Re: Autoimmune problem and TC?? Has anyone heard of this??

[Guest guest]

There is a lower chance of retether with filum type tethers. But, I don't

think they really know the risk of retether. I don't think there has been a

good study that followed adults after surgery. There have been some studies

of children, but even those generally didn't follow them into adulthood.

They only followed for a few years. I think if someone did a study they

would find that the rate of retether is much higher than they thought.

Jenn

On Thu, Mar 10, 2011 at 5:57 PM, Dybowski wrote:

>

>

> I was told by Dr. Frim I had a 10% chance or retether, but I only had fatty

> filum.

>

>

>

>

>

[Guest guest]

,

Did he prescribe steroids post op and how long did you need to take at what

dose? I have trouble taking even low dose prednisone for respiratory

infections. Does he believe that doing the surgery by scope decreases the risk

of scar tissue forming and did he have good results from other adult patients he

had done.

I've have read about the nerve regenerating process as you describe and that

makes sense. Like others said maybe you have to give it a year, but that must

be agonizing in the meantime.

>

>

> Subject: Re: Autoimmune problem and TC?? Has anyone heard of this??

> To: tetheredspinalcord

> Date: Thursday, March 10, 2011, 3:42 PM

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> Yeah, that doesn't sound good, !

>

>

>

> I'm not sure about surgery either, for my son.

>

> I don't get why they usually automatically recommend it for children, but are

so

>

> much more guarded with adults. I'm really torn over it.

>

>

>

> It would be nice if surgery were an easy answer, but it leaves so many

>

> questions. It's a tough call. But if we do it, I'm certainly going to take

scar

>

> tissue prevention seriously. My son had surgery once and did well though, so

>

> maybe he will again.

>

>

>

> I've had autoimmune issues myself, and I suspect my son has a touch of IC

along

>

> with his neurogenic bladder, which may be autoimmune as well. I just hope

there

>

> is a way to restore balance to healing from a detethering surgery. I've got a

>

> few tricks up my sleeve, but we'll see!

>

>

>

> ________________________________

>

>

>

> To: tetheredspinalcord

>

> Sent: Thu, March 10, 2011 3:55:50 PM

>

> Subject: Autoimmune problem and TC?? Has anyone heard of this??

>

>

>

> Hi everyone,

>

>

>

> In searching online I found the below posted by a Dr./patient that states

>

> everyone with TC also have autoimmune problems and are doomed to retether and

>

> continue to have problems. Just when I was starting to come around to

thinking

>

> surgery is inevitable, now reading this scares the heck out of me. I hope it

is

>

> OK that I copied and pasted the below so you could read.

>

>

>

>

>

> Below posted by KGreenburg on Brain communities 6/20/2010

>

>

>

> " I have a fatty filum AND a lipoma inside the cord where it's tethered. Two

>

> neurosurgeons convinced me to have release surgery and lipoma resection six

>

> years ago, and I've been in excruciating agony ever since because the surgery

>

> created scars that are progressively compressing my right sciatic nerve root.

(I

>

> wear a fentanyl--synthetic morphine--patch in order to function but I'm in

>

> constant pain). And I will always be angry at myself because I'm a doctor but

I

>

> didn't do a careful enough job of researching the causes of a tethered cord

and

>

> the problems that almost always result from it (e.g., cord retethering and

>

> pressure on the cerebro-spinal fluid that may eventually cause Tarlov cysts

and

>

> disk tears and herniations).

>

>

>

> ALL spinal cord disorders are caused by genetic defects in the body's ability

to

>

> synthesis collagen (a key protein in connective tissue) due to fetal damage in

>

> the COL1A1 and COL1A2 genes. This means that everyone with a spinal cord

defect

>

> also has autoimmune problems, most of which cause defective fibrinolytic

>

> processes that lead to excessive internal and external scar formation. And it

is

>

> this scarring that causes cord retethering, nerve compression, and all kinds

of

>

> post-surgical traumas.

>

>

>

> So if you're an adult who can live with your spinal cord disorder, DON'T HAVE

>

> ANY KIND OF SURGERY. And if you do have surgery, make sure that your doctors

put

>

> you on pre- and post-surgical antibiotics and anti-inflammatory medications

that

>

> will reduce the inflammation in the damaged tissue (and POSSIBLY reduce their

>

> scarring) " .

>

>

>

>

[Guest guest]

Can you share the tricks you are thinking might help. Did your son retether.

Who did his surgery?

>

> Yeah, that doesn't sound good, !

>

> I'm not sure about surgery either, for my son.

> I don't get why they usually automatically recommend it for children, but are

so

> much more guarded with adults. I'm really torn over it.

>

> It would be nice if surgery were an easy answer, but it leaves so many

> questions. It's a tough call. But if we do it, I'm certainly going to take

scar

> tissue prevention seriously. My son had surgery once and did well though, so

> maybe he will again.

>

> I've had autoimmune issues myself, and I suspect my son has a touch of IC

along

> with his neurogenic bladder, which may be autoimmune as well. I just hope

there

> is a way to restore balance to healing from a detethering surgery. I've got a

> few tricks up my sleeve, but we'll see!

