A few questions on tethering

[Gymp]

The surgery they use to stick the spinal cord back into the spine is called untethering or ???

I had surgery when I was a teen where they removed a lump from the base of my spine (just above my butt) I'm assuming the surgery was untethering ??? The scar from this stretches right across the bottom of my back.

Fast forward to now...This past summer I've been experiencing some really really wicked pain in the area where that lump was removed.I hate to complain but the pain is so bad that I can hardly move and it actually keeps me bed bound for a few days.

It's weird I'll feel a twinge in my lower back on that scar line and then It'll start to ache and by the end of the day I can barely move.By the next day the pain is so excruciating it'll take me 30 minutes to walk the length of the house,each step I take comes with what feels like somebody sticking a knife in the back.Then by the next day it eases up a bit and it takes about a whole week to get through an episode.This last episode I had the main pain subsided within 4 to 5 days and it still doesn't feel quite right and it's been about 3 weeks

Any thoughts on this ? Does this sound like I need to get the detethering thing done again??? A bad case of sciatica???

I know most of you are thinking Geez just go see a neurologist but it's not that simple.My mate was in an automobile accident and she needs looking after.She had a closed brain injury,is paralysed on the left side and has really horrible short term memory.

No doctor around here will even look at me with my medical history.They're scared of me LOL...The closest to some real professionals is about a 4 hour drive.

Any thoughts on this ???? another persons opinion would be appreciated.

Thanks
Gymp

[vonni76]

I would really suggest going to see a neurologist as soon as you can. I have been relatively luck in the operations department but a few years ago I start to have extreme fatigue and my legs started to go numb after sitting or standing too much. I also was having trouble turning my head as well as having urological issues. I was told that I need to get my spinal cord untethered because of my operation to close of spine when I was born my spinal cord was surrounded by endless scar tissue. Long story short my doctor told me that the longer I would have waited to correct the problem the more damage I would have done to myself. I use to be able to force urine out and sometimes get away with not catherizing but I cannot do that and apparently I have done some more nerve damage. I think it's always best to proceed with more caution than not enough. Wish you luck

[carrieandcam]

My son had a "lipoma" ( a fatty lump) at the base of his spine since he was born. It went undiagnosed until he was 5 yrs.old. Because it went undiagnosed for so many years the lipoma grew and grew, and his spinal cord became more and more "tangled" and intertwined into that lipoma.
He started suffering leg pain, weakness, back pain and incontinence when he was about 4 yrs old. but didnt get properly diagnosed till 5 yrs.old.
I was told by the DR. that had he been diagnosed earlier and had his cord "de-tethered" as a baby, he would most likely be fully continent. The longer time went on with out "de-tethering it, the more nerve damage was done. ( permanent damage)
If I were you, I would go have an MRI and go to your Neurologist ASAP. Once nerves are damaged, it is very hard to regain function. ( So I've been told)
Keep us posted.

[Dodger67]

Carrie

Its really good to see how quickly you are finding your feet here. :sign0021:
You joined only a few days ago and already you're giving advice!:goodpost:

[Dodger67]

Detethering is actually "un-sticking" the spinal chord from the scar tissue at the lesion site (or from entaglement in a lipoma). The chord must be able to slide freely inside the spine to accomodate stretching and bending as one moves. If it becomes attached to the spine by scar or lipoma it is said to be "tethered" or tied down. Instead of slipping smoothly as you move it gets pulled and stretched. In kids it is even worse because it gets streched tight as the spine grows! The tension on the chord causes (usually irreversible) nerve damage. It can also agravate Chiari as it pulls the brain down in the skull towards and into the foramen.

[Gymp]

Thanks for the concern Vonni & Carrie,great explanation of detethering too Dodger.
I did go to my GP about it and he thought I had pulled a few muscles or had pinched a nerve from a fall off my bike which had happened a few days prior to the back episode.I didn't know that pain from a fall could manifest itself days after the actual event. He did mention if I were to have another episode that a more extensive investigation into it would be done.That last episode was late last summer or in the early fall and I haven't had one since,I do still get the odd back ache after a busy day,especially after shoveling some snow or digging in the garden but that should be expected for someone at my age of 52.These aches are nothing compared to the one last summer/fall.

