Re: 27 years old, Had surgery in 1998. Flatback since July 2004. Knoxville, TN

[Guest guest]

Dear New member,

 

Hello, and welcome to the group and posting. Given the time frame of your surgery, it's doubtful you have Harrington Rods( some doc's use that term kinda generically) probably have a later system, but if the rods weren't contoured enough it's possible still to have Flatback that was surgically induced.

 

So the next step is to get you to a doc that has experience with post long fusion spines and Flatback. gave this doc's name to another member in your area, works at UCSF and attends some conferences, so she knows of doc's accross the country.

 

This doc is in Kentucky, says he does quite a few revisions:

 

D. Glassman

Leatherman Spine Center

502-584-7525

 

Also another idea is to go the the Scoliosis Research Society website, and use their doc locator there( srs.org). Docs there go to conferences and are more up to date with us scoliosis patients. Look for docs with Aging Spine in their description. When calling ask to speak to their assistant, and ask for the doc's experience with Flatback and revision surgery, if they hum or haw around move on. Know this is very specialized surgery, and you will probably have to travel to get to a qualified doc that does this work often. while the list of doc names that do this work is increasing, it's usually limited to large city hospitals, and the names spoken about here often, is limited to a couple large handful of names.

 

Since you are pregnant at the moment, you have time to do some research, and plan. I'd go to this site, to the FILES section and read, read, read. An informed patient asks better questions, and can participate in her care better, and then you have some knowledge, to help in the planning of your care.

 

I know all this is overwhelming, and sucks, and tough to face yet again, but we have all been right where you are now.

 

We look forward to hearing more from you!

 

Colorado Springs

On Sun, Jan 23, 2011 at 11:48 PM, duenke@... <duenke@...> wrote:

 

Hi everyone. I just found this group. I've had Flatback Syndrome since July 2004 and none of the idiot doctors I've been to have been able to diagnose me with it. They all told me everything was fine with my rods and fusion and sent me on my way with no answers to make sense of what happened to me or any options for relief.

Thank God for Facebook, I was able to find someone with the same symptoms as me who actually has the diagnosis and she filled me in on it. I put it altogether and it wasn't hard for me to realize that I have Flatback--my neck bent forward LITERALLY OVERNIGHT and the host of other problems such as pain, fatigue, and burning fibromyalgia pain where the rods are began simultaneously.

Does anyone know of a good surgeon to consult with in Knoxville, TN????I really hate that the spine surgeon messed up my body for the rest of my life, retired, and now no one wants to consult with me except a bunch of nincompoops who can't even diagnose a common complication of Harrington Rod surgery! :-/

Did I mention I have 3 and 4 year old boys, a baby due in March, and I'm on disability??? Yeah, I hate Scoliosis surgery and the fact that after 6 years when things finally went wrong b/c of it no one can give me the answers I need.

P.S. My fusion is from T2-L4, pre-op curves were 54 and 30 degrees and are now 30 and 15 degrees. But I think I'd rather be more crooked and in no pain like I was before!

[Guest guest]

Hi Duenke,

Welcome to the group. It is very unfortunate that you are having such

difficulties this early in your life. I am really sorry. It must be a terrific

challenge facing all this with little kids and another on the way.

I echo all of s advice. At this point with a newborn on the way you are

going to have to accept that you are in the " fact finding " stage and work toward

understanding you condition better....all of course after you get a diagnosis

from a doctor who you can trust.

As suggested, The Scoliosis Research Society website has a physician

locater on it (www.srs.org) and you can use this as one " filter " to see if a

particular doctor might be worth seeing for an opinion. Admittance into this

Society depends on the doctor dedicating a significant portion of his/her

practice to deformity. For you as a patient that means that you should be able

to find a doctor who has lots of experience in the kinds of problems we face.

Ultimately most of these doctors are surgeons...and will offer a surgical

solution....but some of the doctors can work with you finding interim ways to

manage your condition while awaiting a better time for surgery. Look for a

doctor who specializes in adults if you can.

