Thanks everyone

[Guest guest]

melanie, hang in there. marsha

[Guest guest]

You got it right, there is always hope, and remember,

this is classified as a slow virus so it's not likely

to do anything sudden and dramatic to you . So relax a

little and keep your hopes up, OK?

Michele

--- screamingbanshe2001 <abbr381@...> wrote:

> thanks for the warm welcome since i strated down

> this path months ago

> my nerves have been on edge almost constantly

> sometimes i give my mind

> a information overload with all the stuff i read

> online but i have

> always been that way have to know the who what and

> wheres about

> everythingbut sometimes i drive myself and everyone

> around me a little

> crazy with it its just that when they start talking

> life and death

> with this diesease it kind of scraes the hell out of

> mei have had a

> couple of freind that died from liver desiese so a

> kind of have aidea

> of what can happen i know they have come a long way

> with differt

> treatmeants and find more all the time so for now i

> am just going to

> keep my head up do what the docters say and hope for

> the best so best

> of the holidays to everyone and keep strong there

> is always hope

>

>

>

>

__________________________________________________

[Guest guest]

>

> Thanks for the help on giveing me the name of (pendulum dowsing) I

just never knew the correct word for it, Now I can go on and do the

research. I have recommened this group to others who suffer from other

groups I am on, because it has helpe me so much. You are a God Send

> Bee. DEbbie

==>You are welcome for the help. Thanks for recommending our group to

other groups. I'm glad I'm a God Send. Awe shucks.

Bee

[Guest guest]

,

It is a time of high anxiety. It is very normal to feel that way. It

is a big surgery and a long recovery. But you are well informed about

what lies ahead, and you look like you have a great suupport system in

place to help you after you come home and that will really help you

start down the road to recovery.

I will be that in no time at all you will find that you are once again

the life of the party. It is hard to be funny when you are hurting

with every breath. And it takes a lot of time and patience to keep

explaining to everyone that this is not your " sister-in-laws " back

problem, so naturally you pull in a little.

Just do your best to let it roll. Before you know it it will be behind

you and you will be feeling much better.

Take Care, Cam

[Guest guest]

Dear Debbie,

Applying for SS disability can be daunting, many get turned down multiple times, you may need to get a lawyer that specializes in this type of law, but it is doable. I think they deny, deny , and hope you just give up, anything worthwhile is worth fighting for.

Glad you do have options for doc's in Florida, if you get to O'Brien, tell him a big Howdy from Kirkaldie in Denver, he and Dr. Kumar put a lot of work into me, three surgeries, thankfully I'm doing terrific. Know there is hope, and these doc's will be real honest with you on what improvement you can hope for. Know many of us were told to live with this, and in my case I just trodded on to find SOMEONE who could help and actually had a name for what was going on, and had a plan. I'm holding good thoughts for you as you begin this journey, it's a struggle, but worthwhile if you can reduce your pain and disability.

Colorado Springs

[ ] Thanks Everyone

I want to thank everyone for providing information on more doctors and taking the time to make we feel welcome. I had pretty much just given up on having a life. After leaving my job I applied for SS Disability and they turned me down so I have been feeling pretty low. I don't know how they expect me to work when I can only sit for 10 minutes at a time and walk even less than that. All my doctors told me since I was fused there was nothing more they could do for me but pain management and we all know that doesn't work. If I figure out how to post here I will try and put up my story. You all are so encouraging and I look forward to going to a doctor that will look at me and say "I can help you". I now have an appointment with Dr.Hey October 5, 2007 and am going to call Dr. Moreno and Dr. O'Brien for a consult since they are close and on my insurance. I am also going to look into the ones in Atlanta. I am 54 and I know most of you are quite a bit younger than me but hopefully if surgery is recommended I am still in the ball park and haven't already struck out. I hate that I began this journey in 1998 and not one doctor looked at the total picture.Sorry to ramble but you guys are the first people I have ever met that understand all this rambling.Thanks for letting me be a part of your group.Debbie J

[Guest guest]

Debbie,

Don't ever feel you are too old or " out of the ball park " ! Don't you

know that these days 50 is the new 30! I am your age and quite

honestly am grateful that I had over 30 years of no problems. I have

been dealing with the new aches and pains that I never had now since

about November and plan on having surgery early next year (maybe

around February). I plan on having this surgery and getting back to

my life as I've known it to be, because I don't like living with this

pain and taking medications everyday. I know it won't be easy, but I

think with the right attitude and the right doctor (VERY important)

this is just another hurdle to get over. My doctor told me he had a

patient that was in her 60's who was a saleslady in a major NY

department store and that she had the surgery and returned to work!

