Re: Here we go again..surgery #4 coming up-thx Jenn

[Guest guest]

Thanks, Jenn. the lyrica is helping now but would for sure freak

at the kinds of weight gains people report. At 20, she isn't going to

handle that well...I am hoping she will be off pain meds post surgery. I think

I see her left foot turning in a bit when she walks..along with the

numbness, weakness and the fact that i do think she has had a growth spurt in

the

last three years..and the occasion of the incontinence and the increased

constipation....whew...I am telling myself I am OK with this decision to do a

release for the 4th time. sigh sigh sigh. randee

In a message dated 4/9/2010 4:25:13 P.M. Central Daylight Time,

jlbobin@... writes:

Randee,

I'm sorry to hear that has to go through this again. Reaching your

full height does not put an end to the risk of having a symptomatic

retether

(unfortunately)(unfortunately)<WBR>. If it did, there would be many of us a

would not have to have had surgery. I didn't become symptomatic for the

first time until I was 21 - a full grown adult. I don't think reaching

one's

full height would exacerbate symptoms. I think it is the growth spurts one

goes through getting there. The cord can accommodate small stretches. But

when a growth spurt happens, the cord cannot accommodate such a big amount

of tension being placed on it in such a short period of time. If only once

you stopped growing having a symptomatic retether couldn't happen. Oh, if

only that were true.

Lyrica - I took Topamax for years. Then, I had my compression fracture. All

of a sudden, I had tremendous pain through my legs. My physiatrist changed

me to Lyrica. The Lyrica worked great for the pain. Unfortunately, Lyrica

is

known to cause edema. As a paraplegic, I already have a big problem with

dependent edema. Typically, though, the edema will resolve itself while I

sleep overnight. When I was taking the Lyrica, it would take 3 days of

staying in bed with my legs elevated to get it to go down. As others have

mentioned, it also caused weight gain. I only took it for 8 weeks. There

were clothes I could not wear at the end of the eight weeks that I could

wear before I started taking it. No change in diet or activity. I didn't

have any problems with depression when I was on it. After the Lyrica, he

changed me to Keppra. That is known to cause depression. When I first

started it, I had problems with depression. I wasn't suicidal, but I would

cry at the drop of a hat. I was taking it around Father's day. I was a

blubbering mess int he grocery store as I was reading through Father's day

cards to pick one out. I was just about to call my MD and tell him that I

wanted to try something else. I was sick of feeling like I had a grey cloud

over my head all the time. I had dealt with depression in the past, and I

didn't want to go back to that " place. " But, as I was about to make that

call, on the 3rd week, the cloud started to lift. By the end of the first

month, it was gone. That is one thing about these meds for neuropathy. They

take a lot time for your blood levels to reach a therapeutic range and they

also take a while for your body to adjust to them.

After Keppra, I took Cymbalta. That was the best med for me. Worked pretty

good for my pain (there were better, but their side effects were too bad)

and didn't really have any side effects. My insurance changed and they

won't

cover it, so now I don't take anything. Another option is Tegretol

(carbamepazine)(carbamepazine)<WBR>. It is on the $4 at pharmacies that

older anti-seizure med, but it worked well for my neuropathy. I didn't gain

weight on it, but I felt like I was running in slow motion. The rest of the

world was going at a normal pace, but I felt like a 33 record in a 45

world.

Good luck finding the right med for her neuropathy.

Jenn

On Sun, Apr 4, 2010 at 3:40 PM, <_Randeejae@..._

(mailto:Randeejae@...) > wrote:

>

>

>

>

> At any event, he seems wise and was one who sadly shook his head when we

> told him that we were told her problems would be over at full growth.

Yet,

> he asked if she has grown since the last surgery. I was surprised

> and we had already been there a long while so I didn't ask why he even

> asked

> since I didn't think he thought growth was relevant. Any thoughts? I am

> wondering if growth can contribute to the exacerbation of symptoms but

> clearly full growth is not any sort of reassurance there will be no

return

> of

> symptoms?

>

>

> thanks all.

> Randee

>

>

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