depressed

April 11, 2008

>

That is EXACTLY what they told me Renny, perhaps you should put up the

dosage of your antidepressant they say.... GRRRR! I think this comes

from the School of Silly Medical Ideas International.. they are a

large fraternity.

> Hi,

> Thanks again for the replies. You're right aboout the patronising

Docs! I have been told so many times that depression is causing my

symtoms when I know full well that it's the other way round, the

problem is doctors dont like to be told anything because we are 'not

qualified', but I know my body, I should do I've lived in it long

enough!!!

> I hope you are feeliing well

> Luv Renny

>

> Renny Proudlove

>

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

> for Good helps you make a difference

>

October 24, 2008

Hi Beth,

I think we all have felt or are feeling exactly the way you are. I recently started having panic attacks. I think some of it was triggered from some of the meds I was on but I also think having 3 surgeries in less than a year had something to do with it to. I've gone thru a year of very little hearing. I just recently had surgery to replace the hearing bones in my left ear. I have profound hearing loss (I can't hear people talk at all) in my right ear. The cholesteatoma had destroyed everything so there is not even the hope of rebuilding anything. So, right now while the packing is in my left ear it's been miserable. I bought a dry erase board so my twins and husband could communicate with me. We don't have to use the board as much now. Now then they usually just yell or talk really loudly into my left ear. I too love music so I understand what you are saying. I keep

telling people that it's the little things you miss. For me, it's watching a movie or something on tv and not being able to just walk off and still hear it. I have to sit there and read everything!! It is very frustrating but I just keep telling myself that things will get better!!! If you have hearing loss in your good ear you might need to talk to your doctor about a hearing aide (at least temporarily) to help get you thru. Try and just stay positive and be patient. I know that is such a cliche but what else can we do...LOL!!!!

chin up

JO

From: lyndikhajiit <lyndikhajiit@...>Subject: Depressedcholesteatoma Date: Friday, October 24, 2008, 11:16 PM

I guess maybe I just had a bad day. I'm having a hard time coping with this hearing loss. I went to work today to participate in a fund raiser for a fellow employee's wife. I was chatting it up with them (they all wanted to know about my ear and when I'm comming back) and I just got so frustrated. I can't hear when there is background noise or more than one person talking and people tell me that I sound different, that I'm harder to hear. Does this make sense to any of you? One of the first things I remember loving as a child was music. My parents were hippies, so I was probably listening to Pink Floyd in the womb. I have gained an appreciation for all music since those days. I played the drums in Middle School and High School and was in Marching Band. Up until recently, I still enjoyed playing my drum set from time to time. I spend a lot of time out and about and I don't drive, so I just have

to have my iPod with me. But the music just isn't the same anymore. No music at all is almost preferable to only hearing the music out of one headphone. Its like half of it's missing. I'm just too depressed to even think about playing my drums. I know here in 9 months to a year, I'll have my implants and hopefully have most of it back. But I can't help fearing that when he goes back in there will be more c-toma and he won't be able to put them in, or ten thousand other bad scenarios. It doesn't help that I have been having a hard time sleeping because I can't sleep on my back. I still can't lay on my left side as my ear is still sore and my right ear has started throbbing at night. I don't know whether I should make an appointment to have it looked at now or if I should just bring it up at my 6 week post-op appointment. Its the only ear I have right now and I would be lost without music, let alone

being able to hear my husband and future children tell me they love me. We were almost ready to start trying to conceive when I found out I had this. I put it on hold because I no longer feel physically and emotionally ready. But we had out hearts set. That has been one of the hardest things for me to deal with and its been hard on , too.All this and I tried to cheer myself up by buying myself one of my favorite dinners, only to be painfully reminded that my sense of taste is still screwed up. I'm trying so hard to think of something positive, but the only thing I can come up with is at least I don't have cancer. Well, having people that know what I am going through helps. Thanks for "listening", Beth

October 24, 2008

Thank you for your commiseration. Is that a word? lol. I feel better

knowing that I'm better off than some, but I also am afraid of my

hearing getting like that.

Do you know how well the prosthetics usually work and how long it

should take to get my hearing back?

Thanks, Beth

October 25, 2008

I actually have no idea!! Compared to a lot of folks on here I'm completely new at this..lol. This is my first reconstruction surgery and the doctor said it would be at least 6 weeks before we could tell how much better my hearing is. Sometimes, it's just not in the right place and they can move it. I'm really just not sure!!! I go to the dr on the 30th so hopefully he'll have good news for me!! I'll let you know how it goes.

chin up

Jo

From: lyndikhajiit <lyndikhajiit@...>Subject: Re: Depressedcholesteatoma Date: Saturday, October 25, 2008, 12:19 AM

Thank you for your commiseration. Is that a word? lol. I feel better knowing that I'm better off than some, but I also am afraid of my hearing getting like that.Do you know how well the prosthetics usually work and how long it should take to get my hearing back?Thanks, Beth

October 25, 2008

Hi Beth,

You know, I'm not the one going through this, my daughter is, but I think I feel

worse about the whole thing sometimes than she does... like the little things

you said, it's the little things like music. Masie LOVES music, she was always

dancing around the house and singing made up songs or Hannah Montana (whom she

loves...) and now, she doesn't so much. I don't know if it's because she can't

hear it or if she's a little depressed and doesn't know how to express it, she's

almost 6. I am constantly having to tell her to not do so much because to much

activity makes her ear bleed badly. So her life has come to a halt also. Not

the same as yours, I know, but in a sense the same. I can't imagine what I am

going to have to deal with after her surgery.

I think it is okay to have bad days, sometimes that is the only way to get

through this. But each day is different and a chance for a new start. I will

be praying for you. And you're right, there is always someone here to listen!

Pam

Pamela Waling " smile, it confuses people... "

> From: lyndikhajiit <lyndikhajiit@...>

> Subject: Depressed

> cholesteatoma

> Date: Friday, October 24, 2008, 11:16 PM

> I guess maybe I just had a bad day.

> I'm having a hard time coping with this hearing loss. I

> went to work

> today to participate in a fund raiser for a fellow

> employee's wife. I

> was chatting it up with them (they all wanted to know about

> my ear

> and when I'm comming back) and I just got so

> frustrated. I can't hear

> when there is background noise or more than one person

> talking and

> people tell me that I sound different, that I'm harder

> to hear. Does

> this make sense to any of you?

> One of the first things I remember loving as a child was

> music. My

> parents were hippies, so I was probably listening to Pink

> Floyd in

> the womb. I have gained an appreciation for all music since

> those

> days. I played the drums in Middle School and High School

> and was in

> Marching Band. Up until recently, I still enjoyed playing

> my drum set

> from time to time. I spend a lot of time out and about and

> I don't

> drive, so I just have to have my iPod with me. But the

> music just

> isn't the same anymore. No music at all is almost

> preferable to only

> hearing the music out of one headphone. Its like half of

> it's

> missing. I'm just too depressed to even think about

> playing my drums.

> I know here in 9 months to a year, I'll have my

> implants and

> hopefully have most of it back. But I can't help

> fearing that when he

> goes back in there will be more c-toma and he won't be

> able to put

> them in, or ten thousand other bad scenarios.

> It doesn't help that I have been having a hard time

> sleeping because

> I can't sleep on my back. I still can't lay on my

> left side as my ear

> is still sore and my right ear has started throbbing at

> night. I

> don't know whether I should make an appointment to have

> it looked at

> now or if I should just bring it up at my 6 week post-op

> appointment.

> Its the only ear I have right now and I would be lost

> without music,

> let alone being able to hear my husband and future children

> tell me

> they love me.

> We were almost ready to start trying to conceive when I

> found out I

> had this. I put it on hold because I no longer feel

> physically and

> emotionally ready. But we had out hearts set. That has been

> one of

> the hardest things for me to deal with and its been hard on

> , too.

> All this and I tried to cheer myself up by buying myself

> one of my

> favorite dinners, only to be painfully reminded that my

> sense of

> taste is still screwed up. I'm trying so hard to think

> of something

> positive, but the only thing I can come up with is at least

> I don't

> have cancer. Well, having people that know what I am going

> through

> helps. Thanks for " listening " , Beth

October 25, 2008

Hi Beth,

This is the first time I've replied to someone and only the second post I've

made, not sure

if this will find you or get lost in the other posts, hopefully it will find

you.

I had my surgery on May 19th, Tympanomastoidectomy on my right side. I'm

somewhat

familiar with what you're feeling, everyone's surgery is probably a little

different, but still

resulting emotions are similar.

My hearing bones were almost completely gone, I still have a small bit of the

stirrup left. I

have just a little bit of hearing on the right side. It has gotten better since

the packing has

disintegrated and swelling has gone. I did go back a month ago to have a tube

installed

to allow drainage. To get to your feelings, yes I too had trouble sleeping, I

was told to

keep my head elevated. I believe that was for a month, it was tough, but I got

used to

taking short naps, mostly on the sofa. I too was depressed, felt sorry for

myself, still do at

times. I suppose people are right I should volunteer somewhere but haven't yet.

I was supposed to have surgery this fall to install a prosthesis, but at my last

visit to the

doctor she said she just returned from a seminar in Chicago where she learned of

a new

device much like a hearing aid, but it's attached to you, the best part is it is

covered by

insurance! I guess it will be available in the states somewhere around March

2009. I may

try it. I found a website that talks about it. It's called Baha and can be

found at

www.cochlear.com I don't know if it will work for you, but it's worth looking

at.

I wish you the best, hang in there, things will improve and don't

forget...positive attitudes

help the best! Oh and in my opinion, if you're having pain, call the doctor to

at least talk

to the nurse.

Steve

>

> I guess maybe I just had a bad day.

> I'm having a hard time coping with this hearing loss. I went to work

> today to participate in a fund raiser for a fellow employee's wife. I

> was chatting it up with them (they all wanted to know about my ear

> and when I'm comming back) and I just got so frustrated. I can't hear

> when there is background noise or more than one person talking and

> people tell me that I sound different, that I'm harder to hear. Does

> this make sense to any of you?

> One of the first things I remember loving as a child was music. My

> parents were hippies, so I was probably listening to Pink Floyd in

> the womb. I have gained an appreciation for all music since those

> days. I played the drums in Middle School and High School and was in

> Marching Band. Up until recently, I still enjoyed playing my drum set

> from time to time. I spend a lot of time out and about and I don't

> drive, so I just have to have my iPod with me. But the music just

> isn't the same anymore. No music at all is almost preferable to only

> hearing the music out of one headphone. Its like half of it's

> missing. I'm just too depressed to even think about playing my drums.

> I know here in 9 months to a year, I'll have my implants and

> hopefully have most of it back. But I can't help fearing that when he

> goes back in there will be more c-toma and he won't be able to put

> them in, or ten thousand other bad scenarios.

> It doesn't help that I have been having a hard time sleeping because

> I can't sleep on my back. I still can't lay on my left side as my ear

> is still sore and my right ear has started throbbing at night. I

> don't know whether I should make an appointment to have it looked at

> now or if I should just bring it up at my 6 week post-op appointment.

> Its the only ear I have right now and I would be lost without music,

> let alone being able to hear my husband and future children tell me

> they love me.

> We were almost ready to start trying to conceive when I found out I

> had this. I put it on hold because I no longer feel physically and

> emotionally ready. But we had out hearts set. That has been one of

> the hardest things for me to deal with and its been hard on , too.

> All this and I tried to cheer myself up by buying myself one of my

> favorite dinners, only to be painfully reminded that my sense of

> taste is still screwed up. I'm trying so hard to think of something

> positive, but the only thing I can come up with is at least I don't

> have cancer. Well, having people that know what I am going through

> helps. Thanks for " listening " , Beth

>

October 25, 2008

I just read your post and wanted to respond to your question

concerning your voice. My daughter has had 2 c-tomas and we need to

make plans for the 3. She is very difficult to hear and says she

feels like she is talking really loudly. Your voice level will take

practice, but its quality should take care of itself with regards to

sounding different.

This is a difficult condition to handle because people just do not

know of it. When you are ready, talk to your co-workers. They care

or they would not ask about you. They do not understand c-toma ( I

am not sure I fully do myself ), so they do not know what to say.

Prayfully, the information you share can prevent someone else from

waiting too long. Take one day at a time.

>

> I guess maybe I just had a bad day.

> I'm having a hard time coping with this hearing loss. I went to

work

> today to participate in a fund raiser for a fellow employee's

wife. I

> was chatting it up with them (they all wanted to know about my ear

> and when I'm comming back) and I just got so frustrated. I can't

hear

> when there is background noise or more than one person talking and

> people tell me that I sound different, that I'm harder to hear.

Does

> this make sense to any of you?

> One of the first things I remember loving as a child was music. My

> parents were hippies, so I was probably listening to Pink Floyd in

> the womb. I have gained an appreciation for all music since those

> days. I played the drums in Middle School and High School and was

in

> Marching Band. Up until recently, I still enjoyed playing my drum

set

> from time to time. I spend a lot of time out and about and I don't

> drive, so I just have to have my iPod with me. But the music just

> isn't the same anymore. No music at all is almost preferable to

only

> hearing the music out of one headphone. Its like half of it's

> missing. I'm just too depressed to even think about playing my

drums.

> I know here in 9 months to a year, I'll have my implants and

> hopefully have most of it back. But I can't help fearing that when

he

> goes back in there will be more c-toma and he won't be able to put

> them in, or ten thousand other bad scenarios.

> It doesn't help that I have been having a hard time sleeping

because

> I can't sleep on my back. I still can't lay on my left side as my

ear

> is still sore and my right ear has started throbbing at night. I

> don't know whether I should make an appointment to have it looked

at

> now or if I should just bring it up at my 6 week post-op

appointment.

> Its the only ear I have right now and I would be lost without

music,

> let alone being able to hear my husband and future children tell

me

> they love me.

> We were almost ready to start trying to conceive when I found out

I

> had this. I put it on hold because I no longer feel physically and

> emotionally ready. But we had out hearts set. That has been one of

> the hardest things for me to deal with and its been hard on ,

too.

> All this and I tried to cheer myself up by buying myself one of my

> favorite dinners, only to be painfully reminded that my sense of

> taste is still screwed up. I'm trying so hard to think of

something

> positive, but the only thing I can come up with is at least I

don't

> have cancer. Well, having people that know what I am going through

> helps. Thanks for " listening " , Beth

>

October 25, 2008

Beth and all,

Losing your hearing is very upsetting. On my account - I haven't

hesitated to get hearing aids and wear them all the time (except

bedtime) - I really needed them to function effectively in my job. My

left ear is really bad and I can't imagine having to use it alone

without an aid. I'm shocked at how much better I can hear with an aid

for that ear. My newest aid (on just the one side so far) actually has

a music setting. When I told my audiologist I just don't enjoy music

anymore, he almost insisted on setting up the music setting (I still

have one setting that is unused). I might actually try it when I get

the other aid. I've never understood song lyrics which is really

annoying, but at least I can amuse my wife with making up my own

lyrics. I also like having the lyrics to read as I listen to a song.

So hang tough and I think you'll be listening to music, your husband,

and 23 screaming kids. Oh ... think of that ... you'll have an off

switch that will likely work pretty darn good! I must warn you though

.... I wouldn't do that to your spouse and then give them lip service - I

got caught doing that once and since I value my life I've never done it

again!

I found the following pamphlet to be quite helpful and shared it with

friends, family, and coworkers. It's from the League for the Hard of

Hearing.

http://www.lhh.org/about_hearing_loss/living_with_hearing_loss.pdf

All the best,

Matt

hawkinsrdh wrote:

>

> I just read your post and wanted to respond to your question

> concerning your voice. My daughter has had 2 c-tomas and we need to

> make plans for the 3. She is very difficult to hear and says she

> feels like she is talking really loudly. Your voice level will take

> practice, but its quality should take care of itself with regards to

> sounding different.

> This is a difficult condition to handle because people just do not

> know of it. When you are ready, talk to your co-workers. They care

> or they would not ask about you. They do not understand c-toma ( I

> am not sure I fully do myself ), so they do not know what to say.

> Prayfully, the information you share can prevent someone else from

> waiting too long. Take one day at a time.

>

> >

> > I guess maybe I just had a bad day.

> > I'm having a hard time coping with this hearing loss. I went to

> work

> > today to participate in a fund raiser for a fellow employee's

> wife. I

> > was chatting it up with them (they all wanted to know about my ear

> > and when I'm comming back) and I just got so frustrated. I can't

> hear

> > when there is background noise or more than one person talking and

> > people tell me that I sound different, that I'm harder to hear.

> Does

> > this make sense to any of you?

> > One of the first things I remember loving as a child was music. My

> > parents were hippies, so I was probably listening to Pink Floyd in

> > the womb. I have gained an appreciation for all music since those

> > days. I played the drums in Middle School and High School and was

> in

> > Marching Band. Up until recently, I still enjoyed playing my drum

> set

> > from time to time. I spend a lot of time out and about and I don't

> > drive, so I just have to have my iPod with me. But the music just

> > isn't the same anymore. No music at all is almost preferable to

> only

> > hearing the music out of one headphone. Its like half of it's

> > missing. I'm just too depressed to even think about playing my

> drums.

> > I know here in 9 months to a year, I'll have my implants and

> > hopefully have most of it back. But I can't help fearing that when

> he

> > goes back in there will be more c-toma and he won't be able to put

> > them in, or ten thousand other bad scenarios.

> > It doesn't help that I have been having a hard time sleeping

> because

> > I can't sleep on my back. I still can't lay on my left side as my

> ear

> > is still sore and my right ear has started throbbing at night. I

> > don't know whether I should make an appointment to have it looked

> at

> > now or if I should just bring it up at my 6 week post-op

> appointment.

> > Its the only ear I have right now and I would be lost without

> music,

> > let alone being able to hear my husband and future children tell

> me

> > they love me.

> > We were almost ready to start trying to conceive when I found out

> I

> > had this. I put it on hold because I no longer feel physically and

> > emotionally ready. But we had out hearts set. That has been one of

> > the hardest things for me to deal with and its been hard on ,

> too.

> > All this and I tried to cheer myself up by buying myself one of my

> > favorite dinners, only to be painfully reminded that my sense of

> > taste is still screwed up. I'm trying so hard to think of

> something

> > positive, but the only thing I can come up with is at least I

> don't

> > have cancer. Well, having people that know what I am going through

> > helps. Thanks for " listening " , Beth

> >

>

--

October 25, 2008

Matt and all,

How practical would it be for me to get a hearing aid now or should I

just wait it out? My job also depends on me being able to hear and it

is always noisy. Are they usually covered under insurance?

Thank you everyone for sharing your stories, thoughts and ideas. You

all have kept me from going crazy while I've not been working. I go

back Wednesday, though. I guess they really miss me. Thanks for the

tips on talking to my co-workers, too!

-Beth

--- In cholesteatoma , "

October 26, 2008

My surgeon recommended that I pursue a hearing aid for my left ear when

he was about to operate on my right one (after he took one look at the

audiogram for the left ear). Then the audiologist took it from there.

Hearing aids are almost never covered by insurance (in the U.S.) unless

you're retired and eligible for Medicare. Many employers arrange for

zero interest loans in conjunction with payroll withholding to a medical

savings account. That's what I usually do - I arrange to place the

equivalent of the price of a hearing aid into an account before tax.

Then, at any time in that year, I simply purchase the hearing aid. My

first pair of aids lasted about 7 years. I'll be making arrangements to

purchase another one during the upcoming enrollment period. This year I

just had to place the one on a credit card - ouch!

Matt

lyndikhajiit wrote:

>

> Matt and all,

> How practical would it be for me to get a hearing aid now or should I

> just wait it out? My job also depends on me being able to hear and it

> is always noisy. Are they usually covered under insurance?

> Thank you everyone for sharing your stories, thoughts and ideas. You

> all have kept me from going crazy while I've not been working. I go

> back Wednesday, though. I guess they really miss me. Thanks for the

> tips on talking to my co-workers, too!

> -Beth

> --- In cholesteatoma

> <mailto:cholesteatoma%40>, "

March 3, 2009

Hi there,

I'm sorry you had such a disappointing appt! Can you see another doc? What doc did you see? I'm sorry if you've already explained, but I'm not familiar with your story. There has to be someone who can help you!!! hang in there...lauren

From: highs_and_lows08 <highs_and_lows08@...> Sent: Tuesday, March 3, 2009 3:03:22 AMSubject: depressed

Hi all,You asked me to tell you all how I got on in my assesment... ..I was prodded, poked and xrayed.....And told theres nothing sugical we can do that will give you any benifit at all. He COULD fuse whats left of your spine but that will (and a direct quote) "knacker you completely". He see's no benifit to removing the rods as I have progressive scoliosis as I was told and they are still doing adequatley what they were put there for. And on my lying down lateral xray the spacing between my vertabrae are normal so he doesnt know what else to do.I have already been down the path of hydrotherepy, physio, injections etc so he says theres no point in any of those (I agree).And when asked when do I need to come back he said "you dont!" basically he cant fix me now and unless something dramatic happens he won't be able to fix me then either."but why am I in so much pain? why do I

lean forwards? why do I waddle when I'm tired? why can't I walk anymore?""I don't know but I'll write to your GP and get you referred to the pain team so they can give you some more meds"I had such hopes of being told there was something that could be done. I am now very depressed. There is no hope for me. I wait for the pain team to tell me which pills to take next. My life has been periodic pain, growing worse over the last 12 years to the point now I can't bear it anymore (which is why I went to the dr in the first place) and apparently always will be.Sorry folks I dont mean to sound maudlin but it's how I feel., if you'd like me to leave the group as I dont apparently have flatback I'll understand. I'd like to thank you all for being with me on this part of the journey of my life.

March 4, 2009

My beef is with those GPs and other non-orthopaedic doctors who think they know more abour scoliosis than I do. My own scoliosis surgeon told me 25 yrs ago to never fall into the trap of thinking that a regular doctor knows more about scoliosis than I do. I have always held to his words.

Lida in London

-----Original Message-----From: [mailto: ] On Behalf Of Llweyn FriarsSent: 04 March 2009 07:41 Subject: RE: depressed

Sounds familiar. I was down that road 3 years ago, and the "specialist" told me that I didn't have true flatback since I wasn't fused to the sacrum plus I shouldn't be in pain since scoliosis doesn't cause pain. This specialist works in one of the main Spine Clinics in my province and I later found out that he told a fellow scoliosis patient the same thing 10 years ago after her car accident.

My advise is to see a credible Revision Surgeon, which are few and far between. Besides those recommended on this board and others, check out the Scoliosis Research Society for a surgeon in your area and interview them. Most specialists deal with children, not adults, and those that deal with adults do not necessarily have the knowledge or experience to deal with Flatback or fused spines.

I was very depressed after my appointment 3 years ago, especially since it took 3 years to get that appointment, but I was reminded that I usually say that things happen for a reason. Maybe the reason for you is to run as far and as fast from this doctor to one that properly understands your condition. A word of caution, you may have to travel a distance to get to your new doctor but it is better to be treated by one with experience than to be experimented on again. There is always hope and, in my opinion, there is no reason to leave this group unless you're wanting to but you need and have support here.

Llweyn

..

March 4, 2009

I agree!

I have lost count long ago how many doctors even young ortho's that I have had to explain my rods to. Doesnt fill you with confidence does it?

From: Lida Kraz <lidakraz@...> Sent: Wednesday, March 4, 2009 8:37:36 AMSubject: RE: depressed

My beef is with those GPs and other non-orthopaedic doctors who think they know more abour scoliosis than I do. My own scoliosis surgeon told me 25 yrs ago to never fall into the trap of thinking that a regular doctor knows more about scoliosis than I do. I have always held to his words.

Lida in London

RE: depressed

Sounds familiar. I was down that road 3 years ago, and the "specialist" told me that I didn't have true flatback since I wasn't fused to the sacrum plus I shouldn't be in pain since scoliosis doesn't cause pain. This specialist works in one of the main Spine Clinics in my province and I later found out that he told a fellow scoliosis patient the same thing 10 years ago after her car accident.

My advise is to see a credible Revision Surgeon, which are few and far between. Besides those recommended on this board and others, check out the Scoliosis Research Society for a surgeon in your area and interview them. Most specialists deal with children, not adults, and those that deal with adults do not necessarily have the knowledge or experience to deal with Flatback or fused spines.

I was very depressed after my appointment 3 years ago, especially since it took 3 years to get that appointment, but I was reminded that I usually say that things happen for a reason. Maybe the reason for you is to run as far and as fast from this doctor to one that properly understands your condition. A word of caution, you may have to travel a distance to get to your new doctor but it is better to be treated by one with experience than to be experimented on again. There is always hope and, in my opinion, there is no reason to leave this group unless you're wanting to but you need and have support here.

Llweyn

..

March 5, 2009

I was told pretty much the same thing when I saw the local scoliosis expert

surgeon. Fortunately, I was able to travel to St Louis to see a doctor who

knows how to fix flatback problems and I have been living without pain for

almost two years!

>

> Hi all,

>

> You asked me to tell you all how I got on in my assesment.....

> I was prodded, poked and xrayed.....

> And told theres nothing sugical we can do that will give you any

> benifit at all. He COULD fuse whats left of your spine but that will

> (and a direct quote) " knacker you completely " . He see's no benifit to

> removing the rods as I have progressive scoliosis as I was told and

> they are still doing adequatley what they were put there for. And on

> my lying down lateral xray the spacing between my vertabrae are

> normal so he doesnt know what else to do.

>

> I have already been down the path of hydrotherepy, physio, injections

> etc so he says theres no point in any of those (I agree).

>

> And when asked when do I need to come back he said " you dont! "

> basically he cant fix me now and unless something dramatic happens he

> won't be able to fix me then either.

>

> " but why am I in so much pain? why do I lean forwards? why do I

> waddle when I'm tired? why can't I walk anymore? "

>

> " I don't know but I'll write to your GP and get you referred to the

> pain team so they can give you some more meds "

>

> I had such hopes of being told there was something that could be

> done. I am now very depressed. There is no hope for me. I wait for

> the pain team to tell me which pills to take next. My life has been

> periodic pain, growing worse over the last 12 years to the point now

> I can't bear it anymore (which is why I went to the dr in the first

> place) and apparently always will be.

>

> Sorry folks I dont mean to sound maudlin but it's how I feel.

>

> , if you'd like me to leave the group as I dont apparently

> have flatback I'll understand. I'd like to thank you all for being

> with me on this part of the journey of my life.

>

March 9, 2009

You gotta realize, malpractice issues, control the fate of so many...with complex spine conditions...This procedure(surgery) required is high-risk, no doubt, and nobody wants to take a risk, into this area, where their expertise is very limited...even referrals make them subject to lawsuits, I'm afraid...

They are not a hateful bunch of doctors...No, surely not...They just are not inclined to put all of their hard work & money & reputation at stake, because the bottom line, is about acheiving a monetary status, rather than taking a huge risk, on someone they have never, ever seen before...

Please...It's nothing personal...You have to move on, keep pounding away...like following your fellow flat-backers, out there...and hold onto the HOPE that you will find some relief, incredible relief, in store for you...As SOON AS POSSIBLE...

And may the angels guide you there...As Sooon As Possible...too...

depressed

I am very concerned about why this sort of scenario keeps repeating. I am beginning to get suspicious about some of these orthopaedists who cannot even be bothered to check us out sagitally. Even if this one is not qualified to assess sagitall plane problems, why not refer the patient on to someone else? Or just say straight out "I dont know" instead of categorically stating nothing can be done. I am beginning to think it's not just lack of experience or interest, but more of malice. I know it sounds bananas, but that is what I am picking up.

Lida in London

-----Original Message-----From: [mailto: ] On Behalf Of Rasche Sent: 08 March 2009 22:43 Subject: Re: depressed

PLEASE do not leave the group!I wish I knew exactly where to refer you. What I do know: You must get another medical opinion -- absolutely, unquestionably. I am not a doctor and am not qualified to diagnose anyone's spinal condition, of course, but the key words that leapt out at me from your recent post were "why do I lean forward?" This is an absolute red flag and major tip-off, coupled with the severe pain that has besieged you. Your consultant seems to have totally ignored it. Did he order any films whatsoever of your sagittal plane (as opposed to the standard coronal-plane films)? And if so, did he understand the significance of what he was seeing? Has he checked out your sagittal balance in some quantititative way, e.g., using the "plumbline" method described in the SRS literature? Is this doctor, in fact, even qualified to assess patients with iatrogenic sagittal-plane problems?

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March 9, 2009

Hi, Lida --

I want to thank you belatedly for this inspirational thought.

What great words of wisdom to keep in mind as we venture into the wilds of our

doctors' appointments.

I never met your doctor, but I sure do like him. It sounds as if he had some

genuine, constructive insight to offer his patients - not to mention respecting

his patients as authorities on their own bodies. If only a few more medical

personages thought this way.

Best,

>

> My beef is with those GPs and other non-orthopaedic doctors who think they

> know more abour scoliosis than I do. My own scoliosis surgeon told me 25

> yrs ago to never fall into the trap of thinking that a regular doctor knows

> more about scoliosis than I do. I have always held to his words.

>

> Lida in London

>

> RE: depressed

>

> Sounds familiar. I was down that road 3 years ago, and the " specialist " told

> me that I didn't have true flatback since I wasn't fused to the sacrum plus

> I shouldn't be in pain since scoliosis doesn't cause pain. This specialist

> works in one of the main Spine Clinics in my province and I later found out

> that he told a fellow scoliosis patient the same thing 10 years ago after

> her car accident.

>

> My advise is to see a credible Revision Surgeon, which are few and far

> between. Besides those recommended on this board and others, check out the

> Scoliosis Research Society for a surgeon in your area and interview them.

> Most specialists deal with children, not adults, and those that deal with

> adults do not necessarily have the knowledge or experience to deal with

> Flatback or fused spines.

>

> I was very depressed after my appointment 3 years ago, especially since it

> took 3 years to get that appointment, but I was reminded that I usually say

> that things happen for a reason. Maybe the reason for you is to run as far

> and as fast from this doctor to one that properly understands your

> condition. A word of caution, you may have to travel a distance to get to

> your new doctor but it is better to be treated by one with experience than

> to be experimented on again. There is always hope and, in my opinion, there

> is no reason to leave this group unless you're wanting to but you need and

> have support here.

>

> Llweyn

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March 9, 2009

Hi ,

Thank you for your eloquent message. If I am allowed to stay I shall indeed do so. I have derived much comfort from this group and although it may seem weird, I AM weird and I don't particularly care....so...

The lyrics of a song I remember from when I was small........ I dedicate this to my fellow swans.

There once was an ugly duckling With feathers all stubby and brown And the other birds said in so many words Get out of town Get out, get out, get out of town And he went with a quack and a waddle and a quack In a flurry of eiderdown That poor little ugly duckling Went wandering far and near But at every place they said to his face Now get out, get out, get out of

here And he went with a quack and a waddle and a quack And a very unhappy tear All through the wintertime he hid himself away Ashamed to show his face, afraid of what others might say All through the winter in his lonely clump of wheat Till a flock of swans spied him there and very soon agreed Youâ€™re a very fine swan indeed! A swan? Me a swan? Ah, go on! And he said yes, youâ€™re a swan Take a look at

yourself in the lake and youâ€™ll see And he looked, and he saw, and he said I am a swan! Wheeeeeeee! Iâ€™m not such an ugly duckling No feathers all stubby and brown For in fact these birds in so many words said The best in town, the best, the best The best in town Not a quack, not a quack, not a waddle or a quack But a glide and a whistle and a snowy white back And a head so noble and

high Say whoâ€™s an ugly duckling? Not I! Not I!

From: Rasche <elizabethrgonzalez@...> Sent: Sunday, March 8, 2009 10:42:42 PMSubject: Re: depressed

PLEASE do not leave the group!I wish I knew exactly where to refer you. What I do know: You must get another medical opinion -- absolutely, unquestionably. I am not a doctor and am not qualified to diagnose anyone's spinal condition, of course, but the key words that leapt out at me from your recent post were "why do I lean forward?" This is an absolute red flag and major tip-off, coupled with the severe pain that has besieged you. Your consultant seems to have totally ignored it. Did he order any films whatsoever of your sagittal plane (as opposed to the standard coronal-plane films)? And if so, did he understand the significance of what he was seeing? Has he checked out your sagittal balance in some quantititative way, e.g., using the "plumbline" method described in the SRS literature? Is this doctor, in fact, even qualified to assess patients with iatrogenic sagittal-plane problems? I feel very strongly that you can not base

your own self-assessment on the opinion of this one physician you saw. Remember, please, that you are not by any means the only person who has had this disheartening experience: So many of our members report having seen supposed specialists all over the map who told them they were fine, their rods were all in place and doing the job, etc. -- when they were not the least bit fine but were progressing farther and farther into serious flatback deformity. As you know, this is a widespread problem and one that is in fact highly treatable. There is no excuse for the kind of misdiagnoses or missed diagnosed we are still hearing about all too often -- not in this day and age -- yet the reality is that it continues.I know you are feeling depressed, demoralized, even hopeless. But I think if you are going to get through this and find some viable solution, you need to gather whatever personal resources you may have and mobilize yourself to fight -- fight

your way to the comprehensive and properly directed medical/surgical assessment that can lead to definitive and appropriate intervention. I know this is no small challenge and may seem overwhelming and impossible. I have been there myself and have experienced all the emotions you are going through now. I would not be urging this on you so strongly except that I do not for a minute believe that your situation is hopeless -- provided that you can obtain a thoroughgoing asesssment of your sagittal balance from an informed, qualified specialist.You can trust that people in this group will support and applaud your efforts -- so many of us have had similar experiences. What can we do right now? Can we help in any way to get you to the diagnostic assessment you still need?Please do not accept mere palliative measures as the only thing left to you. If you had heard this from Dr. Rand in Boston, for instance, or Dr. Ondra in Chicago, I

would be rather surprised but would have to accept it. But I am very confident that you would not have heard any such thing from doctors like these, the handful of qualified flatback revision surgeons who see and treat so very many people in straits smilar to yours. There are at least one million of us who were or are or will be walking around getting more and more bent-over and suffering ever-increasing pain until such tme as we obtain skilled revision surgery. I say "at least" one million because that estimate (from SRS spokesman O'Brien) came to us a couple years back, when we still thought the main cause of flatback syndrome was faulty hardware. We are now learning that improper surgical technique, with insufficient attention to sagittal balance, is an equally powerful determinant regardless of whether the surgeon has access to state-of-the- art instrumentation. I mean, this is a staggering problem, a veritable disaster in terms of its prevalence --

yet we continue to hear from people who were sent away with no help by doctors apparently still "in the dark" or in denial about the whole thing. This kind of medical ignorance is inexplicable. It boggles the mind. If only in their own self-interest, doctors should be keeping up with the literature -- what doctor, these days, wants to risk any kind of negligence?I want to see you getting the diagnosis and care you need and deserve. Please hang in there. Please stay in touch with us. We need to put our heads together and figure out some alternatives that can genunely help you.Best,>> Hi all,> > You asked me to tell you all how I got on in my assesment... ..> I was prodded, poked and xrayed......> And told theres nothing sugical we can do that will give

you any > benifit at all. He COULD fuse whats left of your spine but that will > (and a direct quote) "knacker you completely". He see's no benifit to > removing the rods as I have progressive scoliosis as I was told and > they are still doing adequatley what they were put there for. And on > my lying down lateral xray the spacing between my vertabrae are > normal so he doesnt know what else to do.> > I have already been down the path of hydrotherepy, physio, injections > etc so he says theres no point in any of those (I agree).> > And when asked when do I need to come back he said "you dont!" > basically he cant fix me now and unless something dramatic happens he > won't be able to fix me then either.> > "but why am I in so much pain? why do I lean forwards? why do I > waddle when I'm tired? why can't I walk anymore?"> > "I

don't know but I'll write to your GP and get you referred to the > pain team so they can give you some more meds"> > I had such hopes of being told there was something that could be > done. I am now very depressed. There is no hope for me. I wait for > the pain team to tell me which pills to take next. My life has been > periodic pain, growing worse over the last 12 years to the point now > I can't bear it anymore (which is why I went to the dr in the first > place) and apparently always will be.> > Sorry folks I dont mean to sound maudlin but it's how I feel.> > , if you'd like me to leave the group as I dont apparently > have flatback I'll understand. I'd like to thank you all for being > with me on this part of the journey of my life.>

March 9, 2009

I'm afraid america is too far for me but I'm so pleased you have found relief, maybe something will turn up for me. xxx

From: SB <bahadreama@...> Sent: Thursday, March 5, 2009 8:42:44 PMSubject: Re: depressed

I was told pretty much the same thing when I saw the local scoliosis expert surgeon. Fortunately, I was able to travel to St Louis to see a doctor who knows how to fix flatback problems and I have been living without pain for almost two years!>> Hi all,> > You asked me to tell you all how I got on in my assesment... ..> I was prodded, poked and xrayed.....> And told theres nothing sugical we can do that will give you any > benifit at all. He COULD fuse whats left of your spine but that will > (and a direct quote) "knacker you completely". He see's no benifit to > removing the rods as I have progressive scoliosis as I was told and

> they are still doing adequatley what they were put there for. And on > my lying down lateral xray the spacing between my vertabrae are > normal so he doesnt know what else to do.> > I have already been down the path of hydrotherepy, physio, injections > etc so he says theres no point in any of those (I agree).> > And when asked when do I need to come back he said "you dont!" > basically he cant fix me now and unless something dramatic happens he > won't be able to fix me then either.> > "but why am I in so much pain? why do I lean forwards? why do I > waddle when I'm tired? why can't I walk anymore?"> > "I don't know but I'll write to your GP and get you referred to the > pain team so they can give you some more meds"> > I had such hopes of being told there was something that could be > done. I am now very depressed.

There is no hope for me. I wait for > the pain team to tell me which pills to take next. My life has been > periodic pain, growing worse over the last 12 years to the point now > I can't bear it anymore (which is why I went to the dr in the first > place) and apparently always will be.> > Sorry folks I dont mean to sound maudlin but it's how I feel.> > , if you'd like me to leave the group as I dont apparently > have flatback I'll understand. I'd like to thank you all for being > with me on this part of the journey of my life.>

March 9, 2009

I'm really pleased you found the care you needed. Thank you for sharing your story with me - it did help. xxx

From: Drayton <ldrayton@...> Sent: Thursday, March 5, 2009 5:09:33 PMSubject: Re: depressed

I have had a similar experience. Last June I was in at my local Ortho office in horrible pain, couldn't stand up straight, couldn't walk more than a few steps, couldn't stand for even a few seconds without being in extreme pain. He was willing to do surgery but told me the outcome would be "disappointing" . I should learn to live with it.. Well........ ...that wasn't an option for me. I tried several other regional docs and didn't get much more from them. In my case everyone was willing to operate but wouldn't give me high hopes for a good recovery. Finally, I went to see Dr. Koski in Chicago and Dr. Bridwell in St. Louis. Those visits were the best thing I have ever done for myself. Neither of these Doctors had any question about being able to fix me. Of course they could!!!! Dr. Bridwell performed surgery on me in December. I am now standing up straight

and I walk over two miles a day. I Still have a long way to go on my recovery but the good news is I am recovering.

