Re: Need a dr in Nj or NYC HELP

[Guest guest]

Lindsey, Who did your first surgery? Can you go back to that surgeon or at least

get a referral for a second opinion?

> > >

> > >>

> > >>

> > >> Hi, my name is Patsy and I'm 58 years old. I didn't even know I had

> > >> tethered cord until intense pain hit my hip and leg when I was 50. Two

> > >> years

> > >> after my first detethering, I retethered and had a second surgery.

> > >> Unfortunately, my surgeon could not get the last two " rootlets " free

> > >> without

> > >> leaving me paralized. (You know how they monitor the surgery as it goes

> > >> along.) Of course, those last two control my bowels and bladder, so those

> > >> problems have just increased. A couple years ago, my pain increased also,

> > >> so

> > >> I knew I had completely retethered. Since the last surgery wasn't

> > >> complete,

> > >> I know there is no reason to try more surgery. I have a neurostimulator

> > >> for

> > >> my hip and leg pain. In the last year, the pain has spread to my back. I

> > >> can't afford to take anymore time off work for surgery for fear of losing

> > >> my

> > >> job. So, instead of another neurostimulator, I also have a TENS unit for

> > >> my

> > >> back.

> > >> My problem is that I cannot find a neurologist that knows anything about

> > >> long term care or prognosis when surgery is not an option. Last year, I

> > >> thought I had found one, but all he did was put me through painful and

> > >> unnecessary tests that only confirmed that I had in fact retethered. I

> > >> had

> > >> explained to him before I went to the first appointment that I didn't

> > >> want

> > >> him to " fix " me, just tell me what I have to look forward to. He finally

> > >> admitted he didn't know.

> > >>

> > >> I live in southeast Michigan. I have tried Henry Ford Hospital system and

> > >> even wrote to the head of neurology at University of Michigan. These are

> > >> two

> > >> of the best hospitals in the US, and neither one has a neurologist that

> > >> can

> > >> help me. Has anyone had any luck finding a doctor that has experience

> > >> with

> > >> TCS?

> > >>

> > >> I'm sorry this post is so long, but I would also like to know if anyone

> > >> has

> > >> gone on disability with this condition.

> > >>

> > >> Thanks for your time, Patsy

> > >>

> > >>

> > >>

> > >

> > >

> > >

[Guest guest]

The honest and difficult truth here is, it may be too dangerous or risky to

perform another de-tethering surgery on your spine, due to your double tether

and other complications. Often when there's this kind of risk involved,

neurosurgeon's evaluations and second opinions remain cautious. As Jenn said

before, there is no " fix " to TSC. Sometimes surgery works and sometimes it

doesn't. Surgery is not guaranteed to work. This is hard to hear, especially

when one is in extreme pain, discomfort and suffering. Have you thought about

sending your films to either Dr. Frim at University of Chicago or Dr. Fuch's at

Duke? At the very least, they will look them over and get back to you with their

recommendations, surgery or no surgery.

When surgery is no longer an option. It's time for PLAN B -- I.e. living your

life in the best way possible, with help from physiotherapist, OT/PT, pain

management (perhaps a pain pump is an option with you -- Kathy Moulton on the

list would be a good person to ask about this as she has one) bowel management

program to make that a bit easier on you and your system .. and most

importantly, help from family and friends b/c no one can do this alone,

especially with a toddler. You might contact the SBOO chapter in the NJ/NYC

metro area to help you with finding resources.

Write anytime, you are NEVER ALONE ~

Warmly,

TSC Group Moderator

>

> Please help guys. I can't find any adult neuros willing todo my detethering.

I'm 25 going on 26 And I do

> Have a Double Tether with a lot of scar tissue and my last surgery was in 2008

and I was icu for a week then went to

> Step down floor for 5 days came home leaked and went back two days later had

a leak repair and spent another week there. But they all Say it's to

Complicated. But I can't take it anymore. My pain meda don't work. I have a two

year old daughter who is 25 lb and I can carry her from my car to front door.

Most days I don't wanna get put of bed. I can never poop and I just wanna try

surgery again. Last time even though I had a few obstacles. It was amazing two

years or living. Then I had a baby and I ruined myself all over again. So

please names and idea will help. I'm on Opana and soma and diauldid and vicoden

so maybe others have better meds? My Opana doesn't seem to last the 12 hours its

supposed to anyone else on it? Thanks guys!

>

> This message was sent from s' iPhone. Apologies if it does not format

corectly.

>

>

[Guest guest]

It was dr. Feildstein at stanly childrens. Ad his referral dr was a jerk!

I can't stand him keeps telling my pain and stuff is not tsc related.

This message was sent from s' iPhone. Apologies if it does not format

corectly.

> Lindsey, Who did your first surgery? Can you go back to that surgeon or at

least get a referral for a second opinion?

>

>

>

> > > >

> > > >>

> > > >>

> > > >> Hi, my name is Patsy and I'm 58 years old. I didn't even know I had

> > > >> tethered cord until intense pain hit my hip and leg when I was 50. Two

> > > >> years

> > > >> after my first detethering, I retethered and had a second surgery.

