HAVE Flatback and considering surgery intractable pain

[Guest guest]

Donna,

Pain being ones constant partner, can make one think there is little hope, and why go on that way, but DO have hope for a better day, many of us here have had that happen to us. I went into Flatback about 11 years after my Harrington was placed, and lived in that mode for 15 years, knowing something was awfully wrong, but couldn't find a doc that could diagnosis me, and I saw a lot. I got diagnosised in 2000, and had three revisions, and I'm doing very well, live a full life, and have a pretty doggone painfree exisitance. I guess in this battle( mine sure was a battle) you have to take it one step a time. It takes work to find your answer, your doc, plan for a surgery, but as long as your are moving forward, there's less time for the feeling of dispare, you are moving towards a goal, participating in getting yourself well, and believe me it helps with the feeling of WHY ME. Pain can and does warp your sence of the world, and yourself, and issolates you not only to the couch, but makes you live in the past, in your world that pain wasn't your constant companion, in your head. Completely normal to feel that way, but, you can't allow pain to rob you, so you pick yourself up and do the work to get yourself better. I totally believe in seeing yourself well, keeping your eye on the prize, it got me through two very tough years, of three surgeries and recoveries, which were full of highs and lows. I KNEW I was going to be better, and willed myself back from some real dispare, just knew I wasn't going to drown in it all. You have it in yourself too, just from reading, you see it in there.

Sounds like you have been to see Bridwell, who else have you seen? Why so long in the hospital?

God doesn't want you home a minute sooner than necessary, and medically, we have terrific docs out there doing this work, who have worked real amazing problems into members living much fuller lives, with far less pain, and a body stance vastly improved. I'm one.

While my body isn't perfect, and living with a really fused spine has some challenges, I'm VASTLY better, and everyday is a gift. I know reading this it's hard to see, but I was where you were, and had to scrape myself off the couch, and give docs one more chance, cause I had to, for me, but also my family. You are worth the effort, and things will fall into place, I've seen even the most complicated lives find a way to get the surgery they need, because when you have a plan, things just have a way of working out. Blessings don't just fall into our laps( sure wish they did) but come to those who will appreciate them from a battle hard fought.

We are glad to have you among us, so sorry you find yourself needing the companionship, but you are among people who GET how this all feels, and that makes all this more tolerable. I'm thankful everyday to my friends here, and look forward to hearing more from you as you journey through Flatback and it's treatment.

Colorado Springs

[ ] HAVE Flatback and considering surgery intractable pain

i have been diagonosed by 3 alternate ortho drs that i need a flatback spine salvage sugery and there are many types of procedures they do depends on your case. My recent odd symptoms have caused me to go to a neuro dr because i have strong inovluntary jerking of limbs and involuntary voice projections asleep or awake, even voice and have trouble swallowing. Hiccups whihc are related only if i try to eat something I was told this can come from complications from the severe nerve damge just discovered in my last MRI 3 dys ago. So i have put off the recision surgery for 2 yrs now when first told i needed it at 40yo now 42 and its progressing and causing more pain and wierd involuntary body spams while asleep or awake. Ive been out of work )sales work on commission) on FMLA for over a wk now and once i decide to do the surgery with Bridwell at U of MA id haveto be prepared to MOVE give my dog to soemone to take care of , be in the hospital anywhere from 3-6 mos i have a dog am single and have no one to do my banking calls to LTD for my compnay mail checks etc. I also have learned that a single revision process may not be the end it could require more surgery so im praying for wisdom to either stick with the debilitating lifestyle go no where all i can manage is walk the old dog and immeditaely take to a recliner to relieve preessure , gianed weight though i havent eaten i dont have a taste for food for months now. Im living off yogurt drinks and fat free ice cream everything else makes me nauseaus.Wish i knew of a qualified West CST surgeon that does this surgeyr as specialist.Swithced my meds from 10mg/325 percocets to dilaudid whcih gave me headaches and now on OPANA 10 mg 4 times or more a day, soma 350 6 pills a day, avenza morphine 90 mg 1x a day and 10mg of valium to stop the jerking so i can rest. NONE works I was once a tv actress and now wihtout sleep and all this pain i feel and look in my 50s no offesne. I am back on a walker have done a total of 13 epidurals and spine blocks on facet joints and 2 RF radio frequency abaltions to kills some nerves that cause pain. NOTHING works. I tokd my dr 2 dys ago im not going to take this anymore and i do have a a gun and told him its better off dad then lving with intractable pain. He was worried and said we will do whatever it takes to ease this. I wanna know why me, successful gymnast since 4 yo and and after scoliosis surgery stoped my gymnastics i went into to being a well known tv actor, now i cant stand staight and look like im face down with flatback . I mean GOD gimme a break already. If they said one revision surery would do it and give a min of 30% improvment i say go on, BUT they tell me often multiple osteotmies are often needed when you are fused past L5 and have ssevere DDD facet aftrhosis, bla bla, as a Chritsian i wont pull the trigger BUT i cannot wait to die and go on the the Lord, He has the answers we cant figure out and i cant wait to ask why....for ALL OF USgnite

[Guest guest]

i have been diagonosed by 3 alternate ortho drs that i need a flatback spine

salvage sugery and there are many types of procedures they do depends on your

case.

