Re: katherine

[Guest guest]

Hi Thank you lol! I agree, it is great to talk to someone who

understands PA is a beautiful state, so green I am 45, live in OK, my

daughter is 27 and lives in CO and my son is 23, has a 3 yr old daughter himself

and lives in IN. I sure do miss my kids! Unfortunately due to finances and

difficulty traveling I dont get to visit much. I was an RN for 14 yrs, mostly

Neonatal Intensive Care and usually worked Home Health on the side, kids,

adults, infusion mostly. I also did some Dialysis, Conscious Sedation for out-pt

surgerys etc.  I still hold an inactive license, hoping for a miracle that I can

return to work. I understand what you mean about the surgery. The basic rule of

thumb is to never have surgery expecting it to take care of the

pain....but....my first detether (2000) did take away my pain...and when the

pain is so very severe, as mine was yesterday, what are you supposed to do? Of

course I cant even get anyone to agree that I am

retethered...and no health insurance..so I dont know what to do. I need a CINE

MRI in all four positions...if they can prove to me that I am not retethered

then I will drug up and do whatever PT is needed to strengthen my body. BUT, all

my symptoms SCREAM being tethered...and just because they look at the MRI and

say, " the cord is at L1 " doesnt mean it isnt tethered there on the side or

something. My God, if I'm not tethered then what the hell is wrong with me. My

pain is really getting unbearable. Most times I am really grateful for my

nursing education and experience but when it comes to making a decision about

surgery, I wish I knew less. Yes, anesthesia, stroke, paralysis, increased pain,

increased disability...all risks. I had symptoms my whole life... I remember

crying with back and leg pain and everyone told me it was just growing pains and

to stop whining. Then I had so many accidents and broken bones that it was all

blamed on that. Saw a chiro

from age 5, for treatment not prevention. I'm actually very lucky that I didnt

wind up in a wheelchair before 2000. My back is pretty much screwed. I broke

C5 & 6 at age 12 and they have fused naturally over the years due to the damage.

Injured my upper back lifting a patient (adult of course lol) Broke my pelvis

about 10 years ago, had my detether in 2000 and broke the sacrum and coccyx in

the fall in 2005. They tried to pull the coccyx back into place intra-anally but

it wouldnt budge, stuck in scar tissue I suppose. , I wish, as we all do,

that I could tell you what to do about the surgery, but I cant even tell myself

lol. I know that all you want is for the pain to go away...or even just become

more bearable. Me too.

                                                                      Hang in

there

From: laurav1945 <neveragain92@ yahoo.com>

Subject: a retethering question

To: tetheredspinalcord@ yahoogroups. com

Date: Wednesday, December 31, 2008, 6:21 PM

Amen to this, Randee -

There's still no way to know.

There are no long term studies that indicate waiting or not would be

the best option. The current swing to prevention is relatively new,

and most have not reached adulthood, and certainly not middle age.

Seems to me, just a personal observation, that many of us with

uncorrected TC tend to get into trouble with symptoms in our 30s &

40s. I'm concerned for those who are tethered because of scar tissue

from those early operations and were told that all would be well once

they finished growing.

yet, when symptoms are intolerable, surgery is an option, no matter

what....

V

> The idea that surgery is preventive is relatively new.

> With our kids, it was don't mess with surgery unless you have too.

Sigh.

> And who knows what would have been best anyway since they so often

need more

> surgeries due to scar tissue (as in the case of my girl so....?)

Randee

>