New --- About Me and Questions

[Guest guest]

HI.....

I have been lurking for a few months and have acquired a lot of

knowledge and information from this group. Thanks to all.

I am 55 and had my herrington rod put in by Dr Keim in 1979, at age

27. At that time, I have a 110 and 55 degree curve. He told me if I

did not have the surgery it would kill me, as my spine was going

toward my lungs. I got correction to 82 degrees in the thoracic

level and 35 degrees in the lumbar spine. I also was 2 inched

taller. All was fine for 25 years.

In 2004, I was have some breathing problem and went to see Dr

Boachie. He said the breathing problem was not caused by the

scoliosis. At that time, I really did not have any pain, so he did

not think any revision surgery should be done, if there was no pain..

The beginning of this year I started have back pain and tingling in

my right arm and leg. I also lost the 2 inched I gained at the time

of my surgery. I have a hard time at night finding a comfortable

position for sleeping because I still have a large hump. I feel like

my upper body is twisting. I went to see a local Orthopedic doctor

and he told me I was getting old and there is nothing that can be

done. When I asked about Flatback he told me everyone with a

herrington rod has it. Is this true?

He did have me go to PT for a few weeks but now I am doing the

exercise at home. My job requires 10 hour days sitting at a

computer and phone. I am currently out on Short Term Disability from

my job ( 3 months), to see if not sitting for 10 hours will help the

pain, it helps but it does not go completely away , but anything is

a help. I will then have to see if the doctor and my employee will

extend the STD or it I will retire. I just can not sit that long.

I do not accept that all pains are from getting old and will be

going to see Dr Boachie again.

I have a few questions I am hoping someone may be able to answer.

1) Is revision surgery only for Flatback?

2) Is there additional height gain with revision surgery, like with

the first surgery?

3) Is there a surgery that can just reduce the hump? Would they do

it on a person of my age?

4) Is it possible that my upper body can be twisting? I would think

the herrington rod would prevent that?

5) Has anyone gotten there old records from Dr. Keim? If so, how

would I go about getting mine.

Thanks in advance for any help/advise you can give me.

Arlene

[Guest guest]

Hi Arlene

Your message really caught my eye. We are in pretty much the same time

frame in a lot of aspects. Had my Harrington rod put in in 1977 when I

was 25 (I had the lovely s curve too). Although I did have immediate

symptoms of flatback, I got through the last 20 plus years just fine.

You questioned your age for having a surgery like 'this'. I am 54 now

and scheduled for revision surgery in Dec.

[Guest guest]

I'm certainly no doctor, but from what I've been led to believe, yes,

pretty much everyone with a Harrington Rod gets flatback. But, to

qualify that, I think it depends more on how long the fusion is--or

how far into the lumbar area it extends. I'm fused to L4, others to

L5, and pretty much anyone fused that long has flatback. Maybe

someone else could chime in here and not make me feel like I'm

putting my foot in my mouth?

Yes, there's definitely a surgery that will reduce the hump is

called " thoracoplasty " and I have asked Dr. Hu about doing it on my

large thoracic right rib hump. She said she could, but not on my

lower left one, because the lower one is from rotation. My curves

were around 75 degrees before (upper)and 50 something for the lower

and only got about 50 percent correction, so I'm still curved.

Carol V (CA)

>

> HI.....

> I have been lurking for a few months and have acquired a lot of

> knowledge and information from this group. Thanks to all.

>

> I am 55 and had my herrington rod put in by Dr Keim in 1979, at age

> 27. At that time, I have a 110 and 55 degree curve. He told me if

I

> did not have the surgery it would kill me, as my spine was going

> toward my lungs. I got correction to 82 degrees in the thoracic

> level and 35 degrees in the lumbar spine. I also was 2 inched

> taller. All was fine for 25 years.

> In 2004, I was have some breathing problem and went to see Dr

> Boachie. He said the breathing problem was not caused by the

> scoliosis. At that time, I really did not have any pain, so he did

> not think any revision surgery should be done, if there was no

pain..

> The beginning of this year I started have back pain and tingling in

> my right arm and leg. I also lost the 2 inched I gained at the time

> of my surgery. I have a hard time at night finding a comfortable

> position for sleeping because I still have a large hump. I feel

like

> my upper body is twisting. I went to see a local Orthopedic doctor

> and he told me I was getting old and there is nothing that can be

> done. When I asked about Flatback he told me everyone with a

> herrington rod has it. Is this true?