My recent odd symptoms have caused me to go to a neuro dr because i have strong

inovluntary jerking of limbs and involuntary voice projections asleep or awake,

even voice and have trouble swallowing. Hiccups whihc are related only if i try

to eat something I was told this can come from complications from the severe

nerve damge just discovered in my last MRI 3 dys ago.

So i have put off the recision surgery for 2 yrs now when first told i needed it

at 40yo now 42 and its progressing and causing more pain and wierd involuntary

body spams while asleep or awake. Ive been out of work )sales work on

commission) on FMLA for over a wk now and once i decide to do the surgery with

Bridwell at U of MA id haveto be prepared to MOVE give my dog to soemone to take

care of , be in the hospital anywhere from 3-6 mos i have a dog am single and

have no one to do my banking calls to LTD for my compnay mail checks etc. I also

have learned that a single revision process may not be the end it could require

more surgery so im praying for wisdom to either stick with the debilitating

lifestyle go no where all i can manage is walk the old dog and immeditaely take

to a recliner to relieve preessure , gianed weight though i havent eaten i dont

have a taste for food for months now. Im living off yogurt drinks and fat free

ice cream everything else makes me nauseaus.

Wish i knew of a qualified West CST surgeon that does this surgeyr as

specialist.

Swithced my meds from 10mg/325 percocets to dilaudid whcih gave me headaches

and now on OPANA 10 mg 4 times or more a day, soma 350 6 pills a day, avenza

morphine 90 mg 1x a day and 10mg of valium to stop the jerking so i can rest.

NONE works I was once a tv actress and now wihtout sleep and all this pain i

feel and look in my 50s no offesne. I am back on a walker have done a total of

13 epidurals and spine blocks on facet joints and 2 RF radio frequency abaltions

to kills some nerves that cause pain. NOTHING works.

I tokd my dr 2 dys ago im not going to take this anymore and i do have a a gun

and told him its better off dad then lving with intractable pain. He was worried

and said we will do whatever it takes to ease this. I wanna know why me,

successful gymnast since 4 yo and and after scoliosis surgery stoped my

gymnastics i went into to being a well known tv actor, now i cant stand staight

and look like im face down with flatback . I mean GOD gimme a break already.

If they said one revision surery would do it and give a min of 30% improvment i

say go on, BUT they tell me often multiple osteotmies are often needed when you

are fused past L5 and have ssevere DDD facet aftrhosis, bla bla, as a Chritsian

i wont pull the trigger BUT i cannot wait to die and go on the the Lord, He has

the answers we cant figure out and i cant wait to ask why....for ALL OF USgnite

[Guest guest]

Donna,

Welcome to the group. I am sorry you are in so much pain. It really stinks to

find yourself on this downward spiral after living many years without too much

worry about your back. Kind of screws up the life plan, for sure. I spent many a

day on the couch crying for myself and feeling like I had been singled out for a

dose of unfair treatment in the game of life. I think that has been true for

many of us. And many of us have found ourselves in exactly the kind of despair

your describe and knew that we were at the point where it was no longer an

option to continue to put off considering a surgical solution. For me, it was

kind of a " what do I have to lose? " equation. My active life had diminished to

the confines of my couch, my pain induced cranky, nasty, short tempered

personality was not gaining me much with family and friends. My intimate life

was non- existent due to pain. I was gaining weight which was only making a bad

situation worse. Still, I was paralyzed by the fear of the surgery from reading

many accounts on unsuccessful surgeries.

I don't recount this to minimize your situation. I am telling you this so that

you can hopefully take strength in the knowledge that my situation DID turn

around dramatically. It didn't happen overnight. The surgery " period " was

draining, the work to get back my life was demanding. Today, 4+ years after

surgery I am painfree, or at least as painfree as one can expect at almost 53

with a very fused spine and 3 inch screws into most of my spine and pelvis! I

can hike mountains, snowshoe, ride a bike, I can sit as long as I like, I can

walk to town or ride or fly anywhere I wish. I can partner with my husband and

parent my child. Life is good.

I am not a medical professional, so I do not have any ability to help you sort

through the various opinions you have already received, but you sound as if you

have enough information to start considering your options....so perhaps we can

help you sort through them one at a time. The idea of going ahead can seem

daunting, particularly if you don't already have a good network of support right

at hand...but this is not an impossible situation if you take it one small step

at a time.

Obviously, one step you must take is finding a surgeon who has the right

constellation of skill, location, insurance compatibility for you. For most of

us, travel had been necessary to one degree or another. Most of the membership

that joins this particular group comes to us looking to find out who amongst the

many surgeons out there might have the skill set we require. We have been scared

to death by accounts of surgery that did not succeed or get the patient the

quality of life they envisioned. So who should they go to?

The surgery to correct flatback, as most of us experience it, is very

challenging. As in any surgical procedure...those that do it the most frequently

tend to have the best skills and knowledge about managing a patient going

through this. Yes, perhaps the guy or gal down the street will manage to

convince someone to trust them enough to have surgery with them, but I could not

believe that someone who did not have a track record with patients more or less

exactly like me (you, us) is someone that I wanted to take a chance on. After

all, this was my " life " .

I realize that you may feel like you are in an " emergency " situation. Please do

whatever it takes right now to converse with your medical team and determine if

that is really true, or if you have some time to sort through your choices. If I

understand you correctly you are or have been evaluated by DrBridwell in

StLouis. He and his team are highly respected and seem to do wonderful things

for their patients. All you have to do is use the search feature for this group

to find a number of very good outcomes from those patients. In California there

is Dr Serena Hu and DrBerven at UCSF that have been consulted by many patients

and are well aquanted with patients just like you.

