Re: Second Surgery date 10/19/04

[Guest guest]

,

All the luck in the world for the second surgery. Lets hope it's your

last!

Carey

Hove UK

>

> Hey everyone many of you know I joined this group after I started

> getting new symptoms after having my cord detethered about 2 years

> ago. I did the research, and I have heard much of your collective

> wisdom. I finally decided to go ahead with the second surgery

> after months of debate.

>

> My primary reasons for coming to this decision is that I am just 23

> and I want to enjoy the prime of my life. I have felt less-than

> able bodied for the last several month; the pain I experience is

> severe, worsens with any degree of physical activity, isn't

> controlled well with medication(in fact the medicines have taken a

> toll on my concentration, focus, lebido, and etc.)

>

> As you all know my biggest fear is that the operation will fix

> nothing and catapult me into a state far worse than what I am

> experiencing now. But I feel like I have to give it a shot. I

want

> to marry my girlfriend and provide for my family.

>

> I want to be a strong father and go to amusement parks with my

kids,

> toss the football around etc. I wish these symptoms spared me

until

> my middle-ages because at that time I will have already

accomplished

> most of my dreams.

>

> One thing I will definitely share with this group is my experience

> with the second untethering procedure. I know that there are many

> of you who have had one procedure only to find out you have

> retethered and are worse off than you were prior to any surgical

> intervention. Still, I know there are some of you who have

> considered second untetherings but have not heard enough specefic

> and positive information to go for it yourselves. As soon as I am

> able I will give as vivid an accound as possible. As it stands

here

> is where I am having the procedure and the specefic details

relating

> to my future surgery.

>

> Hosptial: NYU medical facilities.

> Surgeon: Dr. Wisoff, chief pediatric neurosurgeon

(26

> years experience)

>

> Tools:

> 1. He employs microsurgical techniques, but does not include a YAG

> laser in the procedure. This didn't make or break my decision to

> have surgery with him because I talked to several differant MDs

> about the laser and it's utility is more related to the surgeon's

> preferance rather than the patient's prognosis.

> 2. Intradural graft(gortex gen II) will be sewn into the dura to

> expand the spinal canal. This will give the nerves more room in

the

> canal...and therefore, less chance of a tight retether.

>

> technique: I have heard of this technique before in this group.

> Basically the surgeon is going to crosstich the dura in such a way,

> that there will be less surface area for the nerves to interact

with

> to get tethered.

>

> Picture if you will a regular circle as the circumference of the

> dura. If there is scarring on the dorsal part of this circle then

> the nerves have a broad surface area to retether too.

>

> Instead of keeping the dura as a circle, mine will have a bevel or

> cleft sewn in so it looks more like a heart:). Now in this setting

> the appex or crest that forms the heart is the only surface area

> that the nerves can interact with. Therefore, if retethering does

> occur it shouldn't be symptomatic. Chances of future retethering

> were quoted at 5-10%...but that's nothing we all haven't heard

> before.

[Guest guest]

Thank you all from the bottom of my heart. I truly do hope this

works out and I do stand by the decision I have made both because I

feel I am loosing substantial coordination in my legs and because of

insane pain. I will let you all know about the results within 2

weeks post-op.

> >

> > Hey everyone many of you know I joined this group after I

started

> > getting new symptoms after having my cord detethered about 2

years

> > ago. I did the research, and I have heard much of your

collective

> > wisdom. I finally decided to go ahead with the second surgery

> > after months of debate.

> >

> > My primary reasons for coming to this decision is that I am just

23

> > and I want to enjoy the prime of my life. I have felt less-than

> > able bodied for the last several month; the pain I experience is

> > severe, worsens with any degree of physical activity, isn't

> > controlled well with medication(in fact the medicines have taken

a

> > toll on my concentration, focus, lebido, and etc.)

> >

> > As you all know my biggest fear is that the operation will fix

> > nothing and catapult me into a state far worse than what I am

> > experiencing now. But I feel like I have to give it a shot. I

> want

> > to marry my girlfriend and provide for my family.

> >

> > I want to be a strong father and go to amusement parks with my

> kids,

> > toss the football around etc. I wish these symptoms spared me

> until

> > my middle-ages because at that time I will have already

> accomplished

> > most of my dreams.

> >

> > One thing I will definitely share with this group is my

experience

> > with the second untethering procedure. I know that there are

many

> > of you who have had one procedure only to find out you have

> > retethered and are worse off than you were prior to any surgical

> > intervention. Still, I know there are some of you who have

> > considered second untetherings but have not heard enough

specefic

> > and positive information to go for it yourselves. As soon as I

am

> > able I will give as vivid an accound as possible. As it stands

> here

> > is where I am having the procedure and the specefic details

> relating

> > to my future surgery.

> >

> > Hosptial: NYU medical facilities.

> > Surgeon: Dr. Wisoff, chief pediatric neurosurgeon

> (26

> > years experience)

> >

> > Tools:

> > 1. He employs microsurgical techniques, but does not include a

YAG

> > laser in the procedure. This didn't make or break my decision

to

> > have surgery with him because I talked to several differant MDs

> > about the laser and it's utility is more related to the

surgeon's

> > preferance rather than the patient's prognosis.

> > 2. Intradural graft(gortex gen II) will be sewn into the dura to

> > expand the spinal canal. This will give the nerves more room in

> the

> > canal...and therefore, less chance of a tight retether.

> >

> > technique: I have heard of this technique before in this group.

> > Basically the surgeon is going to crosstich the dura in such a

way,

> > that there will be less surface area for the nerves to interact

> with

> > to get tethered.

> >

> > Picture if you will a regular circle as the circumference of the

> > dura. If there is scarring on the dorsal part of this circle

then

> > the nerves have a broad surface area to retether too.

> >

> > Instead of keeping the dura as a circle, mine will have a bevel

or

> > cleft sewn in so it looks more like a heart:). Now in this

setting

> > the appex or crest that forms the heart is the only surface area

> > that the nerves can interact with. Therefore, if retethering

does

> > occur it shouldn't be symptomatic. Chances of future

retethering

> > were quoted at 5-10%...but that's nothing we all haven't heard

> > before.

[Guest guest]

Thanks for a well-written email, . I wish you a very successful surgery on

the 19th- I'll be waiting for an update.

Stacey, mom to Sam (22 months, pre-op)

[Guest guest]

This is truly an amazing support group, initially I had to suck up

my pride before joining one but everyone here is wonderful and

special. I hope that G-d blesses each and every one of you in the

future. I find it amazing that this group is full of people from all

around the world. UK, USA, Canada, and etc. and we are completely

united and supportive when it comes to things that most people take

for granted...our health and the quality of our lives. Whether you

are a mother or father supporting children going through these rough

times or a newly diagnosed adult individual, one thing to me is

clear, you are all a bunch of powerful people who are an inspiration

to me. True Menches. I only wish that our officials who had a

voice in the world had your hearts.

> Thanks for a well-written email, . I wish you a very

successful surgery on the 19th- I'll be waiting for an update.

>

> Stacey, mom to Sam (22 months, pre-op)