Re: back pain at 43, 29 years after Harrington Rod & Fusion

November 22, 2008

Hello Diane,

Wow, quite a message! First know I'm so sorry that scoliosis not only has affected you but you daughters too, two braced, thats tough. There are quite a few of us here that too have daughters with it, I'm included in that lot. My daughter is 16 and was diagnosised at age 9, a long C type curve, that bopped around in degrees for years till the point she had to be braced 18 hours a day for a year. Thankfully she completed growing, and the curve was held in check at 28 degrees, so no surgery for her. For me this in her was way harder than what I've been through.

As to you, the best thing is to get to a doc who handles post Harrington Rod patients frequently, and see exactly whats going on with you. There are some stepping off points that will help you through this journey. First scroll down through this message to the bottom of yours and mine, and in blue type you will see the word "FILES", click on that, and it will bring you to reams of information, including a discription of Flatback, a problem that sets in for many of us who have had Harrington Rods, some years following surgery. Not to say this is what is going on with you, we aren't doctors, but many see themselves in the list of symptoms there. Also read members stories, good to get an idea what others have been through. I started having problems after the birth of my first child back in the eighties, and it took me 15 years of bopping around to docs to get some answers. I was a mess by age forty and I found my doc, in pain, unable to walk very far, and bent over. I've since had surgery, and am doing so well it's still such a miracle to me.

So, where are you located? Who did your Harrington Rod surgery and where? Have you consulted any doc's beside your daughters through the years? We can help you to get to a doc versed in Post Harrington Rod patients, we don't recommend docs per say, just let you have some names for opinions, selecting a doc is personal.

There are reams of problems that can crop up in us. I had flatback( loss of lordosis in the lumbar spine), I had bad discs below my harrington Rod fusion mass, I had stenosis, a lateral shift in two verebrae below, and arthritis of the facet joints. My constellation of problems led to leg, low back, and hip pain that was just awful when I was standing or walking, and limited my being on my feet severely. I also was falling forward, was looking at the carpet more than the sky. I felt as though I was eighty, and had more in common with my Grandmothers than people my own age.

For many of us there was zero follow up through the years after the placement of our rods, and so we went through the years, many of us very well, till we hit our late thirties or forties, and crash, troubles and pain set in. So just why you are painful will need to be explored, and what to do about it too. Regular ortho docs may be hip to troubles in Harrington Rod patients, but many are not, and since our spines are so complex due to our previous fusions, you can get a doc who is either overwhelmed or under informed, and you'll either get told to live with it, or there is nothing to be done. Thankfully there are docs across the country that deal with this all the time, not tons, but are worth a consult to see just what is going on with you. While all this is daunting and tough, and it sucks in about forty ways, knowledge is power, and then you are in the drivers seat.

So, I know this first step is tough, far easier than when I was struggling with pain in the 80's and got no answers, thankfully I got to my doc and got help and got back my quality of life. It's also good to be here, among people who get it, I'm six years out from my last surgery and doing well, and stay to be a help to those who are struggling now as others did when I was at the beginning of this journey.

We would love for you to share more, and as I said, we are all patients too and get this, and by sharing you are helping not only yourself but others who read here.

Welcome, and I look forward to getting to know you!

Colorado Springs

[ ] back pain at 43, 29 years after Harrington Rod & Fusion

Hi, I'm new, too. Questions I have may have been answered before, but I'm a bit overwhelmed in the checking. I have 3 daughters with scoliosis, 2 in Providence braces at night. Today I was at the doctor's office with them, so I asked whether there was anyone who dealt with us Harrington Rod patients of yesteryear. When I told him of my pain he gave me a name and said a lot of patients have problems with pain from the Harrington Rod. Unfortunately the name he gave me had some bad associations due to a friend's disasterous surgical encounter. So I am wondering if there are diagnosis or solutions to lower back problems. I have only 3 working vertebrae at the bottom. A few years after my surgery I had a problem with pain after an aerobics class which the doc said was pulled ligaments. Ice and anti-inflammatories to treat. Through the years I didn't have too much trouble with this, but it seems like around 40 years old the episodes of searing pain upon certain movements, and then days of extreme radiating pain down my leg and up my back on the right side, began to occur more frequently. Does this sound like it is arthritis, disc? Anyone have a clue?Thanks,Diane

November 22, 2008

(Sorry that I'm sending this without the original message, for some reason my Juno couldn't handle sending it all.)