> He did have me go to PT for a few weeks but now I am doing the

> exercise at home. My job requires 10 hour days sitting at a

> computer and phone. I am currently out on Short Term Disability

from

> my job ( 3 months), to see if not sitting for 10 hours will help

the

> pain, it helps but it does not go completely away , but anything is

> a help. I will then have to see if the doctor and my employee

will

> extend the STD or it I will retire. I just can not sit that long.

>

> I do not accept that all pains are from getting old and will be

> going to see Dr Boachie again.

>

> I have a few questions I am hoping someone may be able to answer.

> 1) Is revision surgery only for Flatback?

> 2) Is there additional height gain with revision surgery, like with

> the first surgery?

> 3) Is there a surgery that can just reduce the hump? Would they do

> it on a person of my age?

> 4) Is it possible that my upper body can be twisting? I would

think

> the herrington rod would prevent that?

> 5) Has anyone gotten there old records from Dr. Keim? If so, how

> would I go about getting mine.

>

> Thanks in advance for any help/advise you can give me.

>

> Arlene

>

[Guest guest]

HI Arlene,

I gained height. I gained back the 2 inches I lost since the first

surgery. It was the same, I lost 2 inches, had the first surgery

gained it back, lost it again and gained it back with revision. I

had a harrington rod and twisted up and it was not broken. What

happened is my lumbar collapsed and I twisted forward on my hips and

to the left. So, it is possible and I am sure it is with other

scenarios. Sorry, I am unable to answer any of the other questions.

I am 4 months post op from revision, getting stronger and straighter

by the day.

>

> HI.....

> I have been lurking for a few months and have acquired a lot of

> knowledge and information from this group. Thanks to all.

>

> I am 55 and had my herrington rod put in by Dr Keim in 1979, at

age

> 27. At that time, I have a 110 and 55 degree curve. He told me if

I

> did not have the surgery it would kill me, as my spine was going

> toward my lungs. I got correction to 82 degrees in the thoracic

> level and 35 degrees in the lumbar spine. I also was 2 inched

> taller. All was fine for 25 years.

> In 2004, I was have some breathing problem and went to see Dr

> Boachie. He said the breathing problem was not caused by the

> scoliosis. At that time, I really did not have any pain, so he

did

> not think any revision surgery should be done, if there was no

pain..

> The beginning of this year I started have back pain and tingling

in

> my right arm and leg. I also lost the 2 inched I gained at the

time

> of my surgery. I have a hard time at night finding a

comfortable

> position for sleeping because I still have a large hump. I feel

like

> my upper body is twisting. I went to see a local Orthopedic

doctor

> and he told me I was getting old and there is nothing that can be

> done. When I asked about Flatback he told me everyone with a

> herrington rod has it. Is this true?

> He did have me go to PT for a few weeks but now I am doing the

> exercise at home. My job requires 10 hour days sitting at a

> computer and phone. I am currently out on Short Term Disability

from

> my job ( 3 months), to see if not sitting for 10 hours will help

the

> pain, it helps but it does not go completely away , but anything

is

> a help. I will then have to see if the doctor and my employee

will

> extend the STD or it I will retire. I just can not sit that long.

>

> I do not accept that all pains are from getting old and will be

> going to see Dr Boachie again.

>

> I have a few questions I am hoping someone may be able to answer.

> 1) Is revision surgery only for Flatback?

> 2) Is there additional height gain with revision surgery, like

with

> the first surgery?

> 3) Is there a surgery that can just reduce the hump? Would they do

> it on a person of my age?

> 4) Is it possible that my upper body can be twisting? I would

think

> the herrington rod would prevent that?

> 5) Has anyone gotten there old records from Dr. Keim? If so, how

> would I go about getting mine.

>

> Thanks in advance for any help/advise you can give me.

>

> Arlene

>

[Guest guest]

Hi Carol...

Did Dr. Hu lead you to believe that everyone with Harrington rods will eventually get flatback? That’s certainly not my understanding.

Regards,

On 9/3/06 5:58 PM, " Carol " <dcvaughan@...> wrote:

I'm certainly no doctor, but from what I've been led to believe, yes,

pretty much everyone with a Harrington Rod gets flatback. But, to

qualify that, I think it depends more on how long the fusion is--or

how far into the lumbar area it extends. I'm fused to L4, others to

L5, and pretty much anyone fused that long has flatback. Maybe

someone else could chime in here and not make me feel like I'm

putting my foot in my mouth?

