Re: MS?? Me??

[Guest guest]

Hi Joanne,

Welcome to the site, but like I just wrote to our other new member,

Sherri, I'm sorry that you are having problems.

Hope you will like this group, find it supportive and will feel free

to ask any nitty gritty questions that you have. Also hope you will

tell us more about yourself. Anything you'd like to share would be

of interest and helpful (the things I'm curious about are listed

below, but just ignore me if they seem too nosy or overwhelming at

this point).

Do you have Harrington Rods? How long is your current fusion? Have

you scheduled revision surgery, and if yes, with whom? What was the

main symptom which led the docs to a diagnosis of MS? When your doc

declared you structurally sound in 2002, had he done an xray from the

side? Since you're having hip pain, have you had your hips x-rayed?

Wishing you, me, and everyone else much strength (and luck) with

dealing with our medical issues,

loriann

>

>

> This is my first time posting to this site. After suffering from

> severe back pain since last March I finally mustered up the courage

> to go back and visit the orthopedic surgeon to get the diagnosis I

> have feared for so long. The surgeon confirmed flatback syndrome

> and recommended the anterior/posterior surgery. What has prompted

> me to write is that I was diagnosed with MS 13 years ago and have

> struggled sorting through the symptoms over the past few years.

> Three years ago I began to suspect that my back was causing a lot

of

> the symptoms I was having, but the neurologist felt it was best to

> treat the symptoms as MS since in 2002 the orthopedic surgeon

> declared I was still structurally sound. But last March I

developed

> excruciating pain in my left hip and back, and in spite of physical

> therapy and exercise, it's been going rapidly downhill ever since.

> Turns out I was right.

>

> Anyway, I know a lot about living with MS. If I can be of any

help,

> just ask. If you don't mind saying, which neurologist are you

going

> to see for the MS?

>

> I recommend getting L. Weiner's new book, Curing MS: How

> Science is Solving the Mysteries of Multiple Sclerosis. It gives

the

> history of the development of treatments for the disease and their

> effectiveness, right up to the present.

>

> Joanne

[Guest guest]

I just got back from a doctors appointment and have to get back to work, but I

will be happy to answer most of the questions you posed later today.

I saw Dr. Glazer last week and am still digesting all the information. I would

be interested, , if you could share with me your experience with Dr.

Glazer, and if he performed the surgery on you, what your experience was like at

the BIDMC. I have not had any back surgery since the original surgery performed

in 1966 at Children's Hospital in Boston, so I am very anxious about it.

Joanne

[Guest guest]

Dr. Glazer did my revision at the BI 3 1/2 years ago. I love him, and the

nurses at BI were very good - did you have any specific questions?

Re: Re: MS?? Me??

I just got back from a doctors appointment and have to get back to work, but I

will be happy to answer most of the questions you posed later today.

I saw Dr. Glazer last week and am still digesting all the information. I would

be interested, , if you could share with me your experience with Dr.

Glazer, and if he performed the surgery on you, what your experience was like at

the BIDMC. I have not had any back surgery since the original surgery performed

in 1966 at Children's Hospital in Boston, so I am very anxious about it.

Joanne

[Guest guest]

Dr. Glazer did my revision at the BI 3 1/2 years ago. I love him, and the

nurses at BI were very good - did you have any specific questions?

Re: Re: MS?? Me??

I just got back from a doctors appointment and have to get back to work, but I

will be happy to answer most of the questions you posed later today.

I saw Dr. Glazer last week and am still digesting all the information. I would

be interested, , if you could share with me your experience with Dr.

Glazer, and if he performed the surgery on you, what your experience was like at

the BIDMC. I have not had any back surgery since the original surgery performed

in 1966 at Children's Hospital in Boston, so I am very anxious about it.

Joanne

[Guest guest]

How has it worked out? Did the surgery work for you?

> Dr. Glazer did my revision at the BI 3 1/2 years ago. I love him,

and the nurses at BI were very good - did you have any specific

questions?

> Re: Re: MS?? Me??

>

>

>

> I just got back from a doctors appointment and have to get back

to work, but I will be happy to answer most of the questions you

posed later today.

>

> I saw Dr. Glazer last week and am still digesting all the

information. I would be interested, , if you could share with

me your experience with Dr. Glazer, and if he performed the surgery

on you, what your experience was like at the BIDMC. I have not had

any back surgery since the original surgery performed in 1966 at

Children's Hospital in Boston, so I am very anxious about it.

>

> Joanne

>

>

[Guest guest]

Hi, Joanne.

Welcome to the forum, and thank you for the info and encouragement. My PCP

referred me to a Dr. Moray, in Lowell, MA. That's all I know about him.

I'm sorry to hear you also have flatback, and hope you'll get the best treatment

for you.

Sharon

MS?? Me??

This is my first time posting to this site. After suffering from

severe back pain since last March I finally mustered up the courage

to go back and visit the orthopedic surgeon to get the diagnosis I

have feared for so long. The surgeon confirmed flatback syndrome

and recommended the anterior/posterior surgery. What has prompted

me to write is that I was diagnosed with MS 13 years ago and have

struggled sorting through the symptoms over the past few years.