Consistent with what you said...it looks like Louisville and Lexington are the

only cities in TN with members....Knoxville no. I do not know how often they

update their listings....so perhaps a call to the SRS is in order.

It wouldnt be crazy to eventually consider travelling further afield ....St

Louis probably the closest to you....if you cant find someone closer who will

diagnose you.

Take Care, Cam

[Guest guest]

If your surgery was later than 1984, it is extremely unlikely that you have Harrington Rods (many people use "Harrington Rods" generically for all spinal instrumentation). You most likely have Texas ish Rite Hospital (TSRH) System Instrumentation or Cotrel and Dubousset (C-D) Instrumentation (or a generic version there of).

Most patients with Flatback Syndrome have Harrington Rods, and had their surgery in the 1960's, 1970's or early 1980's. Due to this fact many with Flatback Syndrome and the newer spinal instrumentation are misdiagnosed or it takes many years for the correct diagnoses (most of those have very long fusions that include the lumbar spine and/or sacrum).

I had my surgeries in 1996 at MetroHealth Medical Center in my hometown of Cleveland, Ohio (I was living and working in the Washington, DC area at the time). I have Acromed Instrumentation (a generic version of TSRH System Instrumentation). My fusion is from T9 to S1. About two years after my surgeries I started complaining about chronic pain issues. I was referred to physical therapy, aquatic therapy, acupuncture therapy, and finally narcotic pain medications. Come 2007, I was missing more and more work. A neurologist I was seeing for unrelated issues referred me to a spinal orthopedic surgeon whom I had not seen before for a consult. That doctor diagnosed me with a "5 degree" flatback. When I had an appointment with my original surgeon in January 2008, he said I had the flatback since my surgery. I am now on disability (SSDI and Federal Employee Disability Retirement), off ALL narcotic pain medications (thankfully), and back in Cleveland, Ohio.

As for as finding surgeons, refer to the Scoliosis Research Society web site at www.srs.org. Scoliosis Research Society members are spinal orthopedic surgeons who sub-specialize in the treatment of scoliosis. The most mentioned doctors for adult, aging, flatback syndrome, and revision surgery are Oheneba Boachie-Adjei, MD (New York City, New York); O. LaGrone, MD (Amarillo, TX); Serena S. Hu, MD (San Francisco, CA).

Hope this helps!!

S.

[ ] 27 years old, Had surgery in 1998. Flatback since July 2004. Knoxville, TN

Hi everyone. I just found this group. I've had Flatback Syndrome since July 2004 and none of the idiot doctors I've been to have been able to diagnose me with it. They all told me everything was fine with my rods and fusion and sent me on my way with no answers to make sense of what happened to me or any options for relief.

Thank God for Facebook, I was able to find someone with the same symptoms as me who actually has the diagnosis and she filled me in on it. I put it altogether and it wasn't hard for me to realize that I have Flatback--my neck bent forward LITERALLY OVERNIGHT and the host of other problems such as pain, fatigue, and burning fibromyalgia pain where the rods are began simultaneously.

Does anyone know of a good surgeon to consult with in Knoxville, TN????

I really hate that the spine surgeon messed up my body for the rest of my life, retired, and now no one wants to consult with me except a bunch of nincompoops who can't even diagnose a common complication of Harrington Rod surgery! :-/

Did I mention I have 3 and 4 year old boys, a baby due in March, and I'm on disability??? Yeah, I hate Scoliosis surgery and the fact that after 6 years when things finally went wrong b/c of it no one can give me the answers I need.

P.S. My fusion is from T2-L4, pre-op curves were 54 and 30 degrees and are now 30 and 15 degrees. But I think I'd rather be more crooked and in no pain like I was before!

