Lipomyelomeningocele

[Guest guest]

Friends, remember the "oh my God" feeling you first had when you found out your wonderful Harrington rod "fix" had given you flatback, which can only be fixed by even more grueling surgery? Especially if like me you discovered the condition yourself on the internet?

Well, I've just been whacked again.

Thanks to my first visit with Dr. Rand and his concerns about a possible tethered spinal cord, I've been doing a somewhat more dilligent bit of research on neural tube defects such as spina bifida. As much of a shock as it was when I first learned (at age 42!) that I was always believed to have spina bifida occulta, and as angry as I was to learn that my parents and I had never actually been told that fact, in spite of 15 years of follow-up, bracing, PT, and surgery at Boston Children's and Shriners', I'm actually madder now. Of all the doctors I've seen since I began having back and leg problems as an adult, including orthopedic surgeons who told me my fusion looked good and solid, and one VERY HIGHLY PLACED SPINE SPECIALIST AT A MAJOR BOSTON HOSPITAL, no one but Rand ever expressed concerns that I may have neurological problems from the spina bifida.

Sure, the guys at Children's and Shriners' blithely bounced around words like "lipoma" and "myelomeningocele", and gave baby-talk explanations of their concerns regarding the placement of my spinal nerves, but how were we to know the exact implications of the big words, or the fact that neurologic symptoms could continue to crop up FOR LIFE? I know they had only x-rays to go on, and would not dare attempt tricky neurosurgery on me as long as everything was working ok, but if I had been armed with this knowledge at age 30 when I began to have pain with walking, I might have had some idea where to turn.

http://www.emedicine.com/ped/topic2805.htm#target6

In my reading I came across a photo. It's picture 8 near the end of this article. The baby on the right looks a lot like me, minus 47 years. Lipomyelomeningocele. Yup, that's probably the real name for what I have, BESIDES the congenital scoliosis. The part the surgeons didn't want to touch even in 1971.

I followed a link from this article to a support site dedicated specifically to lipomyelomeningocele.

http://www.lfsn.org/

This site is full of stories of people who have had varying degrees of disability and varying degrees of stupid or wonderful handling by medical people. The horrifying part is that misdiagnoses and lack of concern by doctors have led to PERMANENT loss of lower body function, PERMANENT numbness, PERMANENT paralysis, PERMANENT incontinence! Surgery to correct spinal cord tethering, a very common aspect of occult spina bifida, is now relatively low-risk and can forestall future neurologic damage. But it does not necessarily reverse damage done before the de-tethering, and re-tethering can occur. In other words, it can be a lifetime of vigilance and surgical intervention.

While interviewing me for my medical history, I was keenly aware of Dr. Rand's eyes on my feet. When I mentioned that my treatment at Children's had included braces as well as follow-up, he asked "leg braces?", and I shook my head, "just back braces". My feet both turn toward the right, especially the left one. I was aware of this at least as far back as my teens. I had thought this was just part of the scoliosis, but it had always puzzled me as to how thorasic rotation could cause my feet to be turned in realation to my pelvis. Now I don't think it can. But spina bifida can, and worse. I had been wondering recently if my left foot might be getting worse. It's always rocked outward a bit, but sometimes it almost looks clubbed.

So these next few weeks promise to be very telling. I could be wrong. My walking problems could be coming from lumbar stenosis. Even if they are from a tethered spinal cord maybe de-tethering will help.

I hope so. I want to meet Cam in Boston some time and walk for miles and miles.

Sharon

[Guest guest]

Oh Sharon.....what a shocking discovery...and does all this not fit

into the possible MS-like symptoms as well?

Also..if they could not " un-tether " you at the earlier scoli

surgery...are you saying that neither you and your parents were not

warned to be on the look out for more neuro type complications? That

is amazing. No follow-up either...aaarrrrgggghhhhhhhhhh.

Well lets hope that whatever is going on with you can get figured

out and arrested before you pay any higher of a price. I think you

have already given the ferry man his due.

Funny, Dr Rand kept looking at my hands and asking if anyone had

ever said anything about Marfans syndrome to me. He checked me out

and seemed to decide not...but I ran home and scared the poopy out

of myself anyway reading on the internet...until I talked it over

with my opthamologist who also said he could see nothing in my

retinas (I think) to suggest that.

