tethered on both sides

[Guest guest]

Unfortunately for others, we aren't the only ones using these pumps and implants

or being guinea pigs. Cancer patients have them implanted. There are many

cancer patients at my pain clinic - I'll take what I have over cancer any day of

the week. If the Gods determine that what I have is enough and don't pile on

any other debilitating diseases, I'll be fairly happy living cancer-free.

There are also MS patients along with people who have spinal cord injuries. Add

to this diabetics who suffer from neuropathic pain along with other diseases

that cause pain. Truly, we aren't the only customers or people who get to the

point where they will pretty much try anything that looks like it might improve

their lives. It stinks that we are on that list - but not the only ones. (And

yes, I do get sick of it though.)

None of the above is to minimize what we go through daily, hourly, or

minute-by-minute. Believe me - I'm living it and have broken down more than

once over the past few months because of the pain and the limitations my body is

putting on me. I never used to cry over this, I was fairly good at accepting it

for quite a while (once the initial shock of this is how it will be was over) -

it's not depression; been there done that.

This is more of, I had a taste of life with the pump which helped my back pain

enough and my body was not deteriorating fast which allowed me to return to

work, play with my grandchildren, travel with some degree of comfort, enjoy

being parents of grown children and the freedom that allowed with my husband -

now it's all fading from me quickly and I hate it more than anything.

Life is good though and I do mean it when I say that if this is the only cross I

have to bear, then I will take it - we all have them, and my crying times are

few and far between. However, when I do think about the limitations and what I

am going to have to either do to have some degree of my life back (the surgery)

or have to give up to have a personal life back and not have surgery; I'm not

the happiest person to be around.

Right now, for me, it's the decision that is killing me - have the radical

surgery to shorten the spine to make room for the spinal cord to move or to

decide enough is enough - five untetherings is a good try and it's time to live

life around my condition. Tough decision for me because I absolutely love my

job, loved having my life back to the degree I did, and getting worse - worse

than ever before, sucks to be honest.

Wow - that was so not inspirational was it? ;-)

Kathy

Re: Re: tethered on both sides

Wow, I dodged a bullet on this one. My pain clinic was pushing mightily on

this and I was uncomfortable with the fact Medtronics is the only game in

town. They are stalling with the mistake they made with my bladder stim

(hooked up only one side, the one that did not work during the test, and I

am now a giant Pissy Polly Doll)

Doesn't anyone else worry about the fact there is only one company out there

and we are both their guinea pigs and only customers. They can do anything

they want and what are we going to do? Take our business elsewhere?

M.

On Sat, Mar 27, 2010 at 6:47 PM, hollygolightly1916

wrote:

> Hello Kathy -

>

> Funny as I've never heard of this happening, but I'm sure it has more than

> often than we all know. I'm not familiar with any electrical studies other

> than EEG. Nonetheless, I'd be curious to find out what more you're able to

> figure out about this once you know anything.

>

> How have you been otherwise? Now that I finally have insurance again it

> will be nice to follow up with neurologist & neurosurgeon, pain management

> doctor .. this past year I've been forced to forego all of that. My nerve

> pain is geting worse .. I've had frustrating experience of my primary not

> wanting to prescribe pain medication to treat my chronic pain & neuropathy -

> I've been treated like I'm an addict and well it's been terrible. There's

> nothing worse, than being in pain and not being able to treat it. Ugh. I'm

> glad to be able to return to the pain management specialist I've seen

> before.

>

> Can you email me off list with more informaion about the Medtronic pain

> pump study .. b/c I think I'm at that point.

>

> This year (2010) thus far has started at marathon pace .. I'd just like for

> it to slow down enough for me to catch my breath & find rest. Mom is not in

> the hospital anymore, she was at MGH for a month from Jan 19th-Feb 17th --

> and will most likely return in a few weeks o begin prep for Bone Marrow

> Transplant -- she has her follow up appointment with her Oncologist at MGH

> on Monday. So very glad it's spring! ox E

>

>

> >

> > Hello,

> >

> > I just received a copy of the radiologist's report from my scan in

> December. I knew I was retethered to the right side - plus it made sense,

> my right side is deteriorating faster than my left. However, I couldn't

> understand why my left side (leg) was still getting worse - although at a

> slower rate and in a different way - it is still getting much worse.

> >

> > The report states I'm tethered to the left in the sacral area and

> tethered to the right at S1/L5-4. It also states that I have arachnoiditis

> on nerve roots on the right side. When I researched the term they used when

> discussing the nerves, the pages all said it meant arachnoiditis - so that

> one is a self-diagnosis - the report uses a different term. However, this

> is on the right side and the research I read states symptoms that I am

> experiencing in my right leg can be caused by arachnoiditis (as does

> tethered cord symptoms, as we all know).

> >

> > So - my questions are: anyone else tethered on both sides in different

> areas? Anyone else with the above and been able to figure out what is

> causing what deterioration? Are there electrical studies that can determine

> if it's a tether or swollen/scar tissue encased nerve roots that is causing

> the problems?

> >

> > Kathy

> >

> >

> >