Re: Pain Doc Appt

[Guest guest]

Speaking of Ling....

"That's all for now, feel kind of weak. Will write again."

How you doing sweetie? Am a tad concerned about you????

*gentle hugs*

Love isha

[Guest guest]

Hi Aisha,

This is the third day after my block, felt okay yesterday and this morning, but by afternoon, the headaches seem to come back suddenly. Hope all goes well....

Ling

Re: pain doc appt

Speaking of Ling....

"That's all for now, feel kind of weak. Will write again."

How you doing sweetie? Am a tad concerned about you????

*gentle hugs*

Love isha

[Guest guest]

Dear Carol Ca,

Your question of if I'm really " Bad " enough for surgery is one that all of

us weigh at one point. Many here have had more than one doc not recognize

the downward spiral we flatbackers go through, thus delaying good treatment.

My best advice is to get to a good doc, find out exactly what's going on

with you and weigh your options. While waiting for your appointment at UCSF

and getting all the tests necessary can be frustrating, and boy I hated all

the tests, and running to the appointments, it's a necessary part of getting

the full picture.

We are very resiliant people, we've been through a lot in our lives with our

past Harrington Rod surgeries, so I think we tend to accept the pain and

disability of Flatback in a way that our " Normal Backed " friends would not

if it were happening to them. They would want it fixed yesterday, while we

who have had major spine surgery before, with the bad pain control of the

past, casts, frames, etc, tend to go about things with a greater level of

caution.

I unlike many here, had a pretty early onset of symptoms of Flatback,

about 11 years after my Harrington Rod surgery. I went from doc to doc,

never getting a Flatback diagnosis. It took 15 years, all the time I became

more accepting of the things I could no longer do. I wish I could say that I

was completely aware of just how limited I was, but everyone around me sure

was. One month you can walk for a block before the pain was too bad, the

next you can't. But because you've always delt with a " Bad Back " , you just

move through the disabling process till you hit a moment when even you say

geez I'm a mess. Mine was helping a neighbor move, and the pain got so awful

that I was forced to go back to doctors to try to find an answer. After

running to doc's for years, having them tell me my fusions were fine, and

that I'd have to live with the pain, I had just given up that there was help

for me. It had been about four years since I had been to the last doc, and

this pain from helping my neighbor move just made me try to get help again.

Then I found Dr. Kumar and got my Flatback diagnosis, and a surgical plan

that gave me back my ability to live a full life again without the pain.

Get to a good doc, find out just whats going on. I went the surgical route,

and glad every day I did. Thats for you and your doc to weigh. For me,

surgery was the right choice, I never have been one for med's. I just wanted

the " mechanics " of my back fixed as best they could and a reduction in

pain. I wish I could give you a better answer, but alas Flatback usually

requires surgical intervention, it's just a matter of how long you wait till

you have the surgery. I wish mine had been sooner, that I hadn't had to go

years without properly being diagnosised. That I didn't have to spiral down

to the point that a wheelchair was looking good for family outtings.

Knowledge is a wonderful thing, you sit at a great advantage, you have

knowledge of Flatback, have an idea of the handfuls of good doc's out there,

and the support of this fine group while you are going through the process

of finding your answer. It's a process, not an easy one, but in my case a

very sucessful outcome.

[ ] Pain Doc Appt

> Today I saw the pain doc. He didn't have a lot to say except that he

> feels my problem is " a mechanical one " and the only thing that will

> help will be the right combination of pain medication. I told him

> that Ultram seems to help, but if I'm in a lot of pain like I was

> Sunday, one didn't do the trick, so I took two, and that helped. He

> recommended taking two Ultram (Tramadol) every 6 hours if I need to.

> I told him I heard about Lyrica, and asked if it was for pain, and he

> said, yes, NERVE PAIN. I asked if it makes you sleepy, and he

> laughed, and said, " yes, it's the brother medication to Neurontin " .