As a side note on the neural tube defect...I had to terminate an

anencephalic pregnancy when I was around 30 years old (for those

that don't know, this is another form of neural tube defect which

occurs on the other end of the spine...the tube remains open and the

brain does not form...it is not a survivable condition.) So I don't

care what the " experts " think....I beleive they are going to find

that what looks like idiopathic scoliosis(me) and congenital are one

and the same..just expressed at a different time in development.

So after you get all your tests done the plan is to meet Dr Rand and

go over all the results,no? I hope you get your answers soon. I will

be waiting and hoping for good news.

Sharon,I am so sorry you had to take another body blow, Cam

[Guest guest]

Sharon,It is far from a joy to hear that you are dealing with more of those "oh my God" moments, but simultaneously, you are reminding me of the benefits of our technological advances - giving us the freedom to research and learn so much about ourselves and the world in which we live!When I read that Dr. Bridwell noted my dura was very wide in my lower spinal cord and that it almost looks as if I have dural ectasia, I researched this and discovered that it is a common trait in people with Marfan's. That was all I could find about it - period - at the time. I had never even heard of Marfan's but will now keep a very close watch on my nephew who has many of the characteristics. I just looked at the Marfan's site again and there is now a lot more information about dural ectasia.http://www.marfan.org/nmf/GetSubContentRequestHandler.do?sub_menu_item_content_id=18 & menu_item_id=4Interesting to read it can thin your vertebrae and causes low back pain - the reason we had to remove the screw was because there wasn't enough bone at L4.Point being, if it weren't for the internet, about half of us wouldn't know we had flatback or that there was anything that can be done about it! In addition, we wouldn't know lots of trivial things that we know. The internet allows those that dare to benefit from distributed intelligence and multiple perspectives so that informed decisions can be made about everything from which detergent to buy to whether or not a life-changing surgery should be undergone and who should be a the dull end of the scalpel when it is!I do hope that your new-found knowledge has positive implications and that knowing gives you a sense of peace. While learning that I had indeed properly diagnosed myself with flatback two years after it was recorded in my medical records was extremely frustrating, it also provided me with a sense of peace knowing there was an explanation for many of the quirks that make me me...even if many of them are things that cannot be changed.Keep us posted on what you discover and what Dr. Rand has to say about the mess. You have also given us all another reason to seek out one of the best for this condition. No way would your local OS even consider any of the details you have noted. What a blessing to have such experienced minds taking care of us!kam

[Guest guest]

Thanks, Cam.

No, actually, the " probable " MS diagnosis was based on a sudden visual

change in one eye, and suggestive but inconclusive lesions on a brain MRI.

Now if someone goes and tells me spina bifida can cause visual problems I

promise I'll scream! BTW, I just had a follow-up brain MRI today, and will

see the neurologist a week from Thursday. My eye seems better than it was.

The visual problem is hardly noticeable now, and I no longer get the flashes

(movement phosphenes) I used to " see " when I turned my eye suddenly in the

dark. The fact that it's improved makes me pretty confident that what I

have is a very early stage of MS, and so far the Copaxone injections have

prevented further attacks.

That really interests me, that Dr. Rand was looking for Marfan's in you. My

cousin Lorna has had a terrible time with Marfan's, and she's only about 5'

8 " . Her younger brother is 6' 9 " , but so far he seems ok. I believe the

Marfan's is on her mother's side and we are related by our fathers, but her

mom's a nurse and always encourages the family to read up on medical stuff,

so I have some knowledge of the condition. I can certainly understand his

concern that you could have it because of your height. It's amazing how

many girls these days are growing 6' and more, though. I'll be sure to tell

Lorna, because she's trying to get her act together enough to go see Dr.

Rand. She has cervical and lumbar fusions, is on all kinds of pain

medication, and has terrible pain in the region of her upper thorasic spine

and neurological issues in her hands. I told her I was very impressed with

Dr. Rand at our first meeting, and I really hope he can help her.

I'm sorry about the baby you lost. I hope those photos of anencephaly

weren't too upsetting to you. When I was a child my parents often saw

children at the hospital who were much worse off than I, and counted

themselves fortunate.