Hello ,

Thank you so much for your letter. Until a couple of days ago I never dreamed that there were so many people with back issues like myself due to the Harrington Rod & Fusion Surgery. I was very touched to hear about your daughter and her experience with scoliosis treatment. I am also looking forward to checking into the "FILES" section you mentioned...it may have to be over the holiday weekend; my schedule is booked, and it sounds like there is a lot of information.

About my surgery: I was 14 years old, just going into high school. My scoliosis was discovered on vacation by a friend who had watched a Donahue show and he wanted to show me how crooked the girl's back was. I was in a swim suit, so that was easy enough. He freaked when he saw my back. I didn't believe him since he was always joking around. But my brother, who wasn't a kidder, soberly said it was so. We told my folks. They said they'd heard of it, no big deal (because they knew there was nothing to be done while we were vacationing). At home again I went through a physical to be on a track team. I asked the dr. to check it out. He said they'd get x-rays and send me to Dr. Curtis Edholm in Grand Rapids (we lived in Holland, MI, and I still do). When Dr. Edholm saw the x-rays and my back he immediately sent me for more x-rays since my back looked worse than the 32 degree curves (S) on the x-rays. He immediately scheduled me for surgery. From the late April x-rays to the x-rays they took just prior to surgery on July 2, I had increased 18 degrees. I had a successful surgery and in my final trimester in the brace he put me in the first fiberglass cast he'd ever tried. It was a lot lighter than the plaster, but it was thicker so that none of my specially sewn clothes fit. I digress.

I grew a couple of inches with the surgery, and I never had trouble until the end of my sophomore year of college during an aerobics class. I tried to do this swooping motion that Dr. Edholm told me later I didn't have enough working vertebrae (only 3 left) to accomplish. He said I needed to stick with forward and back or side to side movements, but not the inbetween stuff that require many vertebrae working together. The doctor told me that I had likely inflammed some ligaments, which take longer than muscles to heal. I could barely walk for 2 weeks...part of the problem may have been that I used heat instead of ice to handle the pain. After that I always blamed my pain on inflammed ligaments and used ice and aspirin or ibuprofin to cut down the inflammation. It really didn't happen frequently until after I had my 5th (and final) child at age 37. Episodes of pain have increased in frequency in just this past year (now I'm 43).

By the way, I was told I would be followed up for the rest of my life when I had the surgery, but then sometime around the end of my college years I was told they'd seen no problems with patients, and so I was done having follow-up visits. Isn't that interesting?!

So anyway, I have blamed my back trouble on the possibility that it is from wearing heeled boots, sitting too long, sleeping wrong (I cannot sleep on my back or stomach without waking up feeling miserable; I have to sleep on my side with a pillow rolled up between my legs), or turning wrong when I got out of a car or something. Now it happens so often that I can't usually pinpoint the trigger. When I say trigger it is because I can go for days with no pain, and then have a sharp pain that then branches out from that same spot on the right side of my lower spine. It usually feels like flames shooting down my leg and pain creeping up the back and often spreading across the other side of my back. After a couple of days of icing or "IcyHot" rub and lots of ibuprofin, naproxen and acetaminophen, the pain eases to a nagging hot feeling mostly at the original pain site. Then it goes away unless things start over again.

So that's my story on scoliosis. My oldest daughter (now 13) had hers discovered at around 4 years old by my husband, who figured we should be watching for it...plus, she had a habit of having her hand on her hip and tilting, so it was somewhat noticeable. At age 6 she was finally braced in a Boston Brace 23 hours a day. She spent her hour out of it doing her exercises or showering. At age 10 or 11 she was switched to a nighttime Providence Brace. She is now down to 11 degrees because of the overcorrecting nature of the brace, and Dr. Halanski doesn't see her growing too much any more (although she hasn't begun menses yet, so she could have a couple of more years of growth if my suspicions are right).

We discovered my youngest daughter's scoliosis at age 4 through her dad's vigilance as well. She is now 9, and it has really pretty much corrected itself, although we are keeping an eye on it.