>

>

>

> ________________________________

>

> To: tetheredspinalcord

> Sent: Thu, March 10, 2011 3:55:50 PM

> Subject: Autoimmune problem and TC?? Has anyone heard of this??

>

>

> Hi everyone,

>

> In searching online I found the below posted by a Dr./patient that states

> everyone with TC also have autoimmune problems and are doomed to retether and

> continue to have problems. Just when I was starting to come around to

thinking

> surgery is inevitable, now reading this scares the heck out of me. I hope it

is

> OK that I copied and pasted the below so you could read.

>

>

> Below posted by KGreenburg on Brain communities 6/20/2010

>

> " I have a fatty filum AND a lipoma inside the cord where it's tethered. Two

> neurosurgeons convinced me to have release surgery and lipoma resection six

> years ago, and I've been in excruciating agony ever since because the surgery

> created scars that are progressively compressing my right sciatic nerve root.

(I

> wear a fentanyl--synthetic morphine--patch in order to function but I'm in

> constant pain). And I will always be angry at myself because I'm a doctor but

I

> didn't do a careful enough job of researching the causes of a tethered cord

and

> the problems that almost always result from it (e.g., cord retethering and

> pressure on the cerebro-spinal fluid that may eventually cause Tarlov cysts

and

> disk tears and herniations).

>

> ALL spinal cord disorders are caused by genetic defects in the body's ability

to

> synthesis collagen (a key protein in connective tissue) due to fetal damage in

> the COL1A1 and COL1A2 genes. This means that everyone with a spinal cord

defect

> also has autoimmune problems, most of which cause defective fibrinolytic

> processes that lead to excessive internal and external scar formation. And it

is

> this scarring that causes cord retethering, nerve compression, and all kinds

of

> post-surgical traumas.

>

> So if you're an adult who can live with your spinal cord disorder, DON'T HAVE

> ANY KIND OF SURGERY. And if you do have surgery, make sure that your doctors

put

> you on pre- and post-surgical antibiotics and anti-inflammatory medications

that

> will reduce the inflammation in the damaged tissue (and POSSIBLY reduce their

> scarring) " .

>

>

>

>

>

>

>

>

[Guest guest]

Wow, very interesting! I knew we made more scar tissue but had no idea why!

Thanks for sharing

Subject: Autoimmune problem and TC?? Has anyone heard of this??

To: tetheredspinalcord

Date: Thursday, March 10, 2011, 2:55 PM

 

Hi everyone,

In searching online I found the below posted by a Dr./patient that states

everyone with TC also have autoimmune problems and are doomed to retether and

continue to have problems. Just when I was starting to come around to thinking

surgery is inevitable, now reading this scares the heck out of me. I hope it is

OK that I copied and pasted the below so you could read.

Below posted by KGreenburg on Brain communities 6/20/2010

" I have a fatty filum AND a lipoma inside the cord where it's tethered. Two

neurosurgeons convinced me to have release surgery and lipoma resection six

years ago, and I've been in excruciating agony ever since because the surgery

created scars that are progressively compressing my right sciatic nerve root. (I

wear a fentanyl--synthetic morphine--patch in order to function but I'm in

constant pain). And I will always be angry at myself because I'm a doctor but I

didn't do a careful enough job of researching the causes of a tethered cord and

the problems that almost always result from it (e.g., cord retethering and

pressure on the cerebro-spinal fluid that may eventually cause Tarlov cysts and

disk tears and herniations).

ALL spinal cord disorders are caused by genetic defects in the body's ability to

synthesis collagen (a key protein in connective tissue) due to fetal damage in

the COL1A1 and COL1A2 genes. This means that everyone with a spinal cord defect

also has autoimmune problems, most of which cause defective fibrinolytic

processes that lead to excessive internal and external scar formation. And it is

this scarring that causes cord retethering, nerve compression, and all kinds of

post-surgical traumas.

So if you're an adult who can live with your spinal cord disorder, DON'T HAVE

ANY KIND OF SURGERY. And if you do have surgery, make sure that your doctors put

you on pre- and post-surgical antibiotics and anti-inflammatory medications that

will reduce the inflammation in the damaged tissue (and POSSIBLY reduce their

scarring) " .

[Guest guest]

Well, I'm not sure weather or not to thank you for this information.  I joined

this group to ease my concerns of surgery. The fact remains that I can not going

on living this way and need the surgery.  I just printed this information and

will take it to my surgeon Monday.

Subject: Autoimmune problem and TC?? Has anyone heard of this??

To: tetheredspinalcord

Date: Thursday, March 10, 2011, 3:55 PM

 

Hi everyone,

In searching online I found the below posted by a Dr./patient that states

everyone with TC also have autoimmune problems and are doomed to retether and

continue to have problems. Just when I was starting to come around to thinking

surgery is inevitable, now reading this scares the heck out of me. I hope it is

OK that I copied and pasted the below so you could read.

