Re: Re: have you created a new self due to TCS

December 15, 2010

Hi Carol,

Mine was November 23rd... due to some bladder issues I was in the hospital until

the 29th.

I am okay... I mean bladder good, toes- now good :)Still spasms and pain, but

controlled.

I just feel different... like that tough me is gone... I even wrote an open

letter to my boss LOL (I blame Valium)

In all seriousness... I just feel like I have cracked, and all that grief is

starting... the grief of being this totally different person for almost 3 years,

who was never telling the truth (oh sure I can drive 3 hours... work 20 hours

OT?? No problem)

I have support also, but they are shocked I am not " normal " .. I mean I still

have pain. They want me off the meds.. and I am sick of explaining that the

surgeon NEVER said the pain would go away.

I was prepared, they were not.

How are you doing post op? Pain still?

Subject: Re: have you created a new self due to TCS

To: tetheredspinalcord

Date: Wednesday, December 15, 2010, 11:39 AM

Â

,

When is your surgery scheduled?

I am now 8 wks post-op. I am not sure how it has changed me yet. I have been

living in chronic pain for the last 12 years. Like you, I have been tough. I

have found that if I tell someone that my back hurts, they roll their eyes and

think of me as a complainer. So, for the most part I kept it so myself. I know

that I have been very emotional and have cried with every small milestone. (I

even found myself bragging that I can point my toes - not something most people

would be excited about.)

There will be no Christmas cards this year. However, since I have asked for

help (hard to do) I have had the opportunity to spend time with those I care

about the most. I have even had family members travel to come stay and cook for

me during my recovery. It is not even Christmas yet and I have already had the

best holiday season ever. My divorced parents even came together to help.

Right now, I am so appreciative of all the small things in life and am truly

amazed how much suport I have received. I hope I can pay it forward in the

future. Nothing should be taken for granted.

~Carol

>

> I have been thinking.

> This disease turned me into someone else. Someone tough. I appreciate it. But

I lost that wonder and love for things. Like Christmas cards, I haven't sent any

in 3 years. I have no joke sent 146 this week, because it's special and people

deserve one, to be told they are remembered and loved.

> I was so tough. No one ever knew I was in pain-EVER. Even my close friends

didn't know why I cancelled on them all the time, I was just " busy " .

> I feel like I lost the me who told people how much I care about them, how much

I appreciate the small things they do.

> After this surgery I'm gonna be the real me.

> I even wrote my boss a long email telling him how I feel about my job, and how

sad I am I was not able to contribute as much because of my pain.

> Have you been changed?

>

December 16, 2010

I think all of us can answer that yes, the experience with TCS changed us. I've

had chronic pain all my life. Migraines, pains in my legs that were chalked up

to growing pains, then the pain that comes with TCS, all of that pain shaped me

into who I am today, which is a very tough woman who can take a lot of pain

without wincing. I like that woman a lot. As a child, I had an issue with

bladder control because of this condition, though I didn't know at the time

there was a reason for it. The embarrassment from wetting my pants by surprise

changed me. I limped and was deformed from the tumor. That changed me too. Both

of those experiences taught me to be more compassionate and to not judge people

simply because they're different or have physical issues. I'm not unhappy to

have learned the lessons I did.

I have, at times, not been able to participate fully in life, due to pain or

other complications of TCS. I adapted, found a way to be part of those things

most important to me, and in some cases, I've adjusted my expectations. Those

times when I couldn't stand at the stove to cook, I had someone else do it or I

bought pre-cooked meals. In some cases, I suffered the consequences for my

choices, like when I danced at a wedding knowing full well I'd be in pain for

weeks. I figure even healthy, fully able bodied people have to make choices. Why

do I think I should escape that just because I have TCS?

Every experience we have makes us who we are, collectively. Do I want more

complications? No. Do I want pain and weakness? No. But if they come to me, I'll

learn to adapt my life to include them. It does no good to fight against

reality. I honestly don't know who I'd be without TCS, but I really like me the

way I am and that makes me glad for everything I've lived through.

________________________________

To: tetheredspinalcord

Sent: Wed, December 15, 2010 7:11:39 PM

Subject: Re: have you created a new self due to TCS

Hi ,

The surgery/recovery has indeed knocked me down. It has been much more

difficult that I had antcipated. I have had some pretty intense moments and I

would say that I am more grounded than I was before. I have had to surrender

myself and ask for help opposed to being super mom don't worry about me. I have

been forced to be more honest with myself and my limitations. Something I

couldn't really admit to myself before.

Yes, I still am experiencing quite a bit of pain. Which is frustrating. I was

hoping for more relief by now. The pain is different than before surgery.

Before, I had sciatic pain that radiated all the down both my legs and into the

arches of my feet. Now, I feel sciatic pain just in my hips and back of my

thighs. However, I remain optimistic as my surgerical sight is still swollen.

I am hoping that when that swelling subsides I will have relief. Furthermore, I

have started pt and have also worked with a pilates instructer. I am gaining my

strength back which too helps. I find that if I can keep my pelvis in a neutral

position, it decreases pressure on the nerves. This is difficult for me to do

since my pelvis was tilted in a fixed position due to the tethered cord and is

now " settling " into its new position. I am managing pain with otc meds and

uhum.. a glass or two of wine. I didn't expect the pain to go away right away,

but did not expect the numbness caused by the suergy. I am hoping to gain

sensation back as the swelling subsides.

I don't think it is possible to go through an experience like this and not come

out on the other side a different person.

How are you managing? Have you returned to work?

