RE: Retethered

[Guest guest]

,

     I'm sorry to hear about your pain.  I have been in the same type of

situation.

     There are many of us that have had multiple detether surgeries.  So it

is possible to retether.  My advice is make an appointment with a different nsg

(It never hurts to get a second or third opinion).  One that has experience

with tethered cords.  Try and find one that has experience with adult tethered

cords, but many times you will have to go to a pediatric nsg as they are more

likely to have experience with tethered cords.

     I hope this helps.  I am sure others will post with more advise as

well.

Best,

Chip

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Sunday, April 10, 2011 8:46 AM

Subject: Re: Retethered

 

I was tethered back in 2009. I had surgery and seemed to be doing well for

awhile. About six months ago I started having alot of pain again, so my MD

ordered another MRI and set me up with the NS again. MRI report which I don't

have a copy of right now stated that I have a possible tethered cord, however

when I went back to the NS he said it was impossible to be tethered again. I am

still having alot of pain and have also experienced severe headaches while

having bowel movements. Just wondering if anyone has any advice as to what I

should do next. Sometimes the pain is so bad it is hard to walk, but I feel like

the doctors just think that I am overweight and crazy. I am a nurse so I am on

my feet alot and after my shift I feel like I should be crawling in bed with my

patients due to the pain. The NS told me I just have a bad back and basically I

just need to deal with it. I am very frustrated and just looking for advice.

Sent from my iPhone

[Guest guest]

Ditto to what Chip said plus if you would like to share where you live,

others on the forum may be able to suggest NSGs who are close by. So so

sorry for your pain. Randee

In a message dated 4/10/2011 8:02:21 A.M. Central Daylight Time,

eatonchip@... writes:

,

I'm sorry to hear about your pain. I have been in the same type of

situation.

There are many of us that have had multiple detether surgeries. So it is

possible to retether. My advice is make an appointment with a different

nsg (It never hurts to get a second or third opinion). One that has

experience with tethered cords. Try and find one that has experience with

adult

tethered cords, but many times you will have to go to a pediatric nsg as they

are more likely to have experience with tethered cords.

I hope this helps. I am sure others will post with more advise as well.

Best,

Chip

________________________________

From: Wolfe <_wenrn68@..._ (mailto:wenrn68@...) >

To: " _tetheredspinalcord _

(mailto:tetheredspinalcord ) "

<_tetheredspinalcord _

(mailto:tetheredspinalcord ) >

Sent: Sunday, April 10, 2011 8:46 AM

Subject: Re: Retethered

I was tethered back in 2009. I had surgery and seemed to be doing well for

awhile. About six months ago I started having alot of pain again, so my MD

ordered another MRI and set me up with the NS again. MRI report which I

don't have a copy of right now stated that I have a possible tethered cord,

however when I went back to the NS he said it was impossible to be tethered

again. I am still having alot of pain and have also experienced severe

headaches while having bowel movements. Just wondering if anyone has any advice

as to what I should do next. Sometimes the pain is so bad it is hard to

walk, but I feel like the doctors just think that I am overweight and crazy. I

am a nurse so I am on my feet alot and after my shift I feel like I should

be crawling in bed with my patients due to the pain. The NS told me I just

have a bad back and basically I just need to deal with it. I am very

frustrated and just looking for advice.

Sent from my iPhone

[Non-text portions of this message have been removed]

[Guest guest]

I keep a list of TSC doctors that members have dealt with. Feel free to access

here:

https://spreadsheets.google.com/ccc?key=0AvcMIYlwXrSAdGRRQ2ExdFF3S0dsdWJkZXpjUi0\

5dkE & hl=en & authkey=CMaj56gP#gid=0

PS. If anyone has any MDs they want to add go right ahead.

Subject: Re: Retethered

To: tetheredspinalcord

Date: Sunday, April 10, 2011, 9:09 AM

 

Ditto to what Chip said plus if you would like to share where you live,

others on the forum may be able to suggest NSGs who are close by. So so

sorry for your pain. Randee

In a message dated 4/10/2011 8:02:21 A.M. Central Daylight Time,

eatonchip@... writes:

,

I'm sorry to hear about your pain. I have been in the same type of

situation.

There are many of us that have had multiple detether surgeries. So it is

possible to retether. My advice is make an appointment with a different

nsg (It never hurts to get a second or third opinion). One that has

experience with tethered cords. Try and find one that has experience with

adult

tethered cords, but many times you will have to go to a pediatric nsg as they

are more likely to have experience with tethered cords.

I hope this helps. I am sure others will post with more advise as well.

Best,

Chip

________________________________

From: Wolfe <_wenrn68@..._ (mailto:wenrn68@...) >

To: " _tetheredspinalcord _

(mailto:tetheredspinalcord ) "

<_tetheredspinalcord _

(mailto:tetheredspinalcord ) >

Sent: Sunday, April 10, 2011 8:46 AM

Subject: Re: Retethered

I was tethered back in 2009. I had surgery and seemed to be doing well for

awhile. About six months ago I started having alot of pain again, so my MD

ordered another MRI and set me up with the NS again. MRI report which I

don't have a copy of right now stated that I have a possible tethered cord,

however when I went back to the NS he said it was impossible to be tethered

again. I am still having alot of pain and have also experienced severe

headaches while having bowel movements. Just wondering if anyone has any advice

as to what I should do next. Sometimes the pain is so bad it is hard to

walk, but I feel like the doctors just think that I am overweight and crazy. I

am a nurse so I am on my feet alot and after my shift I feel like I should

be crawling in bed with my patients due to the pain. The NS told me I just

have a bad back and basically I just need to deal with it. I am very

frustrated and just looking for advice.