Thanks
Gymp

[LisaJoy]

I find that I can't do any "stoop" labor without serious nerve pain for several days. I know every time I pull weeds that I'm going to pay for it. There would be no way I could shovel snow. Even just lifting a 20 lb box of cat litter causes problems.

Today, there were no parking places (handicapped or otherwise) near my building, so I had to walk across campus to get to my office & class -- not in itself a problem, but if I have to walk far carrying ANYTHING heavier than a purse I pay for it. I had three bags of stuff, including books & laptop. I guess I'm going to have to keep my roller bag in the car for these occasions! And of course, there were FIVE empty "maintenance vehicle only" parking places right by the building.

[Gymp]

I find that I can't do any "stoop" labor without serious nerve pain for several days. I know every time I pull weeds that I'm going to pay for it. There would be no way I could shovel snow. Even just lifting a 20 lb box of cat litter causes problems.

Lisa,I can't stoop period,if I tried I'd topple over.I use a childs chair for pulling weeds,it works amazingly well for me.We've got a cat too,Izzy and I usually buy the large18kg (40lb) bags of kitty litter.A few years back I had no problem to sling one of these bags over my shoulder and carry it but not anymore,I can lift it no problem but I can no longer walk with it as I feel it my lower back big time.I now use a cart to get it out of the store then my wife's spare wheelchair to get from the trunk of my sister's car and into the house.If my sister is impatient she'll pick it up and carry it into the house and boy does that make me feel like a weakling,she's a few years older than me. : )

Gymp

[Dodger67]

Lisa - don't you qualify for reserved parking?

[kidsrustx]

Thanks for the concern Vonni & Carrie,great explanation of detethering too Dodger.
I did go to my GP about it and he thought I had pulled a few muscles or had pinched a nerve from a fall off my bike which had happened a few days prior to the back episode.I didn't know that pain from a fall could manifest itself days after the actual event. He did mention if I were to have another episode that a more extensive investigation into it would be done.That last episode was late last summer or in the early fall and I haven't had one since,I do still get the odd back ache after a busy day,especially after shoveling some snow or digging in the garden but that should be expected for someone at my age of 52.These aches are nothing compared to the one last summer/fall.

Thanks
Gymp

I have read that a fall or injury can bring tethered cord symptoms to the surface. Several articles have stated that prior to the accident there was a tethered cord, but that it was symptomless. So maybe the accident somehow irritated a TC that was already there?

[LisaJoy]

Dodger--I have a disabled parking placard, but that only qualifies me to park in a designated spot. It doesn't guarantee that one of those spots will be open! This campus actively recruits students with disabilities so it is not uncommon to find all the designated spots taken. The only people who have reserved spots on this campus are the university president and the six deans of the colleges.

Lisa

[angel]

I ran into that problem when i was in college as well. The spots were there but they were always taken. I think i got lucky a hand full of times and was able to park in a designated spot.

Angel

[Dodger67]

Shopping malls in this country generally all have such spots but they are usually taken by people who are clearly not entitled.
As the mall parking lots are private property the police are not involved in enforcment and the mall owners don't really care - they mostly seem to think their responsibily ends with painting the lines and putting up signage.

[LisaJoy]

Enforcement on campus is pretty good, but there just aren't enough places -- partly because of the rampant problem of people obtaining the placards fraudulently. It doesn't help that in Tennessee there is a financial incentive to cheat. If you have a placard, you can't be charged to park at any state or municipal owned facility and you don't have to pay at municipal parking meters. So for example, I don't have to pay to park at the airport and I don't pay to park on campus (other employees pay $120 per year). I'm not sure who decided that disabled people can't pay for parking -- there's no free parking in general for people who are indigent. (I do understand not requiring people to feed the parking meters). And of course, everyone knows that there is no verification process -- anybody can get a placard and just sign whatever name you want to the doctor's signature line. A local TV station did a story a few years ago about how much fraud there was -- their reporter filled out a form and for the doctor's signature wrote "Anita Walker" (I need a walker). It was processed and she was given a placard without question!