There is so much truth to the saying " you're as old as you feel " ! I

know that some days with all the pain we have, we can feel very old,

but don't give in to it and know that you can change it. Hope this

helps and please feel free to reach out.

Donna

>

> I want to thank everyone for providing information on more doctors

> and taking the time to make we feel welcome.

> I had pretty much just given up on having a life. After leaving my

> job I applied for SS Disability and they turned me down so I have

> been feeling pretty low. I don't know how they expect me to work

when

> I can only sit for 10 minutes at a time and walk even less than

that.

> All my doctors told me since I was fused there was nothing more

they

> could do for me but pain management and we all know that doesn't

> work. If I figure out how to post here I will try and put up my

> story. You all are so encouraging and I look forward to going to a

> doctor that will look at me and say " I can help you " .

> I now have an appointment with Dr.Hey October 5, 2007 and am going

to

> call Dr. Moreno and Dr. O'Brien for a consult since they are close

> and on my insurance. I am also going to look into the ones in

> Atlanta.

> I am 54 and I know most of you are quite a bit younger than me but

> hopefully if surgery is recommended I am still in the ball park and

> haven't already struck out. I hate that I began this journey in

1998

> and not one doctor looked at the total picture.

> Sorry to ramble but you guys are the first people I have ever met

> that understand all this rambling.

> Thanks for letting me be a part of your group.

> Debbie J

>

[Guest guest]

Hi Debbie, I'm an "oldie but goodie" at 61 and I'll have my revision surgery soon with Dr. Hey. My previous spinal surgeries were done when I was 57 & 59 and I went back to work each time. I'm still working and expect to go back after this surgery too. I too couldn't find a doctor that wanted to do this surgery. My own spinal doctor wouldn't even tell me that I had flatback, I had to find it on the internet, and no one would do the surgery. I found Dr. Hey thru this group and am so thankful! It's so depressing and discouraging to think that there is no better when you have to make an effort just to stand upright or walk. Hang in there. Betty Asbury

[ ] Thanks Everyone

I want to thank everyone for providing information on more doctors and taking the time to make we feel welcome. I had pretty much just given up on having a life. After leaving my job I applied for SS Disability and they turned me down so I have been feeling pretty low. I don't know how they expect me to work when I can only sit for 10 minutes at a time and walk even less than that. All my doctors told me since I was fused there was nothing more they could do for me but pain management and we all know that doesn't work. If I figure out how to post here I will try and put up my story. You all are so encouraging and I look forward to going to a doctor that will look at me and say "I can help you". I now have an appointment with Dr.Hey October 5, 2007 and am going to call Dr. Moreno and Dr. O'Brien for a consult since they are close and on my insurance. I am also going to look into the ones in

Atlanta. I am 54 and I know most of you are quite a bit younger than me but hopefully if surgery is recommended I am still in the ball park and haven't already struck out. I hate that I began this journey in 1998 and not one doctor looked at the total picture.Sorry to ramble but you guys are the first people I have ever met that understand all this rambling.Thanks for letting me be a part of your group.Debbie J

Sick sense of humor? Visit TV's Comedy with an Edge to see what's on, when.

[Guest guest]

Almost all SS disability cases get turned down the first time so don't hesitate to try again. You need to find an attorney that knows how to get it done.

I'm glad you are seeing Dr. Hey. I really like him. I'm also glad you are able to find some closer to home for opinions as well. It helps to have more than one opinion.