I hope that you too experience less pain as you heal.-Carol

December 16, 2010

Hang in their gals -- your pain will be worse for awhile but that does not mean

it will not improve -- you need to give yourself at least a year to recover if

not more -- so their is still hope! I am telling myself the same thing after my

recent spinal fusion -- in July -- still much worse than pre-surgery but my

experience healing from spinal surgery (TC) keeps me optimistic that things will

improve as that took over a year for me to say I was better post-surgery. In my

experience it can also be a roller coaster healing -- don't seem to go up in a

straight line, but gradually you go up more than you come down.

Carol -- great to hear you are doing pilates based exercises -- that has been my

life-saver for increasing my strength without injuring myself pre and post

surgery. My physio uses the reformer machine for pilates in her practice and

also has group reformer classes -- some for rehab and others for general fitness

(you know which class I am in!). I am having a hard time this time round lying

on my back so bring a pillow to class to lay down on the reformer with.

Dee

To: tetheredspinalcord

From: cbrimhall@...

Date: Thu, 16 Dec 2010 00:11:39 +0000

Subject: Re: have you created a new self due to TCS

Hi ,

The surgery/recovery has indeed knocked me down. It has been much more difficult

that I had antcipated. I have had some pretty intense moments and I would say

that I am more grounded than I was before. I have had to surrender myself and

ask for help opposed to being super mom don't worry about me. I have been forced

to be more honest with myself and my limitations. Something I couldn't really

admit to myself before.

Yes, I still am experiencing quite a bit of pain. Which is frustrating. I was

hoping for more relief by now. The pain is different than before surgery.

Before, I had sciatic pain that radiated all the down both my legs and into the

arches of my feet. Now, I feel sciatic pain just in my hips and back of my

thighs. However, I remain optimistic as my surgerical sight is still swollen. I

am hoping that when that swelling subsides I will have relief. Furthermore, I

have started pt and have also worked with a pilates instructer. I am gaining my

strength back which too helps. I find that if I can keep my pelvis in a neutral

position, it decreases pressure on the nerves. This is difficult for me to do

since my pelvis was tilted in a fixed position due to the tethered cord and is

now " settling " into its new position. I am managing pain with otc meds and

uhum.. a glass or two of wine. I didn't expect the pain to go away right away,

but did not expect the numbness caused by the suergy. I am hoping to gain

sensation back as the swelling subsides.

I don't think it is possible to go through an experience like this and not come

out on the other side a different person.

How are you managing? Have you returned to work?

I hope that you too experience less pain as you heal.-Carol

>

> >

>

> > I have been thinking.

>

> > This disease turned me into someone else. Someone tough. I appreciate it.

But I lost that wonder and love for things. Like Christmas cards, I haven't sent

any in 3 years. I have no joke sent 146 this week, because it's special and

people deserve one, to be told they are remembered and loved.

>

> > I was so tough. No one ever knew I was in pain-EVER. Even my close friends

didn't know why I cancelled on them all the time, I was just " busy " .

>

> > I feel like I lost the me who told people how much I care about them, how

much I appreciate the small things they do.

>

> > After this surgery I'm gonna be the real me.

>

> > I even wrote my boss a long email telling him how I feel about my job, and

how sad I am I was not able to contribute as much because of my pain.

>

> > Have you been changed?

>

> >

>

December 16, 2010

There's a really interesting article in the Pain Pathways magazine (full

disclosure: my doctor is editor) - but it describes a pain boot camp at a major

hospital. Patients spend 8 hours a day with a full spectrum of doctors,

specialists, and others to help them learn to control their pain with medical

and non-medical ways. They also receive intense counseling. At the end of the 4

weeks each person meets with the entire team and they explore together where

they were upon entering the " camp " and where they are now - where they want to

go, etc.

The article discusses how the first hurdle is the 8 hour days (this blew me away

to be honest, for many reasons - 8 hours for people with chronic pain???) but

then goes into detail about each aspect of the boot camp. The whole of the camp

sounds great - but the 8 hour days, 5 days a week would put it out of my reach.

Keep thinking it's a great idea but needs a bit of tweaking for most of us.

I bring this up because of the message below - so many of us live what I call

" life lies " . We look like others (of so we think sometimes) so feel we have to

live up to how we feel we're viewed. We do it for valid reasons at times -

people are still in the dark about chronic pain and it does carry a stigma.

However, we need to realize and use as a mantra, that's their problem, not ours.

This is our one and only life and if we spend it trying to convince those that

don't matter to our well-being or spend time caring what others think, we are so

wasting our precious time here

Kathy

Re: have you created a new self due to TCS

Carol,

Can I ask who did your surgery? Was it open or endoscope?

I hope you are out of pain soon. I am still sitting on the fence about

surgery, so I am really interested in reading what to expect post op. All the

best.

> >

> > >

> >

> > > I have been thinking.

> >

> > > This disease turned me into someone else. Someone tough. I appreciate

it. But I lost that wonder and love for things. Like Christmas cards, I haven't

sent any in 3 years. I have no joke sent 146 this week, because it's special and

people deserve one, to be told they are remembered and loved.

> >

> > > I was so tough. No one ever knew I was in pain-EVER. Even my close

friends didn't know why I cancelled on them all the time, I was just " busy " .

> >

> > > I feel like I lost the me who told people how much I care about them,

how much I appreciate the small things they do.

> >

> > > After this surgery I'm gonna be the real me.

> >

> > > I even wrote my boss a long email telling him how I feel about my job,

and how sad I am I was not able to contribute as much because of my pain.

> >

> > > Have you been changed?

> >

> > >

> >

December 16, 2010

8 hours, 5 days??? OMG, no way lol.

Subject: Re: Re: have you created a new self due to TCS

To: tetheredspinalcord

Date: Wednesday, December 15, 2010, 8:27 PM