with your hearing.  I would push to get back to the CK clinic to hear their perspective - as they may have a few suggestions.  I may also contemplate a different audiologist as this decline, according to the audiologist team at my hospital and my ENT, is very common with ANs - you may need a different type of support to help with the various options.

Good luck and again, sorry for the long message.

Ann

[ppearl214]

carter,

will see if I can help.

You are approx 6 mos post-CK, where there may be enhanced hearing loss.... possibly due to swelling of the AN (post-treatment).  Approx 4-9 mos post CK, I had a 15db hearing loss due to AN swelling.  This is not uncommon and panic should not ensue, but its to have you keep your eye on it.  This is the point that as the tumor may swell, it can apply pressure to the hearing nerve... the CK neuro-onc (or radio-onc) may want to prescribe anti-inflammatory meds (ie: Ibuprofen or short term course of steroids, if recommended) to help keep the swelling in check to make sure it is limited pressure on the hearing nerve.   Again, not uncommon but keep your eye on it.

After my 6-9mos post CK, my temp hearing loss calmed down and my hearing restored to what it was pre-CK.... that is also my wish for you. Hang in there.... I know you have done your research before treatment and as researched, I know you have been made aware of some of these issues that may crop up post-CK...... so hang tough and hoping things calm down for you soon.

Phyl

[mk]

Carter,

I am sorry you are experiencing these problems.  Here is what I know from my experience (which pretty much agrees with what Ann said).
There are two types of "hearing loss" one is loss of pure tone average (PTA), i.e. you can't hear sounds at low db, and the other is loss of word recognition. The former can be corrected by using a hearing aid, however the latter cannot, since the hearing aid will only amplify the noise. So your doctor's assessment is correct, that the hearing aid is pretty much useless in your affected ear, and that it is better to tune it to assist the good ear.

I had two episodes of severe hearing loss, one prior to my treatment and one 6 months post-GK. I lost all word recognition capability overnight, although I could still hear sounds. The ENT prescribed steroids right away, and the word recognition came back up to 100%. Now all I have is a mild loss in PTA, of about 20-30 db. From what I know steroid treatment helps only if taken as soon as possible after the episode of loss. When hearing is lost suddenly, it is almost always due to some swelling, which can subside with steroids. However when it is gradual (as seems that has happened in your case), it is due to slow destruction to the nerve and unfortunately irreversible. That beeing said, it wouldn't hurt to contact the CK centre and mention what is happening to them. They may still think that a course of steroids could help.

Unfortunately hearing loss comes hand to hand with having an AN, and most of us must learn to deal with this reality. Having been on both sides (with and without hearing loss), I can tell you that having at least "some" hearing on the AN ear is better than none, in the sense that you still have the sense of directionality, which can be very bothersome when you are SSD entirely.

Marianna

[carter]

my ck dr has said that i am to see neurosurgeon for issues / follow up.

  neurosurgeon only sees patients on thur and Friday of each week - the remaining days are for surgery only .... he is booked this week, so i can see him in 9 days.

so there is no such thing as getting on steroids or getting an answere quickly ... 

[mk]

I can't believe this 
Are you saying that your CK doctor (who is most familiar with your treatment) will not address your concerns?

My radiation oncologist (which is also far, a 3 hour drive from here) responds to e-mails immediately, and he can order a prescription if needed. True that locally my GP is also responsible for regular follow ups, but in cases of emergencies, the CK doctor should be available. Maybe you should try to contact him and explain the situation.

Marianna

PS. It seems that you haven't had lots of luck with your medical teams ...

[ppearl214]

carter,

I have to agree with Marianna as my neuro-onc from my CK team, still... to this day (over 3 yrs later) does all follow ups with me (will see him next in 2 mos), to check on any potential post-CK after affects (short term and long term). 

I am not sure if you had the CK done in Tulsa, but usually the radio-onc does occassional follow ups but for the most part, the neuro-onc does post-treatment follow ups (as well as PCP's, etc) especially only 6 mos post treatment.  Anyone at this stage, post radiation (regardless of which radio treatment was done.. ie: CK, GK, FSR, Proton, etc)..... is most critical for follow up as it is the time frame that things can crop up.

I'm going to ask you a favor please.

Please do a post on the CK Patient Support Board (www.cyberknife.com) to Dr. Clinton Medbury (screenname: radsrus). Tell him you were treated 6 mos ago at Tulsa (if I am correct on that) since he  will know the team there (he is in OKC).  Ask him about follow up with the CK team or note to him that the recommendation was to see a NS instead of the neuro-onc, etc.  I'll follow along over there as well as I'd like his inputs on this as well... esp. since he should know the Tulsa team (Dr. Medbury's team does the CK training at their facility, if my old age memory serves me correctly)

I'm also raising an eyebrow on this one....

Phyl

[carter]

i did post to cyberknife support site.  after reading the suggestion, i added to this post.


i have talked to CK dr, a total of 3 times...

1.  initial consultation.
2.  at 2 month follow up
3.  a call where he dismised me and told me to talk to neurosurgeon.


i am  at wits in ....

[ppearl214]

carter,

I saw Dr. Medbury's response back to you (noted below for all as a reference) and would definately push to see someone at the CK team (CK neuro-onc vs. the radio-onc, although both should see you.... the neuro-onc would follow and make suggestions/prescribe what needs to be done post-radio for the after affects.... he would follow along "neurologically" what is going on).  Push like heck and tell them you are NONE too pleased.  They need to do the follow up.