Then my middle daughter, who had a nice straight spine, started curving rather quickly. I had always given her backrubs at night since she is a touchy-feelly kind of kid. I was noticing a hump all of a sudden, it seemed. She got in to see the dr. and was already over the 20 degrees when they start to brace, and with the family history, decided to brace. I pleaded with the dr. to try the Providence Brace first, since she has dermatographism which causes skin trouble with pressure or abrasion. I also knew how uncomfortable my first daughter was having to wear the round the clock brace all seasons. I had also been encouraged by the improvement in our first daughter's curve. Our middle daughter hasn't seemed to have quite the same success, though. 2 visits ago the doc said she might need to switch to the all day kind since she was getting worse. But now this past visit, which we had this week, she was back down to late teen readings. Her curve must be different from her sister's, too, because her brace is much larger and goes down farther. I think my oldest had a main curve and a compensatory one, whereas my middle daughter may have 2 individual curves. She does struggle with some back pain, as well. She grew 1 1/2 inches in 4 months, though, so that could be why.

Again, thank you for showing interest in my situation. I was quite overwhelmed when I realized my pain could be something more than just ligaments getting inflammed. If anyone knows of any doctors somewhat nearby I'd appreciate hearing about them. The name given to me by my girls' doctor was familiar to me because he mishandled my friend's son's scoliosis situation. And I agree, I would like to get in touch with someone who has experience with Harrington Rod follow-up.

Thanks again,

Diane

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November 23, 2008

Hi Diane,We seem to have similar problems. I just joined this group last week. I'm 44 with a Harrington rod (30 years ago). Brand new low back pain started this summer. Just had x-rays this week. I appear to have something called Spondylolisthesis. L-5 below the fusion has slid forward. You can only see from a side view x-ray. Time to go to your Doctor and start narrowing down the possibilities. I'm going to an Orthopedic Doctor on tuesday to discuss what comes next. Therapy is helping with some pain management. Good luck,-DyannP.S. I like your name!From: Diane VanDerWerff <sdvdw@...> Sent: Friday, November 21, 2008 3:22:31 PMSubject: [ ] back pain at 43, 29 years after Harrington Rod & Fusion

Hi, I'm new, too. Questions I have may have been answered before,

but I'm a bit overwhelmed in the checking.

I have 3 daughters with scoliosis, 2 in Providence braces at night.

Today I was at the doctor's office with them, so I asked whether

there was anyone who dealt with us Harrington Rod patients of

yesteryear. When I told him of my pain he gave me a name and said a

lot of patients have problems with pain from the Harrington Rod.

Unfortunately the name he gave me had some bad associations due to a

friend's disasterous surgical encounter.

So I am wondering if there are diagnosis or solutions to lower back

problems. I have only 3 working vertebrae at the bottom. A few

years after my surgery I had a problem with pain after an aerobics

class which the doc said was pulled ligaments. Ice and anti-

inflammatories to treat. Through the years I didn't have too much

trouble with this, but it seems like around 40 years old the episodes

of searing pain upon certain movements, and then days of extreme

radiating pain down my leg and up my back on the right side, began to

occur more frequently.

Does this sound like it is arthritis, disc? Anyone have a clue?

Thanks,

Diane

November 23, 2008

Hi Diane,

We seem to have similar problems. I just joined this group last week. I'm 44 with a Harrington rod (30 years ago). Brand new low back pain started this summer. Just had x-rays this week. I appear to have something called Spondylolisthesis. L-5 below the fusion has slid forward. You can only see from a side view x-ray. Time to go to your Doctor and start narrowing down the possibilities.

I'm going to an Orthopedic Doctor on tuesday to discuss what comes next. Therapy is helping with some pain management.

Good luck,

-Dyann

P.S. I like your name!

From: Diane VanDerWerff <sdvdw@...> Sent: Friday, November 21, 2008 3:22:31 PMSubject: [ ] back pain at 43, 29 years after Harrington Rod & Fusion

Hi, I'm new, too. Questions I have may have been answered before, but I'm a bit overwhelmed in the checking. I have 3 daughters with scoliosis, 2 in Providence braces at night. Today I was at the doctor's office with them, so I asked whether there was anyone who dealt with us Harrington Rod patients of yesteryear. When I told him of my pain he gave me a name and said a lot of patients have problems with pain from the Harrington Rod. Unfortunately the name he gave me had some bad associations due to a friend's disasterous surgical encounter. So I am wondering if there are diagnosis or solutions to lower back problems. I have only 3 working vertebrae at the bottom. A few years after my surgery I had a problem with pain after an aerobics class which the doc said was pulled ligaments. Ice and anti-inflammatories to treat. Through the years I didn't have too much trouble with this, but it seems like around 40 years old the episodes of searing pain upon certain movements, and then days of extreme radiating pain down my leg and up my back on the right side, began to occur more frequently. Does this sound like it is arthritis, disc? Anyone have a clue?Thanks,Diane