Below posted by KGreenburg on Brain communities 6/20/2010

" I have a fatty filum AND a lipoma inside the cord where it's tethered. Two

neurosurgeons convinced me to have release surgery and lipoma resection six

years ago, and I've been in excruciating agony ever since because the surgery

created scars that are progressively compressing my right sciatic nerve root. (I

wear a fentanyl--synthetic morphine--patch in order to function but I'm in

constant pain). And I will always be angry at myself because I'm a doctor but I

didn't do a careful enough job of researching the causes of a tethered cord and

the problems that almost always result from it (e.g., cord retethering and

pressure on the cerebro-spinal fluid that may eventually cause Tarlov cysts and

disk tears and herniations).

ALL spinal cord disorders are caused by genetic defects in the body's ability to

synthesis collagen (a key protein in connective tissue) due to fetal damage in

the COL1A1 and COL1A2 genes. This means that everyone with a spinal cord defect

also has autoimmune problems, most of which cause defective fibrinolytic

processes that lead to excessive internal and external scar formation. And it is

this scarring that causes cord retethering, nerve compression, and all kinds of

post-surgical traumas.

So if you're an adult who can live with your spinal cord disorder, DON'T HAVE

ANY KIND OF SURGERY. And if you do have surgery, make sure that your doctors put

you on pre- and post-surgical antibiotics and anti-inflammatory medications that

will reduce the inflammation in the damaged tissue (and POSSIBLY reduce their

scarring) " .

[Guest guest]

I think the reason they jump on it in kids is they are hoping to prevent the

problems we have as adults. As we grow (with the tethered cord) our cord (and

spinal nerves) suffers microtrauma. Sometimes this leads to permanent neuro

deficits BUT at the same time our body is so used to running with all that

stretched and disrupted that then when we try to " undo " it, it freaks out even

more. Plus, kids heal so much faster!

The disruption in the collagen makes so much sense! Now, I know why I have had

sooooo many broken bones! Having just had a hysterectomy and knowing how many

broken bones I've had I was already concerned about bone loss...now for sure I

am going to request a bone scan to keep an eye on things. (also have loose

joints) 

, I wonder if this had anything to do with your " knots " ?  

Subject: Re: Autoimmune problem and TC?? Has anyone heard of this??

To: tetheredspinalcord

Date: Thursday, March 10, 2011, 3:42 PM

 

Yeah, that doesn't sound good, !

I'm not sure about surgery either, for my son.

I don't get why they usually automatically recommend it for children, but are so

much more guarded with adults. I'm really torn over it.

It would be nice if surgery were an easy answer, but it leaves so many

questions. It's a tough call. But if we do it, I'm certainly going to take scar

tissue prevention seriously. My son had surgery once and did well though, so

maybe he will again.

I've had autoimmune issues myself, and I suspect my son has a touch of IC along

with his neurogenic bladder, which may be autoimmune as well. I just hope there

is a way to restore balance to healing from a detethering surgery. I've got a

few tricks up my sleeve, but we'll see!

________________________________

To: tetheredspinalcord

Sent: Thu, March 10, 2011 3:55:50 PM

Subject: Autoimmune problem and TC?? Has anyone heard of this??

Hi everyone,

In searching online I found the below posted by a Dr./patient that states

everyone with TC also have autoimmune problems and are doomed to retether and

continue to have problems. Just when I was starting to come around to thinking

surgery is inevitable, now reading this scares the heck out of me. I hope it is

OK that I copied and pasted the below so you could read.

Below posted by KGreenburg on Brain communities 6/20/2010

" I have a fatty filum AND a lipoma inside the cord where it's tethered. Two

neurosurgeons convinced me to have release surgery and lipoma resection six

years ago, and I've been in excruciating agony ever since because the surgery

created scars that are progressively compressing my right sciatic nerve root. (I

wear a fentanyl--synthetic morphine--patch in order to function but I'm in

constant pain). And I will always be angry at myself because I'm a doctor but I

didn't do a careful enough job of researching the causes of a tethered cord and

the problems that almost always result from it (e.g., cord retethering and

pressure on the cerebro-spinal fluid that may eventually cause Tarlov cysts and

disk tears and herniations).

ALL spinal cord disorders are caused by genetic defects in the body's ability to

synthesis collagen (a key protein in connective tissue) due to fetal damage in

the COL1A1 and COL1A2 genes. This means that everyone with a spinal cord defect

also has autoimmune problems, most of which cause defective fibrinolytic

processes that lead to excessive internal and external scar formation. And it is

this scarring that causes cord retethering, nerve compression, and all kinds of

post-surgical traumas.

So if you're an adult who can live with your spinal cord disorder, DON'T HAVE

ANY KIND OF SURGERY. And if you do have surgery, make sure that your doctors put

you on pre- and post-surgical antibiotics and anti-inflammatory medications that

will reduce the inflammation in the damaged tissue (and POSSIBLY reduce their

scarring) " .

