Re: & CT myelogram

[Guest guest]

Thanks for all of your responses! I will try to check the names of

the doctors you guys gave me to see if my insurance takes them. I

have a decent plan. Once we reach $1000 out of pocket (yearly),

everything is covered 100%. I easily had reached that by February!

So my chemo treatments are free, PT is free, my $25,000 powerchair

is free, etc. And it's a PPO, so I can choose to go out of network,

but then I have to pay a large portion of the bill. I am very

thankful that my husband has such good insurance, because I have

heard horror stories from other people.

Here's another question. I had a CT myelogram done last year and

the test failed - the hospital didn't even charge me for it. It was

done under a fluoroscope (or whatever the live xray-type thing is

called), and the guy who did it thought he had the needle in the

right place. After it was done with and I was laying flat for 5

hours (had an LP done too), he came up and profusely apologized that

somehow the test didn't work. He said in all his years of

experience he had never seen a back as bad as mine, and he had

never " missed " where to inject the dye. I myself don't understand

how he could have " missed " since I was under the fluoroscope

machine. I know that he didn't have many options of where to place

the needle since I am fused to L4. Has anyone had this happen

before? So needless to say, they couldn't conclusively tell me if I

had any nerve blockage going on. What all is the test able to tell

you? Thanks for any help!

>

> HI ,

>

> Sorry you need to handle so much. I wouldn't just concentrate on

the MS issues. It is possible that some of your mobility and

certainly some pain and nerve issues could be from Flatback. MS

docs are not likely to know much about Flatback, so may discount

your back issues which are real. Some Flatback sufferers find

themselves with all sorts of nerve pain and some need assistance

with mobility. I know some feel a weakness in one leg and some use

a cane. So, my vote would be for you to concentrate on both

problems. Good luck to you.

>

> Bonnie

>

[Guest guest]

Maybe they can do a " sub-cysternal " or whatever you call the ones

where they go in thru the neck? That's what SB just had--maybe she

can give you some info. I too was wondering if they'd have trouble

getting into my L5-S1 region, but they went in fine, and I even saw

the dye moving up the spine while I laid there!! My Mylogram went

fine, but I had al ot of pain afterward for a few days. Not back

pain, but nerve-like " heaviness " in my legs and lower back. That's

the part I wouldn't want to repeat. Then I was all " out of balance "

for several weeks getting migraine like headaches at work and stuff.

It's amazing how one little thing can cause you to get all out of

whack.

Carol V (CA)

> >

> > HI ,

> >

> > Sorry you need to handle so much. I wouldn't just concentrate on

> the MS issues. It is possible that some of your mobility and

> certainly some pain and nerve issues could be from Flatback. MS

> docs are not likely to know much about Flatback, so may discount

> your back issues which are real. Some Flatback sufferers find

> themselves with all sorts of nerve pain and some need assistance

> with mobility. I know some feel a weakness in one leg and some use

> a cane. So, my vote would be for you to concentrate on both

> problems. Good luck to you.

> >

> > Bonnie

> >

>

[Guest guest]

Carol,

Wow, that's interesting. I thought I just had bad luck that the

myelogram failed, nobody ever suggested anything otherwise. Going

in through the neck doesn't sound very pleasant. I am storing all

of this information I am learning from you guys, and when I can, I

will go to see a revisionist and hopefully be prepared! You guys

are all awesome

> > >

> > > HI ,

> > >

> > > Sorry you need to handle so much. I wouldn't just concentrate

on

> > the MS issues. It is possible that some of your mobility and

> > certainly some pain and nerve issues could be from Flatback. MS

> > docs are not likely to know much about Flatback, so may discount

> > your back issues which are real. Some Flatback sufferers find

> > themselves with all sorts of nerve pain and some need assistance

> > with mobility. I know some feel a weakness in one leg and some

use

> > a cane. So, my vote would be for you to concentrate on both

> > problems. Good luck to you.

> > >

> > > Bonnie

> > >

> >

>

[Guest guest]

,

Did the docs realize that your myelogram failed because of the

stenosis, or did it take the MRI & discogram to figure it out? And

did you have rods in your back when you got your MRI? I have

problems with my MRIs for MS - if they go too low in the cspine they

start to get artifacts from the metal rods. And sorry for all the

questions, but what is a discogram?

>

> Dear ,

>

> I too had an unsucessful myelogram, dye just never got where it

was supposed to. I then had a MRI and a discogram. I had a severe

case of steniosis, had a decompression for that and then Fusion to

the sacrum later on. There have been a few members lately that have

had myleograms done with a different approach. Click on " messages on

this topic " at the very bottom of this message, keep scrolling down

through all the posts here, and you can read the past conversations

on the thread. I also believe from the site itself you can search

for " Myleogram " and read all of our old posts on that subject.