To begin setting your mind at ease about the future, call your local SCPA or vet

clinic and tell them about your medical situation and they may be able to point

you in the direction of a longer term care situation for your dog. On the one

hand there is nothing like the loving companionship of a dog, but I bet if you

start looking around to find a safe and good temporary home for your pet you

will find one. If you decide to have surgery your dog can eventually come home

to an owner who will be able to take him for the outings he needs! If you have

family or friends elsewhere do not be afraid to ask if they can help with your

dog temporarily. If is not that expensive or difficult to fly/ship a dog to a

different location. Heck, I shipped my then 15y.o. (and 16 on the return) Jack

from NYC to Europe and back just last year. It took a little planning,

but the airlines do it all the time and it is quite safe. I figured the risk for

her of flying outweighed the problems of leaving her here in the U.S....and like

you I was in a life situation that called for me to decide if I was going to let

my/our life take a decidedly different course because of our dog. We knew we

couldn't do that....so we took the risk of shipping an old dog and she is, and

still continues to be, FINE. (She just turned 17 last week!)

There are any number of methods to arrange your mail and financial affairs so

that they can be easily handled by a willing friend or family....in this day and

age they do not have to even be in your immediate area. The internet has made

banking and bill paying easier than ever. Deposits can be made electronically.

First class mail can be forwarded to another address for 6 months (with a 6

month extension too) and someone else can sort through what needs doing.

All this is to say that if you take each problem one at a time and try not to

let it overwhelm you, I know you will find solutions that will work for you.

Many of us have traveled exactly this road and have lots of tips and information

on how to navigate through this trial. We have gotten through this and thrived

in the aftermath. You can do it too.

I hope you will continue to come to us for information and support. We know what

its like to feel hopeless, but there are good solutions out there. Please take

heart in that.

Take Care, Cam

[Guest guest]

dear

i thank you for your outpuring of your status and your soul to me in this horrible pit o life.

I was a gymnast and actor and now i cant walk my shitsu without a walker. I did not see Bridwell i only talked wiht his surgical asst and i want a dr closer to vegas since i jsut spent all my saving of 10k to move here for my job transfer and now im on fmla and will be doing std and ltd so i like vegas but i wish i could afford a small apt in los angles and find good surgeons and pain drs like i have here.

I have NO appetitie and i choke when swallowing which is neurological they say. I feel posessed because my limbs jerk involuntarlily and my arm shoots strraght up in the air and im left in tears.

At work ive lost my urine and bowel funcions on 2 occasions all from nerve damage they say and im scheduled for another RF ablation to kill off those nerves it only lasts a yr. Im tired of constipation and dont know what to take to help with that. My sis died mo ago fo kidney cancer and my other sis had MS so some of m symptoms could be overlaping.

Im not afraid of revision surgery im afraid that if i go through with it , it wont be a one time deal and i sitll wont get my old life back even after the battle

Once better my goal is to do a short film called The Pain Comanion" about pain and its ravages on the body and interview real patients that survived and went on to do what they dreamed.

Im a tough person BUT all have a breaking point. I attached my pic fom 3 yrs ago befoe this started and im so ashamed of how the ravages of pain have taken my sanity life and passion fro loving others. I hate my body and get angry but i dotn hat God. pray but nothing happens ive gained 20 lbs and cut my hair cause i coudlnt ned over to wash itthank you sus for reaching out to me today

your new friend

Donna

310-595-6462

From: .Kirkaldie@...Date: Sun, 13 Jan 2002 15:51:44 -0700Subject: Re: [ ] HAVE Flatback and considering surgery intractable pain

Donna,

Pain being ones constant partner, can make one think there is little hope, and why go on that way, but DO have hope for a better day, many of us here have had that happen to us. I went into Flatback about 11 years after my Harrington was placed, and lived in that mode for 15 years, knowing something was awfully wrong, but couldn't find a doc that could diagnosis me, and I saw a lot. I got diagnosised in 2000, and had three revisions, and I'm doing very well, live a full life, and have a pretty doggone painfree exisitance. I guess in this battle( mine sure was a battle) you have to take it one step a time. It takes work to find your answer, your doc, plan for a surgery, but as long as your are moving forward, there's less time for the feeling of dispare, you are moving towards a goal, participating in getting yourself well, and believe me it helps with the feeling of WHY ME. Pain can and does warp your sence of the world, and yourself, and issolates you not only to the couch, but makes you live in the past, in your world that pain wasn't your constant companion, in your head. Completely normal to feel that way, but, you can't allow pain to rob you, so you pick yourself up and do the work to get yourself better. I totally believe in seeing yourself well, keeping your eye on the prize, it got me through two very tough years, of three surgeries and recoveries, which were full of highs and lows. I KNEW I was going to be better, and willed myself back from some real dispare, just knew I wasn't going to drown in it all. You have it in yourself too, just from reading, you see it in there.

Sounds like you have been to see Bridwell, who else have you seen? Why so long in the hospital?

God doesn't want you home a minute sooner than necessary, and medically, we have terrific docs out there doing this work, who have worked real amazing problems into members living much fuller lives, with far less pain, and a body stance vastly improved. I'm one.

