RE: Progression

[Guest guest]

- my progression was very slow -- have had back and leg pain from age 18

- 32, kept a very active lifestyle though. At age 32 had a horrible flare-up of

pain and sciatica -- after that I would say I had very gradual decline of my

left leg -- eg weakness/loss of ankle dorsiflexion, no ankle jerk, also able to

do less and less with more pain. The nerve damage in my left leg was so gradual

I didn't realize how bad it was til it was likely too late to reverse the damage

with surgery.

I do know others in the group have had more rapid progression of symtoms, and in

my opinion this is when surgery is really worth looking into. The longer nerve

damage goes on, the less likely you will regain that function with surgery. I

wish I'd done surgery when I was first diagnosed as I think my left leg might

have had a better chance.

Dee

To: tetheredspinalcord

From: lilacs007@...

Date: Wed, 13 Oct 2010 10:14:16 -0700

Subject: Progression

Hi,

In my research I have found that rapid progression of tethered cord symptoms is

rare, but possible.

Can you guys give me an idea of how it went for you?

For me it was pain for 2 1/2 years, and then numbness in both legs, toes, and

arms.But I feel like since that started I am having more and more issues... like

if my foot is 1/2 on carpet, 1/2 on hardwood, or I stand on my heel I get a

horrible shooting pain- that is a symptom that started out of the blue 6 weeks

after the foot stuff.

Also how do you feel about nerve pain drugs? I am on Neurontin, but someone

brought up a good point- if the Neurontin is working for you and you don't have

the pain/symptoms.. how do you know if they are getting worse

As always, thank you for your opinions on this Hope you are all having a

great day!

[Guest guest]

,

I was a year old when I had my first surgery to debulk my lipomeningocele.

From this surgery to age 15, I had a normal very active life. The progression

of symptoms that lead to surgery at age 15 were very slow. I lost sensation

from the knees down. When I started getting leg pains that felt like charlie

horses, my parents took my to the NS.

Again I lived a normal active life from 15 to age 27.

At 27, I started getting intense back pains. These came on over a period if

about 6 months. This lead to the third surgery. From age 27 to 34 (2009), I

had a fairly normal life.

In Sept09, I still had no sensation from the knees down (this had been the

norm for about the past 20 years) and leg pains that felt like charlie horses.

In Oct09, I started going down hill rapidly. I developed lower back pain, a

neurogenic bladder, and started seeing an increase in the leg pains. By mid

June10, I was almost completely bed ridden. My leg pains increased by several

time, I couldn't sit because it felt like I was sitting on a softball, the backs

of my legs burned all the time and the bottom of my feet hurt so bad I could

barely walk (despite not having feelings in my feet).

I could do some things around the house, but then would have to lay back down.

I figured I had lost about 75%-80% of my livelihood. So all of my symptoms

developed in about 9 months.

I had surgery in late June10, and now am feeling wonderful. I still have leg

pains, no sensation from the knees down, some burning sensation in the back of

my legs and still have a neurogenic bladder, but overall am completely satisfied

with the outcome. I feel like I want to get out and do things now. So the

first time, progression was pretty slow. The second and third times, it was

rapid (at least in my book).

I have been on (individually or in combination) Neurontin, Lyrica, Baclofen

since late 2000, and they did help curb the pain. It didn't eliminate the pain,

it just made the pain bearable. I had no doubts when the pain got worse. With

or without any type of drug, I always knew what my baseline pain levels were

(pain levels were always a 3 or 4). When I seen an increase in the pain level

(went up to 6 and 7), with no change in the drug levels, there was no doubts

things were worse.

Chip

________________________________

To: Tetheredspinalcord <tetheredspinalcord >

Sent: Wed, October 13, 2010 1:14:16 PM

Subject: Progression

Hi,

In my research I have found that rapid progression of tethered cord symptoms is

rare, but possible.

Can you guys give me an idea of how it went for you?

For me it was pain for 2 1/2 years, and then numbness in both legs, toes, and

arms.But I feel like since that started I am having more and more issues... like

if my foot is 1/2 on carpet, 1/2 on hardwood, or I stand on my heel I get a

horrible shooting pain- that is a symptom that started out of the blue 6 weeks

after the foot stuff.

Also how do you feel about nerve pain drugs? I am on Neurontin, but someone

brought up a good point- if the Neurontin is working for you and you don't have

the pain/symptoms.. how do you know if they are getting worse

As always, thank you for your opinions on this Hope you are all having a

great day!

[Guest guest]

I had some symptoms (which I had no idea were TC) and lived a normal life until

age 36. Had a chiro adjustment (had been seeing a chiro since age 5) which was

excrutiatingly painful and was in a wheelchair within two weeks due to pain so

severe I was unable to walk. Took...2-3 months to get a dx as I was mis dx'd

several times but had surgery and went back to a fairly normal life (until my

next injury). 

________________________________

To: Tetheredspinalcord <tetheredspinalcord >

Sent: Wed, October 13, 2010 12:14:16 PM

Subject: Progression

 

Hi,

In my research I have found that rapid progression of tethered cord symptoms is

rare, but possible.

Can you guys give me an idea of how it went for you?

For me it was pain for 2 1/2 years, and then numbness in both legs, toes, and

arms.But I feel like since that started I am having more and more issues... like

if my foot is 1/2 on carpet, 1/2 on hardwood, or I stand on my heel I get a

horrible shooting pain- that is a symptom that started out of the blue 6 weeks

after the foot stuff.

