Re: , did you see this post from Kathy?

[Guest guest]

Ooops! Sorry! I thought I had replied to this, but maybe I forgot. Or maybe I

did reply and it got lost in land somewhere. I never underestimate the

power of to lose posts...

I have been getting physical therapy 2-3x per week nonstop since 2006. My

revision was in 2007. When I mentioned to Koski that I was leaning forward

again, he made sure to look carefully at my x-rays again. Apparently, they can

tell from the x-rays if it is a bone-related thing or if it is muscular. I

think it has to do with the angles of the fusion and how your hips & pelvis tilt

in relation to your spine. He explained it very clearly, and I know that I am

not Anyways, he knows that I've been getting physical therapy all this time,

and so he told me to request my therapist to work on my hip flexors. So he

didn't ever just write me off saying it was muscular and leave it at that. He

DID tell me to be sure to work on the issue in therapy. I have been, but it is

amazing how tight they are. Since I am in a bent position (sitting in a

wheelchair), it means that my hip flexors don't get stretched just by normal

standing and walking as they would in a mobile person. So I think that being in

a wheelchair sort of adds to my hip flexor issues.

Oh, and I am a member of several other groups (wheelchair-related and

SCI-related). You might be surprised to know that many of them are aware of

flatback. In fact, when someone mentions that they have Harrington rods and are

now having trouble (because many issues that cause scoliosis also might leave a

person in a wheelchair - polio, some forms of CP, MD, etc), many of the nurses

or other members will bring up the possibility of flatback. So I'm not the only

wheelchair person dealing with recovering from revision I remember being

really nervous at first, because it seems that most surgeons tell their patients

to walk, walk, walk, and I knew that I wouldn't be able to do that! And many

patients have said that sitting is the most uncomfortable position for them to

be in (versus standing/laying) so I was also worried about that! Not that I'm

glad that other wheelchair users have had to put up with these issues, but it IS

nice to know that it can be successfully done

> > >

> > > Hi Everyone - It's been a while since I gave an update, so here it is.

> > I have good news & news that could be a little better. As all of the

> > post-revision members already know, revision is not perfect & neither is

> > the recovery. My revisions were December 2010 & January 2011. My results

> > are nothing short of miraculous. I am strong, healthy, & currently

> > walking 2.5 miles / 6 days a week. My state sponsored insurance did not

> > cover physical therapy, so I have walked my way to recovery. Tomorrow, I

> > will pass the 200 mile mark!! I have

> > > started noticing a loss of correction though. Looking at my shadow, I

> > noticed that I am tipping forward and also tipping to the right. I

> > contacted UCSF last Friday...and once again, Dr Hu & her staff's

> > proffesionalism is unmatched! Since I now have Medicare, I qualify for

> > physical therapy. In 3 short days, Dr Hu has gotten me set up with a

> > local physical therapy place. I start tomorrow. I think I need help

> > stretching out my hip flexors and some core strenghthening.

> > > I know with a little help, I can stop & probably reverse my loss of

> > correction. I only had flatback for 4 years, but as my pictures show, I

> > was pretty bad. I'm sure that this is common & it wouldn 't suprise me

> > if I will require a little regular maintenance from now on. It's a small

> > price to pay for being able to stand up straight again. Other than

> > that...I started taking online classes this summer to get my accounting

> > degree. I am very proud to say, I got straight " A " s

> > > !!! WooooHoooo!! I look forward to to posting my success in physical

> > > therapy.................Kathy

> > >

> >

>

[Guest guest]

Thanks for clarifying the issue, .

That's great that people in your other groups are so well informed about

flatback syndrome. It amazes me that I am still meeting doctors --

general family physicians and internists -- who have never heard of it.

If only the medical community were as up-to-date as the " wheelchair

community, " not to mention the nursing community.