While my body isn't perfect, and living with a really fused spine has some challenges, I'm VASTLY better, and everyday is a gift. I know reading this it's hard to see, but I was where you were, and had to scrape myself off the couch, and give docs one more chance, cause I had to, for me, but also my family. You are worth the effort, and things will fall into place, I've seen even the most complicated lives find a way to get the surgery they need, because when you have a plan, things just have a way of working out. Blessings don't just fall into our laps( sure wish they did) but come to those who will appreciate them from a battle hard fought.

We are glad to have you among us, so sorry you find yourself needing the companionship, but you are among people who GET how this all feels, and that makes all this more tolerable. I'm thankful everyday to my friends here, and look forward to hearing more from you as you journey through Flatback and it's treatment.

Colorado Springs

[ ] HAVE Flatback and considering surgery intractable pain

i have been diagonosed by 3 alternate ortho drs that i need a flatback spine salvage sugery and there are many types of procedures they do depends on your case. My recent odd symptoms have caused me to go to a neuro dr because i have strong inovluntary jerking of limbs and involuntary voice projections asleep or awake, even voice and have trouble swallowing. Hiccups whihc are related only if i try to eat something I was told this can come from complications from the severe nerve damge just discovered in my last MRI 3 dys ago. So i have put off the recision surgery for 2 yrs now when first told i needed it at 40yo now 42 and its progressing and causing more pain and wierd involuntary body spams while asleep or awake. Ive been out of work )sales work on commission) on FMLA for over a wk now and once i decide to do the surgery with Bridwell at U of MA id haveto be prepared to MOVE give my dog to soemone to take care of , be in the hospital anywhere from 3-6 mos i have a dog am single and have no one to do my banking calls to LTD for my compnay mail checks etc. I also have learned that a single revision process may not be the end it could require more surgery so im praying for wisdom to either stick with the debilitating lifestyle go no where all i can manage is walk the old dog and immeditaely take to a recliner to relieve preessure , gianed weight though i havent eaten i dont have a taste for food for months now. Im living off yogurt drinks and fat free ice cream everything else makes me nauseaus.Wish i knew of a qualified West CST surgeon that does this surgeyr as specialist.Swithced my meds from 10mg/325 percocets to dilaudid whcih gave me headaches and now on OPANA 10 mg 4 times or more a day, soma 350 6 pills a day, avenza morphine 90 mg 1x a day and 10mg of valium to stop the jerking so i can rest. NONE works I was once a tv actress and now wihtout sleep and all this pain i feel and look in my 50s no offesne. I am back on a walker have done a total of 13 epidurals and spine blocks on facet joints and 2 RF radio frequency abaltions to kills some nerves that cause pain. NOTHING works. I tokd my dr 2 dys ago im not going to take this anymore and i do have a a gun and told him its better off dad then lving with intractable pain. He was worried and said we will do whatever it takes to ease this. I wanna know why me, successful gymnast since 4 yo and and after scoliosis surgery stoped my gymnastics i went into to being a well known tv actor, now i cant stand staight and look like im face down with flatback . I mean GOD gimme a break already. If they said one revision surery would do it and give a min of 30% improvment i say go on, BUT they tell me often multiple osteotmies are often needed when you are fused past L5 and have ssevere DDD facet aftrhosis, bla bla, as a Chritsian i wont pull the trigger BUT i cannot wait to die and go on the the Lord, He has the answers we cant figure out and i cant wait to ask why....for ALL OF USgnite

1 of 1 Photo(s)

[Guest guest]

Dear Donna,

I am sorry to hear of the terrible pain that you are in due to flatback and

other issues. I am curious as to whether the neurologist you have seen says the

involuntary muscle movement is due to nerve compression?

I saw your picture and you are quite beautiful, with flatback or without, it

wouldn't matter. I can see determination in your eyes. Your best bet is the west

coast with the doctors already mentioned. We are here for you, that is what we

are all here for, to support one another.

[Guest guest]

thank u i will try to get to Sf once my std from work is approved and take it from there

the love and care ive gotten from total stangers has prove to me we are at the end of the day connected by our humaness and locked together by the same need for a DESIRE TO LIVE

THANKS DONNA

Donna

310-595-6462

From: slinkers5@...Date: Mon, 18 May 2009 13:47:31 -0500Subject: Re: [ ] HAVE Flatback and considering surgery intractable pain

Donna,

I have read your posts and my heart goes out to you. Please don't give up. You do not need to move to see a doctor in another state as many at this site will tell you. It can be complicated to arrange, but it can be done. I do understand how hard it is to keep moving forward when your body is going through such torment, but you have many people here who are going through, or have gone through, what you are experiencing. Do you have friends or family near you in Vegas? Would you be able to fly or have someone drive you to SF to see the doctor there? Perhaps if you called the specialist in SF they might have some suggestions as to how you might be able to see them. You are obviously a strong woman and you are tapping into a good source by connecting with the people at this forum. Keep up the fight.

