Recent Posts

Pages: [1] 2 3 ... 10
Hearing Issues / Re: Any musicians out there?
« Last post by MarlaB on Today at 10:28:16 am »
My tinnitus responds to sound, so when I know I'll be in a loud place, I use an ear plug in that ear, even thought I can't hear on that side. I didn't catch if your tinnitus was in your good ear.

wishing you the best...

Post-Treatment / Anyone develop a lump behind ear on Translab side?
« Last post by DZ on Today at 09:18:29 am »
Just wanted to ask if anyone else developed a soft non-painful lump behind the ear against the skull on the translabyrinthine surgical site side? I am about 6 months post op. Will see an MD soon but thought I would ask if anyone else developed this type of mass. Thanks!
Hearing Issues / Re: Any musicians out there?
« Last post by Basia1987 on Today at 05:59:57 am »
I'm gonna add to the old topic. Maybe some of the musicians writing here are still around.
I'm a fellow musician (singer, pianist) from Poland, living in Germany. I was diagnosed with a large AN (2.8x2.5x2.2 cm) in October last year and operated via retrosigmoid approach in an attempt to maintain my hearing in December. I believe after waking up from the surgery I could still hear. Unfortunately a few days post-OP I could feel the hearing is much much worse. A hearing test confirmed a complete hearing loss. What a heartbreak. On top of that I have a loud tinnitus that reacts to sound - when I'm in silence it's gone or very quiet, when I hear sounds it becomes louder, corresponding to the loudness of whatever I am hearing. I am still coming to terms with what happened to me and haven't tried playing piano. I tried singing a bit and it feels strange hearing myself only on one side. I also don't like to listen to music too much, since it's aggravating my tinnitus and is tiring... I do hope this will get better with time...

If anyone is still active here, I wanted to ask you, if you have experience with hearing aids or bone anchored systems and how good are those? I tried a hearing aid in my pre-surgery time and was surprised how bad it sounded (it wasn't cheap at all! I think from Oticon) - artificial and with noticeable latency. I wonder if there is anything that does provide help and doesn't sound bad to the musician ears.

Another question is - if you suffer from tinnitus that reacts to sound - how do you deal with it? Did you learn to ignore it with time or did it become less severe? Mine so far feels a bit like exploding in my head! Any input appreciated  ;D
Post-Treatment / Re: Follow up MRIs with contrast
« Last post by mwatto on March 20, 2023, 08:04:24 pm »
Thanks Stella! Yes the ear pain turned out to be TMJ so a lot of you tube videos on specific exercises for that and the pain has gone! During the day I also work on gentle massage and relaxing techniques for that. No more issues - much to my amazement as my doctor told me it was that ages ago...!
Post-Treatment / Re: Follow up MRIs with contrast
« Last post by SP on March 20, 2023, 07:41:49 pm »
Hi Michele,

I hope you find relief for the TMJ/ear pain soon...
The MRI results show indeed very good news..... Significant tumor dimension shrinkage and not impacting the brain stem and the trigeminal is OK---that is all so great Michele!!

Onward to progressive healing,

Microsurgical Options / Post-surgery regrowth - second surgery or radiation?
« Last post by RGG on March 18, 2023, 02:30:35 pm »
Hello, I had retrosigmoid surgery for my initial 3x2 cm AN in 2017, and at the time the surgeon thought he removed it completely.  Unfortunately, my follow-up MRI in 2020 showed a new enhancement at the end of the auditory canal, and this has grown very slowly over the last three years and now stands at around 7 mm.  My surgeon said he doesn't think I should do a second surgery, and is sending me for a radiation referral. 

Has anyone had follow-up surgery after regrowth from a first surgery? Are there reasons why a second surgery is more difficult?  I'm a little worried about the long term effects of radiation (I'm in my early 40's), and the fact that if it fails I'll need surgery anyway.  I'm thinking if I should get a second opinion to see if it can't be removed completely with translab and not have to worry about it anymore.

Thanks for any advice or personal experience,

Post-Treatment / Re: Follow up MRIs with contrast
« Last post by mwatto on March 17, 2023, 08:03:32 pm »
Hey there Don. Yes and its very good news mine has shrunk quite a bit. No cysts visualised, trigeminal nerve and all structures normal. My hearing is 85% that side. The stabbing ear pain has gone now. My dimensions in 2019 were: 20.3x19x14.5mm and it was cystic. NOW they are: 12x12x10mm. The leasion was touching my brainstem before now it 'only paryially extends into right IAC and does not reach the fundus'. No cystic degenration. I am pleased because I was very very anxious for this MRI re the ear pain (I think that must be TMJ as its responded to some You Tube tips on bruxism, clenching which my dentist also said he thought was causing nerve pain).
Post-Treatment / Re: Interesting read today
« Last post by mwatto on March 17, 2023, 07:56:30 pm »
Thanks Don! I read on most days to understand it better so I can choose supplements that might help. I have tried many over the years- now I just target neuro inflammation, fibrin/coagulation, overactive glial  etc. I collect articles such as Prof De Vries on the biology of VS. I do feel knowledge helps me cope with it.
Radiation / Radiosurgery / Re: 4yr MRI CK
« Last post by mwatto on March 17, 2023, 07:34:09 pm »
Thank you Don! I do think keeping low stress, good sleep, and a few target supplements are helping.
Pre-Treatment Options / Re: Drug treatment
« Last post by mwatto on March 17, 2023, 07:32:54 pm »
Hi Don I am taking resolvins now - see my post on some links or google on them (SMPs). I just work on neuro inflammation every day and on fibrin aspect of it - so occassional serrapeptase, bromelain. Still taking melatonin, D3,K2 daily. I have tried LDN...but the resolvins def helping at moment with cognitive. Much on this if you read on.
Pages: [1] 2 3 ... 10