Hi i'm new

[Guest guest]

Welcome to the group, Angie.

We will keep you and Cody in our prayers. Take care and let us know how it

goes next week.

God Bless.

Terri

Hi I'm new

> They found my son't first c-toma at 6 years old. That was in his

> right ear, knock on wood, it's still clear till the present time.

> The following year the removed a small pearl from his left ear. It

> is also doing well. Has anyone heard anything about it being

> hereditary? We got him on the right track, and I went to the ent for

> my allergies. You see my allergies built fluid up on my ears pretty

> regularly. Guess what? I had my first c-toma surgery 4-30-01. It

> was large, and pretty close to my brain. I had been so watchful of

> Cody, that I ignored my own problems. The did a radical, took out

> the bones, replaced my eardrum. They won't replace the bones till I

> am free of the c-toma for a couple years. I have been having trouble

> since August. They are doing my second surgery this Monday,12-10-01.

> I don't like it and dread it like hell. But am thankful it's me and

> not Cody. He's only 8, and has had six ear surgeries. Only two have

> been for c-tomas. Two of his were tubes, two were reconstructive(his

> ear drums were deteirating(spelled?) I'm so happy I found this

> site. It's nice to know that we are not alone.

> Angie

> PS I loved the picture with the mask. Cody's kindergarden teacher

> was a bitch about everything.

>

>

>

[Guest guest]

Hi Angie,

Welcome to the group !! So strange to hear about this maybe being

hereditary. Makes me worry and wonder about my own children. My son

when he was a baby had a lot of problems and ear infections.

I also had what you had, large c-toma very close to my brain. I

was getting really bad dizzy spells, even while sitting down and

terrible migraines. Thankfully things have been going ok since this

past April when I had my surgery although my ENT did mention he saw

some white stuff in my ear the last check up. I'm just hoping it's

not a re-occurence.

Anyways welcome to the group, and my thoughts are with you and

Cody.

Kim

> They found my son't first c-toma at 6 years old. That was in his

> right ear, knock on wood, it's still clear till the present time.

> The following year the removed a small pearl from his left ear.

It

> is also doing well. Has anyone heard anything about it being

> hereditary? We got him on the right track, and I went to the ent

for

> my allergies. You see my allergies built fluid up on my ears

pretty

> regularly. Guess what? I had my first c-toma surgery 4-30-01.

It

> was large, and pretty close to my brain. I had been so watchful

of

> Cody, that I ignored my own problems. The did a radical, took

out

> the bones, replaced my eardrum. They won't replace the bones till

I

> am free of the c-toma for a couple years. I have been having

trouble

> since August. They are doing my second surgery this Monday,12-10-

01.

> I don't like it and dread it like hell. But am thankful it's me

and

> not Cody. He's only 8, and has had six ear surgeries. Only two

have

> been for c-tomas. Two of his were tubes, two were reconstructive

(his

> ear drums were deteirating(spelled?) I'm so happy I found this

> site. It's nice to know that we are not alone.

> Angie

> PS I loved the picture with the mask. Cody's kindergarden teacher

> was a bitch about everything.

[Guest guest]

Dayna,

I'm very sorry to hear about your kids. I don't really know anything to tell

you,because I have never experienced anything like that,but I wanted to

say,welcome to the group,and I'm sure someone on here can help you. Do your

kids go to a pediatric rheumy? What is Raynauds? Do your kids take any meds?

Sorry I couldn't be of any help,,but know that I'm thinking of ya'll .

Kim and Logan (almost) 5

[Guest guest]

Dayna,

Welcome to the group.

You do have quite an interesting situation. It sounds as though all of your

kids at 11 started doing this. Is JRA all they found? Other than with your

oldest son? It sounds to me like it would definately be something more.

Well I am glad you found us, and yet sorry that you had to. Best of luck to you

guys. I wish I could be of more help. Hopefully someone here will have some

idea.

Teddy bear hugs and love,

Casaria and Tasie

---------------------------------

[Guest guest]

Dear ,

Welcome to this group. There are some wonderful people here who have great

knowledge and wisdom. I've gained tremendously from their expertise. Tell us

more about yourself. Do you suffer with epilepsy? What type(s)? What

medications do you take?

We're eager to learn more about you.

Best wishes,

Carrol

Chirokid <chirokid@...> wrote: i'm very interested in everyone's

experiences.

paul.