>

> Glad to hear you have good insurance, hopefully you can get to a

good revision doc, and get what tests you need done before your

deductable runs out for the year. I cram as much medical stuff in

as I can before the deductable is up, especially my daughters

Scoliosis braces, got the last one into billing the day before our

deductable was up, those buggars are expensive. ( Here's me with

Scoliosis, and the daughter too, but she got through her growing

period, and just had to be braced, no surgery). I can only imagine

what that wheelchair would cost! With a little planning you can

really keep the costs down.

>

> I wish you luck with the journey through Flatback, and of course

with the MS, totally not fair!

>

>

> Colorado Springs

[Guest guest]

I forgot to mention that I'm fused to L4 also. I knew I had arthritis

down there before the CT/Mylo (taken 8/10/06), but now I know that I

have a narrowing of the spinal canal in several places and alot of

stenosis, degenerating discs and what they call " cysts " on the spinal

sac where the nerve roots come out. I have ALOT of pain--nerve and

otherwise in my lower back that goes down into my hips, legs and

feet. But without the CT Mylo I wouldn't have known any of that. And

the key is to get the copy of the report YOURSELF because some docs

soft-pedal the results to their patients. (take note Cristl and

Kathy) The one that I saw last year just had the CT only done on me

and he told me only that I had arthritis but no stenosis. But when I

got the copy of that mylogram MYSELF it mentioned Degenerative Disc

Disease (he never told me that) and most of the other things couldn't

be seen because of the rod causing the " flash " or whatever the proper

terminology is of that. It kept saying " without contrast dye unable

to determine to determine stenosis or thhis or that " So I thought,

what was the purpose of it without the dye--almost a waste of time?

Maybe OK for someone without rods, but us with rods those tests don't

tell much.

Good luck!!! (PS--I have the urodynamic study this Saturday scheduled-

by Dr. Hu-thanks for your earlier input on that)

Carol (CA)

> > > >

> > > > HI ,

> > > >

> > > > Sorry you need to handle so much. I wouldn't just

concentrate

> on

> > > the MS issues. It is possible that some of your mobility and

> > > certainly some pain and nerve issues could be from Flatback.

MS

> > > docs are not likely to know much about Flatback, so may

discount

> > > your back issues which are real. Some Flatback sufferers find

> > > themselves with all sorts of nerve pain and some need

assistance

> > > with mobility. I know some feel a weakness in one leg and some

> use

> > > a cane. So, my vote would be for you to concentrate on both

> > > problems. Good luck to you.

> > > >

> > > > Bonnie

> > > >

> > >

> >

>

[Guest guest]

Carol,

Good luck with the urodynamics on Saturday. If you're comfortable

with it, let me know how it goes

> > > > >

> > > > > HI ,

> > > > >

> > > > > Sorry you need to handle so much. I wouldn't just

> concentrate

> > on

> > > > the MS issues. It is possible that some of your mobility

and

> > > > certainly some pain and nerve issues could be from

Flatback.

> MS

> > > > docs are not likely to know much about Flatback, so may

> discount

> > > > your back issues which are real. Some Flatback sufferers

find

> > > > themselves with all sorts of nerve pain and some need

> assistance

> > > > with mobility. I know some feel a weakness in one leg and

some

> > use

> > > > a cane. So, my vote would be for you to concentrate on both

> > > > problems. Good luck to you.

> > > > >

> > > > > Bonnie

> > > > >

> > > >

> > >

> >

>

[Guest guest]

,

Thanks for the tip about getting my hands on the report myself. I

usually just depend on listening to what the nurse or doctor tells

me about the results, so I'll remember that the next time around.

>

> Dear ,

>

> The doc doing my myelogram really never thought it would be

possible to do the test at all, gave Kumar a few calls before doing

it, with my fusion, rod, and the slippage I had at L-4, L-5 I think

the thing was doomed from the get go. I did have an MRI, just what

was clear and what they got from it isn't clear to me. My rod had

cut out at both hooks 15 years before, and in my surgical report it

states that my Harrington Rod was removed without any difficulty. In

my x-rays before that surgery my Harrington rod looked like it was

floating near my spine. My discogram as I understand it was to see

if the disks below my fusion were generating pain and that test was

negative. My best advice on this test is to Google Discogram and

read up on it.

>

> Going into my decompression surgery I had a myelogram, MRI, Bone

Scan, Discogram. My surgical notes state I had Flatback deformity,

severe spinal stenosis, lateral listhesis of L4 and L5, and severe

neurogenic claudication. I had during that surgery my Harrington Rod

removed, and L4 and L5 decompression. A year later I had my fusion

extended to the sacrum,anterior and posterior approaches, with

cages, new small rods, screws and bolts. 11 months later I had

another revision because my Harrington Rod Mass cracked above my

first revision. At this time they took out my hardware from my first

revision, extended my fusion up from T5 to T1, did an osteotomy at

L3, and put in new hardware. I'm now fused from T1 to the sacrum.

