Hello, I'm New Here

[Guest guest]

Hi, Lynda,

How far are you from Vermont?  I had scoli surgery at 53yo for a 65/76 degree

curve with a twist and kyphosis.  Knowing that my surgeon is no god, I'd

like for you to consider having your xrays sent to him and maybe he can get back

to you with his opinion, if that's possible w/o a visit to him.  His name is

Monsey, MD, a scoli specialist at Fletcher Health Care in

Burlington, VT.  The phone number for the hospital is

 

802-847-0000 and ask for Dr. Monsey's office.  Just see what he says.  I'll

bet he could fix it, rods and all.

 

Lana

From: justlynda59 <justlynda59@...>

Subject: Hello, I'm New Here

Scoliosis Treatment

Date: Thursday, February 25, 2010, 11:45 PM

 

Hi, My name is Lynda.

I am 50 years old and have severe scoliosis (110 degree/85 degree). I was born

with it and it was left untreated with a " wait and see " attitude. I was told at

a scoliosis clinin when I was 20 that I wouldn't curve anymore because I was

finished growing. At the time my curves were " only " 85 degree/63 degree. Imagine

my horror at age 39 when I began to have chronic pain and I found out how much

it had progressed. In 2001 I had surgery. No correction was possible. It was to

keep it from getting any worse. I have 4 rods. Surgery did not relieve my pain.

I've been on SS since 1998.

I have begun to have a painful arm that is numb and tingly at times. It's very

painful. My dr thinks it's a nerve in my neck. Sometimes my other arm hurts too,

but not as bad and no numbness or tingling. I also have begun to have pain in my

legs and they are becoming unreliable at times. I just can't wrap my brain

around it that a nerve in my neck can cause this. This would be just above my

fusion. I believe it would require yet another metal plate.

Has anyone on here had this happen to them? He wants me to see a neurologist/

surgeon. I don't want another surgery. I'm feeling a little nervous wondering

how far this could progress. Should I wait and see about this or is it something

I should take care of right away?

I would really appreciate any feedback I could get here.

~Lynda~

[Guest guest]

While flatback is the main focus, many of the members have other problems

related to their scoliosis and are really great about sharing their experiences

and passing on tips for doctors to see and treatments that have helped. It

certainly can't hurt to give them a try!

Jeanne

Hello, I'm New Here

Hi, My name is Lynda.

I am 50 years old and have severe scoliosis (110 degree/85 degree). I was born

with it and it was left untreated with a " wait and see " attitude. I was told at

a scoliosis clinin when I was 20 that I wouldn't curve anymore because I was

finished growing. At the time my curves were " only " 85 degree/63 degree. Imagine

my horror at age 39 when I began to have chronic pain and I found out how much

it had progressed. In 2001 I had surgery. No correction was possible. It was to

keep it from getting any worse. I have 4 rods. Surgery did not relieve my pain.

I've been on SS since 1998.

I have begun to have a painful arm that is numb and tingly at times. It's very

painful. My dr thinks it's a nerve in my neck. Sometimes my other arm hurts too,

but not as bad and no numbness or tingling. I also have begun to have pain in my

legs and they are becoming unreliable at times. I just can't wrap my brain

around it that a nerve in my neck can cause this. This would be just above my

fusion. I believe it would require yet another metal plate.

Has anyone on here had this happen to them? He wants me to see a neurologist/

surgeon. I don't want another surgery. I'm feeling a little nervous wondering

how far this could progress. Should I wait and see about this or is it something

I should take care of right away?

I would really appreciate any feedback I could get here.

~Lynda~

[Guest guest]

Hi Lana,

   I am in land. I had surgery at s Hopkins University Hospital in

Baltimore (2 hours from home) in 2001. My 110/85 curves were not corrected, 4

rods were attached, and I had bone from my hip applied to fuse the spine from my

collar bone almost to the tail bone. I don't have the notes in front of me to

give the specifics. It is my understanding that there were only 1 or 2 vertabrae

on each end that weren't fused. I have not been back to my scoli specialist

since post-surgery follow-up visits.

   Now the pain is in the neck and my limbs. My PCP believes it to be cervical

disorder and has given me a referral to a spine specialist here in my town that

wasn't available here in 2001. I am afraid to go and I am afraid not to go.

Thank you for providing your doctors information. Unfortunately I am not short

on scoli specialist, but short on courage. I've been through so much already.

I thought it was over...as over can be. There was nothing more that could be

done for the scoli except pain management and I've accepted that. But now there

is this.

   Thank you so much Lana.

~Lynda~

________________________________

From: Lana Jarvis <fyfer1949@...>

Scoliosis Treatment

Sent: Tue, March 2, 2010 1:32:30 AM

Subject: Re: Hello, I'm New Here

 

Hi, Lynda,

How far are you from Vermont?  I had scoli surgery at 53yo for a 65/76 degree

curve with a twist and kyphosis.  Knowing that my surgeon is no god, I'd

like for you to consider having your xrays sent to him and maybe he can get back

to you with his opinion, if that's possible w/o a visit to him.  His name is

Monsey, MD, a scoli specialist at Fletcher Health Care in

Burlington, VT.  The phone number for the hospital is

 

802-847-0000 and ask for Dr. Monsey's office.  Just see what he says.  I'll

bet he could fix it, rods and all.