Phyl


radsrus  Posted: Tuesday, June 16, 2009 4:44 PM   
 
Joined: 10/10/2008
Posts: 920


 "Booked" to me means for routine appointments. My VERY PERSONAL view is that physicians who treat you have an obligation to take care of problems that come up. I think we would likely give you a trial of steroids, although it has been more useful for us when there is sudden hearing loss, which often reverses when steroids are given. I think you should call the office of the radiation oncologist and the neurosurgeon and tell them that we suggested this be considered. It may make them mad thinking we are interfering, but it will likely provoke some action, which is what is needed if this is to be reversible. I am not sure it will be.

 
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
 

[carter]

thanks for helping me to thing through everything. ....  i got caught up in the idea that audiologist said that my hearing was degraded and to use aid in other side rather than to get the root cause fixed - swelling?

and i had doubts flowing in ... 

so this AM - i said what the heck and called Ck dr.   the chart was pulled and i was transfered to nurse of PA?  She listened and asked what other symthoms that i was having.  balance (light headed)  and headaches.  she then asked if i  had been on internet to look to see if others were having simular issues .... this surprised me and i told her of Dr Medbery's response.   She asked what pharmacy i use and said that she would get back with me.  a short time later, i was called to see dr tommorrow at 1:00.

i jumped on the question as a scared old man has very little to loose - other than co-pay.

things in life to ponder now ....

1.  did she ask about internet as tehy had heard about the question to Cyberknife support forum?
2.  i still do not know if my lightheadedness / balance issues is what you guys refer to as "wonkie" headed?


thanks for getting my thoughts back on the root cause - not to stay on the hearing aid.


carter

[ppearl214]

carter,

All I'm going to say is that I am very proud of you for standing your ground, making it known that the dr's need to pay attention! Kudo's to you! Please keep us updated how the appt goes tomorrow.

The nurse may have asked about internet inquiries, based on conversations here (the ANA forums) or even the CK forums (ie: Dr. Medbery's response). Not sure what she was targeting but if she's in tune to the fact that patients do speak to other patients and such online, maybe that is what she was aiming... not sure..........

wonky head (a term coined by Captn Deb on this site) is generally noting an enhanced dizziness/vertigo with a bit of "head disconnnect" (Much like when you take cold medicine for  a cold) as well.

Let us know what they say.. and truly... great job!
Phyl

[carter]

 i got in to see the ck dr on THursday June 18.   my wife and i met there.  after weighing and BP, the dr came in and listened to my issues / questions.  he asked about hearing loss and then asked if this was the only complaint.  it is #1.. with headaches and light headedness behind it.  but hearing is measurable and down?  he asked if i was sick to stomach....  this would mean severe balance issues.  he called a former dr to ask about a serous central retinopothy and the affects of steroids.  this is a special type of detatched retna.  he came back in and said that he wanted to get a mri to see what is going on.. he doubted that it was swelling.  he referred back ot not beign sick to stomach.

he said that if the mri came back as swelling, he would most likely send me to see the eye dr... retinologist ....  but he doubted that swelling was the issue.  i asked if waiting was an issue --- no.  i asked waht if he just gave me the steroids now as my hearing is important.  his reply was that so is your eye sight.  he left me with the feeling that my hearing nerve was damaged.

the mri was set for Tuesday jun 23.  to a different facility as they could do it quicker.....nice tech....she talked to em a lot while in the tube.  but she did blow through the vein with contrast -- it burns... then to fisnish with 2nd puncture.  this mri was in a trailer behind a med center.   i thought that i had seen everything.


hearing is still same.. i do have more of a balance issue.  one of the guys from the shop stopped me today and asked why i stumble into walls now days?  he has been off for a month - he said that it is obvious now...

today - wed i sw ck dr to get results.....  he said that it has gotten larger.  he started to read teh mri report when he got to size he stated a number and he talked about teh tumor is showing its marks of death.  i did not catch it due to words that he used -- but he explained it in english -- this is good.   then i asked how big it is...  i said how big it was to start...and he read teh numbers that it had grown by    --- then said that this has to be  a typo.  it can't be that big?#%#^&%&  my mind goes bananas....   he then talks about seeing the neurosurgeon....he asks about the steroids that he started me on?  when i say that he did not ... he commented that he had talked to eye dr and theer are no issues if i need teh steroids.   he wants him to see if too much pressure is now on teh brain stem and if he advises that i need the tumor removed???  he then got scrpt pad and wrote script for dexamethasone 4 mg. ... to take 2 per day and to get priloset to help with stomach issues that he says often goes along with steroids.   to call in 2 weeks if i am better and he may cut dosage in half.    to see him in a month.   then he uses words to make me feel that teh swelling may not make it necesary for surgery?

so tommorow i see the neurosurgeon... perhaps he can tell what size it really is?  i can tell that i will have very little sleep tonight .... i know that they said that the tumor was pressing on the brain stem .....  but i trusted that  swelling would be allowed for as it is relatively common based on posting. 

my wife had choice words when  i told her...  she is asking if we need to find another opinion. 

[Vivian B.]

Hi Carter,

Sorry to hear you are still having issues. Just for your information, the AN auses loss of hearing and does damage the nerves in the ear in any case.  So that is unavoidable, but the rest of the hearing after treatment I don't know too much about. If you recently had the treatment, how can they know that it has already grown. I think that it wasn't measured properly or it was a typing error. I would have the neurosurgeon review your MRI and to clearly explain to you what is going on and what you need to do. Don't worry, this is  just a stepping stone. Let us know what the neuro says.

Vivian

[ppearl214]

carter,

I am so sorry you are running into issues and honestly, it does sound like potential post-CK "swelling", esp. this soon post treatment. I saw you posed this question on the CK Support forums as well and saw Dr. Medbery's reply to your query.  He had the same thought.... please keep us updated as to how you are doing.. and hang tough! We're cheering you on.

Phyl