RE: OH MY GOSH...MY TOES!!!

March 4, 2009

Hi guys- As many of you know, I had my tethered cord release and lumbar fusion

Jan 26th. The last 3 nights I have woke up with what feels like my toes are on

fire on my left foot. It's only half of the big toe and the first 3 toes. It

seriously feels like someone poured gas on them and lit them on fire. I am sure

it's nerve related.

Did anyone else have this problem when their nerves were readjusting after

surgery? I just pray it subsides....It hurts soooooo bad!! It's only when I am

laying down at night in bed. Please tell me???? Thanks, Traci

March 25, 2009

Traci,

I hope that the neuropathy in your toes has calmed down since your post.

After my second and third surgeries, my neuropathy went through the roof.

When I was IP, I couldn't stand for even a sheet to touch my legs,

especially my feet. The neuropathy has never gone away. But even today, the

neuropathy is worse in my left leg. The burning is strongest in my toes and

gets a little (a mean little) better as you go north. By the time you get

to my knees, its not too bad. It is gone by mid-thigh (which is where my

sensation returns). I wrote this in a recent email about someone else who

had a recent surgery - MDs and research says that it can take up to a year

to find out what you're going to be left with (function, pain, spasticity,

etc). That is not a definite time (some people will stabilize before and

others long after). So, don't worry about whether x or y is going to be

permanent right now. Just focus on PT and helping your body heal. In the

meantime, see your MD about finding a med that can help manage the pain

while you heal. There are heaps of different meds that can help alleviate

neuropathy. Unfortunately, it's a matter of trial and error to find the one

that will work for you. And it can take a LONG time to find it, so you need

to be patient. The reason it takes so long to find the right med is that

most meds used for neuropathy are ones where the dose must be increased

gradually up to the therapeutic dose. Often, you won't experience relief

until you make it to the therapeutic dose. Then, if the med is not the right

one, most cannot be stopped cold turkey. As they require tapering up, they

require tapering off. It can take a full month to test one med (2 weeks up

and 2 weeks down). Not all have long taper periods and some none at all (but

I honestly can't think of any right now that you don't have to taper the

dose). Another thing to keep in mind with these meds is that none of them

are perfect. First, it is rare to find one that will eliminate the pain. Its

all about management. Even the best med I took just kept my neuropathy down

to a dull roar. Second, they all have a variety of ugly side effects. It can

be a tedious process to find the one that provide the best pain mgmt with

the least amount of side effects.

I'm sure this process sounds kind of grim. But its trial and error and

patience (of which I have little, as does anyone who has been in pain for

any length of time and wants/needs relief). You just have to stick with it.

Over the years I have tried: imiprimine, Depakote, Tegretol, Tompamax,

Keppra, neurontin, Cymbalta. and I'm sure I'm missing one or two others. You

may not need them forever - you may just need them for a period of time

while your body heals and the nerves recover from the stress of the surgery.

I took Tegretol (carbamepazine) after my second surgery. I started on it

while I was still IP. But was able to come off of it after a few months.

Hang in there and hopefully things will get better. Communication with your

MD is very important.

Jenn

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of Traci Pelchat

Sent: Wednesday, March 04, 2009 7:34 AM

To: tethered cord group

Subject: RE: OH MY GOSH...MY TOES!!!

Hi guys- As many of you know, I had my tethered cord release and lumbar

fusion Jan 26th. The last 3 nights I have woke up with what feels like my

toes are on fire on my left foot. It's only half of the big toe and the

first 3 toes. It seriously feels like someone poured gas on them and lit

them on fire. I am sure it's nerve related.

Did anyone else have this problem when their nerves were readjusting after

surgery? I just pray it subsides....It hurts soooooo bad!! It's only when I

am laying down at night in bed. Please tell me???? Thanks, Traci

March 30, 2009

Thanks Jenn for the kind words. I will keep you posted. The nerve pain is

getting better, but I am having my horrible tremors/seizures at the back of my

head worse--- it's scary, feel like I am going to have a full blown seizure.

Don't want to take pain meds, but they seem to be the only thing that helps me

be able to tolerate the day, but then when they start to wear off....I get more

tremors/seizury activity at the back of my head. I wrote the neurosurgeon, so

we'll see what he thinks. I would be up for a trying an antiseizure med if it

meant I could function normal and work fulltime. We'll see. How are you doing?

________________________________

To: tetheredspinalcord

Sent: Wednesday, March 25, 2009 5:42:09 AM

Subject: RE: RE: OH MY GOSH...MY TOES!!!