 

Lana

From: justlynda59 <justlynda59>

Subject: Hello, I'm New Here

Scoliosis Treatment

Date: Thursday, February 25, 2010, 11:45 PM

 

Hi, My name is Lynda.

I am 50 years old and have severe scoliosis (110 degree/85 degree). I was born

with it and it was left untreated with a " wait and see " attitude. I was told at

a scoliosis clinin when I was 20 that I wouldn't curve anymore because I was

finished growing. At the time my curves were " only " 85 degree/63 degree. Imagine

my horror at age 39 when I began to have chronic pain and I found out how much

it had progressed. In 2001 I had surgery. No correction was possible. It was to

keep it from getting any worse. I have 4 rods. Surgery did not relieve my pain.

I've been on SS since 1998.

I have begun to have a painful arm that is numb and tingly at times. It's very

painful. My dr thinks it's a nerve in my neck. Sometimes my other arm hurts too,

but not as bad and no numbness or tingling. I also have begun to have pain in my

legs and they are becoming unreliable at times. I just can't wrap my brain

around it that a nerve in my neck can cause this. This would be just above my

fusion. I believe it would require yet another metal plate.

Has anyone on here had this happen to them? He wants me to see a neurologist/

surgeon. I don't want another surgery. I'm feeling a little nervous wondering

how far this could progress. Should I wait and see about this or is it something

I should take care of right away?

I would really appreciate any feedback I could get here.

~Lynda~

[Guest guest]

Lynda,

Fear is a brick wall. Getting information by seeking the new doctors

assessment could help overcome it. There are great books on fear and how to

overcome it. My favorite is by Thom Rutledge called Embracing Fear.

I know first hand about how fear and denial can stop you from taking

steps in facing spine surgery. I was in denial, then fear for 20 years before

my 2nd surgery. By then my bones were not strong enough to hold the

screws. I regretted the denial and fear I had from postponing what I should

have

done to take care of my spine.

With the book, support, and xanax my goal was to walk in the or strongly

knowing I was doing the right thing for me, finally. Then my bones had

another plan. I return in October for another try. Am I looking forward to

it? No. But my quality of life is getting far too restrictive. My new

grandchild deserves a nana who can play.

Jolene Morell

Shop online at _www.InheritedButtons.com_

(http://www.inheritedbuttons.com/)

[Guest guest]

Hi Jeanne,

I was reading your email to Lynda, and you mentioned a cyst on your spine that

ruptured.  Is that the same thing as a syrinx?  My 13 year old son has one on

his spine.  Were going to see the neurosurgeon next week.  He also will have

to have a spinal fusion in the future.  I'm sorry for your pain and wish you

well..  Thanks for your help.

________________________________

From: Slinker <slinkers5@...>

Scoliosis Treatment

Sent: Fri, February 26, 2010 12:27:04 PM

Subject: Re: Hello, I'm New Here

 

Hi Lynda,

I am so sorry that you are suffering so much. I am also have scoliosis, my " C "

curve was corrected 30 years ago when I was 17. I currently am dealing with

lower back pain and pain in my right hip and leg. I have also had to have a

synovial cyst in my spine ruptured early last year as it was pressing on my

spinal column and causing me tremendous pain.

That said, I am not dealing with the issues that you have, but I know of two

other groups that included many members who can relate to what you are going

through. The groups are called: FeistyScolioFlatbac kers@groups .com and

.

Many people have been operated on for scoliosis and some of those people found

that they were worse off after surgery, or that they were better but eventually

developed other problems. I found these groups a year ago when I was trying to

figure out what was going on with my back. There are many people in both groups

that are extremely supportive, who understand what you are going through, and

can direct you to information about scoliosis and to surgeons who may be able to

help you.

I wish you all the best and hope you are able to find treatment that will help

you lead a pain free life.

Jeanne

Hello, I'm New Here

Hi, My name is Lynda.

I am 50 years old and have severe scoliosis (110 degree/85 degree). I was born

with it and it was left untreated with a " wait and see " attitude. I was told at

a scoliosis clinin when I was 20 that I wouldn't curve anymore because I was

finished growing. At the time my curves were " only " 85 degree/63 degree. Imagine

my horror at age 39 when I began to have chronic pain and I found out how much

it had progressed. In 2001 I had surgery. No correction was possible. It was to

keep it from getting any worse. I have 4 rods. Surgery did not relieve my pain.

I've been on SS since 1998.

