has anyone had this experience?

[Guest guest]

D.,

No experience with the hook penetration. It sounds awful!

But I did have original surgery in 1979 which brought me from curves around 50 degrees down to 18 degrees (according to my records). Without a rod removal, my curves nearly 30 years later are reading 32 and 35 degrees. 2 doctors I have seen did not believe the original 18 degrees was correct. They were convinced that a solid fusion could not lose degrees/gain curvature. When I pressed Dr. Kasten about it, he got very impatient and said that the rod would not still be in right if it had lost ground. I'm not satisfied with that answer. My original surgery was done by top surgeon, Curtis Edholm. Before surgery they did flexiblity tests which showed they could get me to 20 degrees. They were delighted to get me further. I gained about 2 inches in height. Since then I have lost 1/2 inch in height despite having very good posture and good saggital balance.

Now I am no doctor, or scientist, for that matter, but I don't think doctors should immediately reject the data simply because it doesn't fit into their template. When I told Kasten that someone in this group had said their dr. said you could lose a degree a year, he sarcastically said that was if they weren't fused and rodded. I said I thought they were. He then made the comment about impossibility since the rod would not still be in place. I told him about my loss in height. He finally just said that the fused area wasn't my problem anyway, so it didn't matter, my problem was with the spine below my fusion. The fused area looked good. I looked good. I felt good, so what did it matter...

So are you having a lot of pain following your auto accident? Evidently my degeneration is not to a point for surgery. I'm trying to manage pain with meds, avoidance of too long sitting and standing, and with strengthening and stretching exercises for my pelvic girdle as well as balancing exercises. So I can't give any advice regarding surgery. Usually people opt for surgery when the pain gets too intense to manage without it.

God bless,

Diane VDW

Michigan

I had H rods installed 1970, seven years later lots of pain, foot drop right leg. they went back in to find one of the hooks had penatrated the outside of spine forming a fluid filled pocket causing pressure and nerve damage.they removed the entire long rod and left in the shorter piece. No one told me about any follow up and my problems continued to be pain, residual numbness of right foot. After a recent auto accident xrays have revealed the curve has returned to about 40 degress (original curve 55 degrees, after initial surgery 28 degress). Anyone have a smiliar experience? I am now contemplating surgery though I would love to brace instead. Thanks for any input. D

____________________________________________________________

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[Guest guest]

Hello Diane,

Welcome to the group. I myself haven't had anything like what you

describe and I am very sorry to learn that you have had such a

difficult time of things.

I have read, and others here, have described situations where their

curves have progressed. There seem to be two situations that are

often described. People on this group have had progression of no

more than 2deg/per year..which is quite a lot and very unusual. As I

understand it the doctors can not really predict who will continue

to progress even after surgey...but I think it may be related to the

skeleton not being mature/done growing at the time of surgery.

Other situations I have read about have to do with a patient losing

correction after instrumentation is removed, regardless of the

reason for the rod removal, so some doctors advise against the

remving a rod unless there are very specific reasons to do

so...perhaps as in your case. It is also possible for an area not to

have ever fused or for the fusion mass to crack and for the patient

to lose correction.

I guess if I was you I would want to seek out the expertise of a

surgeon who deals with post Harrington rod patients and does so very

often. You did not get the benefit of a very good outcome years ago,

and today if you decide to pursue surgery I bet you will find

getting several opinions to be very worthwhile.

Other than that, I have certainly had the experience of undergoing

revision surgery which is a large operation to undergo a second time

in ones life. I can completely understand the wish to not have to do

it. It stinks.

Who have you seen so far and what exactly is the recomendation?

Take Care, Cam

[Guest guest]

Hi D.,

I've been wearing an AFO ankle-foot orthotic on my left foot for over

10 years because my ankle has become so unstable over the years that

I would find myself tripping whenever my foot would catch on carpets,

etc. My right ankle is fused solid.

How old were you when you had your Harrington surgery in 1970? My

fusion was performed in May 1969 from L2 to S1 and the T4 - L2

instrumentation was performed in 1971 following traction.

As for a doctor not believing the curve could continue to progress

after fusion and rods, certainly they must consider the age of the

patient when the surgery was performed. I was 10 when I had mine done

so, obviously, I wasn't fully grown. What do they think happens to

the spine of a person who's had it done at 9 or 10 years old? The

spine would continue to grow so of course it going to twist and curve

upon itself, because it has no other option. I believe they refer to

it as crankshaft phenomenon.

I'm waiting on two referrals, one to Dr in Toronto and another

to a neurosurgeon here in Hamilton. My primary care doc is concerned

that because of my history of spina bifida, a neuro consult would be

the first route to go. I tend to agree, if I am experiencing

retethering of the spinal cord - perhaps surgery to detether it again

may relieve a lot of my current symptoms.

Sheila

>

> D.,

>

> No experience with the hook penetration. It sounds awful!

>

> But I did have original surgery in 1979 which brought me from curves

> around 50 degrees down to 18 degrees (according to my records).