Yes, there's definitely a surgery that will reduce the hump is

called " thoracoplasty " and I have asked Dr. Hu about doing it on my

large thoracic right rib hump. She said she could, but not on my

lower left one, because the lower one is from rotation. My curves

were around 75 degrees before (upper)and 50 something for the lower

and only got about 50 percent correction, so I'm still curved.

Carol V (CA)

[Guest guest]

No, Dr. Hu did not, but as I said I've probably put my foot in my

mouth. Perhaps I have jumped to conclusions, but from what I've read

online and the info. that I have heard on this forum and others made

me think that. I do know that the instrumentation used nowadays does

not cause flatback. Maybe that's what made me think that.

Carol V. (CA)

> Hi Carol...

>

> Did Dr. Hu lead you to believe that everyone with Harrington rods

will

> eventually get flatback? That¹s certainly not my understanding.

>

> Regards,

>

>

> On 9/3/06 5:58 PM, " Carol " <dcvaughan@...> wrote:

>

> >

> > I'm certainly no doctor, but from what I've been led to believe,

yes,

> > pretty much everyone with a Harrington Rod gets flatback. But, to

> > qualify that, I think it depends more on how long the fusion is--

or

> > how far into the lumbar area it extends. I'm fused to L4, others

to

> > L5, and pretty much anyone fused that long has flatback. Maybe

> > someone else could chime in here and not make me feel like I'm

> > putting my foot in my mouth?

> >

> > Yes, there's definitely a surgery that will reduce the hump is

> > called " thoracoplasty " and I have asked Dr. Hu about doing it on

my

> > large thoracic right rib hump. She said she could, but not on my

> > lower left one, because the lower one is from rotation. My curves

> > were around 75 degrees before (upper)and 50 something for the

lower

> > and only got about 50 percent correction, so I'm still curved.

> >

> > Carol V (CA)

>

[Guest guest]

Hi Arlene,

Welcome to the group. It is nice to see new members who have been

lurking work up the enery to post. Thanks. I am sorry you are having

trouble again. It really stinks...but here we are.

I think I recall someone saying that Dr Errico has the records

from DrKeim...anyone remember for sure?

As to your questions:

> 1) Is revision surgery only for Flatback?

No, I believe any time they go in to fix, repair or redo any prior

work it could be called a " revision " .

> 2) Is there additional height gain with revision surgery, like with

> the first surgery?

I found myself back at the heigth I was at after my first HR surgery

as a teen. I guess I had lost a couple inches, mostly due to the disc

collapsing.

> 3) Is there a surgery that can just reduce the hump? Would they do

> it on a person of my age?

I think that is a great question for your prospective surgeon! There

is a surgery but it may or may not be something you want to undertake.

> 4) Is it possible that my upper body can be twisting? I would think

> the harrington rod would prevent that?

I have read of curves progressing later in life. Again, a good

question for whoever you consult. If you manage to get your old

records (it is unlikely you will get old xrays) at least you will be

able to determine you exact post-op measurements and they will be able

to tell what has changed.

> 5) Has anyone gotten there old records from Dr. Keim? If so, how

> would I go about getting mine.

If it is Dr Erricos office you can probably call them and find out

what their process is. I am guessing a letter will do it.

Please continue to join in and let us know how you make out getting

your info.

Take Care, Cam

[Guest guest]

Dear Arlene,

Welcome to the group, glad you are chimeing in! It's so good to have you be part of the conversation, but I sure wish you weren't having troubles again.

As to your questions:

1. I believe Revision is just going back in and reworking your spine after your orginal surgery. Since my Harrington Rod surgery I have had three more surgeries, a decompression, fusion to the sacrum, and a total reworking of my spine from T-1 to S-1. We here call fusion to the sacrum a " Revision surgery", and I maybe wrong but any spine surgery after our original surgery is probably a revision. My doc never said the term revision, I learned the term from these groups.

2. I gained two and 1/2 inches of height from my last surgery.

3. I had a very large hump on the left side in my lumbar region, it was reduced by 2/3rds by my last surgery. It has helped my appearance, and I can wear clothes better and more comfortably. Age does play into having the surgery done, mostly because our bone strength lessens with the years. Many in these groups have had surgery into their fifties, and tests will be done to see what your bone quality is like. Doc's also have to look at other considerations with your health, heart and lungs. This is a long surgery, and you have to be up to it. The doc you saw can't tell you outright that you are too old till tests are done and they have a better picture of whats going on with you. With Dr. Boachie you are in good hands and I would be more inclined to listen to his opinion.

