Update

[Guest guest]

Hi Everyone,

I am at work and since I came in this morning I am having a hard time

keeping my eyes open. Fatigue has set in really bad. What do you do

when this happens I swear I could put my head back on my chair and

fall asleep right now. this morning I nodded off a couple of times.

I also have the upper portion of my foot bothering me betweem the big

toe and the one next to it. I has been hurting me for about two -

three weeks now. It feels like I sprained it and do not remember

doing anything to it and today it really hurts.

I hope I am not going into another flare I will scream, I have felt

half way decent for about a week now. Is that fairy coming to my

house next maybe I should go on vacation and she would not know were

to find me.

Well I should go and try to do some work....

Sleepy In IN

[Guest guest]

Yes , that is one of the reasons I had to quit working. I was falling

alseep and the other reason was severe pain to the point that I sat there

crying. It is real hard to be productive when it is like that. I hope you

feel better soon.

hugs,

Sundra

Our greatest glory is not in never falling, but in rising every time we fall

-- Update

Hi Everyone,

I am at work and since I came in this morning I am having a hard time

keeping my eyes open. Fatigue has set in really bad. What do you do

when this happens I swear I could put my head back on my chair and

fall asleep right now. this morning I nodded off a couple of times.

I also have the upper portion of my foot bothering me betweem the big

toe and the one next to it. I has been hurting me for about two -

three weeks now. It feels like I sprained it and do not remember

doing anything to it and today it really hurts.

I hope I am not going into another flare I will scream, I have felt

half way decent for about a week now. Is that fairy coming to my

house next maybe I should go on vacation and she would not know were

to find me.

Well I should go and try to do some work....

Sleepy In IN

1. While it is wonderful to share our experiences with everyone on the list

as to what treatments do and don't work for us, pls always check with your

dr. Some treatments are dangerous when given along with other meds as well

as to certain health conditions or just dangerous in general.

2. If you are in a difficult situation (doesn't matter what it is) pls don't

be afraid to ask for help. It is the first step to trying to make that

situation better.

Have a nice day everyone.

[Guest guest]

Exactly, like migraines without the auro, I think I have used those exact

words...but the two that put me in the hospital were ....something

else...horrible horrible...much much worse than a spinal leak headache...I dont

know what the heck they were, but I'm glad I have only had two and hope to never

have another. 

Subject: Re: Update

To: tetheredspinalcord

Date: Thursday, November 27, 2008, 2:59 AM

I always wondered about the headaches too. They are like migraines but without

the aura...I try to describe them to my family but can't really find the right

description. I thought that it was that the spinal fluid can't always get around

the mess of nerves tangled with my cord...therefore not enough fluid pressure to

keep the other nerves ect. cushioned from their surroundings. ..not sure if I'm

making sense ...

Update

I have spina bifida and discovered I had a tethered cord three years

ago. I just turned 60 today. I got released right after I was

diagnosed.I was told that I would not be walking in a year if I did

not have the surgery. I am walking today so from that standpoint my

surgery has been a success. Unfortunately it did not help the pain and

I am in a pain management program.

About a year ago I started seeing some symptoms that had gone away

with the operation. I wondered if I might be retethered. I also have

had a few sessions of severe headache that lasted four or five days. I

have always been sensitive to headaches caused by pressure to my soft

spot on my lower back. I cannot lay on my back, sit in soft chairs, or

bend a lot without getting the headaches. My new headaches are like

the old lasting days instead of hours. Normally a couple of ibruprofen

and laying down did the trick, but no such luck with the new ones.

About a month ago I started to have more hip and leg pain and two

weeks ago I had another headache round and decided to get an

appointment with my neros.

My wife Bobby called the neros office on Monday. After pushing a

little, the office said they had an opening on Tuesday. We jumped on

it. Got up at three am and drove the 200 miles to Portland. I saw the

Doctor at 11. He wanted an mri done.I had trouble laying down for the

last MRI and said I would prefer a vertical done. His nurse called the

place and they had an appointment at noon. We drove across town and I

got my vertical MRI early Tuesday afternoon.

I took the files with me and saw my Nero at 8:30 Wed. Is this a record

or what.

The results: It looks like I have retethered. My nero wanted to wait

until he got the radiologist report to be sure. It does not appear as

bad as the first tether. He will get in touch with me with the

results. If the tether, looks like it won't cause me any further loss

function, my guess is I won't go for a second surgery. We will just

have see when I get the final report.

The most obvious problem is I do have a leak. There is a large sack

and the leak is probably in the scare tissue. We think that this is

what is causing the headaches. Since I've had these headaches all my

life, it's possible I've had this problem since my surgery at 6 mo old.

I have not seen any body post on getting headaches like I get, and the

doctors, I have seen, are not sure about what is causing this. I

originally thought it had something to do with nerves, but I now think

it has to do with spinal fluid pressure. I would sure appreciate any

comments or experiences others have had. For me the risk benefit of a

surgery is iffy. My thoughts at this point is not to have another surgery.

When I get home I'll report on the vertical MRI.

Woody