ACM + neurogenic bladder/bowel

[Guest guest]

I've had a 2nd decompression in Dec. and recently found out I have

neurogenic bladder - which- as Dr. B put is- is strongly sugestive of

TCS/OTFT.

Although not formally diagnosed, I have save problem with my bowel as I

do with my bladder - namely I need to really use my abdominal muscles

to void - I'm worried what effect this has on my ACM.

Any words of wisdom? Am I due for a TCS surgery or can I continue to

exist in this state? How do you know if you're straining is " doing

damage " / exacerbating ACM?

[Guest guest]

I got the answer to this question from Dr B last nite so I figured I'd

post it.

He said I should get a new urodynamics study done and send it to him.

If there's no improvement he suggested sectioning the filum terminale.

When I asked if I risked permanent damage if I waited too long to have

this done he said Waiting for a long time could cause neuro and kidney

damage

So I've scheduled an appt with the urologist ... the fun never ends

>

> I've had a 2nd decompression in Dec. and recently found out I have

> neurogenic bladder - which- as Dr. B put is- is strongly sugestive of

> TCS/OTFT.

>

> Although not formally diagnosed, I have save problem with my bowel as

I

> do with my bladder - namely I need to really use my abdominal muscles

> to void - I'm worried what effect this has on my ACM.

>

> Any words of wisdom? Am I due for a TCS surgery or can I continue to

> exist in this state? How do you know if you're straining is " doing

> damage " / exacerbating ACM?

>

[Guest guest]

question:

Responding to the posts about the unhappy bladder...

What exactly is a urodynamics study? Is it as much fun as it sounds?

I had been diagnosed with mild cystitis and cystocele something or

another.. this was

BEFORE the CM diagnosis. The test was to fill my bladder until I thought I

would float

away. Just wondering if it's the same test. UGH!

[Kathleen] response:

http://kidney.niddk.nih.gov/kudiseases/pubs/urodynamic/index.htm

Above is a good link for the test. It's not the nicest test, but it does

show if you have neurogenic bladder.

When they had filled me up as much as I could stand, I could pee. They

stood there waiting for me to pee, then left the room, and about 1/2 hour I

was finally able to go. I think they got tired of waiting for me! LOL

Kathleen

CM I, hydrocephalus,cervical instability, EDS.

suboccipital craniectomy and VA shunt 1990, suprasinus decompression 1998,

craniocervical fusion 1999, shunt revisions, LP shunt 2003, C5-6 fusion

2004, Lumbar reservoir., Craniocervical fusion redo 2006. Diagnosed with TCS

2006.

.

[Guest guest]

Greetings all

I know that bladder shyness can be a problem -- I " m NOT at all shy about bodily

functions ( having been a nurse - you SOON get past that one - LOL ) - but like

Kathleen - hooked up and time to " pee " arrived during testing ---and gosh durn

- NOTHING would come !

the doctor and nurse were very understanding - left the room but stayed within

shouting distance - LOL -- and it still took awhile to get that let down started

..

LATER I realised - I'd NOT felt a thing in that urge sense - LONG after they

said gee - by now you should given the volume introduced -- ( ended up saying

I'd hit three times normal volume without a twinge - ) - BUT If I have HAD to

skip the " clock timed voids ) I use to make sure I DON " T forget to go to that

bathroom --- I've HAD that same " no let down " problem hit in the past when NOT

being tested too !

I did ask the urologist - his best guess is I have times -days of almost no

sensation ( some days it's the oppisite and I'm thankful to reach that bowl

before I flood the suroundings too ) -- but his guess is = when I do overfill -

the nerve functions to let down are MORE disfuctional too .

I mostly wanted to add - that for me this testing was pretty painless -- I felt

the cathter breifly being inserted some ( NOT pain though ) - then pretty much

NOTHING ... just that shy bladder pattern -- ( and heck = I'll ignore other gals

around IF I've hit that OH geepers = I may not make it there pattern too - LOL -

ta HECK with modesty - were all just humans afterall .

One last thought too -- I use those timed voids to help ensure urine ISN " T

backing up to the extent it can presure dammage the kidney's .