Well, as far as my original surgery goes, this was 1971 and they were still

pretty much operating in the dark as far as the exact nature of my spina

bifida, so they didn't attempt a de-tethering. I don't think they even had

a way of determining if my cord was tethered. The possibility isn't even

mentioned in my records, though I only have the ones from Shriners', where

they did the surgery. I should probably see if my Children's records are

still available. I'm not sure how common de-tethering was then, but by the

time I got to Shriners' I was at the point that the scoliotic progression

was the urgent issue, and since my neurologic functions tested ok they

focused only on the scoliosis and bypassed the lipoma-like mass. They

followed me up for a couple more years, then when the fusion was shown to be

holding up well, they took me out of the plastic jacket (insert pic of

15-yr-old girl doing happy dance), and told the dictophone they considered

my case closed, and understood that I would be followed up by my dad's

surgeon in Maine. I was followed up. Once. No PT, no warnings, though the

doc did affirm that my ambition to be a music teacher was much safer than

being a ski instructor. My dad believed the stuff about the fused spine

being set for life. And what did he know? Certainly no more than the

surgeons.

So now I guess I'm waiting for a call from Rand's office. I think he wanted

to see the MRI results before scheduling the other tests. But I don't

imagine I'll see him again until all tests are in.

Meanwhile I'm just worrying myself over every little tingle, twinge, and

twitch. Maybe I'm worried for no good reason, and all the pain and

dysfunction are coming from lumbar degeneration. Maybe the spinal cord is

tethered, and de-tethering will make me feel loads better. I do have a gut

feeling it is tethered, as my legs have always been tight, and may be

getting tighter.

Thanks again for the support.

Sharon

[ ] Re: Lipomyelomeningocele

> Oh Sharon.....what a shocking discovery...and does all this not fit

> into the possible MS-like symptoms as well?

>

> Also..if they could not " un-tether " you at the earlier scoli

> surgery...are you saying that neither you and your parents were not

> warned to be on the look out for more neuro type complications? That

> is amazing. No follow-up either...aaarrrrgggghhhhhhhhhh.

>

> Well lets hope that whatever is going on with you can get figured

> out and arrested before you pay any higher of a price. I think you

> have already given the ferry man his due.

>

> Funny, Dr Rand kept looking at my hands and asking if anyone had

> ever said anything about Marfans syndrome to me. He checked me out

> and seemed to decide not...but I ran home and scared the poopy out

> of myself anyway reading on the internet...until I talked it over

> with my opthamologist who also said he could see nothing in my

> retinas (I think) to suggest that.

>

> As a side note on the neural tube defect...I had to terminate an

> anencephalic pregnancy when I was around 30 years old (for those

> that don't know, this is another form of neural tube defect which

> occurs on the other end of the spine...the tube remains open and the

> brain does not form...it is not a survivable condition.) So I don't

> care what the " experts " think....I beleive they are going to find

> that what looks like idiopathic scoliosis(me) and congenital are one

> and the same..just expressed at a different time in development.

>

> So after you get all your tests done the plan is to meet Dr Rand and

> go over all the results,no? I hope you get your answers soon. I will

> be waiting and hoping for good news.

>

> Sharon,I am so sorry you had to take another body blow, Cam

>

>

>

>

>

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

Right you are, Kam. The internet is such a blessing. And who would have predicted that the most experienced scoli revision surgeon in New England just happens to have done a residency at Boston Children's, which must treat many spina bifida patients each year.

Sharon

[ ] Re: Lipomyelomeningocele

Sharon,

It is far from a joy to hear that you are dealing with more of those "oh my God" moments, but simultaneously, you are reminding me of the benefits of our technological advances - giving us the freedom to research and learn so much about ourselves and the world in which we live!

When I read that Dr. Bridwell noted my dura was very wide in my lower spinal cord and that it almost looks as if I have dural ectasia, I researched this and discovered that it is a common trait in people with Marfan's. That was all I could find about it - period - at the time. I had never even heard of Marfan's but will now keep a very close watch on my nephew who has many of the characteristics. I just looked at the Marfan's site again and there is now a lot more information about dural ectasia.

http://www.marfan.org/nmf/GetSubContentRequestHandler.do?sub_menu_item_content_id=18 & menu_item_id=4

Interesting to read it can thin your vertebrae and causes low back pain - the reason we had to remove the screw was because there wasn't enough bone at L4.

Point being, if it weren't for the internet, about half of us wouldn't know we had flatback or that there was anything that can be done about it! In addition, we wouldn't know lots of trivial things that we know.

The internet allows those that dare to benefit from distributed intelligence and multiple perspectives so that informed decisions can be made about everything from which detergent to buy to whether or not a life-changing surgery should be undergone and who should be a the dull end of the scalpel when it is!

I do hope that your new-found knowledge has positive implications and that knowing gives you a sense of peace. While learning that I had indeed properly diagnosed myself with flatback two years after it was recorded in my medical records was extremely frustrating, it also provided me with a sense of peace knowing there was an explanation for many of the quirks that make me me...even if many of them are things that cannot be changed.

Keep us posted on what you discover and what Dr. Rand has to say about the mess. You have also given us all another reason to seek out one of the best for this condition. No way would your local OS even consider any of the details you have noted. What a blessing to have such experienced minds taking care of us!

kam

[Guest guest]

--Sharon,

That is alot of information, Do you feel Rand can help you? ,PA

- In , " Sharon Green "

<sharon.green18@v...> wrote:

>

> Friends, remember the " oh my God " feeling you first had when you

found out your wonderful Harrington rod " fix " had given you flatback,

which can only be fixed by even more grueling surgery? Especially if

like me you discovered the condition yourself on the internet?

>

> Well, I've just been whacked again.

>

> Thanks to my first visit with Dr. Rand and his concerns about a

possible tethered spinal cord, I've been doing a somewhat more

dilligent bit of research on neural tube defects such as spina

bifida. As much of a shock as it was when I first learned (at age

42!) that I was always believed to have spina bifida occulta, and as

angry as I was to learn that my parents and I had never actually been

told that fact, in spite of 15 years of follow-up, bracing, PT, and

surgery at Boston Children's and Shriners', I'm actually madder now.

Of all the doctors I've seen since I began having back and leg

problems as an adult, including orthopedic surgeons who told me my

fusion looked good and solid, and one VERY HIGHLY PLACED SPINE

SPECIALIST AT A MAJOR BOSTON HOSPITAL, no one but Rand ever expressed

concerns that I may have neurological problems from the spina bifida.

>

> Sure, the guys at Children's and Shriners' blithely bounced around

words like " lipoma " and " myelomeningocele " , and gave baby-talk

explanations of their concerns regarding the placement of my spinal

nerves, but how were we to know the exact implications of the big

words, or the fact that neurologic symptoms could continue to crop up

FOR LIFE? I know they had only x-rays to go on, and would not dare

attempt tricky neurosurgery on me as long as everything was working

ok, but if I had been armed with this knowledge at age 30 when I

began to have pain with walking, I might have had some idea where to

turn.

>

> http://www.emedicine.com/ped/topic2805.htm#target6

>

> In my reading I came across a photo. It's picture 8 near the end

of this article. The baby on the right looks a lot like me, minus 47

years. Lipomyelomeningocele. Yup, that's probably the real name for

what I have, BESIDES the congenital scoliosis. The part the surgeons

didn't want to touch even in 1971.

>

> I followed a link from this article to a support site dedicated

specifically to lipomyelomeningocele.

>

> http://www.lfsn.org/

>

> This site is full of stories of people who have had varying degrees

of disability and varying degrees of stupid or wonderful handling by

medical people. The horrifying part is that misdiagnoses and lack of

concern by doctors have led to PERMANENT loss of lower body function,

PERMANENT numbness, PERMANENT paralysis, PERMANENT incontinence!

Surgery to correct spinal cord tethering, a very common aspect of

occult spina bifida, is now relatively low-risk and can forestall

future neurologic damage. But it does not necessarily reverse damage

done before the de-tethering, and re-tethering can occur. In other

words, it can be a lifetime of vigilance and surgical intervention.

>

> While interviewing me for my medical history, I was keenly aware of

Dr. Rand's eyes on my feet. When I mentioned that my treatment at

Children's had included braces as well as follow-up, he asked " leg

braces? " , and I shook my head, " just back braces " . My feet both

turn toward the right, especially the left one. I was aware of this

at least as far back as my teens. I had thought this was just part

of the scoliosis, but it had always puzzled me as to how thorasic

rotation could cause my feet to be turned in realation to my pelvis.

Now I don't think it can. But spina bifida can, and worse. I had

been wondering recently if my left foot might be getting worse. It's

always rocked outward a bit, but sometimes it almost looks clubbed.

>

> So these next few weeks promise to be very telling. I could be

wrong. My walking problems could be coming from lumbar stenosis.

Even if they are from a tethered spinal cord maybe de-tethering will

help.

>

> I hope so. I want to meet Cam in Boston some time and walk for

miles and miles.

>

> Sharon

>

[Guest guest]

Thanks, . I'll look that up.

The flashes were only part of a set of symptoms that my neurologist agrees

are very likely a mild case of MS-related optic neuritis. He recently sent

me to a neuro-ophthalmologist who concurred.

That's the thing about MS. It has no single sign or symptom that is

exclusive of other conditions. But as long as there is a suspicion nobody

wants to take me off the injections, including me.

Sharon

[ ] Re: Lipomyelomeningocele

> Hi Sharon...

>

> I've had the same thing for several years (seeing a bright flash when

> I turn my head or move my eyes in a dark room). It was dx'd as

> vitreous degeneration, which is actually fairly common:

>

> http://www.coopereyecare.com/vitreous_degeration.htm

>

> --

>

>

>

>> The visual problem is hardly noticeable now, and I no longer get the

> flashes

>> (movement phosphenes) I used to " see " when I turned my eye suddenly

> in the

>> dark.

>

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

OK, I did check that article, .

I had a thorough eye examination when the assumed MS attack occurred. Since

she could find nothing else she suggested the MRI that led to the probably

MS diagnosis.

Sharon

[ ] Re: Lipomyelomeningocele

> Hi Sharon...

>

> I've had the same thing for several years (seeing a bright flash when

> I turn my head or move my eyes in a dark room). It was dx'd as

> vitreous degeneration, which is actually fairly common:

>

> http://www.coopereyecare.com/vitreous_degeration.htm

>

> --

>

>

>

>> The visual problem is hardly noticeable now, and I no longer get the

> flashes

>> (movement phosphenes) I used to " see " when I turned my eye suddenly

> in the

>> dark.

>

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

, my impression of Rand is that if he can't help me alone he will enlist

the help of someone who can. Remember I still have a case of flatback to

address!

Dr. Rand's bio mentions that after he finished his first residency he was

chief resident at Boston Children's (my alma mater). Given that Boston is

Spina Bifida City (my own sardonic moniker for " Bean Town " ), I would guess

he's seen a lot of myelomeningoceles, lipomas, etc.

Sharon

[ ] Re: Lipomyelomeningocele

> --Sharon,

> That is alot of information, Do you feel Rand can help you? ,PA

>

>

>

> - In , " Sharon Green "

> <sharon.green18@v...> wrote:

>>

>> Friends, remember the " oh my God " feeling you first had when you

> found out your wonderful Harrington rod " fix " had given you flatback,

> which can only be fixed by even more grueling surgery? Especially if

> like me you discovered the condition yourself on the internet?

>>

>> Well, I've just been whacked again.

>>

>> Thanks to my first visit with Dr. Rand and his concerns about a

> possible tethered spinal cord, I've been doing a somewhat more

> dilligent bit of research on neural tube defects such as spina

> bifida. As much of a shock as it was when I first learned (at age

> 42!) that I was always believed to have spina bifida occulta, and as

> angry as I was to learn that my parents and I had never actually been

> told that fact, in spite of 15 years of follow-up, bracing, PT, and

> surgery at Boston Children's and Shriners', I'm actually madder now.

> Of all the doctors I've seen since I began having back and leg

> problems as an adult, including orthopedic surgeons who told me my

> fusion looked good and solid, and one VERY HIGHLY PLACED SPINE

> SPECIALIST AT A MAJOR BOSTON HOSPITAL, no one but Rand ever expressed

> concerns that I may have neurological problems from the spina bifida.

>>

>> Sure, the guys at Children's and Shriners' blithely bounced around

> words like " lipoma " and " myelomeningocele " , and gave baby-talk

> explanations of their concerns regarding the placement of my spinal

> nerves, but how were we to know the exact implications of the big

> words, or the fact that neurologic symptoms could continue to crop up

> FOR LIFE? I know they had only x-rays to go on, and would not dare

> attempt tricky neurosurgery on me as long as everything was working

> ok, but if I had been armed with this knowledge at age 30 when I

> began to have pain with walking, I might have had some idea where to

> turn.

>>

>> http://www.emedicine.com/ped/topic2805.htm#target6

>>

>> In my reading I came across a photo. It's picture 8 near the end

> of this article. The baby on the right looks a lot like me, minus 47

> years. Lipomyelomeningocele. Yup, that's probably the real name for

> what I have, BESIDES the congenital scoliosis. The part the surgeons

> didn't want to touch even in 1971.

>>

>> I followed a link from this article to a support site dedicated

> specifically to lipomyelomeningocele.