[Guest guest]

In a message dated 2/6/2003 7:02:15 AM Pacific Standard Time, n2dance@...

writes:

> My naturopath has me on a very low dose of t4 .075 I believe -

> (Unithroid is the one I take now) and a specially compounded

> time-release t3. Once I tried to get a conventional doctor to

> prescribe the special t3 for me, so I could stop paying the naturopath

> $220 an hour just to talk to him on the phone, and the MD told me I

> would have to see the Psychiatrist.

>

Dear Beth,

Go to www.wilsonsthyroidsyndrome.com. They have a list of doctors familar

with the " special T3 " under the Patient Area. You might find one near enough

to you that you would be able to switch from your naturopath. The timed

release T3 has given me my life back after a long history similar to yours!

Good luck!

in LA

[Guest guest]

Thank you .

> In a message dated 2/6/2003 7:02:15 AM Pacific Standard Time,

n2dance@a...

> writes:

>

>

> > My naturopath has me on a very low dose of t4 .075 I believe -

> > (Unithroid is the one I take now) and a specially compounded

> > time-release t3. Once I tried to get a conventional doctor to

> > prescribe the special t3 for me, so I could stop paying the naturopath

> > $220 an hour just to talk to him on the phone, and the MD told me I

> > would have to see the Psychiatrist.

> >

>

> Dear Beth,

>

> Go to www.wilsonsthyroidsyndrome.com. They have a list of doctors

familar

> with the " special T3 " under the Patient Area. You might find one

near enough

> to you that you would be able to switch from your naturopath. The

timed

> release T3 has given me my life back after a long history similar to

yours!

>

> Good luck!

> in LA

>

>

>

[Guest guest]

Hi Gabby.. Welcome to the group. Looking forward to hearing more from you. -dz-fowlereagles2004 <fowlereagles2004@...> wrote:

Hi I'm new I have hep c, from a blood trans. I'm 19 and in college. My name is Gabby.

[Guest guest]

Hi ,

You wrote:

> ... so intense and who has this need to analyze people,

> situations and life .........

> I also deal with depression sounds like I'm my worse enemy .

> can any one give me some help in changing my thinking

What is it about the need to analyze people, situations and life that

adversely affects you? (This could be a *good* thing to analyze :-)). You

could then try tapping on everything that comes up, e.g.:

" Even though analyzing makes me ..., I deeply and completely accept myself. "

Personally, I like analyzing; people, life, anything, and get pleasure out

of it, so I don't regard the need to analyze by itself as bad, there must be

something else as well.

A slightly further afield suggestion in terms of changing your thinking:

Take a look at some of the Abraham quotes posted to this list, especially

from Dayu, and http://abraham-hicks.com/. If these don't connect, don't

worry, maybe it will be useful some time later. It took me over 2 years to

be at the point of connecting with what was being said.

All the best,

Alistair.

[Guest guest]

In a message dated 4/23/2006 9:46:00 A.M. Central Standard Time, rayl2340@... writes:

Good Morning Everyone,I'm new to this board. I have had a total hip and a total kneereplacement done.The hip in 2003 and the new last June.Doris in SW Illinois

Hi Doris, I'm in very South Indiana. I had a RTKR on Nov 2, 2005, and a LTKR in Feb 2006. I'm very happy with them.

[Guest guest]

Hi Doris,

Welcome! I just had my LTKR done on March 14, I'll be 6 weeks post-

op next Tuesday. The people here are awesome, they've been so

supportive of me...

How are you doing with your hip and knee?

Debra

>

>

> Good Morning Everyone,

>

> I'm new to this board. I have had a total hip and a total knee

> replacement done.

>

> The hip in 2003 and the new last June.

>

> Doris in SW Illinois

>

[Guest guest]

Hi Doris, I just wanted to welcome you to this group they are very nice people and will help you I had a total Hip and Knee replacement done on the right side my hip six years ago and my knee four years ago .Well you have a nice day. SusieCritrkrazy@... wrote: In a message dated 4/23/2006 9:46:00 A.M. Central Standard Time, rayl2340@... writes: Good Morning Everyone,I'm new to this board. I have had a total hip and a total kneereplacement done.The hip in 2003 and the new last June.Doris in SW Illinois Hi Doris, I'm in very South Indiana. I had a RTKR on Nov 2, 2005, and a LTKR in Feb 2006. I'm very happy with them.

[Guest guest]

Hi Marci and welcome to the group!

I think you have found yourself in a group of people that know

exactly what you are going through and while we are all sorry you

need the support....we are here for you.

You sound like you have the " classic set " of debilitatiing symptoms

that befell most of us. I am about 14 months past revision surgery,

and while I too was frightened by the pain and loss of function prior

to surgery I am feeling pretty good right now. I do feel that the

future is much brighter although I accept that I will have to work to

keep and maintain what I currently have, and that will problably

involve some plain old good luck for me too.