Three years ago I began to suspect that my back was causing a lot of

the symptoms I was having, but the neurologist felt it was best to

treat the symptoms as MS since in 2002 the orthopedic surgeon

declared I was still structurally sound. But last March I developed

excruciating pain in my left hip and back, and in spite of physical

therapy and exercise, it's been going rapidly downhill ever since.

Turns out I was right.

Anyway, I know a lot about living with MS. If I can be of any help,

just ask. If you don't mind saying, which neurologist are you going

to see for the MS?

I recommend getting L. Weiner's new book, Curing MS: How

Science is Solving the Mysteries of Multiple Sclerosis. It gives the

history of the development of treatments for the disease and their

effectiveness, right up to the present.

Joanne

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

[Guest guest]

Hi Joanne - I would be happy to tell you about my experience with

Dr. Glazer. After realizing on my own that I oviously had Flatback,

I saw online about the SRS independent support groups around the

country. At that time ( I now belong to the one here in my homestate

of Rhode Island), there wasn't one in RI, but there was one in

Connecticut, about 35-40 minutes away from me. I went to one and

although the leader of the group wasn't familiar with Flatback (nor

was anyone else at the meetings!), I found the group support

immensely helpful. I gathered all the information I could from the

papers they had there and along with joining this message board, I

was soon " overwhelmed " with all of the information I was getting.

Approximately 6 months after I first diagnosed myself with Flatback

and joingin both of these groups, I received my newsletter from the

CT support chapter that the speaker at the next meeting was going to

be Dr. Glazer of Boston to speak about scoliosis and primarily

Flatback. I was ecstatic as I had not been formally diagnosed at

that time and I was looking forward to hearing what he had to say.

So, my hubby and I ent to the meeting and I was immediately

comfortable with him. His wife had joined him that evening (if I

remember correctly she is a doctor too - but I do not recall her

specialty). They were pleasant and very professional. After the

meeting, he took time to talk with everyone and I couldn't even get

close to him, however, my husband and I had sat right next to his

wife, so I struck up a conversation with her and asked for his

business card and she urged me to call the next day and make an

appointment. I did and metnioned that I had met him the night before

and I got an apoointment for the very next week. Now keep in mind,

that I had called Dr. Rand's office a couple of months before that

and was treated very unprofessionally and downright rudely when I

tried to make an appointment. Rand's receptionist told me that I

would need to bring 3 ft standing xrays, CT scan and MRI results

with me. When I said that I didn't have any, she said I would have

to come to Boston to have them done and it could not be done the

same day of my appointment - which would mean two trips to Boston!!!

When I said that I found difficulty with that, she told me that

there was no other option and she said it rudely. I had mustered up

a lot of nerve to place that phone call and although most people

consider me a thick-skinned, assertive person - that one caught me

off-guard and I chose not to do anything again until this chance

meeting with Dr. Glazer. So, I went for my appointment and I liked

him - very, very much. I had my xrays done there that day before

seeing him and he officially diagnosed me with Flatback and said

that I would need an osteotomy. However, I was and still am

experiencing a great deal of neck pain and he suggested that I take

care of that first. He was extraordianrily professional, warm,

humorous and caring. I felt completely at ease with him. He sent me

on my way with Celebrex, and a script for and cervical MRI and a

spinal CAT Scan. He also urged me to think very carefully about what

was happening to me and to seek other opinions so that I was 100%

comfortable with whatever decision I made. Honestly, that day if I

didn't totally understand, accept and desire other opinions, I would

have signed up for the surgery right there and then with him. I

Fed/Ex'd my MRI and CT Scan results and he NEVER got them. Turned

out to be a botch in the delivery system right there at the

hospital. The films were delivered, signed for but NEVER delivered

to Glazer's office. His help in his office was of no help to me. I

was about as impressed with them as I was with Dr. Rand's help!!!

So, I went to the local hospital here were I had the films taken,

got copies but never resent them for fear they would get lost again

and I would have to start all over as the ones I origionally sent

were the origionals and these are the hospitals only copies. So if I

lose these, I am up the river without a paddle. So that is the end

of my story...I haven't done anything else since. Unfortunately, I

am going downhill quickly here, so I know that in the new year I am

going to have to suck it up and start being more aggressive with the

whole thing. My neck and now my knees are my major source of

discomfort and pain as of late. So, my story has gone on forever and

I apologize if it is filled with more information that you

requested, but I figured I would tell you the whole story.. please

feel free to ask me anything else of him. Bottom line -- I liked him

very much! Please share your story with me.

from RI

PS - Forgot to mention, as it turns out, the leader of the new

support group here in RI had Glazer do her spine surgery (NOT

revision) just a couple of years ago!! She LOVES, LOVES, LOVES him!

She literally worships the ground he walks on! So there is another

positive.

[Guest guest]

1966? We might have passed each other in the halls, Joanne, as I'm a Boston

Children's alum. Had my surgery at the Shriners' in Springfield, 1971, though.

Re: Re: MS?? Me??

I just got back from a doctors appointment and have to get back to work, but I

will be happy to answer most of the questions you posed later today.

I saw Dr. Glazer last week and am still digesting all the information. I would

be interested, , if you could share with me your experience with Dr.

Glazer, and if he performed the surgery on you, what your experience was like at

the BIDMC. I have not had any back surgery since the original surgery performed

in 1966 at Children's Hospital in Boston, so I am very anxious about it.

Joanne