Without

> a rod removal, my curves nearly 30 years later are reading 32 and 35

> degrees. 2 doctors I have seen did not believe the original 18

degrees

> was correct. They were convinced that a solid fusion could not lose

> degrees/gain curvature. When I pressed Dr. Kasten about it, he got

very

> impatient and said that the rod would not still be in right if it

had

> lost ground. I'm not satisfied with that answer. My original

surgery

> was done by top surgeon, Curtis Edholm. Before surgery they did

> flexiblity tests which showed they could get me to 20 degrees.

They were

> delighted to get me further. I gained about 2 inches in height.

Since

> then I have lost 1/2 inch in height despite having very good

posture and

> good saggital balance.

>

> Now I am no doctor, or scientist, for that matter, but I don't think

> doctors should immediately reject the data simply because it

doesn't fit

> into their template. When I told Kasten that someone in this group

had

> said their dr. said you could lose a degree a year, he

sarcastically said

> that was if they weren't fused and rodded. I said I thought they

were.

> He then made the comment about impossibility since the rod would not

> still be in place. I told him about my loss in height. He finally

just

> said that the fused area wasn't my problem anyway, so it didn't

matter,

> my problem was with the spine below my fusion. The fused area

looked

> good. I looked good. I felt good, so what did it matter...

>

> So are you having a lot of pain following your auto accident?

Evidently

> my degeneration is not to a point for surgery. I'm trying to

manage pain

> with meds, avoidance of too long sitting and standing, and with

> strengthening and stretching exercises for my pelvic girdle as

well as

> balancing exercises. So I can't give any advice regarding surgery.

> Usually people opt for surgery when the pain gets too intense to

manage

> without it.

>

> God bless,

> Diane VDW

> Michigan

>

>

> I had H rods installed 1970, seven years later lots of pain, foot

drop

> right leg. they went back in to find one of the hooks had

penatrated

> the outside of spine forming a fluid filled pocket causing pressure

and

> nerve damage.they removed the entire long rod and left in the

shorter

> piece. No one told me about any follow up and my problems continued

to

> be pain, residual numbness of right foot. After a recent auto

accident

> xrays have revealed the curve has returned to about 40 degress

> (original curve 55 degrees, after initial surgery 28 degress).

Anyone

> have a smiliar experience? I am now contemplating surgery though I

> would love to brace instead. Thanks for any input. D

> ____________________________________________________________

> Click here to find the perfect banking opportunity!

>

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>

[Guest guest]

Hi Cam & Sheila,

Cam, your statement to Diane makes a lot of sense to me:

"I have read, and others here, have described situations where their curves have progressed. There seem to be two situations that are often described. People on this group have had progression of no more than 2deg/per year..which is quite a lot and very unusual. As I understand it the doctors can not really predict who will continue to progress even after surgey...but I think it may be related to the skeleton not being mature/done growing at the time of surgery..."

So did yours, Sheila:

"... certainly they must consider the age of the patient when the surgery was performed. I was 10 when I had mine done so, obviously, I wasn't fully grown. What do they think happens to the spine of a person who's had it done at 9 or 10 years old? The spine would continue to grow so of course it going to twist and curve upon itself, because it has no other option. I believe they refer to it as crankshaft phenomenon."

I was 14 when I had my surgery, but I doubt I was fully grown, as I have heard from my kids' scoli dr. that they figure growing is done 2 years after a girl starts her first period...and mine didn't start until 4 months after my surgery. So I'm guessing I had some growth after the surgery. Since my records are so darkened with age, I can't be sure when they are dated when they say there was no significant change from the surgery's original 18 degree curve. So perhaps the progressed curves (Kasten read both at 35 degrees), already occurred within a year or two of my surgery.

I just really like to make sense of my world, and it didn't make sense to me before...so thank you for helping clear that up for me.

Diane VDW

Michigan

____________________________________________________________

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[Guest guest]

My daugter has recently been diagnosed with torticollis and when I first

took her in she had left tort, within a few days of doing the stretching

it was center and then went right tort...the doc and PT looked at me like

I was crazy and gave me exercizes for the other side and now she's back to

left tort...and more extreme than she was originally. I am now taking

daily pictures and will be meeting with a PT that does CST.

Any input would be great!

[Guest guest]

I'm not sure about the tort switching sides, but I know that when we were in PT,

it was important to stretch both sides equally. Don't just focus on the " bad "

side. Do the exercises evenly on both sides, 4-6 times a day, and in the long

run, it should even out so that she is looking straight and her head is midline

(rather than tilted to one side or another). Try not to focus on the day to day,

it can take many months for the tort to be completely resolved.

Good luck!

Jake-3 (DOCBand Grad 9/08)

>

> My daugter has recently been diagnosed with torticollis and when I first

> took her in she had left tort, within a few days of doing the stretching

> it was center and then went right tort...the doc and PT looked at me like

> I was crazy and gave me exercizes for the other side and now she's back to

> left tort...and more extreme than she was originally. I am now taking

> daily pictures and will be meeting with a PT that does CST.

>

> Any input would be great!

>

>