Re: Re: to Jenn

[Guest guest]

thanks so very much, Jenn. She is having pain again..sometimes burning

and sharp and bad..sometimes quite minimal. We are hopeful this might settle

down but, again, we knew that it was a small chance that surgery would fix

the pain...it was just so great to see her totally pain free for 3 months.

sigh. No, she doesn't have arachnoiditis...as far as we know! If she

has no trouble with constipation or with urinary incontinence, we will be

very happy about that. The surgeon went ahead with it because those were new

problems this year..perhaps he felt, " one more time " but he gave us no

false hope and I guess wanted to see what he could do LOL as he was our third

(due to moving)..he will be sad for I am sure if this continues as

they really enjoyed each other I think..my girl, now 20, is very funny! I

may have mentioned that he said in regards to how much she could carry, " no

more than two dresses and a pair of shoes " he had her number for sure!

Randee

In a message dated 11/8/2010 11:22:28 A.M. Central Standard Time,

jlbobin@... writes:

Randee,

I am so sorry to hear that. Does she have arachnoiditis? What are her

symptoms now that make you think she has retethered again? I know she was

experiencing neuro decline before this last one, hence the decision to go

forward with another untethering. What are her symptoms now? Maybe she is

still healing from the surgery? Did her surgeon with her last surgery have

any special techniques that he says decreases scarring/retethering? (not

that I believe any of them, but the surgeons seem to think their techniques

make a difference. Its just not a difference I have seen over the course

of

years on this list - who retethers and who doesn't seems to be up to the

flip of a coin. Two people with the same type of tether who had the same

surgery done by the same surgeon and one will retether and the other won't.

Just doesn't seem to be any rhyme or reason).

If she is retethered would she consider doing surgery again? The more

surgeries you have, the greater the risk of complications and functional

loss from (even a correctly performed) surgery - just look at me). I also

think there is a greater chance of developing arachnoiditis the more times

they go in there, since each surgery irritates the arachnoid membrane.

I'm so sorry to hear that she may be retethered yet again. That sux. Just

doesn't seem fair those that don't have problems with retether when you are

one of us who do.

Jenn

>

>

> Jenn..I sadly so agree..my dtr may well be retethered 3 months after her

> last (4th) surgery...3 different surgeons, 3 different " tricks " to reduce

> scarring etc. Sigh. Let's hope more folks find this an interesting

subject

> for research! Randee

>

>

> In a message dated 11/7/2010 9:18:03 P.M. Central Standard Time,

> jlbobin@... <jlbobin%40gmail.com> writes:

>

> I don't know exactly what kind of dural graft Falci does, but a lot of

> other

> docs do dural grafts. I am only aware of two kinds of graft material for

> the

> dura - bovine pericardium and gortex. My surgeon used it in my initial

> surgery not to decrease scarring,but because after he removed the

cartilage

> that was dividing my cord (diastematomyelia), there was not enough dura

to

> close (the cartilage of the diastematomyelia had extended into the dura)

> and

> he wanted to make sure there was enough room for the CSF flow so I

wouldn't

> develop a syrinx.

>

> I retethered in less than 4 months after that surgery. Apparently, my

body

> didn't like the bovine pericardium he used to graft my dura, and it

> attacked

> it with scar tissue - hence the reason I retethered so quickly.

>

> Personally, I don't think that a specific graft material or post-op

> regiment

> (such as laying for " x " : days straight, or not spending more than 4 hours

> on

> one side and having to roll every 4 hours, or laying only on the stomach

> for

> so many days post op) does diddily squat to prevent retethering. After my

> first surgery, I was rolled every 4 hours (the thought being that if the

> cord never lays in one spot for that long, scar tissue wont' have a

chance

> to form and get stuck to it). Well, that didn't work for me. After my

last

> two surgeries, I was on my back for about a week. Not because that was my

> MDs regiment, but because I was sedated and couldn't do anything.

Actually,

> after my second surgery, I had a lumbar drain inserted and had to lay

flat

> on my back until that was removed. And honestly, the only surgery I

> retethered from (the first) was the only where the MD did things he felt

> would prevent it (graft material and rolling every 4 hours). I think that

> if your body is prone to develop scar tissue, it will and there really

> isn't

> anything you can do or not do to prevent retethering. If its going to

> happen, it will. If you're not one to develop scar tissue, it won't.

>

> I have talked to people who have had every kind of graft material and

done

> every post op regiment. Some retether and some don't. But there is no

> rhyme or reason as to why one person does and another doesn't - and they

> had

> the exact same graft and/or post op treatment to " prevent " retethering.

>

> that is just my personal belief. You can find people on the list that

have

> had bovine pericardium dural grafts who retethered and those who didn't.

> You

> can find people on the list that had gortex used for their dural graft

and

> some retether and some won't. Same goes for the post-op shenanigans

> (rolling, flat on back, flat on stomach, etc). Some will and some won't

> retether. I think it just depends on each person's individual body and as

> long as the surgery is performed correctly (technically), then its just

up

> to the person's body and nothing the person does or the surgeon has them

> do/not do is going to affect their odds of retethering.

>

> But that is just my belief on the subject.

>

> Jenn.

>

> On Sat, Nov 6, 2010 at 4:34 PM, stvtm <stvtm@...

<stvtm%40yahoo.com>>

> wrote:

>

> >

> >

> > Thanks for the info . I'm thinking everything stems from the TC,

> so I

> > don't think I'll bother with X-rays. It feels like my tailbone is being

> > pulled, but my pelvis is shifted also which I know is due to the TC. I

> did

> > not know Falci did not do congenital TC.

> >

> > I wonder if any docs that do congenital TC do the dura graft that Falci

> > does? and if it is really any better than other techniques. can

you

> > shed some light on this?

> >

> > Thanks

> >

> >

> > > >>

> > > >> My surgery date is the 23rd of November.Does anyone have any tips

> on

> > what I need to buy/do to make things easier?

> > > >> Thanks!

> > > >> from Chicago

> > > >>

> > > >>

> > > >>

> > > >>

> > > >>