I especially woke up at your mention of polio. I have wondered so often

whether flatback rates are similar among people with scoliosis-surgery

histories whose scoliosis is neuromuscular in origin -- particularly

when it results from poliomyelitis -- and those whose scoliosis is

idiopathic. I have met only one or two people with polio-associated

scoliosis in all the years I've been participating in scoliosis groups

(including this one). Harrington devised his now-discredited rod

with the specific intent of enabling patients to have their scoliosis

surgically corrected despite spinal muscle weakness resulting from

polio. Before the Harrington rod, surgeons did not want to risk fusing

these patients' spines. When I had my first fusion for idiopathic

scoliosis in 1962, I was told about the Harrington rod, but was also

told regretfully that it was not yet available to people like me who

were not known to have had polio. (Still, there was always some

suspicion that I had had an undiagnosed case of polio some time before I

got the Salk vaccine in first grade -- I had run an exceptionally high

fever around age three which no one had been able to diagnose and was on

the verge of being referred to a pediatric cancer specialist when my

temperature finally went down.) In any event, my initial, uninstrumented

spinal fusion held up very well for many years. Only in my late

thirties, with back pain and thoracolumbar deterioration below the

fusion, did I innocently consent to a new fusion with the H. rod. So . .

.. I have both a general and a personal interest in finding out whether

the original " beneficiaries " of Dr. Harrington's hardware have had as

much trouble from it as the rest of us.

Has your ongoing PT helped at all with the the " sagittal slump " some of

us seem to have developed since our revision surgery?

Incidentally, I may be an exception, but I don't remember ever being

told to walk, walk, walk after revision surgery. In fact, Dr. Rand told

me very emphatically that he wanted me mostly in bed doing nothing for

three months post-op! This expectation caused me all kinds of anxiety

and dismay, since walking was my only exercise at the time and had

helped me to stay sane through all the sagittal deterioration. I think

he may have admitted later on, to my therapist if not to me, that he

hoped if he gave his patients this advice, they would at least cut down

somewhat on their physical activity. I take it we scoliosis people are

notorious for overdoing. I can't remember being told to walk by Dr.

Ondra either. Come to think of it, I must have had some kind of PT at

Northwestern, but I have no memory of receiving any. I wonder if it

could have gone by the boards given my various unanticipated problems --

anesthetic delirium, severe antibiotic allergy, and ultimately

spontaneous fracture causing complete loss of correction and nearly

resulting in paraplegia.

Fascinating post, -- thanks for all the info.

Best,

> > > >

> > > > Hi Everyone - It's been a while since I gave an update, so here

it is.

> > > I have good news & news that could be a little better. As all of

the

> > > post-revision members already know, revision is not perfect &

neither is

> > > the recovery. My revisions were December 2010 & January 2011. My

results

> > > are nothing short of miraculous. I am strong, healthy, & currently

> > > walking 2.5 miles / 6 days a week. My state sponsored insurance

did not

> > > cover physical therapy, so I have walked my way to recovery.

Tomorrow, I

> > > will pass the 200 mile mark!! I have

> > > > started noticing a loss of correction though. Looking at my

shadow, I

> > > noticed that I am tipping forward and also tipping to the right. I

> > > contacted UCSF last Friday...and once again, Dr Hu & her staff's

> > > proffesionalism is unmatched! Since I now have Medicare, I qualify

for

> > > physical therapy. In 3 short days, Dr Hu has gotten me set up with

a

> > > local physical therapy place. I start tomorrow. I think I need

help

> > > stretching out my hip flexors and some core strenghthening.

> > > > I know with a little help, I can stop & probably reverse my loss

of

> > > correction. I only had flatback for 4 years, but as my pictures

show, I

> > > was pretty bad. I'm sure that this is common & it wouldn 't

suprise me

> > > if I will require a little regular maintenance from now on. It's a

small

> > > price to pay for being able to stand up straight again. Other than

> > > that...I started taking online classes this summer to get my

accounting

> > > degree. I am very proud to say, I got straight " A " s

> > > > !!! WooooHoooo!! I look forward to to posting my success in

physical

> > > > therapy.................Kathy

> > > >

> > >

> >

>

[Guest guest]

I read with interest this post about the possible correlation between polio and scoliosis. When I was diagnosed at age 11 with scoliosis, we were told that the scoliosis was caused by the polio I was diagnosed with having ast age 5. I was very fortunate that the only symptom that it left me with was the scoliosis. I too am suffering with many symptoms now of flatback having received Harrington Rods when I was 13. They certainly served me well, up until approx. 10 years ago, now I am becoming more limited. I seem to reach a plateau every 6 mths and I adjust then there is something new to become accustom to. Thanks for this great group. I have been following for a few months and have lost that feeling of being alone.

Deb

From: <elizabethrgonzalez@...> Sent: Thursday, September 8, 2011 3:09:42 AMSubject: Re: , did you see this post from Kathy?

