MDJunction - People Helping People
 
Ask a Question
12/29/2010 11:25 PM

More Good News

cmiller
cmiller  
Posts: 863
Member
I'm an Advocate

Hello Everyone,

I may have the best news EVER! I can't keep it to myself. I THINK my noise sensitivity is decreasing. OMG please let this be true.

First off... this surgery recovery is so much easier this time. I guess last time the right surgery flared up the left side and it was a slow painful recovery. I am feeling much better. By gosh I think this just may be my cure.

So, being very bored so bored that on xmas day I sat and watched Shirley Temple reruns, I decided to take the risk today to go out to Costco for the monthly shop with my dear husband.

Normally, this leaves me in pain and exhausted from all the noise; half the time not making the full shop and going to wait in the car and then running for a dark quiet room afterwards. Today my husband kept watching me and I was doing quite well. I thought he was just concerned about how I was handling it post surgery and then half way through he said... you aren't screwing your face up in pain with noises as we pass and that I hadn't grabbed my head in pain for over 20 minutes. I said wow I hadn't noticed!

I had a huge smile on my face the rest of the trip. I then thought about it and hadn't grabbed for the remote to mute the adds for a few days. I did notice during the afternoon some noises did cause pain, and felt that as I got more tired the nerves started feeling the noise more but hey this is a fantastic start just nine days after surgery.

Please all think positive for me this is a huge thing almost as big as the ON itself. It has really decreased the quality of life over the past few years.

This may just be my BEST new years gift ever! Any decrease is so welcome. I hope it keeps getting better.

hugs and best wishes to all

Chloe

Reply

12/30/2010 06:20 AM
Teah
Posts: 151
Member

Chloe, congratulations! What a wonderful gift I'm sure this is for you, I hope it continues to get better and better for you, keep us posted! See I told you, you'd be able to endure a shopping trip sooner than you thought possible, yay!

12/30/2010 07:52 AM
brugette
brugette  
Posts: 941
Senior Member

Chloe, I AM SO HAPPY FOR YOU, YEA!!!! Sorry, but yes I was shouting since you can take it more now, lol. This is the news I was waiting to hear from you. I so understand the hubby watching for the facial signs of pain and the smiling so much. Continue to heal quickly and get your life back.

Happy New Year to all,

Patty


12/30/2010 12:58 PM
JustBreathe81
JustBreathe81  
Posts: 61
Member

SO happy for you!

12/31/2010 07:50 AM
Scotti
ScottiPosts: 10
New Member

Chloe, You are the example I carry with me every day, your surgery and results are my inspiration. Now I know what is possible and I must keep trying. I am at a crossroads now, I must file for medi-cal and SSI as my life has been destroyed by ON, and I cannot work. I have spent my retirement dealing with this, and all that is left is hope, and because of you, and what I have learned here, hope is something I have lots of.

I bet your guy is thrilled to have his girl back, good luck.


12/31/2010 10:11 AM
cmiller
cmiller  
Posts: 863
Member
I'm an Advocate

Scotti, I am so fortunate that a surgery for an anterial discectomy led me to this doctor doing this microsurgery. He is training other doctors and I believe that eventually this surgery will be available to everyone. It has to!

I met a lovely lady through this forum (a lurker) who had struggled with ON for over 4 years and who's health insurance (kaiser) refused to pay for her surgery. After we spoke on the phone about my surgery and also finding out she lives very close to where the surgery was done, she went to the government health management agency to make kaiser pay for the surgery and was denied most probably because the surgery is deemed experimental. The fantastic news is she is having the surgery done by Dr. Bray on January 10 FREE OF CHARGE.

Dr. Bray told her that the only thing he needs from her is to do what "chloe" has done and spread the word that this disorder can be cured. She calls me her angel because I helped her. This is just the start.

My goal is to pass on the word. We need doctors to listen and know that people can be cured. I am still recovering but when I feel well enough I will do more to pass this on. Seeing my friend from this forum get the surgery is all the motivation I need that I can indeed help others.

My husband is very tentatively happy. I have to believe the sound sensitivty is going away to keep going. I just have to.

Please hold on to your hope. I am so sorry your life has been destroyed. People do not understand how debilitating this disorder is. They just can't imagine what it is like living with our pain.

I always thought of myself as a very compassionate person but now know that I could not have imagined how bad this ON could be before I got it myself because I had only had about 15 headaches in my life and they were when I had colds and flu.

I am still struggling with family about my surgeries. They don't understand the recovery process. I have now come up with a way to explain it better. I tell them that the Occipital nerve is like the trunk of a tree and ON feels like an axe is constantly chopping at that trunk causing pain that travels up to the top of every leaf each time my heart pumps that is the axe. The branches are my nerves that travel right into the tips of every hair follicle (the leaves)Thousands of tiny nerves feel that axe's every stroke. From the day I got this ON that axe never stopped and every few minutes that whole tree shook from the constant trauma...feeling hot electric shock type pain over the whole tree (the large spasms, sometimes hundreds per day).

Now, after surgery, the tree right up to the tip of it's leaves has to heal from years of trauma. It doesn't happen over night after surgery... it takes. time because nerves heal slowly.

In my case it never stopped from the moment it started. I understand that some ON surrerers get some gaps in their pain but it feels similar when they do have it. It's shocking!

I have received the gift of a chance to join back into society by these surgeries and I will not stand by doing nothing to help others receive that same gift.

Please join me to hope that the next year brings relief to ON sufferers around the world.

Chloe

Post edited by: cmiller, at: 12/31/2010 10:18 AM


01/02/2011 05:15 PM
Trixi
Trixi  
Posts: 665
Member

Hi Chloe - haven't been around but am SO VERY HAPPY to hear that you are continuing to do so well! Big shopping at Costco - that's quite a feat!

Hubby and I are sick - my ON's been killing me...I have no energy and just couldn't stand to look at the computer as my eyes are hurting me too. Sorry I've not been around much.

My continued prayers and wishes for a speedy and full recovery!

Hugs

Trixi


01/03/2011 09:49 AM
cmiller
cmiller  
Posts: 863
Member
I'm an Advocate

Trixi,

Best wishes for the new year. Last year was pretty miserable for you and then the "best *cough *doctors incident had to be so hard on top of everything else. I hope your breakthrough with all your complicated illnesses will come this year. Please take care. I think of you daily. Don't worry about when you can get on to post. Let's hope this is YOUR year.

Gentle Hugs,

Chloe


01/05/2011 02:00 AM
Arlet
ArletPosts: 165
Member

Chloe, that's fantastic, and I truly hope the sound sensitivity continues to go and stay away! Isn't it wonderful when you can just be yourself and not think about your head pain? Those days, however (in)frequent they may be, are the ones that make life living, and I wish all of us more and more of them!

01/08/2011 10:33 AM
annieohio
annieohioPosts: 131
Member

I'm so happy for you Chloe! It must be wonderful to be losing that noise-sensitivity also Smile You're giving us all hope for a better future Wink

Annie

Reply

Share this discussion with your friends:
<< Start < Prev 1 Next > End >>


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved