Re: Diastematomyelia

[Guest guest]

In a message dated 3/9/2006 4:04:42 PM Eastern Standard Time,

Nina.Bunton@... writes:

Diastematomyelia IS a form of tethered cord, as it tethers the cord so that

normal movement is not possible. All the journals online or in hard copy

written on this subject class it as a tethered cord and Shokei Yamada

speaks of it as a tethered cord

Excerpted from:

" Tethered Cord Syndrome and Occult Spinal Dysraphism

from _Neurosurgical Focus_ (http://www.medscape.com/viewpublication/65)

Daryl E. Warder, M.D., Ph.D. Department of Surgery, Division of

Neurosurgery, The University of Texas Medical Branch, Galveston, Texas "

Under the Specific Dysraphic Elements section:

" Diastematomyelia, also referred to as SCM, refers to the splitting of the

spinal cord, conus medullaris, or terminal filum in the sagittal plane into two

not necessarily equal halves.[26,56] A united theory of SCMs describes a

Type I malformation as a split cord residing in a common dural tube and a Type

II malformation as a split cord divided by a bone spur with each hemicord

residing in a separate dural tube.[56] A thick cutaneous hairy patch usually

overlies the region of the diastematomyelia.[56,59] Diastematomyelia may

account

for up to 25% of OSD cases.[2] Bone anomalies are present in 85% of cases,

and scoliosis is present in 50% of cases of diastematomyelia.[48] In 91% of

cases, the two hemicords reform a single cord below the site of division.[48]

In 50% of cases, the hemicords are contained within a single dural tube (Type

I malformation; Figure 5) without a midline bone spur.[48,56] Tethering may

occur as a result of dorsal tethering bands between the hemicords and dura or

from a thickened terminal filum.[54] In the other 50% of cases, a median

septum divides the hemicords, which are contained within separate dural tubes

(Type II malformation).[48,56] The median septum lies external to both dural

tubes.[48,56] Axial CT or CT myelography, or MR imaging (Figure 6) is useful

in demonstrating the hemicords and median septum.[48] Surgical intervention

may involve resecting the median septum and dividing a thickened filum and

dorsal tethering bands.[48,56] Andar, et al.,[2] have suggested that, although

surgical intervention in patients with diastematomyelia may stabilize

progressive neurological and urological symptoms and may prevent the onset of

neurological and urological deterioration, it may not affect the emergence of

the

neuroorthopedic syndrome [21] of limb-length asymmetry and foot deformities. "

It sounds to me like a person with diastematomyelia may or may not have

their cord tethered, depending on what is going on in the area besides just the

split cord... so while it CAN be one form of tethered cord, a person with this

doesn't ALWAYS have a TC...

Connie

Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula

imperforate anus (repaired 5/00), single kidney, PDA (closed on its own),

malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis with

hemivertebrae, extra left rib, genital anomalies with hypospadius (repairs

9/00,11/00, 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired

5/01)

and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux,

DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most

beautiful

smile ever) _conni60640@..._ (mailto:conni60640@...)

Our website _http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/)

TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_

(http://health.groups.yahoo.com/group/LMC-TCS/)

Congenital scoliosis support group

_http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/)

S. Jersey

[Guest guest]

I do not believe Diastematomyelia is a form

of Tethered Cord, nor is it a form of Spina Bifida.

However, it is a condition that is seen with the

above 2 Conditions.

I also have Diastematomyelia.

Me

Nebraska, USA

mymocha@...

I have both

> diastematomyelia type tethered cord syndrome and acm.

[Guest guest]

Diastematomyelia IS a form of tethered cord, as it tethers the cord so that

normal movement is not possible. All the journals online or in hard copy

written on this subject class it as a tethered cord and Shokei Yamada

speaks of it as a tethered cord

Respectfully speaking, members of this group should become educated on the

matter before possibly giving out erroneous information

Nina

--

> I do not believe Diastematomyelia is a form

> of Tethered Cord, nor is it a form of Spina Bifida.

> However, it is a condition that is seen with the

> above 2 Conditions.

>

> I also have Diastematomyelia.

>

> Me

> Nebraska, USA

> mymocha@...

>

> I have both

>> diastematomyelia type tethered cord syndrome and acm.

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

> kathy@...,michelle@..., rick@...

>

[Guest guest]

I do not want to start an argument on the List.

But insulting comments are really uncalled for.

I am educated on this. I have it myself. Maybe

there are different forms..........but for me, it

is a Split in my Cord, which I was born with.

To a point it is almost like 2 Spinal Cords, in

my situation. Each side is incased in it's own

coverings. I also only have Spina Bifida on

one side of my Cord, on one side of the Split.

I'll stop there.

Me

Nebraska, USA

mymocha@...

> Diastematomyelia IS a form of tethered cord, as it tethers the cord so

> that

> normal movement is not possible. All the journals online or in hard copy

> written on this subject class it as a tethered cord and Shokei Yamada

> speaks of it as a tethered cord

>

> Respectfully speaking, members of this group should become educated on the

> matter before possibly giving out erroneous information

>

[Guest guest]

Thank you for your input Brande.

I also don't want to start arguments, as usually this list is very good to

be part of. That was why I said " respectfully speaking " but obviously my

attempt at being polite over the internet backfired

Apologies

Nina

--

>

> I do not want to start an argument on the List.

> But insulting comments are really uncalled for.

>

> I am educated on this. I have it myself. Maybe

> there are different forms..........but for me, it

> is a Split in my Cord, which I was born with.

> To a point it is almost like 2 Spinal Cords, in

> my situation. Each side is incased in it's own

> coverings. I also only have Spina Bifida on

> one side of my Cord, on one side of the Split.

>

> I'll stop there.

>

> Me

> Nebraska, USA

> mymocha@...

>

>

>> Diastematomyelia IS a form of tethered cord, as it tethers the cord so

>> that

>> normal movement is not possible. All the journals online or in hard copy

>> written on this subject class it as a tethered cord and Shokei Yamada

>> speaks of it as a tethered cord

>>

>> Respectfully speaking, members of this group should become educated on

>> the matter before possibly giving out erroneous information

>>

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

> kathy@...,michelle@..., rick@...

>

[Guest guest]

>

> > I do not believe Diastematomyelia is a form

> > of Tethered Cord, nor is it a form of Spina Bifida.

> > However, it is a condition that is seen with the

> > above 2 Conditions.

> >

> > I also have Diastematomyelia.

> >

> > Me

> > Nebraska, USA

> > mymocha@...

> >

> > I have both

> >> diastematomyelia type tethered cord syndrome and acm.

> >

> >

> > Not Medical Advice. We Are Not Doctors.

> > Need help with the list? Email

> > kathy@...,michelle@..., rick@...

> >

[Guest guest]

Just thought I would remind everyone, we all are here

to learn, none of us our docotors...and we just voice

opions, not medical advice!

Thanks!

Tommi

--- sandra_sanderson2000

wrote:

>

> >

> > > I do not believe Diastematomyelia is a form

> > > of Tethered Cord, nor is it a form of Spina

> Bifida.

> > > However, it is a condition that is seen with the

> > > above 2 Conditions.

> > >

> > > I also have Diastematomyelia.

> > >

> > > Me

> > > Nebraska, USA

> > > mymocha@...

> > >

> > > I have both

> > >> diastematomyelia type tethered cord syndrome

> and acm.

> > >

> > >

> > > Not Medical Advice. We Are Not Doctors.

> > > Need help with the list? Email

> > > kathy@...,michelle@..., rick@...

> > >

[Guest guest]

I don't know that diastematomyelia increases the risk of retether. I think

that is just more personal - how your body makes scar tissue. But it is a

more complex surgery than a filum alone. The bone & cartilage divided my

cord at L2 (right under my SBO) and from that point down, I have 2 cords. I

would just make sure that your surgeon has experience doing the

diastematomyelia surgery, as it is rarer than just TC and even more rare to

be found in an adult. As diastematomyelia is more likely to cause problems

and is generally found younger. When I had my first myelogram, I was the

radiology " case of the day " (where they leave your films on the viewer in

radiology for the residents and other MDs to learn from). I ended up having

SO many MDs and group of residents come by my bed while I was recovering

from my myelogram that wanted to examine me and hear my history.

I think the SBAA has a fact sheet on diastematomyelia.

Jenn

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of Patty C

Sent: Thursday, March 13, 2008 7:11 PM

To: tetheredspinalcord

Subject: Re: Tc surgery recovery

So that makes 3 of us right here with split cords! Mine is also split

and then joins again at the bottom like Dee's. I haven't been able to

find that much info on the split cord. It does seem like it would add

some complexity to the surgery, and I have read there are often

multiple tetherings with the split cord. Anything else particular to

the split cord I should know? Other than a tendency to tether, does a

split cord cause other symptoms or complications? Any good links on

diastematomyelia?

Thanks,

Patty

> >> > Hi everyone,> >> > Just found this forum, so

haven't had much time yet to research> older> > posts.> >> > I am a 52

year old woman living, working in S. Florida, and was> > recently

diagnosed with TCS. Started having symptoms only this past> >

November, had an MRI, and much to my dismay, found out I have> >

Diastematomyelia (split cord malformation), TCS, a syrinx (lumbar> >

region), and some herniated discs. Was also diagnosed with Spina> >

Bifida, which I believe is related to the split cord malformation.> >>

> This past Monday I had an appt. with Dr. Green in Miami, and will

be> > scheduled for TCS surgery very soon. They will also fix one of

my> > discs that is pressing against my sciatic nerve.> >> > Dr. Green

said the TCS surgery in Miami is normally handled by> > pediatrics,

and he will confer with the pediatrics NS (I believe Dr.> > Ragheb)

and they will make a plan together for my surgery. DH says I> > have

to have pediatric surgery because I am too short to have adult> >

surgery!> >> > One of my first concerns is recovery time for the TCS

surgery. Dr.> > Green said 2-3 weeks, but from what I have been

reading that sounds> > very optimistic. My job is not physically

demanding (computer> > programmer), but it is a bit intense, with long

days expected, and I> > am worried that I won't be able to handle the

normal work day for a> > few months.> >> > Best regards to all> >>>

_>

[Guest guest]

My neurosurgeon did not seem too concerned about the split cord, just that he

wanted to stay away from it during surgery so did the surgery lower down in my

sacral bones -- I just had my filum terminale detethered. He didn't mention

that it was separated by any bone or cartilage or was what was causing my

problems, so maybe every split cord it different? I will ask more about the

split cord at my follow-up appointment.

Dee

To: tetheredspinalcord@...: jlbobin@...: Fri, 14 Mar

2008 11:21:08 -0400Subject: RE: Diastematomyelia

I don't know that diastematomyelia increases the risk of retether. I thinkthat

is just more personal - how your body makes scar tissue. But it is amore complex

surgery than a filum alone. The bone & cartilage divided mycord at L2 (right

under my SBO) and from that point down, I have 2 cords. Iwould just make sure

that your surgeon has experience doing thediastematomyelia surgery, as it is

rarer than just TC and even more rare tobe found in an adult. As

diastematomyelia is more likely to cause problemsand is generally found younger.

When I had my first myelogram, I was theradiology " case of the day " (where they

leave your films on the viewer inradiology for the residents and other MDs to

learn from). I ended up havingSO many MDs and group of residents come by my bed

while I was recoveringfrom my myelogram that wanted to examine me and hear my

history. I think the SBAA has a fact sheet on diastematomyelia. JennFrom:

tetheredspinalcord [mailto:tetheredspinalcord ] On

Behalf Of Patty CSent: Thursday, March 13, 2008 7:11 PMTo:

tetheredspinalcord@...: Re: Tc surgery recoverySo that

makes 3 of us right here with split cords! Mine is also splitand then joins

again at the bottom like Dee's. I haven't been able tofind that much info on the

split cord. It does seem like it would addsome complexity to the surgery, and I

have read there are oftenmultiple tetherings with the split cord. Anything else

particular tothe split cord I should know? Other than a tendency to tether, does

asplit cord cause other symptoms or complications? Any good links

ondiastematomyelia?Thanks,Patty> >> > Hi

everyone,> >> > Just found this forum, sohaven't had much time yet to research>

older> > posts.> >> > I am a 52year old woman living, working in S. Florida, and

was> > recentlydiagnosed with TCS. Started having symptoms only this past>

>November, had an MRI, and much to my dismay, found out I have>

>Diastematomyelia (split cord malformation), TCS, a syrinx (lumbar> >region),

and some herniated discs. Was also diagnosed with Spina> >Bifida, which I

believe is related to the split cord malformation.> >>> This past Monday I had

an appt. with Dr. Green in Miami, and willbe> > scheduled for TCS surgery very

soon. They will also fix one ofmy> > discs that is pressing against my sciatic

nerve.> >> > Dr. Greensaid the TCS surgery in Miami is normally handled by> >

pediatrics,and he will confer with the pediatrics NS (I believe Dr.> >

Ragheb)and they will make a plan together for my surgery. DH says I> > haveto

have pediatric surgery because I am too short to have adult> >surgery!> >> > One

of my first concerns is recovery time for the TCSsurgery. Dr.> > Green said 2-3

weeks, but from what I have beenreading that sounds> > very optimistic. My job

is not physicallydemanding (computer> > programmer), but it is a bit intense,

with longdays expected, and I> > am worried that I won't be able to handle

thenormal work day for a> > few months.> >> > Best regards to all>

>>>_>