Peggy

[ ] Thanks Everyone

I want to thank everyone for providing information on more doctors and taking the time to make we feel welcome. I had pretty much just given up on having a life. After leaving my job I applied for SS Disability and they turned me down so I have been feeling pretty low. I don't know how they expect me to work when I can only sit for 10 minutes at a time and walk even less than that. All my doctors told me since I was fused there was nothing more they could do for me but pain management and we all know that doesn't work. If I figure out how to post here I will try and put up my story. You all are so encouraging and I look forward to going to a doctor that will look at me and say "I can help you". I now have an appointment with Dr.Hey October 5, 2007 and am going to call Dr. Moreno and Dr. O'Brien for a consult since they are close and on my insurance. I am also going to look into the ones in Atlanta. I am 54 and I know most of you are quite a bit younger than me but hopefully if surgery is recommended I am still in the ball park and haven't already struck out. I hate that I began this journey in 1998 and not one doctor looked at the total picture.Sorry to ramble but you guys are the first people I have ever met that understand all this rambling.Thanks for letting me be a part of your group.Debbie J

[Guest guest]

Hey Peggy! I love reading your posts. I'm in awe of your progress!

Note to Debbie J: I'm a patient of Dr. Hey - love, love, love him! I'm also going through the SS disability application process and am a little further down the road in this process, so if you have any questions, please feel free to email me and I will be glad to answer what questions I can, as it can be a very frustrating, long process.

Sincerely, Gross email: lgross1@...

[ ] Thanks Everyone

I want to thank everyone for providing information on more doctors and taking the time to make we feel welcome. I had pretty much just given up on having a life. After leaving my job I applied for SS Disability and they turned me down so I have been feeling pretty low. I don't know how they expect me to work when I can only sit for 10 minutes at a time and walk even less than that. All my doctors told me since I was fused there was nothing more they could do for me but pain management and we all know that doesn't work. If I figure out how to post here I will try and put up my story. You all are so encouraging and I look forward to going to a doctor that will look at me and say "I can help you". I now have an appointment with Dr.Hey October 5, 2007 and am going to call Dr. Moreno and Dr. O'Brien for a consult since they are close and on my insurance. I am also going to look into the ones in Atlanta. I am 54 and I know most of you are quite a bit younger than me but hopefully if surgery is recommended I am still in the ball park and haven't already struck out. I hate that I began this journey in 1998 and not one doctor looked at the total picture.Sorry to ramble but you guys are the first people I have ever met that understand all this rambling.Thanks for letting me be a part of your group.Debbie J

[Guest guest]

Hi Betty and Debbie J -

I am also waiting for my revision surgery date. I've finally

made up my mind to go for it. Nice to see that others in their 50's

and 60's are also going for it. I will soon be 59 and I think about

the problems we are more apt to encounter in revision surgery as we

age, but I also think that we still have a lot of living to do, so

why do it in bad pain, struggling to remain upright, and with such

terrible retrictions. Thanks for the encouragement about

being " mature " and having a serious elective surgery. Elaine

>

> Hi Debbie, I'm an " oldie but goodie " at 61 and I'll have my

revision surgery soon with Dr. Hey. My previous spinal surgeries

were done when I was 57 & 59 and I went back to work each time. I'm

still working and expect to go back after this surgery too. I too

couldn't find a doctor that wanted to do this surgery. My own spinal

doctor wouldn't even tell me that I had flatback, I had to find it on

the internet, and no one would do the surgery. I found Dr. Hey thru

this group and am so thankful! It's so depressing and discouraging

to think that there is no better when you have to make an effort just

to stand upright or walk. Hang in there.

>

> Betty Asbury

>

>

>

> [ ] Thanks Everyone

>

> I want to thank everyone for providing information on more doctors

> and taking the time to make we feel welcome.

> I had pretty much just given up on having a life. After leaving my

> job I applied for SS Disability and they turned me down so I have

> been feeling pretty low. I don't know how they expect me to work

when

> I can only sit for 10 minutes at a time and walk even less than

that.

> All my doctors told me since I was fused there was nothing more

they

> could do for me but pain management and we all know that doesn't

> work. If I figure out how to post here I will try and put up my

> story. You all are so encouraging and I look forward to going to a

> doctor that will look at me and say " I can help you " .

> I now have an appointment with Dr..Hey October 5, 2007 and am going

to

> call Dr. Moreno and Dr. O'Brien for a consult since they are close

> and on my insurance. I am also going to look into the ones in

> Atlanta.

> I am 54 and I know most of you are quite a bit younger than me but

> hopefully if surgery is recommended I am still in the ball park and

> haven't already struck out. I hate that I began this journey in

1998

> and not one doctor looked at the total picture.

