Recent Posts

Pages: 1 ... 3 4 [5] 6 7 ... 10
41
Hi Rosie -

I can tell you that I had facial reanimation by Dr Boahene in 2017. He grafted muscle from my inner thigh, separated it into strands (think string cheese), and attached to the masseter nerve to give me a smile. It was awesome. Three months later, the muscle twitched; about 5 months the smile came.  After a year plus of being horrified when I looked in the mirror, I felt like myself again.

Just to note - I found reference to him on this page.  It has been incredible help to me to learn about therapies etc for our afflictions.

Tugnutt
42
Archives / Re: Distressing throat tickle makes me cough until I gag...ideas???
« Last post by Occam on June 30, 2024, 11:22:19 am »
"If all you have is a hammer ... everything looks like a nail." - Unbekannt
Do you know what else causes these symptoms? CERTAIN PARASITES.
Just as pinworms release chemicals that cause irritation in order to get a reaction that gets their eggs back into the host; -these little bastards cause irritation to get you to cough - cough so hard you vomit (they want to catch a ride OUT of the body). This is why so many people experience the "throat tickle" soon after eating.
While it is true that nerve injury can cause coughing - you need to look to see if there is a PATTERN to the coughing.
This type of infection has been on the rise over the last decade and is often misdiagnosed.
Talk to your doctor to see if s/he may have more specific info on the types & number of parasites that do this.
If not, ask to do a broad antibiotic sweep starting with ivermectin, doxycycline & pyrantel palmoate. Take note of which med cycle seems to eliminate the symptoms & then report back here. Best wishes.

 
43
Radiation / Radiosurgery / Re: My personal gamma knife experience 1-24-13
« Last post by robinb on June 26, 2024, 03:46:57 pm »
Life must be good if I totally forgot my 11 year ANniversary of my Gamma Knife treatment. Came and went in January!

I'm amazed at how many times this thread has been viewed. I am a Peer Mentor, so reach out if you want to connect to talk about my experience, and yours.
44
Hi Toliaman,

I am preparing to meet with a newbie tomorrow who mentioned radiation.  I went beck through the archives.  I came across a presentation "Radiation Treatment for Acoustic Neuroma"  (7/27/2022) where at the 13 minute mark he shows four options of radiation.  He then goes on to state that there is little difference on the machines.  He states, which I always believe, is that if you own a CK you will say CK is the best....

I hope everything is good with your mom.

Dan
45
Radiation / Radiosurgery / Re: Radiation for fast-growing tumor?
« Last post by bfoley on June 26, 2024, 04:14:20 am »
It sounds very promising!  Know that we are pulling for you, and please keep us informed of your progress!
46
Radiation / Radiosurgery / Re: Radiation for fast-growing tumor?
« Last post by RGG on June 25, 2024, 09:26:20 pm »
Thanks for your replies.  After consulting with another surgeon, it became clear that radiation was my only option, as they didn't want to do repeat surgery before I try radiation first (I'm in Canada, so I don't have many surgeons to choose from).  Radiation oncologists seemed to think that radiation works better on fast growing tumours, even though I read studies that showed the opposite for vestibular scwhannomas.

Anyway, I ended up doing GK at the Toronto Western Hospital two weeks ago. They recently got the latest Esprit machine, and I had a choice between the frame and mask, but it sounded like the frame might be a bit more accurate, so I decided to go with that.  Treatment was quite easy, 30 minutes total.  The worst part was a really bad headache after they removed the frame that they gave me some painkillers for, but once I got home I was fine and didn't need to take anything.  I was warned about feeling tired for a few days, but felt normal the next day and haven't had any symptoms since.  So now I wait, I'm feeling a bit sceptical, but hopefully it works :)   
47
ANA Meetings / Patient Education Event - Saturday, Oct. 5, 2024
« Last post by Director on June 25, 2024, 10:17:11 am »
SAVE THE DATE!

Patient Education Event
Saturday, October 5
Santa Monica, CA

Hosted by Pacific Neuroscience Institute

This in-person event will feature a full day of patient education, networking, and support.

More information at www.anausa.org/pni.

Hope to see you there,

The ANA Team
48
Caregivers / 2 years on
« Last post by pudding on June 24, 2024, 03:56:44 am »
Hi I really need some help my husband had brain surgery for a acoustic neuroma a couple of years ago and it has been a really rough 2years he had to change jobs as he could no longer do his original job as the operation left him with balance issues and no control of his left hand. He hates the job he does now and is moody and he has outbursts. He has now decided to sell the house and wants to go separate ways. I know he has a lot of anger in him and he needs help but won’t admit it so the situation right now is unbearable I don’t know what to do I have pleaded with him to get help to talk to someone but he won’t, and I know the dr won’t talk to me about him so I don’t know what to do. He can be really nasty and is very paranoid but he thinks I am just making it up I really need to do something but I don’t know what and I can’t go on like this any longer any help appreciated thanks. Also I am in the uk.
49
Inquiries / Re: Medical marijuana for AN tumor control or elimnination?
« Last post by sahamojiop on June 24, 2024, 01:24:14 am »
My uncle tried using CBD to treat nerve pain. I found it quite effective at first. Then, later on, my uncle complained of pain again, but when he examined me, the doctor said it was gone.
50
Inquiries / Re: finding a doctor
« Last post by DanFouratt on June 23, 2024, 03:19:29 pm »
The presentation was 3/4/24 by UCSD, worth the time.

Dan
Pages: 1 ... 3 4 [5] 6 7 ... 10