Are you in the New England area still? There are a number of us

clustered around Boston. Where are you at with your doctors in

getting help with your pain or referrals if necessary?

Glad you found us, you don't have to go through this feeling like

the " lone ranger " . We always ask that new members, once they feel

comfortable, to make one posting summarizing there

personal " scoliosis journey " ...then we post it into the file

section/member stories with a link to that posting. We then have a

handy refrence for remembering the details of someone else's past. It

is also a good place for new members to " dig in " and review " who is

who " as it can get copnfusing...we have a few 's, Diane's, and

Carol's!

Please ask anything you want...don't be shy...you get what you put

into a group like this.

Take Care, Cam

[Guest guest]

Hi Marci. Welcome. As Cam said, I believe, your story sounds VERY

much like most of ours. I am glad you found this forum; it is an

amazing asset for folks like us. Take care, Marty

--- <marci_1200anne@...> wrote: ... find it very hard to work for a

living. It has been a slow steady process of getting worse over the

> years, losing abilities, first lifting and now standing for any

length of time.

[Guest guest]

--- No I'm not living in New England anymore. I'm living in Seattle

now.

[Guest guest]

In a message dated 7/16/2006 7:43:55 AM Central Standard Time, marci800_351@... writes:

I wish I could be normal, that's all I've ever wanted.Love to all of you who know of the plight, if it wern't for you I would die bye now. Love, Marci

I had mine done in 1962. I have animals that keep me going. They need me to care for them. I am lucky to have a husband that helps me. He understands the health problems I have because of my back. There are days I feel I can't make it one more day. I think about my animals and keep going. I have 2 children and 3 grandchildren. We have been married almost 30 years. When I get depressed I think about all the good things in my life. Humans can care for their self. My animals need me. JC

[Guest guest]

Dear Marci,

Welcome to the group! I'm so sorry that DDD had reared it's ugly head, but at least here you are among fellow sufferers and friends. Where are you located? Who is treating you? A lot of us have had trouble getting those around us to realize just how hard dealing with Flatback and DDD can be. If you can't do basic things in your life because of pain, yes you are disabled. SSD can be very tricky, you will probably need a lawyer to apply again and to get to a very experienced spine doc that deals with this problem to help with paperwork etc. I personally haven't tried this route, I haven't worked enough to qualify, but I know many get denied a few times before they get it. Hopefully someone in the group more experienced with this will chime in.

I know that it's so hard to have people pooh-pooh off the troubles you are having, I've been there. A lot of people have that" Come on, pick yourself up by the bootstraps" mentality, and this isn't something where you can. I have endured tons of stories, of my friend this, or my cousin that, who have had one level fused. So I got busy and printed out pages of flatback material to hand to people who were disbelieving, my biggest troubles was among my extended family. I was a push through the pain girl for years til I finally got to the point where it just wasn't possible anymore, and then I got the lazy comments, or why doesn't she just work, etc. Hard to deal with that crap when you are in pain. I have a very supportive doc, who even offered to " Help" family "Get it", didn't take him up on it, but sometimes wished I had.

I'm glad you are here, so many here will totally " Get" your story, and you'll have many to get great advice from on how to deal with this. We aren't doctors just people living with this, and we are here to help!

Colorado Springs

[ ] Hi I'm new

Hello to everyone! I had my surgury in 1980 spinal fusion with harrington rod. I now have DDD and quite limited to what I can do, as for work and even shopping and taking care of myself. I'm sure you all know the drill. I find it so hard when people that don't have this problem judge, they say oh you can walk, why can't you work? It is so hard to have to keep explaning to people my problems.I have applied for SSD 2 times and have been denied, I do telemarketing to pay the bills, it is very depressing. People treat me with judgment because I have a disability, they don't belive it, they think I am making it up because I'm just lazy and don't want to work.They don't know I do want to work, I wish I could be normal, that's all I've ever wanted.Love to all of you who know of the plight, if it wern't for you I would die bye now.Love, Marci

[Guest guest]

Hi, and welcome, Marci.

If you have Harrington rod fixation/fusion down into the lumbar you may also have flatback. Maybe even if it doesn't extend into the lumbar -- don't know but I think that makes it much less likely. You may already know this, but I'm telling you that just because a doctor doesn't tell you you have flatback, that doesn't mean you don't have it. The lower the fusion extends the more likely, in general, that you have it. You need to see a surgeon (if you haven't already) who specializes in the problems of adult, fused, scoliosis patients. This group is a great resource to help you locate such a specialist.

