Recent Posts

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Hi, I am the co-leader of the Washington, DC support group!

I've compiled a few recommendations in the area from our support group:
- Julie Shein - Point Performance in Bethesda: http://www.pointperformance.comÂhttps://www.adventisthealthcare.com/services/rehabilitation/outpatient/balance-vestibular-program/#.Vwwur44pBSA
-MedStar National Rehabiliation Network: https://www.medstarnrh.org/our-services/vestibularbalance-rehabilitation/?_ga=2.124915150.572134867.1516114665-594392442.1516114665#q={}

Let me know if you have other questions, or would like to join our mailing list / attend our meetings, the next one is this weekend - Sat Jan 20th in DC!
22
Microsurgical Options / Re: Friedman/Schwartz
« Last post by michellef08 on January 16, 2018, 08:47:18 am »
They did my surgery back at House in 2013 as a team, and they definitely are the dream team! They preserved my hearing with Middle Fossa and I didn't have a single facial or balance issue at all! I'm so excited they are back together, now people don't have to choose between them!
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Physicians / Re: Dr. Marc Schwartz, formerly of House Clinic
« Last post by michellef08 on January 16, 2018, 08:39:34 am »
Yea, here is the press release from UC San Diego:
https://health.ucsd.edu/news/releases/Pages/2017-11-15-15-renowned-surgeons-launch-acoustic-neuroma-program-at-uc-san-diego-health.aspx

Dr. Marc Schwartz and Dr. Rick Friedman have both moved to UC San Diego at the end of 2017. They did my surgery together at House back in 2013, and I called them the dream team!! They did the Middle Fossa approach and preserved my hearing, and I didn't have a single balance or facial issue!
24
thank you both

indeed my tinnitus gets louder in am , it does fluctuate
in intensity

I shall try aspirin though

aspirin can cause the tinnitus to get worse
one guy told me to take tegretol, other told me to
take gabapentin,

perhaps if some cyberknife radiotherapist can let us know
if it is good idea to start treatment early inview of small radiation
dose versus waiting long time when tumour gets larger with more
radiation causing more hearing loss !

25
Some people find relief from tinnitus with hearing aids that add noises which distract one from the tinnitus. That is my understanding. Tinnitus comes from the brain and not the ear, so if hearing is lost during surgery, tinnitus can remain or get worse. Perhaps others could chime in and share which devices they use with success.
success of hearing preservation with surgery will depend on many factors such as location and size of tumor, surgical approach and the experience of the surgeons.
Regardless of the size of the tumor it's possible to lose hearing with surgery, radiation or watch and wait. it's also possible to have hearing preservation with any size tumor, whether large or small.
It makes it difficult for patients to make decisions based on hearing. Many doctors advise not making decisions based on hearing, but rather, other factors.

Alan321
Your tumor sounds very different than most. Hopefully others with the same kind will respond.
26
Physicians / Looking at Surgeons and Treatment facilities
« Last post by Citadel mom on January 15, 2018, 04:41:02 pm »
Diagnosed with a 3cm AN, know treatment option is Translab. based on size and already have significant loss of hearing with mass effect on brainstem and cerebellum. Already met with Dr. Rivas and Thompson at Vanderbilt, really liked both of them and facility, but concerned with distance (6 1/2 hour drive). Any body had surgery at Vanderbilt with these doctors and don't mind sharing their experience? Had an appointment already set for Duke, Dr. Zomorodi for 25th don't know if should meet with him too just because closer (3 1/2 hours). Any input on him and Duke would be appreciated too.
27
Hi Alan,

I'm a 52-yo male and I also have a 3mm Acoustic Neuroma in my right ear.  It was diagnosed in Oct 2017.  I'll be going for my second MRI this March (six months) to see if it's grown.  Interesting you were told to wait 1-year.  I've just started taking a daily, low-dose aspirin on the advice of my doctor.  It has been shown in some cases to slow or even stop tumor growth, but I realize that's a long-shot. 