[Guest guest]

,

 

I had a hysterectomy January 2010. That's when my leg started really hurting. It

took me months before I finally went to my PCP. He referred me to my

neurologists who did a nerve test on my leg (horribly painful). He then ordered

the MRI that found the tether.  Do you think the hysterectomy worsened the

tether?

Subject: Re: Autoimmune problem and TC?? Has anyone heard of this??

To: tetheredspinalcord

Date: Thursday, March 10, 2011, 3:42 PM

 

Yeah, that doesn't sound good, !

I'm not sure about surgery either, for my son.

I don't get why they usually automatically recommend it for children, but are so

much more guarded with adults. I'm really torn over it.

It would be nice if surgery were an easy answer, but it leaves so many

questions. It's a tough call. But if we do it, I'm certainly going to take scar

tissue prevention seriously. My son had surgery once and did well though, so

maybe he will again.

I've had autoimmune issues myself, and I suspect my son has a touch of IC along

with his neurogenic bladder, which may be autoimmune as well. I just hope there

is a way to restore balance to healing from a detethering surgery. I've got a

few tricks up my sleeve, but we'll see!

________________________________

To: tetheredspinalcord

Sent: Thu, March 10, 2011 3:55:50 PM

Subject: Autoimmune problem and TC?? Has anyone heard of this??

Hi everyone,

In searching online I found the below posted by a Dr./patient that states

everyone with TC also have autoimmune problems and are doomed to retether and

continue to have problems. Just when I was starting to come around to thinking

surgery is inevitable, now reading this scares the heck out of me. I hope it is

OK that I copied and pasted the below so you could read.

Below posted by KGreenburg on Brain communities 6/20/2010

" I have a fatty filum AND a lipoma inside the cord where it's tethered. Two

neurosurgeons convinced me to have release surgery and lipoma resection six

years ago, and I've been in excruciating agony ever since because the surgery

created scars that are progressively compressing my right sciatic nerve root. (I

wear a fentanyl--synthetic morphine--patch in order to function but I'm in

constant pain). And I will always be angry at myself because I'm a doctor but I

didn't do a careful enough job of researching the causes of a tethered cord and

the problems that almost always result from it (e.g., cord retethering and

pressure on the cerebro-spinal fluid that may eventually cause Tarlov cysts and

disk tears and herniations).

ALL spinal cord disorders are caused by genetic defects in the body's ability to

synthesis collagen (a key protein in connective tissue) due to fetal damage in

the COL1A1 and COL1A2 genes. This means that everyone with a spinal cord defect

also has autoimmune problems, most of which cause defective fibrinolytic

processes that lead to excessive internal and external scar formation. And it is

this scarring that causes cord retethering, nerve compression, and all kinds of

post-surgical traumas.

So if you're an adult who can live with your spinal cord disorder, DON'T HAVE

ANY KIND OF SURGERY. And if you do have surgery, make sure that your doctors put

you on pre- and post-surgical antibiotics and anti-inflammatory medications that

will reduce the inflammation in the damaged tissue (and POSSIBLY reduce their

scarring) " .

[Guest guest]

Kellie,

I am also upset about reading this as I too have just come to the conclusion

that I have to have surgery and cannot live like this much longer. I googled

and could not find information regarding TC and the genes, only found an

association with Marfans and ehler danos (not sure of spelling). Maybe what this

person wrote is dead wrong. If you get any clarification from your surgeon

would you please let us know. All the best with your surgery and recovery.

>

>

>

> Subject: Autoimmune problem and TC?? Has anyone heard of this??

> To: tetheredspinalcord

> Date: Thursday, March 10, 2011, 3:55 PM

>

>

>  

>

>

>

> Hi everyone,

>

> In searching online I found the below posted by a Dr./patient that states

everyone with TC also have autoimmune problems and are doomed to retether and

continue to have problems. Just when I was starting to come around to thinking

surgery is inevitable, now reading this scares the heck out of me. I hope it is

OK that I copied and pasted the below so you could read.

>

>

> Below posted by KGreenburg on Brain communities 6/20/2010

>

> " I have a fatty filum AND a lipoma inside the cord where it's tethered. Two

neurosurgeons convinced me to have release surgery and lipoma resection six

years ago, and I've been in excruciating agony ever since because the surgery

created scars that are progressively compressing my right sciatic nerve root. (I

wear a fentanyl--synthetic morphine--patch in order to function but I'm in

constant pain). And I will always be angry at myself because I'm a doctor but I

didn't do a careful enough job of researching the causes of a tethered cord and

the problems that almost always result from it (e.g., cord retethering and

pressure on the cerebro-spinal fluid that may eventually cause Tarlov cysts and

disk tears and herniations).

>

> ALL spinal cord disorders are caused by genetic defects in the body's ability

to synthesis collagen (a key protein in connective tissue) due to fetal damage

in the COL1A1 and COL1A2 genes. This means that everyone with a spinal cord

defect also has autoimmune problems, most of which cause defective fibrinolytic

processes that lead to excessive internal and external scar formation. And it is

this scarring that causes cord retethering, nerve compression, and all kinds of

post-surgical traumas.