Jeanne

[ ] HAVE Flatback and considering surgery intractable pain

i have been diagonosed by 3 alternate ortho drs that i need a flatback spine salvage sugery and there are many types of procedures they do depends on your case. My recent odd symptoms have caused me to go to a neuro dr because i have strong inovluntary jerking of limbs and involuntary voice projections asleep or awake, even voice and have trouble swallowing. Hiccups whihc are related only if i try to eat something I was told this can come from complications from the severe nerve damge just discovered in my last MRI 3 dys ago. So i have put off the recision surgery for 2 yrs now when first told i needed it at 40yo now 42 and its progressing and causing more pain and wierd involuntary body spams while asleep or awake. Ive been out of work )sales work on commission) on FMLA for over a wk now and once i decide to do the surgery with Bridwell at U of MA id haveto be prepared to MOVE give my dog to soemone to take care of , be in the hospital anywhere from 3-6 mos i have a dog am single and have no one to do my banking calls to LTD for my compnay mail checks etc. I also have learned that a single revision process may not be the end it could require more surgery so im praying for wisdom to either stick with the debilitating lifestyle go no where all i can manage is walk the old dog and immeditaely take to a recliner to relieve preessure , gianed weight though i havent eaten i dont have a taste for food for months now. Im living off yogurt drinks and fat free ice cream everything else makes me nauseaus.Wish i knew of a qualified West CST surgeon that does this surgeyr as specialist.Swithced my meds from 10mg/325 percocets to dilaudid whcih gave me headaches and now on OPANA 10 mg 4 times or more a day, soma 350 6 pills a day, avenza morphine 90 mg 1x a day and 10mg of valium to stop the jerking so i can rest. NONE works I was once a tv actress and now wihtout sleep and all this pain i feel and look in my 50s no offesne. I am back on a walker have done a total of 13 epidurals an! d spine blocks on facet joints and 2 RF radio frequency abaltions to kills some nerves that cause pain. NOTHING works. I tokd my dr 2 dys ago im not going to take this anymore and i do have a a gun and told him its better off dad then lving with intractable pain. He was worried and said we will do whatever it takes to ease this. I wanna know why me, successful gymnast since 4 yo and and after scoliosis surgery stoped my gymnastics i went into to being a well known tv actor, now i cant stand staight and look like im face down with flatback . I mean GOD gimme a break already. If they said one revision surery would do it and give a min of 30% improvment i say go on, BUT they tell me often multiple osteotmies are often needed when you are fused past L5 and have ssevere DDD facet aftrhosis, bla bla, as a Chritsian i wont pull the trigger BUT i cannot wait to die and go on the the Lord, He has the answers we cant figure out and i cant wait to ask why....for ALL OF USgnite

[Guest guest]

Hi Donna...

Just a warning.... it can take months to get an appointment at UCSF to see Drs.

Berven or Hu, so be sure to plan ahead. You'll be in excellent hands with

either doc.

Regards,

>

>

> thank u i will try to get to Sf once my std from work is approved and take it

from there

>

> the love and care ive gotten from total stangers has prove to me we are at the

end of the day connected by our humaness and locked together by the same need

for a DESIRE TO LIVE

>

> THANKS DONNA

>

>

>

> Donna

> 310-595-6462

>

>

>

>

>

>

>

> From: slinkers5@...

> Date: Mon, 18 May 2009 13:47:31 -0500

> Subject: Re: [ ] HAVE Flatback and considering surgery

intractable pain

>

>

>

>

>

>

>

>

> Donna,

>

> I have read your posts and my heart goes out to you. Please don't give up.

You do not need to move to see a doctor in another state as many at this site

will tell you. It can be complicated to arrange, but it can be done. I do

understand how hard it is to keep moving forward when your body is going through

such torment, but you have many people here who are going through, or have gone

through, what you are experiencing. Do you have friends or family near you in

Vegas? Would you be able to fly or have someone drive you to SF to see the

doctor there? Perhaps if you called the specialist in SF they might have some

suggestions as to how you might be able to see them. You are obviously a strong

woman and you are tapping into a good source by connecting with the people at

this forum. Keep up the fight.

> Jeanne

>

>

>

> [ ] HAVE Flatback and considering surgery intractable

pain

>

>

>

> i have been diagonosed by 3 alternate ortho drs that i need a flatback spine

salvage sugery and there are many types of procedures they do depends on your

case.

>

> My recent odd symptoms have caused me to go to a neuro dr because i have

strong inovluntary jerking of limbs and involuntary voice projections asleep or

awake, even voice and have trouble swallowing. Hiccups whihc are related only if

i try to eat something I was told this can come from complications from the

severe nerve damge just discovered in my last MRI 3 dys ago.

>

> So i have put off the recision surgery for 2 yrs now when first told i needed

it at 40yo now 42 and its progressing and causing more pain and wierd

involuntary body spams while asleep or awake. Ive been out of work )sales work

on commission) on FMLA for over a wk now and once i decide to do the surgery

with Bridwell at U of MA id haveto be prepared to MOVE give my dog to soemone to

take care of , be in the hospital anywhere from 3-6 mos i have a dog am single

and have no one to do my banking calls to LTD for my compnay mail checks etc. I

also have learned that a single revision process may not be the end it could

require more surgery so im praying for wisdom to either stick with the

debilitating lifestyle go no where all i can manage is walk the old dog and

immeditaely take to a recliner to relieve preessure , gianed weight though i

havent eaten i dont have a taste for food for months now. Im living off yogurt

drinks and fat free ice cream everything else makes me nauseaus.

>

> Wish i knew of a qualified West CST surgeon that does this surgeyr as

specialist.

>

> Swithced my meds from 10mg/325 percocets to dilaudid whcih gave me headaches

and now on OPANA 10 mg 4 times or more a day, soma 350 6 pills a day, avenza

morphine 90 mg 1x a day and 10mg of valium to stop the jerking so i can rest.