> So I said maybe I'd only take it at night, and he gave me a sample

> and wants me to take the Lyrica for two weeks TWICE a day. If it

> makes me sleepy at work, I'll only take it at night. I know two

> Ultram don't make me sleepy. I mentioned seeing the doc at UCSF in

> July about a consultation, and since she's a surgeon, she'll probably

> recommend surgery. He said he didn't think surgery would help.(!) I'm

> not going to take his word for gospel, since he doesn't know

> everything about scoliosis and flatback, but sometimes I wonder if

> surgery is a good idea or not. I know that a lot of you have had it,

> and some haven't, and you're not doctors, but it seems to me that

> most have been glad that they have had it done. I just wonder how BAD

> you have to get to really have it done. I wonder if I'm " bad enough " .

> I guess I'm wondering because, yeah, I have alot of pain...can't move

> or do certain things because it brings it on, but I have strong legs

> and my leg reflexes are very good. Every doctor that checks those

> reflexes says " GOOD! " . I'm just wondering if surgery helps the lower

> back pain? I'm assuming it's from the arthritis and DDD--I just move

> a certain way and good ol' L-5 S-1 move slightly and bring it on. How

> do they find out exactly WHAT causes the pain?? My CT scan last year

> wasn't conclusive, but that's probably because I had no mylogram with

> it. Anyone out there that has seen Dr. Hu--does she order CT's with

> Mylograms or X-rays? I was wondering if she'd do it when I go up

> there. Someone named from UCSF called the house yesterday when

> I was at work and left a message. I tried to call her twice today--

> left two messages--but she never called back. I don't know what she

> would want. The guy who answered the phone up there asked if I knew

> that they wanted an X-ray, and I said, no, I have some that are one

> year old, but he thought I would need newer ones. How do I get that

> done? Does Dr. Hu have to order them and I have them done here and

> bring them with me???? Lots of questions.

>

> Carol (CA)

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

Hi Carol,

Glad you were able to talk over your meds and get them tweeked up so

you have some tricks available when needed.

I can't understand how the pain doctor can, on the one hand, tell you

you have a " mechanical " problem and then in the next breath indicate

that a " mechanical " solution isn't possible?

You, of course, have to pre-qualify your own doctors...and this guy

may be very good on the pain control, but I do hope you will await

the consult of someone that specializes in your condition, adult

spinal deformity, post Harrington Rod induced saggital imbalance,

before you before you cone to any conclusions. The medical

profession is full of specialists these days and I have read that

anyone more than 5-7 years out of med school can be out of touch with

the current best practices...and in this case your doctor was

somewhat far afield of his own specialty...so while years ago it was

true that there was not a lot of hope or technique available for

remedy for us ....things have changed.

None of this is to say that this surgery is a piece of cake or that

it should be entered into lightly. I certainly have read and heard

enough stories to make me think that everyone considering this

solution should very seriously consider all the impacts. If you

decide that you are going to persue a surgical solution, it will be

just that....you making the decision. There is not a decent surgeon

out there that would ever promise you perfect results, nor will they

rush you into making a decision. I have said this many times...but I

will say it again: if anyone finds they are being rushed to consider

this surgery (unless, of course, severe neurological symptoms

suddenly crop up) just get up and walk/limp/roll out of the consult.

This is usually not emergency surgery and if you decide it should

happen, then it should be at the time and place of your own choosing.

You should feel completely confident in you doctor and your own

decisions. If that is not where you are...then absolutely listen to

your inner voice!

I think you were on-line with us recently, but may have missed the

post. put up an article over in the " files " section...it is

marked " lumbar.pdf " ...and it summarizes some of your questions and

should give you some confidence moving forward that even when

complications develop in and around the revision...like , most

of us, but not all, are pretty glad we went ahead with the surgery

after a period of time. Others have stated that there is some kind of

internal balancing that goes on in that pain/quality of life

equation...and it is so individual a thing I doubt that anyone but

the patient can really know the answer. It just seems that those of

us that went ahead just " knew " the time was nigh.

The only other observation I can make is that when talking about my

surgery with Dr Rand....must have been my 7 month post op visit....I

opined that I didn't think I was " too bad " when I had surgery. He is

a pretty dry guy...and he just kind of gave me a long look and begged

to dissagree with me. Of course looking back...I couldn't walk, I

couldn't stand, I couldn't go out, I couldn't enjoy a sex life, I was

not a very " present parent " , and at night I couldn't even start a

stream of urine to save my life....

All better now...no pain...you be the judge!

Stay calm, Cam

[Guest guest]

Hi Carol, Cam... Ditto to what Cam said about everything! CAM- Again,

always think you are " right on " with your comments and insights! Sure

saves the rest of us from having to post sometimes! SMILES; have a

great day! Marty

[Guest guest]

Thanks--Only lately have I realized that I can't walk a lot during

family outings. My husband likes to go to the drag races in

Bakersfield and I was so glad that we couldn't go this year, because

I just couldn't bear the thought of trying to find a place to sit

down all the time or possibly using a wheelchair. I told him if I

went I'd have to have a wheel chair, and he didn't really understand.

I know I can't walk or stand as much as I used to be able to. I've

just been tolerating the pain over the years, mostly out of

ignorance...but now I know what's wrong with me. Luckily, my husband

doesn't have much time off so we can't go very many places. The past

year or so I have gotten worse, I know. I can't even bear to think of

going to the mall " for the day " . My mom wanted to do our annual " mall

day " on President's Day, and I told her I just can't do it any more.

I would be searching constantly for a place to sit down, and I've

found that most of the stores don't have chairs!!! I guess they want

people to stand and shop!!!! Very few have chairs!! My mode of

shopping anywhere nowadays is " stab and grab " !!!!(I shop like a man)

Carol

>

> Dear Carol Ca,

>

> Your question of if I'm really " Bad " enough for surgery is one

that all of

> us weigh at one point. Many here have had more than one doc not

recognize

> the downward spiral we flatbackers go through, thus delaying good

treatment.

> My best advice is to get to a good doc, find out exactly what's

going on

> with you and weigh your options. While waiting for your appointment

at UCSF

> and getting all the tests necessary can be frustrating, and boy I

hated all

> the tests, and running to the appointments, it's a necessary part

of getting

> the full picture.

>

> We are very resiliant people, we've been through a lot in our lives

with our

> past Harrington Rod surgeries, so I think we tend to accept the

pain and

> disability of Flatback in a way that our " Normal Backed " friends

would not

> if it were happening to them. They would want it fixed yesterday,

while we

> who have had major spine surgery before, with the bad pain control

of the

> past, casts, frames, etc, tend to go about things with a greater

level of

> caution.

>

> I unlike many here, had a pretty early onset of symptoms of

Flatback,

> about 11 years after my Harrington Rod surgery. I went from doc to

doc,

> never getting a Flatback diagnosis. It took 15 years, all the time

I became

> more accepting of the things I could no longer do. I wish I could

say that I

> was completely aware of just how limited I was, but everyone around

me sure

> was. One month you can walk for a block before the pain was too

bad, the

> next you can't. But because you've always delt with a " Bad Back " ,

you just

> move through the disabling process till you hit a moment when even

you say

> geez I'm a mess. Mine was helping a neighbor move, and the pain got

so awful

> that I was forced to go back to doctors to try to find an answer.

After

> running to doc's for years, having them tell me my fusions were

fine, and

> that I'd have to live with the pain, I had just given up that there

was help

> for me. It had been about four years since I had been to the last

doc, and

> this pain from helping my neighbor move just made me try to get

help again.

> Then I found Dr. Kumar and got my Flatback diagnosis, and a

surgical plan

> that gave me back my ability to live a full life again without the

pain.

>

> Get to a good doc, find out just whats going on. I went the

surgical route,

> and glad every day I did. Thats for you and your doc to weigh. For

me,

> surgery was the right choice, I never have been one for med's. I

just wanted

> the " mechanics " of my back fixed as best they could and a

reduction in

> pain. I wish I could give you a better answer, but alas Flatback

usually

> requires surgical intervention, it's just a matter of how long you

wait till

> you have the surgery. I wish mine had been sooner, that I hadn't

had to go

> years without properly being diagnosised. That I didn't have to

spiral down

> to the point that a wheelchair was looking good for family outtings.

>

> Knowledge is a wonderful thing, you sit at a great advantage, you

have

> knowledge of Flatback, have an idea of the handfuls of good doc's

out there,

> and the support of this fine group while you are going through the

process

> of finding your answer. It's a process, not an easy one, but in my

case a

> very sucessful outcome.

>

>

> [ ] Pain Doc Appt

>

>

> > Today I saw the pain doc. He didn't have a lot to say except that

he

> > feels my problem is " a mechanical one " and the only thing that

will

> > help will be the right combination of pain medication. I told him

> > that Ultram seems to help, but if I'm in a lot of pain like I was

> > Sunday, one didn't do the trick, so I took two, and that helped.

He

> > recommended taking two Ultram (Tramadol) every 6 hours if I need

to.

> > I told him I heard about Lyrica, and asked if it was for pain,

and he

> > said, yes, NERVE PAIN. I asked if it makes you sleepy, and he

> > laughed, and said, " yes, it's the brother medication to

Neurontin " .

> > So I said maybe I'd only take it at night, and he gave me a sample

> > and wants me to take the Lyrica for two weeks TWICE a day. If it

> > makes me sleepy at work, I'll only take it at night. I know two

> > Ultram don't make me sleepy. I mentioned seeing the doc at UCSF in

> > July about a consultation, and since she's a surgeon, she'll

probably

> > recommend surgery. He said he didn't think surgery would help.(!)

I'm

> > not going to take his word for gospel, since he doesn't know

> > everything about scoliosis and flatback, but sometimes I wonder if

> > surgery is a good idea or not. I know that a lot of you have had

it,

> > and some haven't, and you're not doctors, but it seems to me that

> > most have been glad that they have had it done. I just wonder how

BAD

> > you have to get to really have it done. I wonder if I'm " bad

enough " .

> > I guess I'm wondering because, yeah, I have alot of pain...can't

move

> > or do certain things because it brings it on, but I have strong

legs

> > and my leg reflexes are very good. Every doctor that checks those

> > reflexes says " GOOD! " . I'm just wondering if surgery helps the

lower

> > back pain? I'm assuming it's from the arthritis and DDD--I just

move

> > a certain way and good ol' L-5 S-1 move slightly and bring it on.

How

> > do they find out exactly WHAT causes the pain?? My CT scan last

year

> > wasn't conclusive, but that's probably because I had no mylogram

with

> > it. Anyone out there that has seen Dr. Hu--does she order CT's

with

> > Mylograms or X-rays? I was wondering if she'd do it when I go up

> > there. Someone named from UCSF called the house yesterday

when

> > I was at work and left a message. I tried to call her twice today-

-

> > left two messages--but she never called back. I don't know what

she

> > would want. The guy who answered the phone up there asked if I

knew

> > that they wanted an X-ray, and I said, no, I have some that are

one

> > year old, but he thought I would need newer ones. How do I get

that

> > done? Does Dr. Hu have to order them and I have them done here and

> > bring them with me???? Lots of questions.

> >

> > Carol (CA)

> >

> >

> >

> >

> >

> > scoliosis veterans * flatback sufferers * revision candidates

> >

[Guest guest]

What's this " can't start a stream of urine " thing? I had that problem

this morning...and it really worried me. I haven't told anyone, because

I don't know which doctor to tell?? The pain doc isn't probably the

right one, or the ortho I saw a couple of weeks ago?? Or should I wait

for Dr. Hu?? I have noticed over the past 9 months or so that it was

getting harder for me to start my urine stream and also BM's, but until

today when I felt I had to go and couldn't, I wondered--is this a new

symptom, or is it the Lyrica???

As I side note--I am not going to take that Lyrica twice a day!! It

made me so sleepy most of the day and I was also a little nauseous when

I woke up--not to mention I couldn't pee!! I'ts a great help to go to

sleep, but dangerous driving to work!!!

Any thoughts anyone???!!!

Carol (CA)

>

> Hi Carol, Cam... Ditto to what Cam said about everything! CAM-

Again,

> always think you are " right on " with your comments and insights! Sure

> saves the rest of us from having to post sometimes! SMILES; have a

> great day! Marty

>

[Guest guest]

You might want to mention it to your pain doctor, to start with, as it could be that the muscles are so tense (from pain) that they can't relax enough. I have noticed the same thing even my pain level is up, then when I try to relax and/or take the pain med's then I don't have quite the same problem as things are easier. You don't want to wait too long or the toxins might start to build up in the body and start to create additional problems. Also check to be sure it's not one of the medication side effects, and if it is then get back to the doctor that prescribed them. There might be an alternative to the one you are currently using.

If your appointment isn't too far away, for Dr. Hu, then you can mention it to her, as well. It could be a combination of things causing the problem. If you have a while yet for your appointment, then phone the office and explain the bathroom problem. They might bump your appointment up as being more urgent. This is not the time to remain silent when you are seeking medical help (state the factual situation and how it makes you feel, not complain, though it's OK to cry if the emotions are close to the surface). They can't know your whole situation if you don't tell them, including your family and quality of life. This gives them a better picture of the mechanics of your back and the impact that it has on you, both emotional and physically (when stated as facts and not just pure emotions). It also lets them know that you are willing to work with them and I feel like I'm being treated as a human being, instead of a statistic, when using this approach.

Good luck in finding a solution to your situation. Most of all, take care of yourself.

Llweyn

-----Original Message-----From: [mailto: ]On Behalf Of CarolSent: April 26, 2006 9:58 PM Subject: [ ] Re: Pain Doc ApptWhat's this "can't start a stream of urine" thing? I had that problem this morning...and it really worried me. I haven't told anyone, because I don't know which doctor to tell?? The pain doc isn't probably the right one, or the ortho I saw a couple of weeks ago?? Or should I wait for Dr. Hu?? I have noticed over the past 9 months or so that it was getting harder for me to start my urine stream and also BM's, but until today when I felt I had to go and couldn't, I wondered--is this a new symptom, or is it the Lyrica??? As I side note--I am not going to take that Lyrica twice a day!! It made me so sleepy most of the day and I was also a little nauseous when I woke up--not to mention I couldn't pee!! I'ts a great help to go to sleep, but dangerous driving to work!!! Any thoughts anyone???!!!Carol (CA)

[Guest guest]

Hi Carol, It still amazes me everytime I read a post here and it

echoes my thoughts, feelings, and experiences! Your's touched me,

especially the part where you are " glad " you can't go somewhere; the

relief of not having to struggle to keep up with the normal folk! Yet,

we live with those feelings, adapt and adjust, and after awhile, don't

even realize how much we are giving up or missing out on. When it does

HIT us, I think that is when some of us decide to go thru' with

revision... or REPEAT revision. I am not posting this to be negative

in any way; just wanted to let you know I feel the same way (miss the

mall, sometimes). My family and friends understand now, but I

remember so well being frustrated, telling them " I spend the WHOLE

time we are out, thinking about WHERE I can sit down and HOW FAR it is

to the next place that I can sit down! " Nowadays, I do try to find

things I can go and enjoy and I do use electric wheelchairs when

provided (tho' they can make neck hurt after a bit), or shopping

carts. Again, It's so nice to know other people that know EXACTLY how

I feel. Take care, Marty

... I was so glad that we couldn't go this year, because

I just couldn't bear the thought of trying to find a place to sit

down all the time or possibly using a wheelchair... I can't even bear

to think of going to the mall " for the day " . My mom wanted to do our

annual " mall day " on President's Day, and I told her I just can't do

it any more... Carol