>

> So if you're an adult who can live with your spinal cord disorder, DON'T HAVE

ANY KIND OF SURGERY. And if you do have surgery, make sure that your doctors put

you on pre- and post-surgical antibiotics and anti-inflammatory medications that

will reduce the inflammation in the damaged tissue (and POSSIBLY reduce their

scarring) " .

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Thank you .  I am sorry that you have to go through this as well.  I will

definitely share anything I find out Monday.

 

I guess a good thing to remember is that we are all individuals and heal

differently. 

Subject: Re: Autoimmune problem and TC?? Has anyone heard of this??

To: tetheredspinalcord

Date: Thursday, March 10, 2011, 8:52 PM

 

Kellie,

I am also upset about reading this as I too have just come to the conclusion

that I have to have surgery and cannot live like this much longer. I googled and

could not find information regarding TC and the genes, only found an association

with Marfans and ehler danos (not sure of spelling). Maybe what this person

wrote is dead wrong. If you get any clarification from your surgeon would you

please let us know. All the best with your surgery and recovery.

>

>

>

> Subject: Autoimmune problem and TC?? Has anyone heard of this??

> To: tetheredspinalcord

> Date: Thursday, March 10, 2011, 3:55 PM

>

>

>  

>

>

>

> Hi everyone,

>

> In searching online I found the below posted by a Dr./patient that states

everyone with TC also have autoimmune problems and are doomed to retether and

continue to have problems. Just when I was starting to come around to thinking

surgery is inevitable, now reading this scares the heck out of me. I hope it is

OK that I copied and pasted the below so you could read.

>

>

> Below posted by KGreenburg on Brain communities 6/20/2010

>

> " I have a fatty filum AND a lipoma inside the cord where it's tethered. Two

neurosurgeons convinced me to have release surgery and lipoma resection six

years ago, and I've been in excruciating agony ever since because the surgery

created scars that are progressively compressing my right sciatic nerve root. (I

wear a fentanyl--synthetic morphine--patch in order to function but I'm in

constant pain). And I will always be angry at myself because I'm a doctor but I

didn't do a careful enough job of researching the causes of a tethered cord and

the problems that almost always result from it (e.g., cord retethering and

pressure on the cerebro-spinal fluid that may eventually cause Tarlov cysts and

disk tears and herniations).

>

> ALL spinal cord disorders are caused by genetic defects in the body's ability

to synthesis collagen (a key protein in connective tissue) due to fetal damage

in the COL1A1 and COL1A2 genes. This means that everyone with a spinal cord

defect also has autoimmune problems, most of which cause defective fibrinolytic

processes that lead to excessive internal and external scar formation. And it is

this scarring that causes cord retethering, nerve compression, and all kinds of

post-surgical traumas.

>

> So if you're an adult who can live with your spinal cord disorder, DON'T HAVE

ANY KIND OF SURGERY. And if you do have surgery, make sure that your doctors put

you on pre- and post-surgical antibiotics and anti-inflammatory medications that

will reduce the inflammation in the damaged tissue (and POSSIBLY reduce their

scarring) " .

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Kellie, what type of hyst did you have? I had a robotic hyst and they had me

face down/butt up for hours during it. If I had been tethered, I could totally

see it irritating the cord. The way I found my TC was by a chiro adjustment that

HURT LIKE HELL (I had had thousands in my life but that one was the straw that

discovered the TC) was in a wheelchair in two weeks due to 24/7 excrutiating

nerve pain, losing feeling in the lower extrems etc. If a stretch could do that

to me then who knows? I doubt it made the tether worse but it could have

irritated the cord leading to the flare and discovery. 

Subject: Re: Autoimmune problem and TC?? Has anyone heard of this??

To: tetheredspinalcord

Date: Thursday, March 10, 2011, 3:42 PM

 

Yeah, that doesn't sound good, !

I'm not sure about surgery either, for my son.

I don't get why they usually automatically recommend it for children, but are so

much more guarded with adults. I'm really torn over it.

It would be nice if surgery were an easy answer, but it leaves so many

questions. It's a tough call. But if we do it, I'm certainly going to take scar

tissue prevention seriously. My son had surgery once and did well though, so

maybe he will again.

I've had autoimmune issues myself, and I suspect my son has a touch of IC along

with his neurogenic bladder, which may be autoimmune as well. I just hope there

is a way to restore balance to healing from a detethering surgery. I've got a

few tricks up my sleeve, but we'll see!

________________________________

To: tetheredspinalcord

Sent: Thu, March 10, 2011 3:55:50 PM

Subject: Autoimmune problem and TC?? Has anyone heard of this??

Hi everyone,

In searching online I found the below posted by a Dr./patient that states

everyone with TC also have autoimmune problems and are doomed to retether and

continue to have problems. Just when I was starting to come around to thinking

surgery is inevitable, now reading this scares the heck out of me. I hope it is

OK that I copied and pasted the below so you could read.