> > > >> Unfortunately, my surgeon could not get the last two " rootlets " free

> > > >> without

> > > >> leaving me paralized. (You know how they monitor the surgery as it goes

> > > >> along.) Of course, those last two control my bowels and bladder, so

those

> > > >> problems have just increased. A couple years ago, my pain increased

also,

> > > >> so

> > > >> I knew I had completely retethered. Since the last surgery wasn't

> > > >> complete,

> > > >> I know there is no reason to try more surgery. I have a neurostimulator

> > > >> for

> > > >> my hip and leg pain. In the last year, the pain has spread to my back.

I

> > > >> can't afford to take anymore time off work for surgery for fear of

losing

> > > >> my

> > > >> job. So, instead of another neurostimulator, I also have a TENS unit

for

> > > >> my

> > > >> back.

> > > >> My problem is that I cannot find a neurologist that knows anything

about

> > > >> long term care or prognosis when surgery is not an option. Last year, I

> > > >> thought I had found one, but all he did was put me through painful and

> > > >> unnecessary tests that only confirmed that I had in fact retethered. I

> > > >> had

> > > >> explained to him before I went to the first appointment that I didn't

> > > >> want

> > > >> him to " fix " me, just tell me what I have to look forward to. He finally

> > > >> admitted he didn't know.

> > > >>

> > > >> I live in southeast Michigan. I have tried Henry Ford Hospital system

and

> > > >> even wrote to the head of neurology at University of Michigan. These

are

> > > >> two

> > > >> of the best hospitals in the US, and neither one has a neurologist that

> > > >> can

> > > >> help me. Has anyone had any luck finding a doctor that has experience

> > > >> with

> > > >> TCS?

> > > >>

> > > >> I'm sorry this post is so long, but I would also like to know if anyone

> > > >> has

> > > >> gone on disability with this condition.

> > > >>

> > > >> Thanks for your time, Patsy

> > > >>

> > > >>

> > > >>

> > > >

> > > >

> > > >

[Guest guest]

Vicodin and Diludid are both contain Tylenol, I like am wondering why

you're on both of them, as they can be toxic to your liver you have too much.

So, I would highly recommend, adjusting the meds you're on and only taking

either Vicodin or Diludid NOT both. The doctor prescribing these to you should

surely no better!

As far as your overseeing Nsg's second opinion referral that you did not like.

Have you tried any of the neurosurgeon's over at the INN at Beth Israel in

Manhatten? I've had good luck with them in the past. You might also try

Columbia-Presb as well. I agree with others to get another recommendation. Good

Luck!

>

> > > > >

>

> > > > >>

>

> > > > >>

>

> > > > >> Hi, my name is Patsy and I'm 58 years old. I didn't even know I had

>

> > > > >> tethered cord until intense pain hit my hip and leg when I was 50.

Two

>

> > > > >> years

>

> > > > >> after my first detethering, I retethered and had a second surgery.

>

> > > > >> Unfortunately, my surgeon could not get the last two " rootlets " free

>

> > > > >> without

>

> > > > >> leaving me paralized. (You know how they monitor the surgery as it

goes

>

> > > > >> along.) Of course, those last two control my bowels and bladder, so

those

>

> > > > >> problems have just increased. A couple years ago, my pain increased

also,

>

> > > > >> so

>

> > > > >> I knew I had completely retethered. Since the last surgery wasn't

>

> > > > >> complete,

>

> > > > >> I know there is no reason to try more surgery. I have a

neurostimulator

>

> > > > >> for

>

> > > > >> my hip and leg pain. In the last year, the pain has spread to my

back. I

>

> > > > >> can't afford to take anymore time off work for surgery for fear of

losing

>

> > > > >> my

>

> > > > >> job. So, instead of another neurostimulator, I also have a TENS unit

for

>

> > > > >> my

>

> > > > >> back.

>

> > > > >> My problem is that I cannot find a neurologist that knows anything

about

>

> > > > >> long term care or prognosis when surgery is not an option. Last year,

I

>

> > > > >> thought I had found one, but all he did was put me through painful

and

>

> > > > >> unnecessary tests that only confirmed that I had in fact retethered.

I

>

> > > > >> had

>

> > > > >> explained to him before I went to the first appointment that I didn't

>

> > > > >> want

>

> > > > >> him to " fix " me, just tell me what I have to look forward to. He

finally

>

> > > > >> admitted he didn't know.

>

> > > > >>

>

> > > > >> I live in southeast Michigan. I have tried Henry Ford Hospital system

and

>

> > > > >> even wrote to the head of neurology at University of Michigan. These

are

>

> > > > >> two

>

> > > > >> of the best hospitals in the US, and neither one has a neurologist

that

>

> > > > >> can

>

> > > > >> help me. Has anyone had any luck finding a doctor that has experience

>

> > > > >> with

>

> > > > >> TCS?