>>

>> http://www.lfsn.org/

>>

>> This site is full of stories of people who have had varying degrees

> of disability and varying degrees of stupid or wonderful handling by

> medical people. The horrifying part is that misdiagnoses and lack of

> concern by doctors have led to PERMANENT loss of lower body function,

> PERMANENT numbness, PERMANENT paralysis, PERMANENT incontinence!

> Surgery to correct spinal cord tethering, a very common aspect of

> occult spina bifida, is now relatively low-risk and can forestall

> future neurologic damage. But it does not necessarily reverse damage

> done before the de-tethering, and re-tethering can occur. In other

> words, it can be a lifetime of vigilance and surgical intervention.

>>

>> While interviewing me for my medical history, I was keenly aware of

> Dr. Rand's eyes on my feet. When I mentioned that my treatment at

> Children's had included braces as well as follow-up, he asked " leg

> braces? " , and I shook my head, " just back braces " . My feet both

> turn toward the right, especially the left one. I was aware of this

> at least as far back as my teens. I had thought this was just part

> of the scoliosis, but it had always puzzled me as to how thorasic

> rotation could cause my feet to be turned in realation to my pelvis.

> Now I don't think it can. But spina bifida can, and worse. I had

> been wondering recently if my left foot might be getting worse. It's

> always rocked outward a bit, but sometimes it almost looks clubbed.

>>

>> So these next few weeks promise to be very telling. I could be

> wrong. My walking problems could be coming from lumbar stenosis.

> Even if they are from a tethered spinal cord maybe de-tethering will

> help.

>>

>> I hope so. I want to meet Cam in Boston some time and walk for

> miles and miles.

>>

>> Sharon

>>

>

>

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

Sharon,well now I know how you are doing after I just read your story..Wow.. I had my 1st scoli operation at the childrens in boston and had a Dr.Keller in the late 60's early 70's.Do you remember who you had? VonnieSharon Green <sharon.green18@...> wrote: , my impression of Rand is that if he can't help me alone he will enlist the help of someone who can. Remember I still have a case of flatback to address!Dr. Rand's bio mentions that after he finished his first residency he was chief resident at Boston Children's (my alma mater). Given that Boston is Spina Bifida City (my own sardonic moniker for "Bean Town"), I would guess he's seen a lot of myelomeningoceles, lipomas, etc.Sharon [ ] Re: Lipomyelomeningocele> --Sharon,> That is alot of information, Do you feel Rand can help you? ,PA>>>> - In , "Sharon Green"> <sharon.green18@v...> wrote:>>>> Friends, remember the "oh my God" feeling you first had when you> found out your wonderful Harrington rod "fix" had given you flatback,> which can only be fixed by even more grueling surgery? Especially if> like me you discovered the condition yourself on the internet?>>>> Well, I've just been whacked again.>>>> Thanks to my first visit with Dr. Rand and his concerns about a> possible tethered spinal cord, I've been doing a somewhat more> dilligent bit of research on

neural tube defects such as spina> bifida. As much of a shock as it was when I first learned (at age> 42!) that I was always believed to have spina bifida occulta, and as> angry as I was to learn that my parents and I had never actually been> told that fact, in spite of 15 years of follow-up, bracing, PT, and> surgery at Boston Children's and Shriners', I'm actually madder now.> Of all the doctors I've seen since I began having back and leg> problems as an adult, including orthopedic surgeons who told me my> fusion looked good and solid, and one VERY HIGHLY PLACED SPINE> SPECIALIST AT A MAJOR BOSTON HOSPITAL, no one but Rand ever expressed> concerns that I may have neurological problems from the spina bifida.>>>> Sure, the guys at Children's and Shriners' blithely bounced around> words like "lipoma" and "myelomeningocele", and gave baby-talk> explanations of their concerns

regarding the placement of my spinal> nerves, but how were we to know the exact implications of the big> words, or the fact that neurologic symptoms could continue to crop up> FOR LIFE? I know they had only x-rays to go on, and would not dare> attempt tricky neurosurgery on me as long as everything was working> ok, but if I had been armed with this knowledge at age 30 when I> began to have pain with walking, I might have had some idea where to> turn.>>>> http://www.emedicine.com/ped/topic2805.htm#target6>>>> In my reading I came across a photo. It's picture 8 near the end> of this article. The baby on the right looks a lot like me, minus 47> years. Lipomyelomeningocele. Yup, that's probably the real name for> what I have, BESIDES the congenital scoliosis. The part the

