RE: HAVE Flatback and considering surgery intractable pain [1 Attachment]

[Guest guest]

Donna,

There is light in your words, you have goals and hopes, and in life all of us need that to keeps us moving forward. The Scoli beast takes a lot, but for me it gave me gifts too, it's all in how you look at it. Empathy and compassion became a part of my life because of my battle. I now because of what I went through help here on the site Cam was so wonderful to start and maintain, but also help patients of my surgeon too, as they go through the run up to surgery, and after recovery. My hope is that all Flatback patients have support, good answers, can find qualified doc's, and never, never, get ignored, or told nothings wrong, or not listened too, like I did for years.

Don't beat yourself up, pain drains you, know things can be better. Doc's that do this work, the best at it, are for the most part in major cities, and most will have to travel to get to one. Wish every state had one, it's just not the case. Bridwell is excellent, and would be worth a trip out to see. Dr. Hu at UCSF to would be worth traveling to, and probably an easy flight from Vegas. Dr.LaGrone in Amarillo is also worth a go see.

I get what arm jerks are, my son does that from his myeoclonic epilepsy, hard on him and embarrassing for him when he spills something, or hits himself from it. he takes med's for it, it's somewhat better, not as frequent.

I think since you seem to be progressing with symptoms, that you find a way to get out to some surgeons for a consult. What does your neuro say, could some of this be a MS problem, since your sister has/had it. in our group also has MS, and would be a wonderful help to you if you find yourself with that diagnosis too.

Part of the journey will be filled with what if's, and not everyone comes out of it all as well as I did, but truly with all my time on the boards, most all have real improvement, some more than others, but I've only heard of a couple with real regrets about having the surgery. For me I couldn't have had soon enough, I wanted the shot at being better, felt like I had little to lose, and much to gain. Easy, NO, and took more surgery than I'd like, but I came out the other end better than I hoped for. If I had only gotten an 50 percent reduction in pain, and got more upright I would have been happy.

I get the breaking point, but you just have to adjust, and move towards your answers. I'm not trying to make light of all this, just trying to get you to see that despite all that has been thrown at your body, that you have to live with hopeful energy, that your mind has to be set on working towards your goal, your mind is host to healing, you have to be open to capturing as whole of a you as is possible. I truly believe thats what got me through, I kept an image in my mind of me walking, and standing, and doing things with my kids, and I didn't let go of it. I wanted my life back. And I had setbacks, but for some reason I was able to not let any of them defeat me. My doc and I worked through the process, I gave the surgery part to him, but the healing was all on me.

Donna, know we all get what you are feeling, some of us it's more profound than others, and someone will read what you had to say, and see themselves in what you said. But also know, hope is a powerful thing, but hope with homework, learning, and sharing. We help each other through the tough things, and it's a blessing to not have to explain everything, that there is a shared knowledge, as non of our ABLE spined friends will understand, try as they may.

Hang in there gal, find your doc, and move forward, you are stronger than the forces that has wreaked havoc on your body, stand up to the beast, and give him a swift kick in the ass, I did, and it's a powerful feeling.

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]

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 live in the Las Vegas area and had surgery at UMC this

past February. Feel so much better after surgery. It was well worth

it. I would highly recommend getting an opinion from my surgeon, Dr.

McNulty at Nevada

Orthopedic & Spine. Phone number (702) 258-3773. Since you

listed your phone number in your e-mail below, I will try calling you this evening.

Take care.

Jodi

From: [mailto: ] On Behalf Of Donna

Sent: Monday, May 18, 2009 11:37

AM

To:

Subject: RE: [ ]

HAVE Flatback and considering surgery intractable pain [1 Attachment]

[Attachment(s) from Donna included

below]

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 it

thank you sus for reaching out to me today

your new friend

Donna

310-595-6462

From: .KirkaldieComcast (DOT) net

Date: Sun, 13 Jan 2002 15:51:44 -0700

Subject: 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

[Guest guest]

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

>