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November 24, 2008

Somehow my part of the message got deleted and only your part showed up, so here goes another try:

Hi Dyann,

Thank you for sharing. Previous to finding this website, I never dreamed that the Harrington Rod could be part of my back troubles. I blamed myself for all the problems. If only I hadn't done whatever it was each time to cause it. The problem was that sometimes I couldn't pinpoint a cause. So in a way I am relieved...I'm not alone in this struggle, and it isn't all my fault, but in a way it is discouraging, because now I have to do something about it, and my life is awfully busy at this point (but whose isn't?).

My husband suggested checking out a sports medicine clinic in our hometown instead of my primary care physician (an ob/gyn), but I was hoping for someone with experience with Harrington Rod & Fusion follow-up care. My husband thought it still might be a starting point just to get the x-rays and such started so we know what we're dealing with. He had a herniated disc that that clinic helped him get through. I believe one of their surgeons also did his knee surgery.

Thanks for the encouragement. After Thanksgiving I'll have to get something lined up.

Diane

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November 24, 2008

Dear Diane,

As for your state, most from your area when searching out a excellent experienced docs with post Harrington Rod patients search out two practices with excellent docs, out of state for you, but doable. One set is in Chicago, another in ST. Louis. I'll list their info below.

Dr. Ondra and Dr. Tyler Koski

Dr. Ondra

880 N. Lakeshore Dr. #1000

Chicago IL, 60611

312-695-9797

Associated with Northwestern Memorial Hosp.

sondra@...

Dr. Lawrence Lenke

Dr. Bridwell

One -Jewish Hospital Plaza

Suite 11300 West Pavilion

St Louis Missouri, 63110

314-747-2560

www.bridwell-spinal-deformity.com

Both Dr's Bridwell and Ondra are big names in the field, many here have had surgery with them, and they have proven track records. had Dr. Koski, and she can chime in on him. My surgeon here in Denver, thinks the world of Dr. Lenke, and he was consulted on my case at a SRS meeting.

As for doc's for a consult in your state, go to the Scoliosis Research Society website, there they have a doctor search part for patients. The SRS is a band of doctors that meet for conferences and are deeply concerned and work in behalf of scoliosis patients. When looking at the SRS list of docs, look for in their description, either aging spine, deformity, as you are looking for a doc that handles that and not first time scoliosis patients. Ask that they handle post Harrington Rod patients, and Flatback, if they a vague move on. Finding doc's locally for consults can be tricky, as most have very limited exposure to our problems. Given our complex spines, it's always good to consult with the doc's with the most experience, afterall it is your spine and your ability to walk and get around. Experience is important, can't stress that enough.

Your story has many of the same elements as many here, sadly, as this problem really wreaks havioc with ones life. I'm so sorry that you have so many daughters affected, I have two, only one affected. I found her's rubbing her back on the couch, I cried for three days before I could gather the strength to take her in. Thankfully my surgeon just let me hand it to him, as he got just how hard it was for me. He said" her curve isn't yours, and how she responds will be different, just hand it to me", and I did. She does great, so glad surgery wasn't necessary for her, though her curve has a great deal of rotation like mine, so she has quite a bit of deformity, and will always have to wear a 1/2 inch lift to even out her pelvis . She also has to be careful carrying weight, as she gets painful, Kumar warned us of this in Long C type curves.

As to your symptoms, it's best to get to a doc and see just what is going on. This weekend when you have time do a bit of research from the FILES section, and go about a search on the Scoliosis Research Society page, and see if there is someone local. If not, make a short trip out of it and go see the practices I've listed above. Knowledge is power, and the more you learn the more you are able to be active in your own care.

The first step is always hardest, as none of us want to go through this again, but alas, it a here we go again moment.

Colorado Springs

Re: [ ] back pain at 43, 29 years after Harrington Rod & Fusion