NONE works I was once a tv actress and now wihtout sleep and all this pain i

feel and look in my 50s no offesne. I am back on a walker have done a total of

13 epidurals an! d spine blocks on facet joints and 2 RF radio frequency

abaltions to kills some nerves that cause pain. NOTHING works.

>

> I tokd my dr 2 dys ago im not going to take this anymore and i do have a a gun

and told him its better off dad then lving with intractable pain. He was worried

and said we will do whatever it takes to ease this. I wanna know why me,

successful gymnast since 4 yo and and after scoliosis surgery stoped my

gymnastics i went into to being a well known tv actor, now i cant stand staight

and look like im face down with flatback . I mean GOD gimme a break already.

>

> If they said one revision surery would do it and give a min of 30% improvment

i say go on, BUT they tell me often multiple osteotmies are often needed when

you are fused past L5 and have ssevere DDD facet aftrhosis, bla bla, as a

Chritsian i wont pull the trigger BUT i cannot wait to die and go on the the

Lord, He has the answers we cant figure out and i cant wait to ask why....for

ALL OF USgnite

>

[Guest guest]

I also called dr bridwell again and may go that route as well

thanks

Donna

310-595-6462

From: lindaracine@...Date: Tue, 19 May 2009 00:37:11 +0000Subject: [ ] Re: HAVE Flatback and considering surgery intractable pain

Hi Donna...Just a warning.... it can take months to get an appointment at UCSF to see Drs. Berven or Hu, so be sure to plan ahead. You'll be in excellent hands with either doc.Regards,>> > thank u i will try to get to Sf once my std from work is approved and take it from there> > the love and care ive gotten from total stangers has prove to me we are at the end of the day connected by our humaness and locked together by the same need for a DESIRE TO LIVE> > THANKS DONNA> > > > Donna > 310-595-6462> > > > > > > > From: slinkers5@...> Date: Mon, 18 May 2009 13:47:31 -0500> Subject: Re: [ ] HAVE Flatback and considering surgery intractable pain> > > > > > > > > Donna,> > I have read your posts and my heart goes out to you. Please don't give up. You do not need to move to see a doctor in another state as many at this site will tell you. It can be complicated to arrange, but it can be done. I do understand how hard it is to keep moving forward when your body is going through such torment, but you have many people here who are going through, or have gone through, what you are experiencing. Do you have friends or family near you in Vegas? Would you be able to fly or have someone drive you to SF to see the doctor there? Perhaps if you called the specialist in SF they might have some suggestions as to how you might be able to see them. You are obviously a strong woman and you are tapping into a good source by connecting with the people at this forum. Keep up the fight. > Jeanne> > > > [ ] HAVE Flatback and considering surgery intractable pain> > > > i have been diagonosed by 3 alternate ortho drs that i need a flatback spine salvage sugery and there are many types of procedures they do depends on your case. > > My recent odd symptoms have caused me to go to a neuro dr because i have strong inovluntary jerking of limbs and involuntary voice projections asleep or awake, even voice and have trouble swallowing. Hiccups whihc are related only if i try to eat something I was told this can come from complications from the severe nerve damge just discovered in my last MRI 3 dys ago. > > So i have put off the recision surgery for 2 yrs now when first told i needed it at 40yo now 42 and its progressing and causing more pain and wierd involuntary body spams while asleep or awake. Ive been out of work )sales work on commission) on FMLA for over a wk now and once i decide to do the surgery with Bridwell at U of MA id haveto be prepared to MOVE give my dog to soemone to take care of , be in the hospital anywhere from 3-6 mos i have a dog am single and have no one to do my banking calls to LTD for my compnay mail checks etc. I also have learned that a single revision process may not be the end it could require more surgery so im praying for wisdom to either stick with the debilitating lifestyle go no where all i can manage is walk the old dog and immeditaely take to a recliner to relieve preessure , gianed weight though i havent eaten i dont have a taste for food for months now. Im living off yogurt drinks and fat free ice cream everything else makes me nauseaus.> > Wish i knew of a qualified West CST surgeon that does this surgeyr as specialist.> > Swithced my meds from 10mg/325 percocets to dilaudid whcih gave me headaches and now on OPANA 10 mg 4 times or more a day, soma 350 6 pills a day, avenza morphine 90 mg 1x a day and 10mg of valium to stop the jerking so i can rest. NONE works I was once a tv actress and now wihtout sleep and all this pain i feel and look in my 50s no offesne. I am back on a walker have done a total of 13 epidurals an! d spine blocks on facet joints and 2 RF radio frequency abaltions to kills some nerves that cause pain. NOTHING works. > > I tokd my dr 2 dys ago im not going to take this anymore and i do have a a gun and told him its better off dad then lving with intractable pain. He was worried and said we will do whatever it takes to ease this. I wanna know why me, successful gymnast since 4 yo and and after scoliosis surgery stoped my gymnastics i went into to being a well known tv actor, now i cant stand staight and look like im face down with flatback . I mean GOD gimme a break already. > > If they said one revision surery would do it and give a min of 30% improvment i say go on, BUT they tell me often multiple osteotmies are often needed when you are fused past L5 and have ssevere DDD facet aftrhosis, bla bla, as a Chritsian i wont pull the trigger BUT i cannot wait to die and go on the the Lord, He has the answers we cant figure out and i cant wait to ask why....for ALL OF USgnite>

[Guest guest]

Hi Donna,

I just want to add my encouragement. I will be praying for you to be

able to take the steps you need to take to find some relief from your

pain and discouragement. The steps the gals have been encouraging you

with are right on. They've been there, done that.