>

> > > > >>

>

> > > > >> I'm sorry this post is so long, but I would also like to know if

anyone

>

> > > > >> has

>

> > > > >> gone on disability with this condition.

>

> > > > >>

>

> > > > >> Thanks for your time, Patsy

>

> > > > >>

>

> > > > >>

>

> > > > >>

>

> > > > >

>

> > > > >

>

> > > > >

[Guest guest]

I did not see that Diludid contains Tylenol anywhere? (hydromorphone

hydrochloride)What worries me is that you are on 3 pain killers. I assume the

Diludid is for breakthrough pain. How would the vicodin work when you are

already taking Diludid which is a much stronger pain medication? The Vicodin

would not do anything, and you can't keep switching back and forth

(withdrawal sets in)

Now I took Diludid immediate release for a year or so and personally I did not

like that it works for a very short period of time 2-3 hours, I would start

sweating if I did not take it in that time frame. I was at 12mg every 2-4 hours

at one point. The first time I didn't take it as scheduled I ended up going to

immediate care because I had sweat just dripping off me and I was

shaking/freezing with a horrible headache. I thought I caught some bug or

something!

There are better drugs out there, but you want to eliminate the Vicodin at this

point because it won't work. This may be why you are having such a hard time

with the pain.

Speak with your doctor, ask if you maybe need a dose change? And ask why you are

on the Vicodin... maybe they can take you off the Diludid and Vicodin and put

you on something else, like an immediate morphine? Also, Opana- speak with your

doctor about the medication not working all as long as the manufacturer says.

Like I said, I did the morphine 3x a day (extended) and that worked better for

me. 

Wishing you the best, and if you could please tell me about the baby stuff. Need

some guidance! 

Subject: Re: Need a dr in Nj or NYC HELP

To: tetheredspinalcord

Date: Tuesday, May 17, 2011, 9:29 AM

 

Vicodin and Diludid are both contain Tylenol, I like am wondering

why you're on both of them, as they can be toxic to your liver you have too

much. So, I would highly recommend, adjusting the meds you're on and only taking

either Vicodin or Diludid NOT both. The doctor prescribing these to you should

surely no better!

As far as your overseeing Nsg's second opinion referral that you did not like.

Have you tried any of the neurosurgeon's over at the INN at Beth Israel in

Manhatten? I've had good luck with them in the past. You might also try

Columbia-Presb as well. I agree with others to get another recommendation. Good

Luck!

>

> > > > >

>

> > > > >>

>

> > > > >>

>

> > > > >> Hi, my name is Patsy and I'm 58 years old. I didn't even know I had

>

> > > > >> tethered cord until intense pain hit my hip and leg when I was 50.

Two

>

> > > > >> years

>

> > > > >> after my first detethering, I retethered and had a second surgery.

>

> > > > >> Unfortunately, my surgeon could not get the last two " rootlets " free

>

> > > > >> without

>

> > > > >> leaving me paralized. (You know how they monitor the surgery as it

goes

>

> > > > >> along.) Of course, those last two control my bowels and bladder, so

those

>

> > > > >> problems have just increased. A couple years ago, my pain increased

also,

>

> > > > >> so

>

> > > > >> I knew I had completely retethered. Since the last surgery wasn't

>

> > > > >> complete,

>

> > > > >> I know there is no reason to try more surgery. I have a

neurostimulator

>

> > > > >> for

>

> > > > >> my hip and leg pain. In the last year, the pain has spread to my

back. I

>

> > > > >> can't afford to take anymore time off work for surgery for fear of

losing

>

> > > > >> my

>

> > > > >> job. So, instead of another neurostimulator, I also have a TENS unit

for

>

> > > > >> my

>

> > > > >> back.

>

> > > > >> My problem is that I cannot find a neurologist that knows anything

about

>

> > > > >> long term care or prognosis when surgery is not an option. Last year,

I

>

> > > > >> thought I had found one, but all he did was put me through painful

and

>

> > > > >> unnecessary tests that only confirmed that I had in fact retethered.

I

>

> > > > >> had

>

> > > > >> explained to him before I went to the first appointment that I didn't

>

> > > > >> want

>

> > > > >> him to " fix " me, just tell me what I have to look forward to. He

finally

>

> > > > >> admitted he didn't know.

>

> > > > >>

>

> > > > >> I live in southeast Michigan. I have tried Henry Ford Hospital system

and

>

> > > > >> even wrote to the head of neurology at University of Michigan. These

are

>

> > > > >> two

>

> > > > >> of the best hospitals in the US, and neither one has a neurologist

that

>

> > > > >> can

>

> > > > >> help me. Has anyone had any luck finding a doctor that has experience

>

> > > > >> with

>

> > > > >> TCS?

>

> > > > >>

>

> > > > >> I'm sorry this post is so long, but I would also like to know if

anyone

>

> > > > >> has

>

> > > > >> gone on disability with this condition.

>

> > > > >>

>

> > > > >> Thanks for your time, Patsy

>

> > > > >>

>

> > > > >>

>

> > > > >>

>

> > > > >

>

> > > > >

>

> > > > >