Also how do you feel about nerve pain drugs? I am on Neurontin, but someone

brought up a good point- if the Neurontin is working for you and you don't have

the pain/symptoms.. how do you know if they are getting worse

As always, thank you for your opinions on this Hope you are all having a

great day!

[Guest guest]

Hello ,

                    I am now 51 and detethered in 2007. Up to

the age of 42 I

lead a nearly normal life apart from toilet issues which I couldn't fully

understand but managed to muddle through. Stiffness of leg muscles and pain in

back followed with increasing numbness in feet and legs and bottom - I think

very typical symptoms of TC. Since my cord release and two replacement hips life

has been a real roller coaster of mourning the loss of my beloved sporting

activities and bouts of serious depression. My pain levels vary significantly

but I have found out one really important issue recently regarding pain and

depression - the more you are depressed the pain is worse and the worse the

pain

the more depressed you get!! I think pain and depression are very closely linked

and neuropathic pain from TC is very very closely linked to depression.

                    I now have tried Nuerotin, Baclofen and

Lyrica and still on

Lyrica. The biggest benefit however I have experienced is from addressing my

depression which in turn has helped my pain significantly. Before when I felt a

worsening of pain/symptoms I got very down and depressed. Now I ignore the

changes to the best of my ability and my positive mood helps flatten the peaks

in pain. I do think Lyrica is a very powerful and in some ways a dangerous drug.

However I think it has a double benefit in helping mood/depression ( more

effective than Prozac in my opinion) as well as some assistance in masking

neuropathic pain. Whilst I have my pain under control I am still mourning the

loss of parts of my former life that we all experience. We will see if I can

continue to be positive but what choice have I/we got because we are incurable?

My advice if it helps is to treat your pain and depression as one of the same

and work on improving both as one to get the maximum relief/improvement,

All the best,

Barry

________________________________

To: Tetheredspinalcord <tetheredspinalcord >

Sent: Wednesday, 13 October, 2010 18:14:16

Subject: Progression

 

Hi,

In my research I have found that rapid progression of tethered cord symptoms is

rare, but possible.

Can you guys give me an idea of how it went for you?

For me it was pain for 2 1/2 years, and then numbness in both legs, toes, and

arms.But I feel like since that started I am having more and more issues... like

if my foot is 1/2 on carpet, 1/2 on hardwood, or I stand on my heel I get a

horrible shooting pain- that is a symptom that started out of the blue 6 weeks

after the foot stuff.

Also how do you feel about nerve pain drugs? I am on Neurontin, but someone

brought up a good point- if the Neurontin is working for you and you don't have

the pain/symptoms.. how do you know if they are getting worse

As always, thank you for your opinions on this Hope you are all having a

great day!

[Guest guest]

Hi Dee

I had the same type of deterioration as you and at about the same age, and

I had/have a thickened filum tether with adhesions, with diastematomyelia

at S2 (which I didn't know about until about 3 years post-surgery!!). I

guess with a similar tether the symptoms might also be similar, but of

course they can vary in severity with each individual case.

I also wish I had had surgery earlier, but on the National Health Service

in the UK, where you have to wait for ages unless you want to go private

and pay a huge amount, I had to wait 9 months for surgery and that was when

I saw a LOT of deterioration and disability and increasingly intractable

and horrendous pain.

I am glad I did the surgery as it gave me my life back, although, as I said

before, it is not the life I had before the deterioration. I think it is

better and yet different which is also good in many ways

Regards

Nina

www.btinternet.com/~tetheredcordresources

--

>

> - my progression was very slow -- have had back and leg pain from

> age 18 - 32, kept a very active lifestyle though. At age 32 had a

> horrible flare-up of pain and sciatica -- after that I would say I had

> very gradual decline of my left leg -- eg weakness/loss of ankle

> dorsiflexion, no ankle jerk, also able to do less and less with more

> pain. The nerve damage in my left leg was so gradual I didn't realize

> how bad it was til it was likely too late to reverse the damage with

> surgery.

> I do know others in the group have had more rapid progression of symtoms,

> and in my opinion this is when surgery is really worth looking into. The

> longer nerve damage goes on, the less likely you will regain that

> function with surgery. I wish I'd done surgery when I was first

> diagnosed as I think my left leg might have had a better chance.

> Dee

>

>

>

> To: tetheredspinalcord

> From: lilacs007@...

> Date: Wed, 13 Oct 2010 10:14:16 -0700

> Subject: Progression

>

>

>

>

>

>

> Hi,

> In my research I have found that rapid progression of tethered cord

> symptoms is rare, but possible. Can you guys give me an idea of how it

> went for you?

> For me it was pain for 2 1/2 years, and then numbness in both legs, toes,

> and arms.But I feel like since that started I am having more and more

> issues... like if my foot is 1/2 on carpet, 1/2 on hardwood, or I stand

> on my heel I get a horrible shooting pain- that is a symptom that started

> out of the blue 6 weeks after the foot stuff. Also how do you feel about

> nerve pain drugs? I am on Neurontin, but someone brought up a good point-

> if the Neurontin is working for you and you don't have the

> pain/symptoms.. how do you know if they are getting worse As always,

> thank you for your opinions on this Hope you are all having a great

> day!

>

>