Recent Posts

Pages: 1 2 3 [4] 5 6 ... 10
31
AN Community / Re: 12 years later..
« Last post by Karin Mauro on November 10, 2024, 12:07:34 pm »
As a newly diagnosed reluctant schwannoma host facing Translab surgery in 11 days I’m finding this mental picture I’ve drawn from your 12th anniversary post of your treatment course terrifying. I’m certain I couldn’t survive all you’ve been through. I’m so glad that you’re doing well. Best wishes to you.
32
Inquiries / finally getting MRI's next week
« Last post by windingshores on November 10, 2024, 10:16:11 am »
Hello, new here.  I am a  73 year old woman with a slew of medical issues  but hardy.   Spinal stenosis in neck with radiculopathy and myelopathy.  Lupus and possible scleroderma.  Had  breast  cancer, am being treated for osteoporosis and  have several spinal fractures.

For maybe two or even three years I have had increasing  numbness of my left cheek. Feels like I had lidocaine at the dentist.  All the time but intensity fluctuates. Also what has been diagnoses as trigeminal and occipital neuralgia also on left side.

I can't even remember when tnnitus started but it got a lot worse two years ago from music.   It has been louder in the last 6 months for no reason.  I also seem to have  hyperacusis  though only certain frequencies (leaf blowers!). Loud noises greatly increase pain and numbness on left side of face, I would say  8-9/10.     

I tried playing rain sounds overnight last year to deal with tinnitus, and woke up with terrible balance. Not room spinning. I felt like I was being pulled to the side and couldn't tell where I was in space.

Some high frequency hearing loss on left side, going again for hearing test tomorrow.

Neuro had an MRI done 2021 w/out contrast . Report said it could not tell about tumors  w/out contrast.  He took that  MRI as a no.

I have bouts of vertigo and have been told I have "central vertigo" and "vestibular migraine."   These are brief one day episodes. Also nystagmus on one side at times- jsut did paraneoplastic  syndrome blood test because nystagmus warned me of cancer in the past.


My neck and shoulder issues definitely pull on muscles that could press on nerves or blood vessels. My left arm is often shorter than the right because of a knot in  that shoulder, and pain goes down my arm.   My back is very tight from fractures and that affects the neck too.

A couple of doctors over the years have suggested I have MS.

So?  My PCP has ordered   MRI brain, MRI brain angio, MRI neck.   I am seeing an acoustic neuroma doctor this week to address that possiblity.

I am concerned about MRI's effect on tinnitus.  Has anyone had their tinnitus worsen on an  MRI? This would be a long session and I am wondering if I should prioritize brain over neck and just do one, since I already know about my neck.

I am also concerned for kidneys with contrast and want to talk to MEEI about newer  contrast that is more benign.

So neck issues causing symptoms or acoustic neuroma?  It seems that my auditory and facial nerves are affecting each other since loud noises like  leaf blowers  cause the pain and numbness on left side to get worse.   I have been living with these symptoms for quite awhile but they have kind of reached a crisis point.   The thing is, if I don't have surgery, is there a point in doing MRI's?  Thanks!
33
Inquiries / Re: MRI and AN Detection or Missed One
« Last post by mwatto on November 09, 2024, 08:29:24 pm »
You should have a MRI. If contrast just ask for renal function test before. My AN was spotted with no contrast- but they still needed contrast for the treatment of CK.
One thing you may have investigated is TMJ. My deep earache and pain behind eye one side seems to be related to TMJ and a custom made dental mouth guard at night has helped so much. Was told I have been clenching for years at night. Its worth thinking outside the box and seeing your dentist-I thought I had trigeminal neuralgia the pain was that bad.  I had alsxiety thinking it was the AN compressing a nerve however since wearing the guard its much improved -I do a few other things such as using a face roller on that side at night. Medical CBN also helped me at times.
34
AN Issues / Stroke or Vestibular symptom?
« Last post by RobinKeener on November 08, 2024, 07:26:44 pm »
I was walking to my car, dizzy in my head, as usual, and I started having a strange sensation as if a force was trying to push me down. I slowly made my way to the car and was unable to get my arm to move to open the door, then my legs collapse and I fell to the ground.  My husband had to pick me up to get me in the car, went straight to ER ( we live in a very rural town in Arkansas) so they started treating me as a stroke patient. I told them all about the tumor and that my symptoms may be related to the tumor...although never any thing like this. Anyway after several cat scans and an MRI
that all came back negative for any cranial bleeds, they administered the clot buster drug TNKase. I must note, I couldn’t lift my legs and was having a very difficult time moving.  Ended up being transported to Little Rock where I was monitored  had more scans that revealed nothing other than my VS.  Home now, and am having similar symptoms just not as severe although I have fallen several times since home and having that crazy feeling of a force pushing my head down.  I was actually going to have GK next week and now it is postponed.  My VS team is in Houston and I’m waiting to meet with them regarding the event.  Anyone ever experience this? It was so scary, I thought it was best to take the clot buster, better to be safe than sorry. 

Thanks, a dizzy blonde from Texas living in Arkansas heaven.

Diagnosed: 8/2023
VS: 7.3 mm x 7.5
Treatment: waiting for Gamma knife surgery 
35
I read this and was wondering if anyone has ever considered TCM? Qu-Du-San-Jie decoction? https://www.frontiersin.org/journals/pharmacology/articles/10.3389/fphar.2022.941854/full

I met a TCM practitioner a few years ago who wanted to work with me re the VS but I chickened out tbh was scared to try it.
36
AN Research / Re: Education and risk of AN article
« Last post by mwatto on November 08, 2024, 06:59:47 pm »
Yes I thought so! I am a retired teacher who is still academic and plays a lot of chess. I do think that stress and inflammation are more likely than education myself.
38
Post-Treatment / Insurance Coverage vs Follow up
« Last post by DanFouratt on November 08, 2024, 04:16:03 pm »
I had my CK treatment Sept 2023.  I had my first follow up MRI June 2024, it marginally shrunk. I am in the middle of insurance changes, long story here.  However I asked my doctor if I could push my next follow up until Dec 2025. He had no problem with the delay.  Just reaching out to see if others have had longer intervals in their follow up MRIs like my plan.

Dan
39
Hearing Issues / Re: Tinnitus Suddenly Worse
« Last post by DanFouratt on November 07, 2024, 03:48:07 pm »
Jordy,

Sorry I high jacked the stream, with my question to Michelle.  My tinnitus has been consistent since it first presented itself. It has not changed.  It did get a little worse after CK but went back to "normal".  My has always been a bit on the loud side.  I wish I had an answer.  I will look in to what Michelle said.  My sister has tinnitus and uses some of the same things Michelle mentions.  They will probably help us.

Good Luck,

Dan
40
Eye Issues / Re: Any other cycclists out there???
« Last post by stevehernes on November 07, 2024, 04:27:44 am »
Is it still happening to you? That sounds frustrating! If you're dealing with this issue frequently, maybe it's time for a change. I would probably check out the sundance catalog and get myself a new pair of sunglasses for sure. They have some great styles that could help you feel more comfortable while adding a fresh look. Plus, it's always nice to invest in something that combines both fashion and function
Pages: 1 2 3 [4] 5 6 ... 10