[Guest guest]

I had my surgery in 1986 and I sort of remember my doctor telling my parents that there was a new system just coming out but being that it was still new and in ways experimental it was best to stay with what was familiar, so I have Harrington Rods.  I have been back to the same doctor that did that surgery and he started using the newer system shortly after, I want to say it was Luque or something like that.  Truthfully, seems like no matter what bars you get there are bound to be problems down the line as we seem to be seeing more and more.  Your original doctor should be able to tell you and still have charts on you to help you.  All the best with baby #3, I'm due with baby #2 in June myself.  Loving being pregnant as for me my pain is GONE for now!

 

Debbie

On Mon, Jan 24, 2011 at 3:36 PM, <RSSSCOLIOSIS@...> wrote:

 

If your surgery was later than 1984, it is extremely unlikely that you have Harrington Rods (many people use " Harrington Rods " generically for all spinal instrumentation). You most likely have Texas ish Rite Hospital (TSRH) System Instrumentation or Cotrel and Dubousset (C-D) Instrumentation (or a generic version there of).

Most patients with Flatback Syndrome have Harrington Rods, and had their surgery in the 1960's, 1970's or early 1980's. Due to this fact many with Flatback Syndrome and the newer spinal instrumentation are misdiagnosed or it takes many years for the correct diagnoses (most of those have very long fusions that include the lumbar spine and/or sacrum).

I had my surgeries in 1996 at MetroHealth Medical Center in my hometown of Cleveland, Ohio (I was living and working in the Washington, DC area at the time). I have Acromed Instrumentation (a generic version of TSRH System Instrumentation). My fusion is from T9 to S1. About two years after my surgeries I started complaining about chronic pain issues. I was referred to physical therapy, aquatic therapy, acupuncture therapy, and finally narcotic pain medications. Come 2007, I was missing more and more work. A neurologist I was seeing for unrelated issues referred me to a spinal orthopedic surgeon whom I had not seen before for a consult. That doctor diagnosed me with a " 5 degree " flatback. When I had an appointment with my original surgeon in January 2008, he said I had the flatback since my surgery. I am now on disability (SSDI and Federal Employee Disability Retirement), off ALL narcotic pain medications (thankfully), and back in Cleveland, Ohio.

As for as finding surgeons, refer to the Scoliosis Research Society web site at www.srs.org.  Scoliosis Research Society members are spinal orthopedic surgeons who sub-specialize in the treatment of scoliosis. The most mentioned doctors for adult, aging, flatback syndrome, and revision surgery are Oheneba Boachie-Adjei, MD (New York City, New York); O. LaGrone, MD (Amarillo, TX); Serena S. Hu, MD (San Francisco, CA).

Hope this helps!!                                      S.

 

[ ] 27 years old, Had surgery in 1998. Flatback since July 2004. Knoxville, TN

 

Hi everyone. I just found this group. I've had Flatback Syndrome since July 2004 and none of the idiot doctors I've been to have been able to diagnose me with it. They all told me everything was fine with my rods and fusion and sent me on my way with no answers to make sense of what happened to me or any options for relief.

Thank God for Facebook, I was able to find someone with the same symptoms as me who actually has the diagnosis and she filled me in on it. I put it altogether and it wasn't hard for me to realize that I have Flatback--my neck bent forward LITERALLY OVERNIGHT and the host of other problems such as pain, fatigue, and burning fibromyalgia pain where the rods are began simultaneously.

Does anyone know of a good surgeon to consult with in Knoxville, TN????I really hate that the spine surgeon messed up my body for the rest of my life, retired, and now no one wants to consult with me except a bunch of nincompoops who can't even diagnose a common complication of Harrington Rod surgery! :-/

Did I mention I have 3 and 4 year old boys, a baby due in March, and I'm on disability??? Yeah, I hate Scoliosis surgery and the fact that after 6 years when things finally went wrong b/c of it no one can give me the answers I need.

P.S. My fusion is from T2-L4, pre-op curves were 54 and 30 degrees and are now 30 and 15 degrees. But I think I'd rather be more crooked and in no pain like I was before!