I'm still PRE-revision, but in a better place than when I first came to

this group. I found short term pain relief from physical therapy and

because of the encouragement of this group have found great relief from

water exercise 3 times a week. I go to a warm pool and put weights on my

feet and hang on the side doing leg exercises. It must do some kind of

traction because I usually feel better for a couple of days. I'm pretty

sure I haven't had as severe of pain or symptoms as most on this site or

as you've had...but I'm a wimp, so I've needed lots of encouragement.

Like Cam said, take things in baby steps. That has helped me a lot.

Early on in my pain journey and before I found this group, I also

despaired a lot as other difficulties were also happening all at the same

time. Here are the words to a song I penned at the time. I hope it can

help you. I share this since you reference that you are a Christian.

I'm not trying to preach, just sharing what brought me comfort. It's

called " Shelter " :

Chorus: " I can rest in your care, under the shelter of Your wing. How

can I despair knowing You are King?

vs 1 When life seems unfair, when things just don't work out. I wonder

if You're there and struggle with my doubt.

Show me what I'm missin', why do the good die young? Can you

still be list'nin' to the cries from my tongue?

Bridge: I am always with you. you hold me by my right hand. You guide

me with your counsel, And afterward You will take me into glory.

vs 2 When I'm distressed with grief, under a heavy cloud, where can I

find relief from sorrows that abound?

My own strength may fail, but I turn my eyes to You, My troubles

will pale, when I trust You to be true. " (repeats bridge & chorus)

(The song came from my experience, but also from my understanding of

Psalm 73:21-28.)

I am so sorry you are having to experience the struggle with the " scoli

beast " . It is hard to bear. For me one of the hardest things was just

accepting that what I was experiencing wasn't temporary, and I'll be

facing this for a long time to come, whether I opt for surgery or wait.

Then I realized I only needed to get through it " One Day At A

Time " ...even got a copy of the song off Amazon to remind me. I hope you

will keep us posted on your progress since I hear your determination to

face this in your plans to make a film about pain.

Your friend,

Diane VDW

Michigan

____________________________________________________________

You'll never forget how well you sleep on your new memory foam mattress. Click

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[Guest guest]

HI Donna,

You have found the right place for help. We understand your situations because some of us have been there and went on to have revision surgery and others here are still waiting to decide what to do or are in the process heading for revision.

I had my original H-Rod scoli surgery in 1977 at 36 yrs of age and my Flatback revision surgery in 1997, at 56. I've been on scoli boards for the last ten years. I can tell you that most people make the decision to have revision surgery because they can no longer stand the pain and diminished lifestyle that Flatback brings. It is a miserable surgery to contemplate, but, for me a lifetime of Flatback pain and diminished lifestyle was simply unacceptable. Especially because revision surgery offered me an alternative. No guarantees, of course, but at least a chance.

I think you said you were afraid that surgery won't help you. As far as I know, however, and I am not a medical professional, there is truly no other long term option. As difficult as the surgery and recovery period are, I have never heard of anyone who is sorry they had the surgery. Certainly, not everyone gets an absolutely perfect outcome, including me. But, even with some slight balance problems because of nerve damage and some continuing pain, I now have a full, rewarding life. A cane and exercise help with my balance issues and a pain doc and occasional accupressure and cranial sacral therapy help my pain issues. Revision surgery gave me my life back. I am a happy lady.

Here you'll find loads of help and advice about getting through this experience. To start with, I agree with Cam that it is very important to get at least 2 opinions from the highly respected revision specialists. It may seem daunting to travel, but please know that most of us felt the same way, but in the end were glad that we traveled. Take things one at a time. Of course, you want to be free of pain immedialtley if possible, but there really is no rush. You can go at your own pace. If funds are an issue, there are several folks here who know of charitable support. Be aware that it could take several weeks or a month or two for your appointment. So, if you think you may want to go in a couple of months, call now.

You are not alone and there is help out there for you.

Good luck.

Bonnie

[Guest guest]

hello Bonnie thank you

yes since im commission only for 14 yrs selling timeshare i get paid nothing for any time out for any reason. My recent falreup with pain has put out of work since 5/7 i go back 5/23 then have another injection couse on 5/26 so thats 2 days of work ill get.

I dont know where o whom to peak to about financial funding at leat till my short term dis starts which i am applying for. I am moving to a dump 1br just to cut costs in half not in a grea area either of vegas my rent is onlu 620 a mo plus util better than 1200 a mo , then my COBRA whcih i need is 1000 montjh

ita hard to type because my brain is sending wrong key stoke signals this is new in lsat few wks'

such a good person you are and the best o fGod favor to you. Need to work up energy to go walk the old dog now thanks again

your new frienddonna

Donna

310-595-6462

From: bonnie@...Date: Tue, 19 May 2009 17:15:59 -0400Subject: [ ] Re: HAVE Flatback and considering surgery intractable pain

HI Donna,

You have found the right place for help. We understand your situations because some of us have been there and went on to have revision surgery and others here are still waiting to decide what to do or are in the process heading for revision.