surgeons> didn't want to touch even in 1971.>>>> I followed a link from this article to a support site dedicated> specifically to lipomyelomeningocele.>>>> http://www.lfsn.org/>>>> This site is full of stories of people who have had varying degrees> of disability and varying degrees of stupid or wonderful handling by> medical people. The horrifying part is that misdiagnoses and lack of> concern by doctors have led to PERMANENT loss of lower body function,> PERMANENT numbness, PERMANENT paralysis, PERMANENT incontinence!> Surgery to correct spinal cord tethering, a very common aspect of> occult spina bifida, is now relatively low-risk and can forestall> future neurologic damage. But it does not necessarily reverse damage> done before the de-tethering, and re-tethering can occur. In other> words,

it can be a lifetime of vigilance and surgical intervention.>>>> While interviewing me for my medical history, I was keenly aware of> Dr. Rand's eyes on my feet. When I mentioned that my treatment at> Children's had included braces as well as follow-up, he asked "leg> braces?", and I shook my head, "just back braces". My feet both> turn toward the right, especially the left one. I was aware of this> at least as far back as my teens. I had thought this was just part> of the scoliosis, but it had always puzzled me as to how thorasic> rotation could cause my feet to be turned in realation to my pelvis.> Now I don't think it can. But spina bifida can, and worse. I had> been wondering recently if my left foot might be getting worse. It's> always rocked outward a bit, but sometimes it almost looks clubbed.>>>> So these next few weeks

promise to be very telling. I could be> wrong. My walking problems could be coming from lumbar stenosis.> Even if they are from a tethered spinal cord maybe de-tethering will> help.>>>> I hope so. I want to meet Cam in Boston some time and walk for> miles and miles.>>>> Sharon>>>>>>>>>>> scoliosis veterans * flatback sufferers * revision candidates>

[Guest guest]

Sharon,

Have you decided whether to have a Lumbar Puncture?

Bonnie

[ ] Re: Lipomyelomeningocele> Hi Sharon...>> I've had the same thing for several years (seeing a bright flash when> I turn my head or move my eyes in a dark room). It was dx'd as> vitreous degeneration, which is actually fairly common:>> http://www.coopereyecare.com/vitreous_degeration.htm>> -->> >>> The visual problem is hardly noticeable now, and I no longer get the> flashes>> (movement phosphenes) I used to "see" when I turned my eye suddenly> in the>> dark.>>>>>>>> scoliosis veterans * flatback sufferers * revision candidates>

[Guest guest]

Vonnie, I ended up going to the Shriners' in Springfield for my surgery, even though Children's had followed me for years. I don't know whether I met Dr. Keller. My mother remembers Dr. Green from when I was really young. My dad had found that even with good insurance the deductible was just too hard to afford. He was always worrying about how we would afford my surgery. Then he met a mother at the beach who had a crippled son, and she told him how the Shriners' hospitals treat kids with orthopedic problems completely free of charge. They had helped her son a lot. So that's how I got transferred to Shriners for my surgery in 1971.

