Recent Posts

Pages: 1 [2] 3 4 ... 10
11
Pre-Treatment Options / Re: Where do I go from here?
« Last post by donjehle on July 11, 2024, 07:17:18 pm »
Thank you for sharing your experience, StarryNights123, on the ANA Forums!  We occasionally have young people in their twenties and thirties share their fears, their concerns, and their experiences, but, unfortunately, many others never post what they are going through out of fear.

Please let us know how it goes after your visit with the neurosurgeon.  My personal recommendation to you would be to speak with a number of specialists.  Neurosurgeons often (but not always) think surgery is the best way to go.  Those who provide radiation treatments think that their form of care is the best.  Sometimes it is confusing when so many specialists disagree, but in the end, it is your brain, and you need to do what you believe is best for you.  Some people, on these forums, will promote the treatment which they chose as the best way to go.  But, in the end, you need to make your own decision.

I wish you the best on this difficult journey!
Don
12
Radiation / Radiosurgery / Re: My AN experience with SRS at Kaiser Permanente Northern California
« Last post by donjehle on July 11, 2024, 07:07:24 pm »
Thank you, Derby, for sharing your experience!  It is so valuable for our ANA Forums!

I will be looking forward to the update in August.

Best wishes on your recovery and journey!
Don
13
Balance Issues / Re: Extreme vertigo, balance and contiuned speech problems & reconstructive surgery
« Last post by donjehle on July 11, 2024, 07:05:01 pm »
Hi Greg_G, and thank you for posting on the ANA Forums!

What you are going through is very challenging.  I am very fortunate that my insurance covered my vestibular therapy treatment.  I was told early on not to simply seek physical therapy because most physical therapists are not trained in vestibular schwannomas, but it was better to seek someone who has experience dealing with those with acoustic neuromas.  My balance improved greatly after receiving such treatment.  But, again, my insurance covered it, and yours might not.

I can see how your confidence would be shaken during a job interview.  I, too, was asked if I had been drinking when I staggered down the hallway like someone who was drunk.  It is very embarrassing at times.  I found that I had to explain my condition over and over again.  And I also had to tell others that many people with acoustic neuromas are able to overcome the challenges and live very productive lives.  And sometimes I would give them printouts to assure them that things would be okay.

I wish you well in your journey!  Please keep us posted in how it goes.
Don
14
Physicians / Re: Newby in Seattle seeking info on area providers of care that is current
« Last post by donjehle on July 11, 2024, 06:51:54 pm »
Hi suelong, and welcome to our ANA Forums!

Thank you for posting.

One of the benefits of the forums is finding information from others who have posted previously.  This is my suggestion to you:

Go to the Home page (what I'm about to share does not work from the page you are currently on).  Once you click on <Home>, find the search field on the right side, and type in "Seattle" and then press <Enter>.  When I did it, there were 333 other posts about Seattle on these forums.  Not every one of them is relevant, but many posted about their experience with Acoustic Neuroma specialists in the Seattle area.  That may or may not be beneficial to you.

I wish you well on your journey!
Don
15
Post-Treatment / Re: 3 Days Post-Retrosigmoid Surgery at UCSD Report
« Last post by donjehle on July 11, 2024, 06:45:52 pm »
Thank you, christopherbench, for sharing your experience on the forums!
As you know, when our forum members share their experiences, it benefits, not only other ANA Forum members, but others who search through the forums for any information which might be helpful to them.
So, I appreciate what you shared, and I wish you the best on your continued recovery and journey!
Don
16
Caregivers / Re: 2 years on
« Last post by donjehle on July 11, 2024, 06:38:18 pm »
Hi pudding!  Thank you for posting on the ANA Forums!

Just having the diagnosis of acoustic neuroma is enough for many, many men and women to have very serious emotional issues.  There are many people who have posted on these boards who have shared how they needed to seek professional counseling to help them through the challenges, not only of the diagnosis, but also of the treatment and its after effects.  As you know, pudding, there are tremendous benefits to having help from a professional to guide a person through the difficult journey of having an acoustic neuroma and sometimes quite serious results.

The problem is that you, as his wife, may not be the person who can convince him to seek professional care.  The more you push him to do it, the more he may resist.  The greatest thing you can do is to listen to his frustrations and show him love and support.  That is not easy to do when he is nasty to you.  You yourself might benefit from seeking counseling to help you deal with this situation because what you are dealing with as a spouse is very challenging.

What I hope would happen is that someone who is close to him (like a very good friend) would encourage him to seek emotional care and that seeking such care is not a failure as a man, but is the smartest thing to do when a person faces the difficulties of an acoustic neuroma and its after effects.

Best wishes for both you and your husband!
Don
17
Eye Issues / scleral lens question/issues
« Last post by Kbthor on July 11, 2024, 06:18:04 pm »
Hi!  I am 11 years post surgery for my acoustic neuroma, and I have finally gotten a scleral lens just today.  I had no issues putting it in or taking it out.  However, after I left the doctor, my eye started to feel dry - but I thought it was just what it felt like to get used to the feeling of the lens in my eye.  I removed the scleral lens tonight, and oh my goodness my eye was so painful and dry. Does anyone have any tips for how to put it in? I think because the doctor's assistant had me look up and put it in, maybe all of the liquid leaked out of the lens??  Do you have to lean over a mirror and put it in?  Is there a cap on the number of hours I can wear it?  Any suggestions about daily use of the scleral lens would be helpful.  Thank you!
18
For those in the 'watch and wait' status / Re: Growth after 10 years
« Last post by donjehle on July 11, 2024, 06:07:52 pm »
Thanks, MikeRad, for sharing your decision.  It makes a lot of sense to me.  I lost my hearing while waiting, but the truth of the matter is that I would have lost my hearing even had I chosen to have GammaKnife because I lost it within a couple of months of my diagnosis.  So, my hearing would have been lost before any treatment anyway. 

But I commend you for the serious thought you have given in making your decision.  I just hope that you will keep us updated on your treatment and how things go for you afterwards.

Best wishes on your journey!
Don
19
Pre-Treatment Options / Re: Where do I go from here?
« Last post by DanFouratt on July 11, 2024, 12:20:30 pm »
Starrynights123,

Sorry you joined our club but welcome.  I stayed in wait and watch for a couple of years as the damage was already done to my ear.  The I started studying my options as I did not want it to get worse.  I have no balance issues. After weighing all the plusses and minuses I went with CK.  Regardless of your decision please have the procedure at a high volume facility.  Also these tumors are slow growing so move forward but do not rush. If you want the information I pulled together when making my decision please email me at Dan4att@gmail.com and I will send it.

Good luck on your decision journey.

Dan
20
AN Issues / Re: Acoustic Neuroma / Li-Fraumeni Syndrome
« Last post by mwatto on July 11, 2024, 02:11:48 am »
Hi Ukelele - I have that stabbing ear pain too! Had it at time of diagnosis and told its not the AN its more an irritation of the TMJ joint- but an old AN case study I read said related (AN and TMJ). I dont want to hijack this thhread but maybe message me and I will share whats def helped me with that stabbing pain- I get in ear and eye. It wakes me up often. Recently a few things am trying that help.
Pages: 1 [2] 3 4 ... 10