CyberKnife Patient Support Group Cyberknife.com All posts found on this patient forum are archived and are no longer live. They are available to read only.
New Topic Locked Topic Printable Version
[ << Previous Thread | Show Newest Post First ]

CARTER
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Oct 2008
Total Posts : 2
 
   Posted 10/8/2008 5:52 PM (GMT -8)    Quote This PostAlert An Admin About This Post.
I HAVE BEEN LOOSING HEARING FOR 10 PLUS YEARS. ABOUT 8 YEARS AGO, AN ENT DOCOTR ASKED ABOUT THE LOSS ONLY ON ONE SIDE. HE STATED THAT HE COULD RUN TESTS, BUT THEY WOULD SHOW 0 SO I SHOULD JUST ACCEPT THE LOST HEARING.

3 YEARS AGO, I WAS FITTED FOR AN HEARING AID. WE TALKED ABOUT THE LOSS ON ONLY ONE SIDE. SHE FITTED ME WITH THE AID AND THAT WAS IT.

EARLIER THIS YEAR, THE AUDIOLOGIST WAS ON VACATION AND DID NOT CHANGE HER VOICE MAIL. AFTER TIME, I CONTACTED ANOTHER AUDIOLOGIST AND THEY REPAIRED MY HEARING AID AFTER A TECH AND I TALKED.

AS I HAD NOT HAD MY AID REPROGRAMMED IN 2 YEARS, I NEEDED IT ADJUSTED TO COMPENSATE FOR LOST HEARING AGAIN. TO THE NEW AUDIOLOGIST'S OFFICE AND I MET HER. SHE DID THE NORMAL TEST AND ASKED ABOUT THE ONE SIDED LOSS. THEN PERFORMED A TEST WITH PROBES ON THE NECK AND FOREHEAD WITH NOISE BEING BROADCAST IN MY EARS. ABNORMAL!

SHE ARANGED A VISIT WITH ENT - THE NEXT DAY.

THE ENT, TALKED AND SET UP A MRI. I HAD A HARD TIME WITH CLOSED IN FEELING OF THE MACHINE. LESS THAN FRIENDLY TECH ALSO.

GOT CALL FROM ENT AND HE SAID THAT I HAD A GROWTH. NON MALIGNANT. HE TALKED TO MY GP AND THEY RECOMMENDED THAT I TALK TO CYBER KNIFE. THE MACHINE IS NEW IN The Tulsa area and both are associated with the supporting hospital.

MONDAY TO CB AND I WAS TOLD THAT I HAD AN A.N. THE SIZE IS 2.9 * 1.6CM. IT IS CLOSE TO BRAIN STEM. CK DR TALKED ABOUT THE TUMOR, SAID CK WOULD KILL THE CELLS, DESCRIBED MIMIMUM SIDE AFFECTS FROM RADIATION, SAID THAT I WOULD LOOSE SOME HEARING, GAVE TOUR OF FACILITY. ETC. SHE SAID THAT SHE HAD PERFORMED 30ISH OF THESE PROCEEDURES ON THE CK. SHE IS DIRECTOR OF THE PROGRAM. SHE HAS SEVERAL YEARS WITH OTHER MACHINES.

I KNOW THAT I DO NOT WISH TO HAVE THE SURGERY ..... TIME IN HOSPITAL AND PLAIN FEAR. I LIKE THE IDEA OF NON INVASIVE PROCESS.

SHE SAID TO GO OUT AND GET EDUCATED. TO GO ON TRIP TO HAWAII THAT WIFE AND I HAVE PLANNED FOR 2ND WEEK IN HAWAII. SHE SAID TO GO ENJOY LIFE. SHE ALSO TALKED ABOUT NOT LOSSING THE HEARING TOTALLY.... I HAD THOUGHT THAT SHE SAID THAT I WOULD UNTIL I LISTENED TO TAPE RECORDER TONIGHT. WIFE TOOK RECORDER AND GOT PERMISSION TO TAPE THE MEETING.

MY ONLY REAL SYMPTHOM TODATE IS HEARING LOSS..... SOME BALANCE ISSUE AS I FIRST STAND.

I HAVE DECIDED 99.9% TO TRY CK? I AM 56 YEAR OLD MALE IN PRETTY GOOD HEALTH - OVERWEIGTH - GOING TO WEIGHT WATCHERS AND HAVE DROPPED 35 POUNDS SO FAR. TAKE BLOOD PRESSURE MEDS.... SAME SCRIPT FOR OVER 5 YEARS. I HAVE MADE APPOINTMENT WITH DENTIST AND GP..... GET A FULL PHYSICAL, FLU SHOT?, GET TEETH CLEANED , AND ASK FOR ADVICE. THIS IS LAST OF OCOTBER.