As for the tinnitus, I think mine is pretty bad too, although I really have no idea how it compares to other's.  I find it very hard to explain to my wife & kids just how bothersome it is.  As you know, it just rings 24-hours a day, 7-days a week, this high-pitched almost electronic whine.  You would think I'd have a constant headache from it, but I don't.  Maybe I'm just used to it or I have a high tolerance for it.  Interestingly, mine doesn't really vary in pitch or loudness as your's seems to.  When it's very quiet, like now at home alone or in bed at night, it's very loud.  But then when I'm in NYC for work, the environment is often so loud I barely notice it.

You're lucky your hearing is still good.  My hearing has always been excellent, but it's starting to go in my affected ear.  Before this, I'd be the one person in the room who would hear something before anyone else.  Now the hearing in my right ear is maybe 50% of what it was.  If I'm in a crowded bar or restaurant or concert or some other large social gathering, hearing is real problem.  And from what I understand, it doesn't get better. 

My goal is to find a solution that preserves what's left of my hearing, and eliminates the tinnitus.  I'm not sure which is more important to me.  The tinnitus is terrible, but I hate the thought of being deaf in one ear, and should anything happen to my left ear hearing, well, I'd be totally deaf.  My understanding is that surgery has better odds of preserving hearing & eliminating tinnitus, especially while the tumor is still relatively small, but I'm no doctor.  I think the good news for people with very small tumors is that we do have time before a decision needs to be made. 

Let me know if you have any questions.  Happy to share thoughts & results I work towards some sort of resolution of this. 
28
For those in the 'watch and wait' status / Re: Hi from overseas Europe
« Last post by SP on January 15, 2018, 03:16:41 pm »
Hi Siila,

finding out about having an AN and having that yearly MRI check up really can be a stressful situation, I'm sorry you're going through this. Everyone's situation is unique and it is difficult navigating the information and options for next steps...For me the information on this discussion forum was very valuable to understand the process and options (I spent alot of time on research --some may say too much-- but it was also a way of coping at the time).

It may be worth asking your doctor if they can do your MRI without Gadolinium, as i recently discovered (after about 10 MRIs over the last 3 years) , that they can do the next one without GAD.

its really difficult to maintain peace of mind when you are going through this difficulty but anything you can do to reduce stress may help to manage somewhat (it sounds like you've started this with mindfulness practice)... i hope that your way forward becomes easier for you.
Stella
29
Hearing Issues / Re: Opinions about BAHA
« Last post by alabamajane on January 15, 2018, 12:45:56 pm »
Hi MaryQ,
I did have some minor irritations with slight drainage in the beginning ; however, they will subside with good cleaning hygiene of the area,, after healing,,,, it’s been about 4 yrs since I had that surgery but I don’t remember any serious infection that wasn’t easily cleared. Hang in there,, it does get better after healing of the area.
I’ve read of a few people who had issues after healing but not many as I remember.

Good luck,, maybe others will respond,,

Jane
30
Eye Issues / Re: Scleral lens problem - looking for suggestions and tips
« Last post by tugnutt on January 15, 2018, 09:59:48 am »
Jill Marie, Thanks so much for that great information and advice!  It turns out that my scleral lens was VERY scratched and perhaps warped, probably because I was taking it out frequently, and I wasn't very careful... and probably caused the damage. I had a backup lens that I am now using, and feels pretty great, so am wearing that.

THAT SAID, until I had the neuroma surgery, I used soft lenses for years.  I still wear one in my right eye for distance (monovision) sometimes.  The lenses are Acuvue 2, I am considering trying one of them to see how it feels.  I am a bit worried about it getting stuck in my eye... any suggestions about that?  Like I said, I have worn soft lenses for decades, and I have zero problem with inserting and removing them,  and no problem with the large and hard scleral lens.  Maybe I just need to be bold and give it a try!!   If that lens works, I may pursue the Oasys Hydraluxe! THANK YOU!!!
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