Best of luck to you in your quest for a more livable life. We're here to help you with it. And as far as people who don't "get" that you are disabled? It's easier said than done, but don't let the turkeys get you down!

Sharon in NH

1971, T4-L5

40 days until revision!

[ ] Hi I'm new

Hello to everyone! I had my surgury in 1980 spinal fusion with harrington rod. I now have DDD and quite limited to what I can do, as for work and even shopping and taking care of myself. I'm sure you all know the drill. I find it so hard when people that don't have this problem judge, they say oh you can walk, why can't you work? It is so hard to have to keep explaning to people my problems.I have applied for SSD 2 times and have been denied, I do telemarketing to pay the bills, it is very depressing. People treat me with judgment because I have a disability, they don't belive it, they think I am making it up because I'm just lazy and don't want to work.They don't know I do want to work, I wish I could be normal, that's all I've ever wanted.Love to all of you who know of the plight, if it wern't for you I would die bye now.Love, Marci

[Guest guest]

Hello , Thanks for

your response. I've had

other ID's before.

I'm from Massachusetts

and now living is

Seattle. I havn't seen a

doctor in years I did

see a spine surgon back

east and went through

all the disability stuff

twice. And was turned

down flat, they always

say well you can't do

lifting and stading for

long periods, but you

can do something.

The only something I

can do is telemarketing

right now and I can't

toerlate sitting in a

chair for mor than 4

hours at a time.

I am trying to learn

more about computers

because that may be the

only hope I have to get

a part time job other

than telemarketing wich

I 'm not even very good

at.

I feel guilty going to

the doctor because I

don't have health

insurance, I get free

care, but I don't want

anyone in my life to

know that because THEIR

taxes are paying for it.

I have actually had

people say that to me.

Well enough of my

whinning. Thanks again

I will try to

check in to the group

more often, I really do

need the support.

sincerly,Marci

[Guest guest]

Dear Marci,

You are exactly the kind of person that this type of medical help was designed for, someone who needs a hand up, so don't feel guilty getting medical help, you need to get to a very good spinal surgeon who deals with this. Just cause you were denied SSD in the past years ago, doesn't mean you will be again, since from reading your post you have obviously progressed. You need to get to a good spine doc to see exactly whats going on with you. People in your life who would make comments like that to you, don't have your best interests in mind, afterall if you were treated and doing better you would be able to be more productive and support yourself better.

There are ways to get to good doc's, first start calling to see if any of the " Big Gun" surgeons do some type of help for patients without medical insurance, since many do charity work outside the country I'm sure they see some patients without insurance here. I know you can get flights to see doc's out of state with Angel Flights, or another program that gets donated Airline tickets for those who qualify. Carla Kay came out to Denver to see my surgeon this way, she came out here from West Virginia. So while things look hopeless, anything can be worked around. You need to find out exactly what going on with you, so you can get on with your life.

First start locally with what doc's are in your state program. Get to a spine guy through that program, while I don't know Washington, if there are any qualified doc's there, at least that would be a jumping off point to get a referral. While you have challenges with your insurance, don't let that stop you, I fully believe there are ways to get around everything.

Hope this helps!

[ ] Re: Hi I'm new

Hello , Thanks for your response. I've had other ID's before. I'm from Massachusetts and now living is Seattle. I havn't seen a doctor in years I did see a spine surgon back east and went through all the disability stuff twice. And was turned down flat, they always say well you can't do lifting and stading for long periods, but you can do something.The only something I can do is telemarketing right now and I can't toerlate sitting in a chair for mor than 4 hours at a time.I am trying to learn more about computers because that may be the only hope I have to get a part time job other than telemarketing wich I 'm not even very good at.I feel guilty going to the doctor because I don't have health insurance, I get free care, but I don't want anyone in my life to know that because THEIR taxes are paying for it. I have actually had people say that to me.Well enough of my whinning. Thanks again I will try to check in to the group more often, I really do need the support. sincerly,Marci

[Guest guest]

Hi Rita,

Welcome!

I'm a neck person,too. 3 discs in my neck, one touching the spinal cord.

Didi you have the epidural in the neck? , because my doctor said there were

very few doctors who would do it that high up in the spine, because it's very

dangerous.

I'd like to know if so, how was it?

Dee

Rita <ritawillbe135@...> wrote:

I'm 33 and I 3 buldging discs in my neck one is touching my spinal

cord,I also have a prodruting disc in my lower back .Been through

therapy 4 times without any major relief ,going to have my 3rd epidural

injection on the 18th,neuro sergeon says there's a 50% chance surgery

will work anyways I'm just wondering is this what it's going to be like

for the rest of my life?Are any of you that suffer from the same

problems able to work?I find it hard to do the simplest things .