Below posted by KGreenburg on Brain communities 6/20/2010

" I have a fatty filum AND a lipoma inside the cord where it's tethered. Two

neurosurgeons convinced me to have release surgery and lipoma resection six

years ago, and I've been in excruciating agony ever since because the surgery

created scars that are progressively compressing my right sciatic nerve root. (I

wear a fentanyl--synthetic morphine--patch in order to function but I'm in

constant pain). And I will always be angry at myself because I'm a doctor but I

didn't do a careful enough job of researching the causes of a tethered cord and

the problems that almost always result from it (e.g., cord retethering and

pressure on the cerebro-spinal fluid that may eventually cause Tarlov cysts and

disk tears and herniations).

ALL spinal cord disorders are caused by genetic defects in the body's ability to

synthesis collagen (a key protein in connective tissue) due to fetal damage in

the COL1A1 and COL1A2 genes. This means that everyone with a spinal cord defect

also has autoimmune problems, most of which cause defective fibrinolytic

processes that lead to excessive internal and external scar formation. And it is

this scarring that causes cord retethering, nerve compression, and all kinds of

post-surgical traumas.

So if you're an adult who can live with your spinal cord disorder, DON'T HAVE

ANY KIND OF SURGERY. And if you do have surgery, make sure that your doctors put

you on pre- and post-surgical antibiotics and anti-inflammatory medications that

will reduce the inflammation in the damaged tissue (and POSSIBLY reduce their

scarring) " .

[Guest guest]

, if you are in so much pain that you cannot live much longer that way, and

you have tried all the meds etc, then take the chance and get the surgery. I've

been there.

HUGS,

Subject: Re: Autoimmune problem and TC?? Has anyone heard of this??

To: tetheredspinalcord

Date: Thursday, March 10, 2011, 7:52 PM

 

Kellie,

I am also upset about reading this as I too have just come to the conclusion

that I have to have surgery and cannot live like this much longer. I googled and

could not find information regarding TC and the genes, only found an association

with Marfans and ehler danos (not sure of spelling). Maybe what this person

wrote is dead wrong. If you get any clarification from your surgeon would you

please let us know. All the best with your surgery and recovery.

>

>

>

> Subject: Autoimmune problem and TC?? Has anyone heard of this??

> To: tetheredspinalcord

> Date: Thursday, March 10, 2011, 3:55 PM

>

>

>  

>

>

>

> Hi everyone,

>

> In searching online I found the below posted by a Dr./patient that states

everyone with TC also have autoimmune problems and are doomed to retether and

continue to have problems. Just when I was starting to come around to thinking

surgery is inevitable, now reading this scares the heck out of me. I hope it is

OK that I copied and pasted the below so you could read.

>

>

> Below posted by KGreenburg on Brain communities 6/20/2010

>

> " I have a fatty filum AND a lipoma inside the cord where it's tethered. Two

neurosurgeons convinced me to have release surgery and lipoma resection six

years ago, and I've been in excruciating agony ever since because the surgery

created scars that are progressively compressing my right sciatic nerve root. (I

wear a fentanyl--synthetic morphine--patch in order to function but I'm in

constant pain). And I will always be angry at myself because I'm a doctor but I

didn't do a careful enough job of researching the causes of a tethered cord and

the problems that almost always result from it (e.g., cord retethering and

pressure on the cerebro-spinal fluid that may eventually cause Tarlov cysts and

disk tears and herniations).

>

> ALL spinal cord disorders are caused by genetic defects in the body's ability

to synthesis collagen (a key protein in connective tissue) due to fetal damage

in the COL1A1 and COL1A2 genes. This means that everyone with a spinal cord

defect also has autoimmune problems, most of which cause defective fibrinolytic

processes that lead to excessive internal and external scar formation. And it is

this scarring that causes cord retethering, nerve compression, and all kinds of

post-surgical traumas.

>

> So if you're an adult who can live with your spinal cord disorder, DON'T HAVE

ANY KIND OF SURGERY. And if you do have surgery, make sure that your doctors put

you on pre- and post-surgical antibiotics and anti-inflammatory medications that

will reduce the inflammation in the damaged tissue (and POSSIBLY reduce their

scarring) " .

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Rick,

I don't know who Greenburg is - credible or not. I agree tho that no

reputable medical researcher would say " all " either. Research has an easier

time proving correlation. Hard time proving causation, and darn near

impossible to prove that " all " of any kind of case is one way. And not all

spinal disorders are caused by any one thing. Some are caused by trauma,

cancer, age-related degeneration, etc.

That being said, there may be a grain of truth to what he says (I admit, I

don't know who he is. If he is a MD. If he has published research in peer

reviewed journals, etc). There indeed may be a strong correlation between

people with birth defects of the spine and genetic defects and/or autoimmune

disorders. And if that were true, then having surgery would lead to the

spiral he describes (and many of us have experienced) of scar tissue -

excessive scarring - retther & nerve compression & other micro-traumas (not

to mention arachnoiditis and development of syrinx).