> Sorry to ramble but you guys are the first people I have ever met

> that understand all this rambling.

> Thanks for letting me be a part of your group.

> Debbie J

>

>

>

>

>

>

>

______________________________________________________________________

______________

> Need a vacation? Get great deals

> to amazing places on Travel.

> http://travel./

>

[Guest guest]

Thanks everyone for your comments and/or suggestions

re " dry mouth " . Like Tracey, I have to have water

with me all the time. I'm going to try and find some

of the suggested items used. Lottie, I sure wish

Prevident were covered here - we pay $15 for a dinky

little tube. I have to use Sensodyne toothpaste

because of gum recession, along with the Prevident.

I'll try some of the sprays and mouthwashes mentioned.

Well, gotta go and get another drink of water. Bye

for now - it's snowing nice big flakes here in Calgary

and by Sunday we're supposed to have nice warm

temperatures. Hope the winter (or summer, wherever

you live) is going well for everyone.

Thanks again,

Judy

Hugs,

Judy P. in Calgary

__________________________________________________________________

Instant Messaging, free SMS, sharing photos and more... Try the new

Canada Messenger at http://ca.beta.messenger./

[Guest guest]

Hi Judy,

I wonder if anyone has recommended Biotene products to you? I use these and

find them

very helpful. http://www.biotene.com/products/index.asp I buy it at Shoppers

Drug Mart

in Ottawa so I hope you can find it easily in Calgary.

Its crazy cold today isn't it?

Love and Light,

dx 11/98

>

> Thanks everyone for your comments and/or suggestions

> re " dry mouth " . Like Tracey, I have to have water

> with me all the time. I'm going to try and find some

> of the suggested items used. Lottie, I sure wish

> Prevident were covered here - we pay $15 for a dinky

> little tube. I have to use Sensodyne toothpaste

> because of gum recession, along with the Prevident.

> I'll try some of the sprays and mouthwashes mentioned.

>

> Well, gotta go and get another drink of water. Bye

> for now - it's snowing nice big flakes here in Calgary

> and by Sunday we're supposed to have nice warm

> temperatures. Hope the winter (or summer, wherever

> you live) is going well for everyone.

>

> Thanks again,

>

> Judy

>

> Hugs,

> Judy P. in Calgary

>

>

> __________________________________________________________________

> Instant Messaging, free SMS, sharing photos and more... Try the new

Canada

Messenger at http://ca.beta.messenger./

>

[Guest guest]

For .

 

Many times doctor are in dilemma to tell the patient all the disease or avoid telling if it does not cause any harm in future.

Telling a thing which is not going to cause any harm,only add to worry of patient

He had indicated indirectly to hole in bone which separate ear and brain.

Dura is very very tough structure and do not let infection reach the brain- NO Worry.

I remember , 30 to 35 years back, when CT scans were not available, and some extradural abscess was suspected,we used to drill a small hole in bone to see if it is there.

IN brief, NO WORRY at all for this 4mm hole

Good luck

Dr. Gupta Arun, India 

On 7/21/09, clare miranda <loveswt21@...> wrote:

 

Thanks for everyones replys. Unfortunately my doctor is a bigger idiot than i thought. I finally got a copy of my surgical report and come to find out I didn't have the surgery intended because there was another cholesteatoma and 4mm of my dura was exposed!!! that ass didn't bother to tell me anything. He just said that i had a bad infection and it was too deep to reconstruct. I am super pissed. Connecticut has no good doctors...they are all out for money and don't care about health at all.

 

Clare

[Guest guest]

Clare,

We use Massachusetts Eye and Ear Infirmary and have been very pleased

with the great communication. It is a teaching Hospital for Harvard

Medical School, and I have found the docs we deal with are great

teachers in addition to being great surgeons. Good Luck!

On 7/20/09, clare miranda <loveswt21@...> wrote:

> Thanks for everyones replys. Unfortunately my doctor is a bigger idiot than

> i thought. I finally got a copy of my surgical report and come to find out I

> didn't have the surgery intended because there was another cholesteatoma and

> 4mm of my dura was exposed!!! that ass didn't bother to tell me anything. He

> just said that i had a bad infection and it was too deep to reconstruct. I

> am super pissed. Connecticut has no good doctors...they are all out for

> money and don't care about health at all.

>

> Clare