Sent from my iPhone

[Non-text portions of this message have been removed]

[Guest guest]

After my first untethering, I went back to my NSG and said I had gone back

to my pre-op status and maybe a little worse. His exact words were " it is

medically impossible to retether that quickly " and then discharged me from

his service. About 2 months later, I finally went to a pedi NSG. He said he

couldn't tell from the MRI bc I had already beed untethered, but based on my

symptoms, I had retethered. I put off the surgery for 1 1/2 years (I really

didn't want to do it again). When he did the surgery, he said it was waaay

worse than he expected - like someone poured bottles of super glue in my

back. He was also able to remove the bovine pericardium graft the first had

put in (which caused the excessive scar tissue development.

My advice? Run, walk or hobble to a pedi NSG that specializes in NTDs as

fast as you can (the MD that did my second and third surgeries was chief of

pedi nsg and specialized in NTD and tumor removal.

Jenn

>

>

> I was tethered back in 2009. I had surgery and seemed to be doing well for

> awhile. About six months ago I started having alot of pain again, so my MD

> ordered another MRI and set me up with the NS again. MRI report which I

> don't have a copy of right now stated that I have a possible tethered cord,

> however when I went back to the NS he said it was impossible to be tethered

> again. I am still having alot of pain and have also experienced severe

> headaches while having bowel movements. Just wondering if anyone has any

> advice as to what I should do next. Sometimes the pain is so bad it is hard

> to walk, but I feel like the doctors just think that I am overweight and

> crazy. I am a nurse so I am on my feet alot and after my shift I feel like I

> should be crawling in bed with my patients due to the pain. The NS told me I

> just have a bad back and basically I just need to deal with it. I am very

> frustrated and just looking for advice.

>

> Sent from my iPhone

>

>

[Guest guest]

I agree with Katherie, I had same symptoms and was retethered.

To: tetheredspinalcord

From: livedream_believe@...

Date: Sun, 10 Apr 2011 17:42:29 -0700

Subject: Re: Retethered

Find a new neuro, it is possible to be retethered.

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Sun, April 10, 2011 7:46:19 AM

Subject: Retethered

I was tethered back in 2009. I had surgery and seemed to be doing well for

awhile. About six months ago I started having alot of pain again, so my MD

ordered another MRI and set me up with the NS again. MRI report which I don't

have a copy of right now stated that I have a possible tethered cord, however

when I went back to the NS he said it was impossible to be tethered again. I am

still having alot of pain and have also experienced severe headaches while

having bowel movements. Just wondering if anyone has any advice as to what I

should do next. Sometimes the pain is so bad it is hard to walk, but I feel like

the doctors just think that I am overweight and crazy. I am a nurse so I am on

my feet alot and after my shift I feel like I should be crawling in bed with my

patients due to the pain. The NS told me I just have a bad back and basically I

just need to deal with it. I am very frustrated and just looking for advice.

Sent from my iPhone

[Guest guest]

I totally agree, they specialize in TCS and do this surgery all the time. I

would never see an adult neuro for my condition.

> To: tetheredspinalcord

> From: jlbobin@...

> Date: Sun, 10 Apr 2011 17:55:57 -0400

> Subject: Re: Retethered

>

> After my first untethering, I went back to my NSG and said I had gone back

> to my pre-op status and maybe a little worse. His exact words were " it is

> medically impossible to retether that quickly " and then discharged me from

> his service. About 2 months later, I finally went to a pedi NSG. He said he

> couldn't tell from the MRI bc I had already beed untethered, but based on my

> symptoms, I had retethered. I put off the surgery for 1 1/2 years (I really

> didn't want to do it again). When he did the surgery, he said it was waaay

> worse than he expected - like someone poured bottles of super glue in my

> back. He was also able to remove the bovine pericardium graft the first had

> put in (which caused the excessive scar tissue development.

>

> My advice? Run, walk or hobble to a pedi NSG that specializes in NTDs as

> fast as you can (the MD that did my second and third surgeries was chief of

> pedi nsg and specialized in NTD and tumor removal.

>

> Jenn

>

>

>

> >

> >

> > I was tethered back in 2009. I had surgery and seemed to be doing well for

> > awhile. About six months ago I started having alot of pain again, so my MD

> > ordered another MRI and set me up with the NS again. MRI report which I

> > don't have a copy of right now stated that I have a possible tethered cord,

> > however when I went back to the NS he said it was impossible to be tethered

> > again. I am still having alot of pain and have also experienced severe

> > headaches while having bowel movements. Just wondering if anyone has any

> > advice as to what I should do next. Sometimes the pain is so bad it is hard

> > to walk, but I feel like the doctors just think that I am overweight and

> > crazy. I am a nurse so I am on my feet alot and after my shift I feel like I

> > should be crawling in bed with my patients due to the pain. The NS told me I

> > just have a bad back and basically I just need to deal with it. I am very

> > frustrated and just looking for advice.

> >

> > Sent from my iPhone

> >

> >

>

>

>