Thank you for letting me joing this group

Rita

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

[Guest guest]

Hi Rita,

Welcome!

I'm a neck person,too. 3 discs in my neck, one touching the spinal cord.

Didi you have the epidural in the neck? , because my doctor said there were

very few doctors who would do it that high up in the spine, because it's very

dangerous.

I'd like to know if so, how was it?

Dee

Rita <ritawillbe135@...> wrote:

I'm 33 and I 3 buldging discs in my neck one is touching my spinal

cord,I also have a prodruting disc in my lower back .Been through

therapy 4 times without any major relief ,going to have my 3rd epidural

injection on the 18th,neuro sergeon says there's a 50% chance surgery

will work anyways I'm just wondering is this what it's going to be like

for the rest of my life?Are any of you that suffer from the same

problems able to work?I find it hard to do the simplest things .

Thank you for letting me joing this group

Rita

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

[Guest guest]

Hi Dee!

Thank you!Yes I had the epidural injection in my neck .I was scared and it

hurt a little ,but I'm willing to try anything to stop hurting.The first

injection I had lasted for 2 months ,it was so great not having that constant

pain in my neck, arms, chest etc..The second didn't work ,I'm having another on

the 18th.What does your doc do for you?

Rita

Green Darner <swampgirl55@...> wrote:

Hi Rita,

Welcome!

I'm a neck person,too. 3 discs in my neck, one touching the spinal cord.

Didi you have the epidural in the neck? , because my doctor said there were very

few doctors who would do it that high up in the spine, because it's very

dangerous.

I'd like to know if so, how was it?

Dee

Rita <ritawillbe135@...> wrote:

I'm 33 and I 3 buldging discs in my neck one is touching my spinal

cord,I also have a prodruting disc in my lower back .Been through

therapy 4 times without any major relief ,going to have my 3rd epidural

injection on the 18th,neuro sergeon says there's a 50% chance surgery

will work anyways I'm just wondering is this what it's going to be like

for the rest of my life?Are any of you that suffer from the same

problems able to work?I find it hard to do the simplest things .

Thank you for letting me joing this group

Rita

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

[Guest guest]

Hi Dee!

Thank you!Yes I had the epidural injection in my neck .I was scared and it

hurt a little ,but I'm willing to try anything to stop hurting.The first

injection I had lasted for 2 months ,it was so great not having that constant

pain in my neck, arms, chest etc..The second didn't work ,I'm having another on

the 18th.What does your doc do for you?

Rita

Green Darner <swampgirl55@...> wrote:

Hi Rita,

Welcome!

I'm a neck person,too. 3 discs in my neck, one touching the spinal cord.

Didi you have the epidural in the neck? , because my doctor said there were very

few doctors who would do it that high up in the spine, because it's very

dangerous.

I'd like to know if so, how was it?

Dee

Rita <ritawillbe135@...> wrote:

I'm 33 and I 3 buldging discs in my neck one is touching my spinal

cord,I also have a prodruting disc in my lower back .Been through

therapy 4 times without any major relief ,going to have my 3rd epidural

injection on the 18th,neuro sergeon says there's a 50% chance surgery

will work anyways I'm just wondering is this what it's going to be like

for the rest of my life?Are any of you that suffer from the same

problems able to work?I find it hard to do the simplest things .

Thank you for letting me joing this group

Rita

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

[Guest guest]

Hi Rita and Dee,

I'm another new member with a prominent herniated cervical disk (C6–7)

that is pressing on my spinal cord. The pain and discomfort are

manageable—not great, but I still work and get around. My spine

specialist is surprised it doesn't hurt a lot more, but after months

of physical therapy my progress is stalled and he thinks I should

consider fusion surgery. Is that something your doctors have brought

up? I'm reluctant to go that route because I hear it increases the

likelihood of problems in adjacent disks, and I don't want to face

more surgery down the road.

Steve

> I'm 33 and I 3 buldging discs in my neck one is touching my spinal

> cord,I also have a prodruting disc in my lower back .Been through

> therapy 4 times without any major relief ,going to have my 3rd epidural

> injection on the 18th,neuro sergeon says there's a 50% chance surgery

> will work anyways I'm just wondering is this what it's going to be like

> for the rest of my life?Are any of you that suffer from the same

> problems able to work?I find it hard to do the simplest things .

>

> Thank you for letting me joing this group

> Rita

>

> ---------------------------------

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

>

>