This is one of those issues that really gets on my nerves.

[Mustang Sal]

That sucks Lisa! That should surely be a priority issue for the authorities in your state?

In the UK we have the Blue Badge parking scheme, whereby disabled people get a little blue card to display whenever they need to park, whether it's in a private carpark (shopping malls usually charge whether you're disabled or not) or on the road, either in meter bays or on double yellow lines (so long as you don't cause an obstruction). There has been a massive clampdown in recent years on blue badge fraud - it wasn't that people were being awarded them because the system is rotten, it was mostly a case of people either stealing the badges from people's cars (yes, they will even smash a window in order to get to it - like you say, financial incentive) or 'borrowing' them from genuine disabled people (who are just as much at fault). There's not much they can do about the theft from vehicles thing (appart from CCTV in car parks etc) but the fines for misusing the badges has gone up, and a bigger deal is being made of the whole thing in general. However it still doesn't stop people who have no disability or blue badge from parking in the the reserved spaces, especially at supermarkets (although one has recently started issuing £40 fines for people who do this, which is great!) as the spaces are usually near the cash machines so people think 'i'lll just pop out, won't take me a sec'.

Over here, you would always get a blue badge if you were in receipt of DLA (disability living allowance) at the higher rate for the mobility component (as I am) but as it's actually now nigh on impossible to get the higher rate component, there are fewer blue badges being issued, which kind of sucks if you really can't walk far but the council says 'no' because the Department for work and pensions (DWP) says you're not disabled enough to warrant help with getting around. It's a highly contentious issue over here, as i'm sure it is in other countries - I was awarded DLA indefinitely, but I was one of the lucky ones. Ok, it's not lucky that I have a lifelong disability, but there are other people out there with problems as bad as, or worse than, my own and they get no help at all. Oops didn't mean to turn this into a rant against the benefits system in the UK!

Anyway, just wanted to give the UK slant on disabled parking concessions :)

[LisaJoy]

That's interesting, Sally. The opposite problem exists here -- virtually no enforcement and pretty much anybody can get a placard (it's blue here too) for any reason (or no reason, if they lie). I've heard some estimates that as much as 25% of the population in TN has a disability placard. Of course, I'm only talking of Tennessee; there is a federal law, but states decide how to apply it, so the rules, benefits, and levels of enforcement vary from state to state.

[Dodger67]

If you think that's bad you ain't seen nuthin' yet!
Here in SA parking rules and enforcement is a municipal (in)competence. Result: Most have no policy or rules at all. The few that do each have their own procedure for getting one of their tags/stickers (of course only valid for that city). Some insist that only disabled drivers qualify - you have to show an endorsed licence.

[Gymp]

In Ontario Canada we too have blue tags,kept in the windshield of the car to signify you're eligible to park in a disabled spot.To get one of these tags issued to you,you have to submit a letter from your doctor to the Ministry of Transport and after review they send you a blue tag which has to be renewed (signed by a doctor) every 5 years.

We've got lots of problems as well with people stealing/borrowing these tags,people even use computer printers to copy them as they do look passable.

The fines for parking in a disabled spot without a tag have risen dramatically over the last few years.it'll cost you $300.00 if your caught.
The problem is there isn't enough enforcement to go around.We actually have "parking police" that drive around looking for cars parked illegally,not just disability infractions but parking in front of fire hydrants,double parked etc.These parking police not only cover public roads and lots,they can enforce the rules on privately owned lots as well if they have disability parking slots that are posted with signs and the disability symbol painted on the ground.

These guys drive around the city at scheduled times and if you know the time they come around to your lot (twice a day) you can easily beat the system by moving your car before they get there.

It's slowly getting better but we still have really dismal enforcement and many legitimate tag owners are having to park elsewhere.

Gymp