I have begun to have a painful arm that is numb and tingly at times. It's very

painful. My dr thinks it's a nerve in my neck. Sometimes my other arm hurts too,

but not as bad and no numbness or tingling. I also have begun to have pain in my

legs and they are becoming unreliable at times. I just can't wrap my brain

around it that a nerve in my neck can cause this. This would be just above my

fusion. I believe it would require yet another metal plate.

Has anyone on here had this happen to them? He wants me to see a neurologist/

surgeon. I don't want another surgery. I'm feeling a little nervous wondering

how far this could progress. Should I wait and see about this or is it something

I should take care of right away?

I would really appreciate any feedback I could get here.

~Lynda~

[Guest guest]

   Thank you Jolene. I've taken the first step. The spine specialist won't

even schedule an appointment for me until they receive all records from s

Hopkins Hospital, including operating room notes. I've sent for them.

    I just don't fear for myself but for those who depend on me. My 3

daughters are now young adults in college. My parents are aging. I need to be

able to do the things that a parent and a daughter should do. My parents already

avoid letting me do things for them that they shouldn't be doing and it hurts

and it worries me. Once they see me going back to doctors and perhaps another

surgery...the gig will be up.

   My ex-husband fell out of love with me when I had my last surgery in 2001.

Our kids were little and he needed to step up to the plate and he just couldn't

do it. He saw me as old and decrepit. After he left I improved and no longer use

a cane (determination). My current husband of 2 years has no idea of my

struggles. I don't want him to know.

    After all I've been through and everything is good...more problems with

the spine? If my neck is fused I will be fused from tip to tail! I don't like

how it makes me feel about myself and how my family will see me. Pride, I know.

   I'm taking baby steps though toward getting help. I have no choice when I

have burn marks on my arms because I cant feel it when they touch the oven. I

didn't even know I was burned until my daughter saw them and fussed about it.

I'm at the point where I have no choice.

   Thank you for taking the time to reply Jolene. I'm glad you were able to

face your surgery and I hope for better results for you in October.

     ~Lynda~

 

________________________________

From: " Buttonjo@... " <Buttonjo@...>

Scoliosis Treatment

Sent: Fri, March 5, 2010 3:00:58 PM

Subject: Re: Hello, I'm New Here

 

Lynda,

Fear is a brick wall. Getting information by seeking the new doctors

assessment could help overcome it. There are great books on fear and how to

overcome it. My favorite is by Thom Rutledge called Embracing Fear.

I know first hand about how fear and denial can stop you from taking

steps in facing spine surgery. I was in denial, then fear for 20 years before

my 2nd surgery. By then my bones were not strong enough to hold the

screws. I regretted the denial and fear I had from postponing what I should have

done to take care of my spine.

With the book, support, and xanax my goal was to walk in the or strongly

knowing I was doing the right thing for me, finally. Then my bones had

another plan. I return in October for another try. Am I looking forward to

it? No. But my quality of life is getting far too restrictive. My new

grandchild deserves a nana who can play.

Jolene Morell

Shop online at _www.InheritedButto ns.com_

(http://www.inherite dbuttons. com/)

[Guest guest]

Lynda,

You are not weak, you are strong. Not in a physical sense, but in a

mental sense. You are a survivor and have proved it over and over. You must

start to see that in yourself. Taking care of yourself must come to the top

of your priorities so you can be strong for your daughters, your husband,

and parents. Start sharing your load with your new husband. Trust him by

letting him know your problems with your spine. He won't run away like the

last jerk, but he must know before it become a crisis.

I went to a hypnotherapist before my surgery and found he really helped me

develop a backbone. One session, $90 and I got a cd to play at home. It

was the best $ I've ever spent. (hypnosis is not like you see on tv, you

aren't in a trance or unaware of doing things)

Good luck to you. You are not alone.

Jolene Morell

Shop online at _www.InheritedButtons.com_

(http://www.inheritedbuttons.com/)

[Guest guest]

Just thought I'd join to see if anyone has any advice.

For the past month I've been having, on and off, bouts of what feels like my

insides (bowels mostly) being beaten with a baseball bat. Been to ER's but

nothing resolved.

Failed to mention to the ER docs that I have not had a real BM in all that time

either. Once in a while I would have a liquid " ass pee " but nothing great. I

saw my gastroenterologist on Thursday and he put me on Miralax and told me to

give it a few days to work. It's Saturday night here in NJ and still NOTHING!

I've also been using prune juice which ALWAYS worked for me but now NOTHING! 3

hours ago I drank the entire 10 oz bottle of magnesium citrate and so far

NOTHING! I'm going to wait for the recommended 6-7 hour period and if still

NOTHING I'm going to my local ER and insist that they clean me out.

I know they can do this. The pharmacist who sold me the mag citrate told me

that she was in EXACTLY my shoes and our local ER gave her some " brown stuff " to

drink that put her on one of the hospital's crappers for several hours, on and

off, but the stuff WORKED!

I know that even if they do this it's not the same as a diagnosis but at least

it will bring RELIEF!

I'm 71 but until recently I have not had problems in this area.

Any thoughts, ideas, suggestions?

Tom