Like I said, I haven't researched this guy, but it is also possible that

he/his research was misquoted. he may not have used those exact words. You

know how some people like to embellish or change the language to make it

better support their point. That website may have done that to his words. I

don't know. But possible. I find it hard to imagine any MD would say that

" ALL spinal disorders... " are " x. " So, either he did say it, in which case,

he has tarnished his credibility, or someone misquoted him. Either way, I

feel like there may be some grain of truth in the statements as posted on

the forum. It would answer some questions.

Jenn

>

>

> I think KGreenburg is full of shit :-(

> No credible DOCTOR would say " ALL " .

> I had my detethering surgery in 1997 and have not retethered nor do I

> have any autoimmune problems. I had some weakness/regression back in

> 2008 so my MD ordered a new MRI to see if I was retethered. I also had a

> followup MRI in 2003 to check. MRI from 2008 showed " no remarkable

> difference " from 2003. The reason I had regression in 2008 was because I

> sat on my ass all winter and watched TV and got fat. That was kind of a

> wakeup call, I changed my diet, researched and added vitamins &

> minerals, exercised, and started PT again 3 x week.

>

> Rick

>

> stvtm said the following on 3/10/2011 1:55 PM:

>

> > In searching online I found the below posted by a Dr./patient that states

> everyone with TC also have autoimmune problems and are doomed to retether

> and continue to have problems. Just when I was starting to come around to

> thinking surgery is inevitable, now reading this scares the heck out of me.

> I hope it is OK that I copied and pasted the below so you could read.

> >

> >

> > Below posted by KGreenburg on Brain communities 6/20/2010

> >

> > " I have a fatty filum AND a lipoma inside the cord where it's tethered.

> Two neurosurgeons convinced me to have release surgery and lipoma resection

> six years ago, and I've been in excruciating agony ever since because the

> surgery created scars that are progressively compressing my right sciatic

> nerve root. (I wear a fentanyl--synthetic morphine--patch in order to

> function but I'm in constant pain). And I will always be angry at myself

> because I'm a doctor but I didn't do a careful enough job of researching the

> causes of a tethered cord and the problems that almost always result from it

> (e.g., cord retethering and pressure on the cerebro-spinal fluid that may

> eventually cause Tarlov cysts and disk tears and herniations).

> >

> > ALL spinal cord disorders are caused by genetic defects in the body's

> ability to synthesis collagen (a key protein in connective tissue) due to

> fetal damage in the COL1A1 and COL1A2 genes. This means that everyone with a

> spinal cord defect also has autoimmune problems, most of which cause

> defective fibrinolytic processes that lead to excessive internal and

> external scar formation. And it is this scarring that causes cord

> retethering, nerve compression, and all kinds of post-surgical traumas.

> >

> > So if you're an adult who can live with your spinal cord disorder, DON'T

> HAVE ANY KIND OF SURGERY. And if you do have surgery, make sure that your

> doctors put you on pre- and post-surgical antibiotics and anti-inflammatory

> medications that will reduce the inflammation in the damaged tissue (and

> POSSIBLY reduce their scarring) " .

> >

> >

> >

>

>

>

[Guest guest]

Fish oil (pharmaceutical grade) containing at least

800 mg DHA & 1200 mg EPA per day is good for anyone with health issues

of any kind.

If you have vascular, blood pressure, or heart issues then 300-500 mg

CO-Q10.

Here is my list pasted from excel worksheet, this is a table so do not

know how it will show up on your email client:

Men's 50+ MultiStart (multivitamin)

1 in AM

1 in PM

Calcium-Magnesium-Zinc (immune system) 500-250-15 mg 1 in AM

1 in PM

DHA (immune system) 500 mg

EPA (immune system) 250 mg 1 in AM

Omega 3 (immune system) 750 mg

DHA (immune system) 450 mg

EPA (immune system) 720 mg

1 in PM

Omega 3 (immune system) 1,200 mg

D3 (immune system) 5,000 iu 1 in AM

1 in PM

Biotin (hair, skin, nails) 600 mcg 1 in AM

Melatonin (sleep) 3 mg

1 in PM

Probiotics (intestine health) 14 B+ 1 in AM

1 in PM

COQ10 (heart) 100 mg 2 in AM

1 in PM

Acetyl-L Carnitine (nerves, heart) 500 mg 1 in AM

D-Ribose Powder (heart) 5 g (2 tsp) 1 in AM

Methyl B-12 (immune sys-nerves) 2,500 mcg 1 in AM

There should be a frame around DHA-EPA-Omega 3 to separate the single

gel-tab from the AM and PM dose.

Rick

Holly said the following on 3/10/2011 8:10 PM:

> My tricks include;

>

> A vitamin supplement containing

> 10,000 I.U. Vitamin A,

> 500 I.U. Vit. C,

> 400 I.U. Vit. E,

> 15 mg of Zinc and

> 100 micrograms of selenium,

> all of which are recommended to repair damaged tissue.

>

> Plus, I'd like to add a high bioavailability protein supplement, I am

interested

> in a product which uses predigested fish fillets called Seacure.

