Re: Surgeons in North Carolina....

[Guest guest]

Hey ...I am so thrilled to hear about this surgery! Certainly, if

she has further accidents (both were when sleeping..) and the constipation

has been resolved with fiber pills as needed we would check into that. it

is just so terrific to know that such an option is out there!! Thanks so

much. It is of great comfort. Randee

In a message dated 8/29/2010 7:18:59 P.M. Central Daylight Time,

carrie6615@... writes:

*Randee,*

*If your daughter is having " urinary accidents, and increased constipation "

Did the Dr. think that another detethering would resolve that issue??*

**

*If repeated detetherings do not resolve the bowel and bladder issues, have

you considered the Mitrofanoff or MACE procedure? The surgeon ( Urologist)

makes a tiny stome ( hole) in the bellybutton that you insert a little tube

, flush with warm tap water, and poop immediately. then you stay " poop-free

and constipation free " for 24-30 hours...*

*The Mitrofanoff is a tiny stoma in the groin that is SOOO easy and

painless

to catheter your urine from.*

**

*That way your daughter would not have to worry about having " accisdents "

OR

being constipated. ever.*

**

*Thats the surgery my son had and it is amazing!! He used to have

accidents

every day and was severely constipated ALL the time, despite miralax,

enemas, suppositories... *

**

*Sincerely,*

*carrie *

>

>

> We really do have a lot in common..my dtr's 4th surgery was just about

2.5

> weeks ago. So far, no more pain but of course she hasn't formed the scar

> tissue yet so who knows. We also went ahead with it because she had two

> urinary accidents and increasing constipation over the last year. I wish

I

> had better ideas. She was lucky that 900 mg neurontin controlled the pain

> but she seemed very fatigued and gained a lot of weight. Some of the old

> antidepressants have been successful with pain control (elavil for

> eg)...massage helped my daughter for a week or two...She is 20..I would

go

> to a pain

> management specialist..hopefully a clinic that has anesthesiology, pt,

> psychiatry, psychology etc./ They are hard to find but I worked at one

in

> KC

> and Saint Louis and I think the multi-disciplinary approach is the way to

> go. They even had an MD that was an acupunturist. Big hugs...it doesn't

get

>

> any easier as they become adults, does it? Randee

>

>

> In a message dated 8/29/2010 6:24:38 P.M. Central Daylight Time,

> livviep62@... <livviep62%40yahoo.com> writes:

>

> Randee,

> Dr. Fuchs is an ortho, it was Dr. Grant. We really like him and would

> recommend him to anyone. But, just don't want to accept that this is it.

> She

> is 27 years old and deserves to not spend the rest of her life on strong

> pain meds if possible. She is currently on nothing but 1000mg of

neurontin.

>

> It doesn't come close to releiving the pain. She has been on 120mg of a

> long acting codeine and just got tired of not feeling like doing anything

> but sleeping. We want to explore all of the options. Any suggestions

would

> be appreciated!

> Livvie

>

>

>

> From: _Randeejae@... <_Randeejae%40aol.com>_

(mailto:Randeejae@...<Randeejae%40aol.com>)

> <_Randeejae@... <_Randeejae%40aol.com>_

> (mailto:Randeejae@... <Randeejae%40aol.com>) >

>

> Subject: Re: Surgeons in North Carolina

> To:

_tetheredspinalcord <_tetheredspinalcord%40yahoogroups.com>_

>

>

(mailto:tetheredspinalcord <tetheredspinalcord%40yahoogroups.com>\

)

>

> Date: Sunday, August 29, 2010, 7:13 PM

>

>

> Livvie..I so empathize. My daughter just had her fourth detethering. Has

> your daughter been on any medications for pain? Is it Dr. Fuchs? I know

> people rave about him. Anyway, whoever it was, what do they suggest for

> pain control? With great empathy, Randee

>

> In a message dated 8/29/2010 6:07:24 P.M. Central Daylight Time,

> _livviep62@... <_livviep62%40yahoo.com>_ (mailto:

> livviep62@... <livviep62%40yahoo.com>) writes:

>

> Hi,

> My name is Livvie and I have been part of this group for several years.

> Occassionaly

> making a comment or asking a question, but mostly just gather information

> from the

> posts of others. My daughter has had 4 de-tethering surguries and is

> symptomatic

> again, and has been almost since she left the hospital from her last

> surgery.

> Her neurosugeon at Duke has said they have done everything they can do to

> help her

> and unless she shows neurological decline, further surgeries are not

> advised.

> I personally would hate to see her have more surgeries. But, surely there

> is something

> that can be done to releive her pain. I would love to have a second

> opinion before we

> accept this and give up on being somewhat pain free without strong meds.

> Anybody have any experiences with any Dr.'s in North Carolina other than

> Duke hospital?

> I would love some feedback.

> Thanks,

> Livvie

>

>