4. Curves can progress, especially if you have non-unions in your original fusion. I developed a crack in my old Harrington rod fusion mass, and my upper curve progressed alot.

5. Getting old records can be tricky. I had my surgery in 1973 at UCSF, and after much work on my part, and my doc's office we were never able to retrieve my records. I hope someone who had surgery with Dr. Keim will chime in, they could be of help to you, and I think we have a few.

is our great facts person, and she would know better than me, but I read somewhere in the reams of reading I've done about Flatback, that they expect 40 percent of us with Harrington rods will develope Flatback. Maybe the facts on this won't be in for years to come. I guess we would have to wait for the ultimate answer till all of us age and we see how it plays out. I hope for others it's less than what I read, I wouldn't wish this on anyone else.

Once again thank you for posting, glad you are finding help and comfort with us. My, your upper curve sure was a huge #, corrected to 80 some degrees, no wonder you are having trouble in that area. My upper curve got to the 80 degree range after my fusion mass cracked, and it really affected my ability to breathe in fully, and if I got a cold it went straight to my right lung and I had to be on antibiotics. That has greatly improved after my last surgery, it's so nice to get a cold and get over it without having to go to the doc and go on a round or two of antibiotics. I guess that lung was compressed and I just couldn't cough up enough phlem, and it would sit there till I got a lung infection.

Anything I can do to help just ask!

Colorado Springs

[ ] New --- About Me and Questions

HI.....I have been lurking for a few months and have acquired a lot of knowledge and information from this group. Thanks to all.I am 55 and had my herrington rod put in by Dr Keim in 1979, at age 27. At that time, I have a 110 and 55 degree curve. He told me if I did not have the surgery it would kill me, as my spine was going toward my lungs. I got correction to 82 degrees in the thoracic level and 35 degrees in the lumbar spine. I also was 2 inched taller. All was fine for 25 years.In 2004, I was have some breathing problem and went to see Dr Boachie. He said the breathing problem was not caused by the scoliosis. At that time, I really did not have any pain, so he did not think any revision surgery should be done, if there was no pain..The beginning of this year I started have back pain and tingling in my right arm and leg. I also lost the 2 inched I gained at the time of my surgery. I have a hard time at night finding a comfortable position for sleeping because I still have a large hump. I feel like my upper body is twisting. I went to see a local Orthopedic doctor and he told me I was getting old and there is nothing that can be done. When I asked about Flatback he told me everyone with a herrington rod has it. Is this true?He did have me go to PT for a few weeks but now I am doing the exercise at home. My job requires 10 hour days sitting at a computer and phone. I am currently out on Short Term Disability from my job ( 3 months), to see if not sitting for 10 hours will help the pain, it helps but it does not go completely away , but anything is a help. I will then have to see if the doctor and my employee will extend the STD or it I will retire. I just can not sit that long.I do not accept that all pains are from getting old and will be going to see Dr Boachie again.I have a few questions I am hoping someone may be able to answer.1) Is revision surgery only for Flatback?2) Is there additional height gain with revision surgery, like with the first surgery?3) Is there a surgery that can just reduce the hump? Would they do it on a person of my age?4) Is it possible that my upper body can be twisting? I would think the herrington rod would prevent that?5) Has anyone gotten there old records from Dr. Keim? If so, how would I go about getting mine.Thanks in advance for any help/advise you can give me.Arlene

[Guest guest]

Hi, Arlene and welcome to the group. It's great that you became a

poster and not a lurker. Actually, I am probably one of the board's

longest lurkers! I joined the group about the time that it was

started and this is my first post!!!

Anyway, I also had surgery by Dr. Keim, but in 1980 at the age of

17. Two years ago, my lower back hurt so badly that I did some

research and found Dr. ph Dryer, who I believe is Dr. Errico's

partner. I went to see him and when I told him that Dr. Keim

performed my surgery, he told me that he and Dr. Errico took over

Dr. Keim's practice and that all of his old files were in the

basement of the building we were in (in Millburn, NJ).