I had my original H-Rod scoli surgery in 1977 at 36 yrs of age and my Flatback revision surgery in 1997, at 56. I've been on scoli boards for the last ten years. I can tell you that most people make the decision to have revision surgery because they can no longer stand the pain and diminished lifestyle that Flatback brings. It is a miserable surgery to contemplate, but, for me a lifetime of Flatback pain and diminished lifestyle was simply unacceptable. Especially because revision surgery offered me an alternative. No guarantees, of course, but at least a chance.

I think you said you were afraid that surgery won't help you. As far as I know, however, and I am not a medical professional, there is truly no other long term option. As difficult as the surgery and recovery period are, I have never heard of anyone who is sorry they had the surgery. Certainly, not everyone gets an absolutely perfect outcome, including me. But, even with some slight balance problems because of nerve damage and some continuing pain, I now have a full, rewarding life. A cane and exercise help with my balance issues and a pain doc and occasional accupressure and cranial sacral therapy help my pain issues. Revision surgery gave me my life back. I am a happy lady.

Here you'll find loads of help and advice about getting through this experience. To start with, I agree with Cam that it is very important to get at least 2 opinions from the highly respected revision specialists. It may seem daunting to travel, but please know that most of us felt the same way, but in the end were glad that we traveled. Take things one at a time. Of course, you want to be free of pain immedialtley if possible, but there really is no rush. You can go at your own pace. If funds are an issue, there are several folks here who know of charitable support. Be aware that it could take several weeks or a month or two for your appointment. So, if you think you may want to go in a couple of months, call now.

You are not alone and there is help out there for you.

Good luck.

Bonnie

[Guest guest]

i called for an appt with dr berven in Sf once i get in i ll see about staying in vegas depends on recovery time i have multiple procedures to be done

Donna

310-595-6462

From: donnadavis609@...Date: Fri, 22 May 2009 04:06:47 +0000Subject: [ ] Re: HAVE Flatback and considering surgery intractable pain

I dont know anyone to drive me to SF but i can check around i prefer so california opposed to SF cause i have more support there. Also my lease is ready to expire so id love o put tuff in storage pop inot hte hopityal have the surgery come out and get a place or get place in s cal 1br real cheap prior to s surgery,>> Donna,> > I have read your posts and my heart goes out to you. Please don't give up. You do not need to move to see a doctor in another state as many at this site will tell you. It can be complicated to arrange, but it can be done. I do understand how hard it is to keep moving forward when your body is going through such torment, but you have many people here who are going through, or have gone through, what you are experiencing. Do you have friends or family near you in Vegas? Would you be able to fly or have someone drive you to SF to see the doctor there? Perhaps if you called the specialist in SF they might have some suggestions as to how you might be able to see them. You are obviously a strong woman and you are tapping into a good source by connecting with the people at this forum. Keep up the fight. > Jeanne> > > [ ] HAVE Flatback and considering surgery intractable pain> > > i have been diagonosed by 3 alternate ortho drs that i need a flatback spine salvage sugery and there are many types of procedures they do depends on your case. > > My recent odd symptoms have caused me to go to a neuro dr because i have strong inovluntary jerking of limbs and involuntary voice projections asleep or awake, even voice and have trouble swallowing. Hiccups whihc are related only if i try to eat something I was told this can come from complications from the severe nerve damge just discovered in my last MRI 3 dys ago. > > So i have put off the recision surgery for 2 yrs now when first told i needed it at 40yo now 42 and its progressing and causing more pain and wierd involuntary body spams while asleep or awake. Ive been out of work )sales work on commission) on FMLA for over a wk now and once i decide to do the surgery with Bridwell at U of MA id haveto be prepared to MOVE give my dog to soemone to take care of , be in the hospital anywhere from 3-6 mos i have a dog am single and have no one to do my banking calls to LTD for my compnay mail checks etc. I also have learned that a single revision process may not be the end it could require more surgery so im praying for wisdom to either stick with the debilitating lifestyle go no where all i can manage is walk the old dog and immeditaely take to a recliner to relieve preessure , gianed weight though i havent eaten i dont have a taste for food for months now. Im living off yogurt drinks and fat free ice cream everything else makes me nauseaus.> > Wish i knew of a qualified West CST surgeon that does this surgeyr as specialist.> > Swithced my meds from 10mg/325 percocets to dilaudid whcih gave me headaches and now on OPANA 10 mg 4 times or more a day, soma 350 6 pills a day, avenza morphine 90 mg 1x a day and 10mg of valium to stop the jerking so i can rest. NONE works I was once a tv actress and now wihtout sleep and all this pain i feel and look in my 50s no offesne. I am back on a walker have done a total of 13 epidurals an! d spine blocks on facet joints and 2 RF radio frequency abaltions to kills some nerves that cause pain. NOTHING works. > > I tokd my dr 2 dys ago im not going to take this anymore and i do have a a gun and told him its better off dad then lving with intractable pain. He was worried and said we will do whatever it takes to ease this. I wanna know why me, successful gymnast since 4 yo and and after scoliosis surgery stoped my gymnastics i went into to being a well known tv actor, now i cant stand staight and look like im face down with flatback . I mean GOD gimme a break already. > > If they said one revision surery would do it and give a min of 30% improvment i say go on, BUT they tell me often multiple osteotmies are often needed when you are fused past L5 and have ssevere DDD facet aftrhosis, bla bla, as a Chritsian i wont pull the trigger BUT i cannot wait to die and go on the the Lord, He has the answers we cant figure out and i cant wait to ask why....for ALL OF USgnite>