Re: Surgeons in North Carolina...carrie

[Guest guest]

The hope was to keep it from getting worse and/or luck out with an

improvement.

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

>

>