Sharon

[ ] Re: Lipomyelomeningocele> --Sharon,> That is alot of information, Do you feel Rand can help you? ,PA>>>> - In , "Sharon Green"> <sharon.green18@v...> wrote:>>>> Friends, remember the "oh my God" feeling you first had when you> found out your wonderful Harrington rod "fix" had given you flatback,> which can only be fixed by even more grueling surgery? Especially if> like me you discovered the condition yourself on the internet?>>>> Well, I've just been whacked again.>>>> Thanks to my first visit with Dr. Rand and his concerns about a> possible tethered spinal cord, I've been doing a somewhat more> dilligent bit of research on neural tube defects such as spina> bifida. As much of a shock as it was when I first learned (at age> 42!) that I was always believed to have spina bifida occulta, and as> angry as I was to learn that my parents and I had never actually been> told that fact, in spite of 15 years of follow-up, bracing, PT, and> surgery at Boston Children's and Shriners', I'm actually madder now.> Of all the doctors I've seen since I began having back and leg> problems as an adult, including orthopedic surgeons who told me my> fusion looked good and solid, and one VERY HIGHLY PLACED SPINE> SPECIALIST AT A MAJOR BOSTON HOSPITAL, no one but Rand ever expressed> concerns that I may have neurological problems from the spina bifida.>>>> Sure, the guys at Children's and Shriners' blithely bounced around> words like "lipoma" and "myelomeningocele", and gave baby-talk> explanations of their concerns regarding the placement of my spinal> nerves, but how were we to know the exact implications of the big> words, or the fact that neurologic symptoms could continue to crop up> FOR LIFE? I know they had only x-rays to go on, and would not dare> attempt tricky neurosurgery on me as long as everything was working> ok, but if I had been armed with this knowledge at age 30 when I> began to have pain with walking, I might have had some idea where to> turn.>>>> http://www.emedicine.com/ped/topic2805.htm#target6>>>> In my reading I came across a photo. It's picture 8 near the end> of this article. The baby on the right looks a lot like me, minus 47> years. Lipomyelomeningocele. Yup, that's probably the real name for> what I have, BESIDES the congenital scoliosis. The part the surgeons> didn't want to touch even in 1971.>>>> I followed a link from this article to a support site dedicated> specifically to lipomyelomeningocele.>>>> http://www.lfsn.org/>>>> This site is full of stories of people who have had varying degrees> of disability and varying degrees of stupid or wonderful handling by> medical people. The horrifying part is that misdiagnoses and lack of> concern by doctors have led to PERMANENT loss of lower body function,> PERMANENT numbness, PERMANENT paralysis, PERMANENT incontinence!> Surgery to correct spinal cord tethering, a very common aspect of> occult spina bifida, is now relatively low-risk and can forestall> future neurologic damage. But it does not necessarily reverse damage> done before the de-tethering, and re-tethering can occur. In other> words, it can be a lifetime of vigilance and surgical intervention.>>>> While interviewing me for my medical history, I was keenly aware of> Dr. Rand's eyes on my feet. When I mentioned that my treatment at> Children's had included braces as well as follow-up, he asked "leg> braces?", and I shook my head, "just back braces". My feet both> turn toward the right, especially the left one. I was aware of this> at least as far back as my teens. I had thought this was just part> of the scoliosis, but it had always puzzled me as to how thorasic> rotation could cause my feet to be turned in realation to my pelvis.> Now I don't think it can. But spina bifida can, and worse. I had> been wondering recently if my left foot might be getting worse. It's> always rocked outward a bit, but sometimes it almost looks clubbed.>>>> So these next few weeks promise to be very telling. I could be> wrong. My walking problems could be coming from lumbar stenosis.> Even if they are from a tethered spinal cord maybe de-tethering will> help.>>>> I hope so. I want to meet Cam in Boston some time and walk for> miles and miles.>>>> Sharon>>>>>>>>>>> scoliosis veterans * flatback sufferers * revision candidates>

[Guest guest]

Bonnie, I'll be seeing my neurologist next Thursday, and I plan to discuss it with him then.

Sharon

[ ] Re: Lipomyelomeningocele> Hi Sharon...>> I've had the same thing for several years (seeing a bright flash when> I turn my head or move my eyes in a dark room). It was dx'd as> vitreous degeneration, which is actually fairly common:>> http://www.coopereyecare.com/vitreous_degeration.htm>> -->> >>> The visual problem is hardly noticeable now, and I no longer get the> flashes>> (movement phosphenes) I used to "see" when I turned my eye suddenly> in the>> dark.>>>>>>>> scoliosis veterans * flatback sufferers * revision candidates>

[Guest guest]

Sharon,

Good luck with that visit. I hope all goes well. Please let us know.

Bonnie

[ ] Re: Lipomyelomeningocele> Hi Sharon...>> I've had the same thing for several years (seeing a bright flash when> I turn my head or move my eyes in a dark room). It was dx'd as> vitreous degeneration, which is actually fairly common:>> http://www.coopereyecare.com/vitreous_degeration.htm>> -->> >>> The visual problem is hardly noticeable now, and I no longer get the> flashes>> (movement phosphenes) I used to "see" when I turned my eye suddenly> in the>> dark.>>>>>>>> scoliosis veterans * flatback sufferers * revision candidates>

[Guest guest]

Thank you, Bonnie.

I will.

Sharon

[ ] Re: Lipomyelomeningocele> Hi Sharon...>> I've had the same thing for several years (seeing a bright flash when> I turn my head or move my eyes in a dark room). It was dx'd as> vitreous degeneration, which is actually fairly common:>> http://www.coopereyecare.com/vitreous_degeration.htm>> -->> >>> The visual problem is hardly noticeable now, and I no longer get the> flashes>> (movement phosphenes) I used to "see" when I turned my eye suddenly> in the>> dark.>>>>>>>> scoliosis veterans * flatback sufferers * revision candidates>