You can see my X-rays in the pictures part of the site, I'm in the

misc file. I have two long rods, and one short, twenty some screws,

and bolts. My new hardware is stainless steel, it replaced the

titanium hardware from my first revision. Kumar states in my

surgical notes that Stainless Steel was used because of the improved

tensile strength. While it took three surgeries, my outcome from the

whole thing is better than I could have hoped for. At present, and

since my surgical pain ended, I have been painfree. I'm able to

stand upright, walk for distances, stand, and I'm level at the hips

and shoulders.

>

> Any questions just ask!

>

>

> Colorado Springs

[Guest guest]

the cervical puncture for the myelogram was not nearly as bad as I

had imagined it would be.

My doc gave me an IV of some 'relaxer' and he kept me talking to

distract me from what he was doing. The needle goes in kinda behind

and slightly below the ear, and he got it in the proper place with

just one stick.

They had me sit up, so the dye could travel to my lower back, and

they moved me to the xray room where I had to do two standing xrays -

-one bent forward (that one was easy!) and one with my back arched

(or at least as straight as I could go). They had me sit again

while they checked to make sure the xray films were good, then they

moved me to the CT room.

They were a little puzzled that they were to do a lumber scan but

the needle stick was in the neck, but after they verified that, they

did the CT scan of my lumbar and thoracic spine, then sent me back

to the recovery area where I had graham crackers and Dr Pepper.

(two of each!). Then they made sure I was ok, and sent me home to

stay in bed with my head only slightly elevated.

I did manage to stay in bed except for going to the bathroom. I sat

up to drink gatorade, because they said the more fluids you drink,

the quicker you flush the dye out of your system. They said keep

the head slightly elevated, so the dye doesn't travel up, but not

too eleavated so the spinal fluid doesn't leak out of the puncture.

Too much fluid leaking out is what causes the bad headaches.

According to my hubby, it happens when there is not enough fluid for

the brain to float comfortably.

They must have not used as much drugs as when I have my injections,

because I didn't sleep much. I did read a paperback and spent quite

a bit of time on the phone. Watched a little tv.

I was feeling pretty good, but I figured I should follow

instructions and stay in bed anyway. I finally got back up after

over 24 hours and got a little bit of paperwork done.

Probably the most painful thing was that they put the IV in the

underside of my wrist and it burned when I would bend it too much.

I put a lidoderm patch over it, and that helped. I have worked all

day today, and feel fine.

>

> Maybe they can do a " sub-cysternal " or whatever you call the ones

> where they go in thru the neck? That's what SB just had--maybe she

> can give you some info. I too was wondering if they'd have trouble

> getting into my L5-S1 region, but they went in fine, and I even

saw

> the dye moving up the spine while I laid there!! My Mylogram went

> fine, but I had al ot of pain afterward for a few days. Not back

> pain, but nerve-like " heaviness " in my legs and lower back. That's

> the part I wouldn't want to repeat. Then I was all " out of

balance "

> for several weeks getting migraine like headaches at work and

stuff.

> It's amazing how one little thing can cause you to get all out of

> whack.

>

> Carol V (CA)

>

[Guest guest]

SB,

Thanks for describing what the procedure is all about, it was very

informative. Did you get the results of it yet?

> >

> > Maybe they can do a " sub-cysternal " or whatever you call the

ones

> > where they go in thru the neck? That's what SB just had--maybe

she

> > can give you some info. I too was wondering if they'd have

trouble

> > getting into my L5-S1 region, but they went in fine, and I even

> saw

> > the dye moving up the spine while I laid there!! My Mylogram

went

> > fine, but I had al ot of pain afterward for a few days. Not back

> > pain, but nerve-like " heaviness " in my legs and lower back.

That's

> > the part I wouldn't want to repeat. Then I was all " out of

> balance "

> > for several weeks getting migraine like headaches at work and

> stuff.

> > It's amazing how one little thing can cause you to get all out

of

> > whack.

> >

> > Carol V (CA)

> >

>

[Guest guest]

the doctor's office called today and left a message that they needed

to speak to me. I was afraid they were going to say we needed to do

the myelogram over, but it turns out that while looking at my films,

the doctor noticed a growth on one of my ovaries. So, they

scheduled me for a pelvic ultrasound friday after work.

funny thing is, I have been coloring a little circle in that area on

the pain chart all along. one doctor several years ago said that

groin pain is consistent with the back issues.

> >

> > SB,

> > Thanks for describing what the procedure is all about, it was

very

> > informative. Did you get the results of it yet?

> >

> >

>