Thanks for clarifying the issue, .That's great that people in your other groups are so well informed aboutflatback syndrome. It amazes me that I am still meeting doctors --general family physicians and internists -- who have never heard of it.If only the medical community were as up-to-date as the "wheelchaircommunity," not to mention the nursing community.I especially woke up at your mention of polio. I have wondered so oftenwhether flatback rates are similar among people with scoliosis-surgeryhistories whose scoliosis is neuromuscular in origin -- particularlywhen it results from poliomyelitis -- and those whose scoliosis isidiopathic. I have met only one or two people with polio-associatedscoliosis in all the years I've been participating in scoliosis groups(including this one). Harrington devised his now-discredited rodwith the specific intent of enabling patients to have

their scoliosissurgically corrected despite spinal muscle weakness resulting frompolio. Before the Harrington rod, surgeons did not want to risk fusingthese patients' spines. When I had my first fusion for idiopathicscoliosis in 1962, I was told about the Harrington rod, but was alsotold regretfully that it was not yet available to people like me whowere not known to have had polio. (Still, there was always somesuspicion that I had had an undiagnosed case of polio some time before Igot the Salk vaccine in first grade -- I had run an exceptionally highfever around age three which no one had been able to diagnose and was onthe verge of being referred to a pediatric cancer specialist when mytemperature finally went down.) In any event, my initial, uninstrumentedspinal fusion held up very well for many years. Only in my latethirties, with back pain and thoracolumbar deterioration below thefusion, did I

innocently consent to a new fusion with the H. rod. So . .. I have both a general and a personal interest in finding out whetherthe original "beneficiaries" of Dr. Harrington's hardware have had asmuch trouble from it as the rest of us.Has your ongoing PT helped at all with the the "sagittal slump" some ofus seem to have developed since our revision surgery?Incidentally, I may be an exception, but I don't remember ever beingtold to walk, walk, walk after revision surgery. In fact, Dr. Rand toldme very emphatically that he wanted me mostly in bed doing nothing forthree months post-op! This expectation caused me all kinds of anxietyand dismay, since walking was my only exercise at the time and hadhelped me to stay sane through all the sagittal deterioration. I thinkhe may have admitted later on, to my therapist if not to me, that hehoped if he gave his patients this advice, they would at least

cut downsomewhat on their physical activity. I take it we scoliosis people arenotorious for overdoing. I can't remember being told to walk by Dr.Ondra either. Come to think of it, I must have had some kind of PT atNorthwestern, but I have no memory of receiving any. I wonder if itcould have gone by the boards given my various unanticipated problems --anesthetic delirium, severe antibiotic allergy, and ultimatelyspontaneous fracture causing complete loss of correction and nearlyresulting in paraplegia.Fascinating post, -- thanks for all the info.Best,> > > >> > > > Hi Everyone - It's been a while since I gave an update, so hereit is.> > > I have good news & news that could be a little better. As all ofthe> > > post-revision members already know, revision is not perfect & neither is> > > the recovery. My revisions were December 2010 & January 2011. Myresults> > > are nothing short of miraculous. I am strong, healthy, & currently> > > walking 2.5 miles / 6 days a week. My state sponsored insurancedid not> > > cover physical therapy, so I have walked my way to recovery.Tomorrow, I> > > will pass the 200 mile mark!! I have> > > > started noticing a loss of

correction though. Looking at myshadow, I> > > noticed that I am tipping forward and also tipping to the right. I> > > contacted UCSF last Friday...and once again, Dr Hu & her staff's> > > proffesionalism is unmatched! Since I now have Medicare, I qualifyfor> > > physical therapy. In 3 short days, Dr Hu has gotten me set up witha> > > local physical therapy place. I start tomorrow. I think I needhelp> > > stretching out my hip flexors and some core strenghthening.> > > > I know with a little help, I can stop & probably reverse my lossof> > > correction. I only had flatback for 4 years, but as my picturesshow, I> > > was pretty bad. I'm sure that this is common & it wouldn 'tsuprise me> > > if I will require a little regular maintenance from now on. It's asmall> > >

price to pay for being able to stand up straight again. Other than> > > that...I started taking online classes this summer to get myaccounting> > > degree. I am very proud to say, I got straight "A"s> > > > !!! WooooHoooo!! I look forward to to posting my success inphysical> > > > therapy.................Kathy> > > >> > >> >>