I HAVE READ A LOT ON THE INTERNET.... i see that every site is sponsored by a group that pushes what it supports ... i am referring to those associated with dr offices or hospital. none of these "commercial" sites give an even account? or am i wrong? so i know if i go to surgeon, he will most likely say to have the surgery .... if to ck dr. the bias will also show.

so given my presnet state of mind..... i think that i have made up my mind for the CK. My real concern now is - to have the proceedure done here in Tulsa or go to group with more experience? if i do - how to arrange this? how to set up dr here for follow up? and of course, can i afford the travel, hotels, etc? if go out of town, i will use up sick time for the 5 days of treatment... how can i find experience level of dr's in other towns such as OKC? we have relatives there. and to find out if more experienced doctors are in network --- i have united health care insurance.

for economics - it would be better if done locally. but i also want good care. ie best results.

the dr said that she would schedule 4 mri's for the first year... she did not talk about other visits - immediate care or anything else ....

i have questions ... now

1. if i do loose hearing - will cochlear implant help? will insurance pay any of? decision time limit after loss?
2. what are chances of swelling? i had central serous - eye issue - and was then told to avoid stroids --- this was 8 years ago.
3. do i just have the proceedures and not come back until next mri is due?
4. if i do loose hearing will this happen immediately or will the nerve die over time?
5. should i stop trying to loose weight during proceedures and for a while after?
6. i have read about neurofibromatosis .... my dad was told that he had leers disease ... could this be genetic? if so - what to do for 25 year old daughter?
7. get flu shot before?
8. what kind of side affects should i really expect?

i know that this is very long post .... it is doing my soul good to just write it allout ..... please excuse the lack of spell check. any support and suggestions would be appreciated from all.

i am very thankfull for the new audiologist!!!! Thank you!


and i am scared.

thanks
carter
Back to Top
 

radsrus
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Jul 2004
Total Posts : 7510
 
   Posted 10/9/2008 6:52 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
1, About 75% of patients treated with CK for AN will retain serviceable hearing. I am not aware of any cochlear implants being done for unilateral hearing loss after radiation treatment for AN. THe risk of hearing loss appears to be lower if there is a conscious attempt to spare the cochlea, or at least we think so.
2. Most of our patients don't require any steroids, but some do. What kind of eye problem did you have?
3. We see all patients one month after treatment, then when MRI's are due. We have usually done MRI's every three months for the first year, then every 6 months, but frankly I think it is okay just to do them every 6 months.
4. Hearing loss is usually gradual over time. Some patients do get rapid and sudden hearing loss, probably related to swelling, and that can sometimes be fixed with a short course of steroids.
5. I don't think weight changes matter much except you should not be on too strict a diet for a couple of weeks after the procedure
6. Unilateral AN is not related to neurofibromatosis. I don't think you should do anything about your daughter unless she has symptoms
7. Flu shot is okay any time
8. Some people get a feeling of fullness, some balance issues. Not everyone gets those, and they usually go away by themselves. You can read the posts in these forums for other things people have reported, some of which I think are unrelated to the treatment.

There i no reason to be scared. This is eminently treatable, with 95-98% control by radiosurgery. We would have to review the scans to be sure, but sometimes we recommend a debulking surgery, but we have treated many your size without surgery and with no problems.


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

Back to Top
 

paamboli
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Mar 2008
Total Posts : 63
 
   Posted 10/9/2008 8:18 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
Hi,
I had CK over a year ago for a meningioma. I just thought to give you a "heads up" on the fact that I felt fine for @ 1 week after treatment, and then I literally 'fell asleep' for about 3 weeks. I was told that this is a common side-effect, and does not happen to everyone, but you may need more than 5 days of sick leave. I also suggest that you go to a large hospital where they have done lots and lots of CK on acoustic neuromas.

Best of luck,

paamboli
Back to Top
 

radsrus
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Jul 2004
Total Posts : 7510
 
   Posted 10/9/2008 8:29 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
Meningiomas are typically more of a problem than AN's, although not always so.


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

Back to Top
 

CARTER
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Oct 2008
Total Posts : 2
 
   Posted 10/9/2008 3:52 PM (GMT -8)    Quote This PostAlert An Admin About This Post.
Dr. Medbery - Thank you for the reply. this is a time for confusion in our lives - the carter family.

More than anything else, i was afraid that i could have possible passed along a problem to my daughter. your words help to calm my greatest fear.

The eye problem was Central serous retinopathy. it has been several years...... but the eye doctor did say to be cautious of steroids in my future.
Back to Top
 
New Topic Locked Topic Printable Version
 
Forum Information
Currently it is Tuesday, November 21, 2017 3:50 AM (GMT -8)
There are a total of 21,621 posts in 3,083 threads.
In the last 3 days there were 0 new threads and 0 reply posts. View Active Threads
Who's Online
This forum has 3059 registered members. Please welcome our newest member, Thom Howard.
18 Guest(s), 0 Registered Member(s) are currently online.  Details