> http://www.naturedoc.com/information/scar_therapy.html

>

> There is also the bioflex lazer, which has been mentioned on this group

> http://bioflexlaser.com/patients/bioflex-home-units.php.

> I'm going to see if there are any naturapaths in our area who have one,

> and a naturapath may have suggestions to prevent excessive scar tissue as

well.

>

> My other secret weapon is this herb I know of that is really quite amazing.

> It's called Chaparral, the Native Americans used to use it for everything,

and

> I think they were onto something. It could possibly cure whatever ales you,

> including autoimmune responses.

>

> Lastly, but certainly not least, my husband is getting a traditional Japanese

> Reiki attunement, so he can give our son on going Reiki treatments.

> http://www.reiki.org/

>

> I hope I'm on the right track!

> We see our NS Monday as well.

> I'll keep you all posted!

>

> Holly

>

>

[Guest guest]

I have serious doubts about any statements made that are so absolute. " All

spinal cord disorders ... everyone with a spinal cord defect ... " Those kinds of

statements send up massive red flags for me personally.

Rarely do real scientists make those kinds of absolute declarations. There is

never proof of this kind of thing. There may be evidence that leads one to

believe it, but there is never proof. Most people with a background in science

hedge in their statements, qualify, because there is no way to say anything is

certain. Causality is never for sure.

And the statement that these genetic defects in the body's ability to synthesize

(he used synthesis, which isn't the right word) collagen causes excessive

internal and external scar formation? I don't form excessive scar tissue

externally. In fact, my scars tend to be very light and many have faded to

nothing. I had a c-section seven years ago and you can't see that scar at all

unless I point it out. Internally, I do scar, but I had surgery and it was a

massive insult to my body, so I'd expect " excessive " scarring would occur in

anyone who had that kind of invasion, not just those of us with genetic defects.

Blanket statements like these need to be looked at with great skepticism. I

happen to agree with his statement that if you can live with it, don't have

surgery. Surgery isn't the cure-all solution and can cause other issues. But

everything else he says, I don't buy. Plus, fentanyl is a synthetic narcotic,

not a synthetic morphine, which may seem like semantics, but this is a doctor

writing this and he knows the difference between a class of drug (narcotics) and

a single drug within that class (morphine) and it seems a professional wouldn't

have been so lackadaisical about it.

And all spinal cord disorders are not caused by genetics. Injury can cause

tethered spinal cord syndrome. Some of his statements are just flat out wrong,

so everything he says is suspect.

Surgery isn't inevitable. I had my first surgery not even knowing what the

surgery was called, but had I known then what I know now after all the research

I've done, I never would have had that first surgery. My second surgery wasn't

inevitable, but there was hope of regaining lost function. I will not have a

third regardless of function loss.

I suggest people with TCS who are pre-surgery and symptomatic find a good

neurologist and an excellent physiatrist and try every non-surgical possibility

to manage symptoms before even considering the surgery. I think that's good

advice for any problem that isn't life threatening.

Thanks for posting this, though. We need to see other aspects and opinions.

________________________________

To: tetheredspinalcord

Sent: Thu, March 10, 2011 3:55:50 PM

Subject: Autoimmune problem and TC?? Has anyone heard of this??

Hi everyone,

In searching online I found the below posted by a Dr./patient that states

everyone with TC also have autoimmune problems and are doomed to retether and

continue to have problems. Just when I was starting to come around to thinking

surgery is inevitable, now reading this scares the heck out of me. I hope it is

OK that I copied and pasted the below so you could read.

Below posted by KGreenburg on Brain communities 6/20/2010

" I have a fatty filum AND a lipoma inside the cord where it's tethered. Two

neurosurgeons convinced me to have release surgery and lipoma resection six

years ago, and I've been in excruciating agony ever since because the surgery

created scars that are progressively compressing my right sciatic nerve root. (I

wear a fentanyl--synthetic morphine--patch in order to function but I'm in

constant pain). And I will always be angry at myself because I'm a doctor but I

didn't do a careful enough job of researching the causes of a tethered cord and

the problems that almost always result from it (e.g., cord retethering and

pressure on the cerebro-spinal fluid that may eventually cause Tarlov cysts and

disk tears and herniations).

ALL spinal cord disorders are caused by genetic defects in the body's ability to

synthesis collagen (a key protein in connective tissue) due to fetal damage in

the COL1A1 and COL1A2 genes. This means that everyone with a spinal cord defect

also has autoimmune problems, most of which cause defective fibrinolytic

processes that lead to excessive internal and external scar formation. And it is

this scarring that causes cord retethering, nerve compression, and all kinds of

post-surgical traumas.

So if you're an adult who can live with your spinal cord disorder, DON'T HAVE

ANY KIND OF SURGERY. And if you do have surgery, make sure that your doctors put

you on pre- and post-surgical antibiotics and anti-inflammatory medications that

will reduce the inflammation in the damaged tissue (and POSSIBLY reduce their

scarring) " .