If you are interested in retrieving your file, you might check with

Dr. Dryer's office. Here is his website:

http://www.jdryerscoliosis.com/index.html

As far as my spine, Dr. Dryer told me to keep my weight down,

exercise and take in plenty of calcium - basically live a healthy

lifestyle. I have been following what he told me to do and my back

feels pretty good, although I can't sit too long without feeling a

lower back strain.

I pray that your back is feeling better as I have prayed for many of

you over this past year.

~~Suzanne,

Homeschooling mom of 2, striving to stand straight & fighting my

son's cystic fibrosis one breath at a time.

[Guest guest]

Well hi there SuzanneMc,

I recognize your ID and story. I wondered whathappened to you...good

to hear how well you are doing and that you have been reading along!

I think it is very helpful for folks who are not in the " surgery mode "

to hear stories like yours and really helps keep the perspectives and

conversation about all possibilities open. I hope you post more about

your experiences.

Welcome back, er, just welcome! Cam

[Guest guest]

Thanks to all for the additonal infomation and answers.

I will call tomorrow, Tuesday, to get an appointment with Dr. Boachie.

Hope I can get one in October.

I will let you know how I make out.

Thanks again.

Arlene

[Guest guest]

Hi Arlene,

About Dr. Keim's records. I called Dr. Errico's office over a month ago, was told it would take 4-6 weeks to get the information. I was told that they no longer have all the records but that there are notes on each patient. I begged to have a copy of the notes by 8/31 to take to St. Louis with me (more on that in my next post), but I still don't have them. I was also told that Drs Errico and Dryer do not have xrays of Dr. Keim's patients. The xrays, if anywhere, would be at the hospital. I never tried to get a copy of those.

I had my revision surgery with Dr. Boachie at age 56. My age was never an issue.

Dr. Boachie did a thoracoplasty on me along with my revision surgery. By looking at me from the outside, you would never be able to tell how crooked (pardon the word) my spine still is!

[ ] New --- About Me and Questions

HI.....I have been lurking for a few months and have acquired a lot of knowledge and information from this group. Thanks to all.I am 55 and had my herrington rod put in by Dr Keim in 1979, at age 27. At that time, I have a 110 and 55 degree curve. He told me if I did not have the surgery it would kill me, as my spine was going toward my lungs. I got correction to 82 degrees in the thoracic level and 35 degrees in the lumbar spine. I also was 2 inched taller. All was fine for 25 years.In 2004, I was have some breathing problem and went to see Dr Boachie. He said the breathing problem was not caused by the scoliosis. At that time, I really did not have any pain, so he did not think any revision surgery should be done, if there was no pain..The beginning of this year I started have back pain and tingling in my right arm and leg. I also lost the 2 inched I gained at the time of my surgery. I have a hard time at night finding a comfortable position for sleeping because I still have a large hump. I feel like my upper body is twisting. I went to see a local Orthopedic doctor and he told me I was getting old and there is nothing that can be done. When I asked about Flatback he told me everyone with a herrington rod has it. Is this true?He did have me go to PT for a few weeks but now I am doing the exercise at home. My job requires 10 hour days sitting at a computer and phone. I am currently out on Short Term Disability from my job ( 3 months), to see if not sitting for 10 hours will help the pain, it helps but it does not go completely away , but anything is a help. I will then have to see if the doctor and my employee will extend the STD or it I will retire. I just can not sit that long.I do not accept that all pains are from getting old and will be going to see Dr Boachie again.I have a few questions I am hoping someone may be able to answer.1) Is revision surgery only for Flatback?2) Is there additional height gain with revision surgery, like with the first surgery?3) Is there a surgery that can just reduce the hump? Would they do it on a person of my age?4) Is it possible that my upper body can be twisting? I would think the herrington rod would prevent that?5) Has anyone gotten there old records from Dr. Keim? If so, how would I go about getting mine.Thanks in advance for any help/advise you can give me.Arlene

[Guest guest]

Arlene,

I'm now 9 months post revision. Gained 1 1/2" back in height and greatly decreased pain. I was 50 yrs. old at the time (51 now). I can walk without pain at work until after lunch & even then I can tolerate it. My lower lumbar vertebrae were twisted (90degrees) prior to this surgery. Now they're fused.

Can you get a hands-free head set for the phone at work? Sometimes just standing up every 15-30 minutes can help with the pain.

Keep asking questions and don't give up.

Joyce T, RN Atlanta