The point of all of this is to let you know that I truly believe that the results from my local doc would have been disappointing. He didn't have the skills to deal with my complex issues. I asked him to refer me to one of the top docs but he ignored the request. I hope that you will consult with one of the top revision surgeons and get a second opinion. I can relate to how you are feeling right now. Unfortunately all of us that have these complex spine problems have to become our own advocates. Don't loose hope. Just think of this as another step along a long journey. I hope you can find a doctor that can give you relief and hope!

D

depressed

Hi all,You asked me to tell you all how I got on in my assesment... ..I was prodded, poked and xrayed.....And told theres nothing sugical we can do that will give you any benifit at all. He COULD fuse whats left of your spine but that will (and a direct quote) "knacker you completely". He see's no benifit to removing the rods as I have progressive scoliosis as I was told and they are still doing adequatley what they were put there for. And on my lying down lateral xray the spacing between my vertabrae are normal so he doesnt know what else to do.I have already been down the path of hydrotherepy, physio, injections etc so he says theres no point in any of those (I agree).And when asked when do I need to come back he said "you dont!" basically he cant fix me now and unless something dramatic happens he won't be able to fix me then either."but why am I in so much pain? why do I

lean forwards? why do I waddle when I'm tired? why can't I walk anymore?""I don't know but I'll write to your GP and get you referred to the pain team so they can give you some more meds"I had such hopes of being told there was something that could be done. I am now very depressed. There is no hope for me. I wait for the pain team to tell me which pills to take next. My life has been periodic pain, growing worse over the last 12 years to the point now I can't bear it anymore (which is why I went to the dr in the first place) and apparently always will be.Sorry folks I dont mean to sound maudlin but it's how I feel., if you'd like me to leave the group as I dont apparently have flatback I'll understand. I'd like to thank you all for being with me on this part of the journey of my life.

____________ _________ _________ _________ _

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March 9, 2009

thank you jim - beautifully put and thank you for the compliments.

From: Jim O'Leary <griffinjim63@...> Sent: Tuesday, March 3, 2009 4:07:57 PMSubject: Re: depressed

very, very sad news...

I realize the huge, humoungus let-down is just devastating.

I too, know the feeling...Please do not feel like a burden upon us...There is nothing but love and understanding that will come from us...

Let your tears flow...Don't hold back the anger, either. You've been more than strong and more than courageous.

And you certainly deserve better...in every way...

God Bless You...and I certainly hope there is an abundance of happiness, somehow, someway, just around the corner, to take this shadow of darkness & pain, out of your sights...

For you are a blessed soul...who touched my heart...and my deepest prayers will be coming your way...for sure...

Jim

depressed

Hi all,You asked me to tell you all how I got on in my assesment... ..I was prodded, poked and xrayed.....And told theres nothing sugical we can do that will give you any benifit at all. He COULD fuse whats left of your spine but that will (and a direct quote) "knacker you completely". He see's no benifit to removing the rods as I have progressive scoliosis as I was told and they are still doing adequatley what they were put there for. And on my lying down lateral xray the spacing between my vertabrae are normal so he doesnt know what else to do.I have already been down the path of hydrotherepy, physio, injections etc so he says theres no point in any of those (I agree).And when asked when do I need to come back he said "you dont!" basically he cant fix me now and unless something dramatic happens he won't be able to fix me then either."but why am I in so much pain? why do I

lean forwards? why do I waddle when I'm tired? why can't I walk anymore?""I don't know but I'll write to your GP and get you referred to the pain team so they can give you some more meds"I had such hopes of being told there was something that could be done. I am now very depressed. There is no hope for me. I wait for the pain team to tell me which pills to take next. My life has been periodic pain, growing worse over the last 12 years to the point now I can't bear it anymore (which is why I went to the dr in the first place) and apparently always will be.Sorry folks I dont mean to sound maudlin but it's how I feel., if you'd like me to leave the group as I dont apparently have flatback I'll understand. I'd like to thank you all for being with me on this part of the journey of my life.

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March 9, 2009

I had three x'rays taken.

Standing looking at the "camera"

side on. The radiographer asked me to put my hands on my head! I said sorry no way but I'll try. She took a picture of my upper back.

lying on a table, on my left side. This was of my coccyx and pelvis area.

the doctor looked at the pictures and said the measurements between my vertebrae are within normal limits.. My facing you picture showed that my spine is quite noticeably "S" shaped, even with the rods. This is apparently normal. My rods seemed to be slightly bent to me in comparison with how I saw them before but that's supposed to be OK too. My nervous system etc is supposed to be fine, as although I get odd sensations now in my legs such as buzzing and a poured warm water feeling as I have no weakness as such and no "digestive" issues there can't be anything wrong with that.

He did not do any "plum line" measurements at all - despite me pointing out that I cannot stand up straight an on recent photos I look deformed with leaning, and I cannot walk without "waddling".

I specifically told him that my rib cage has moved, sufficiently so that I cannot wear under-wires as they now leave me bruised and sore, but only on one side..

He tells me that everything seems to be OK, the rods are fine. I'm slightly overweight but he understands that's to do with limited movement. He could fuse me but wont as it wont help. and when pushed said he has no idea why I'm in pain and it's just one of those things. I've had all the no surgical things already so he'll refer me to the pain team for medication.

should I have had different x'rays? are these the normal ones for this assessment? is it normal not to have a side view of the middle of the back? should I have been standing for the lower back x'ray? does this make a difference?

Given that there was no disc damage/reduction showing could it still be flat-back?

As far as the pain is concerned. He cannot tell me it isn't real because I know thats there - excruciatingly so.

I just don't know anymore and I'm going round in circles.....