I don't get bladder infections much at all - but did agree to let my NEURO know

if I got more than one in a six months timeframe as a monitoring point -- ( my

primary would be the more likely doctor to KNOW it had happened so telling the

neuro is an agreed upon monitoring step -- IF it were to happen / they both feel

it's a warning sign to consider repeating the testing ect /and or consider

intermittant cathing ect .

My having ms too - has confused the issue of cause to some extent -- / but the

infection " flag " is one that would apply to either acm / OR MS ect .

I had been using a presure on the bladder manuver to help ensure I DID fully

empty the bladder ( knowing that I DO retain some urine in my on and off pattern

of glitches with bladder functions -- they said I could continue with this as

needed safely / - but NOT to try " pushing " with either bowel or bladder

difficulties at all -- to talk over any changes with my primary /and neuro if

they do unfold instead . ( taking narcotics - I DO have difficulties with bowel

functions as well ---and use a technique taught to para's /quads to get that

stool down into the lower area of the bowel and moving on OUT without

breath=holding /pushing .

I was taught in nursing school that we should NOT try the technique without

instruction from a health pro. since it can easily cause tissue dammage done

" wrong " - but most communities will have a brain/spine rehab clinic setting with

a bowel and bladder " instructions on interventions teaching loup " available we

can consult with if needed . I can add this technique DOES work well (

thankfully = no more headache blowup's or black pulsating spots in my vision

trying to " push " that stool out !

I don't mind explaining more fully -- just dont want to imply I'd try it without

being shown /discussed HOW since it could harm someone too .

in Paradise

[Guest guest]

After reading 's post I thought of another thing I've done for quite a

while. I keep a glass of water going all day long. As soon as I'm done

drinking the glass, I promptly go fill it up and urinate. Like said, I

rarely have the urge to urinate, so this is an easy way to remind myself to

use the bathroom. I just finished my glass of water, so off to the bathroom.

Kathleen

CM I, hydrocephalus,cervical instability, EDS.

suboccipital craniectomy and VA shunt 1990, suprasinus decompression 1998,

craniocervical fusion 1999, shunt revisions, LP shunt 2003, C5-6 fusion

2004, Lumbar reservoir., Craniocervical fusion redo 2006. Diagnosed with TCS

2006.

[Guest guest]

I just wanted to add something here too. I used to have frequent urination that

developed into painful bladder spasms leaving me running for the bathroom to pee

every 5 minutes. I'd also have occasional leakage after voiding. Occasionally,

I'd lose control of my bowels if I couldn't get to the bathroom in time. Very

embarassing. They all turned out to be TC according to Dr B. I was detethered

11/06 and all of the above symptoms are gone.

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[Guest guest]

Sounds like a test I need to have done. Actually I was supposed to have that

done years ago but got down so bad for long time and cancelled. Then times

passed and it never happened. Back when I thought this was all MS. I was having

major flair ups back to back, getting blown off by doctors and just wasn't up to

it.

Guess need to ask my neurologist about this. Lots of problems down yonder.

Must not just be ACM as I have SM. Luckily I was able to furnish the more

delicate info to his nurse so she could write it down for him to see. Sometimes

male docs don't handle this kind of info too well. And being male cannot fully

understand!!

Or I may call my gyn as he has been informed and very concerned as to cause of

issues. Irregardless of actual cause it needs to be checked out. May be some

meds or whatever to help us with this. My situtation has evolved over the years

so don't need Ditropan now!

Thanks for info on test.

Dawn, TN gal

.......As you would do for the least of these so have you done unto me--the

Creator

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[Guest guest]

Thank you for all the info. Ok, my situation is much like yours now. It

has evolved and gyn had agreed to stop Ditropan as no longer that kind of

problem.

I also have to remind myself. Losing proper sensations down yonder

progressively.

Good to know it is just part of the overall nonsense we have to endure.

Dawn, TN gal (petsmom ASAP)

.......As you would do for the least of these so have you done unto me--the

Creator

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[Guest guest]

I also had these symptoms. Key word HAD! I was detethered on 12/5. My

girls at the end of December and we all are doing better.

>

>To:

>Subject: Re: ACM + neurogenic bladder/bowel

>Date: Wed, 31 Jan 2007 17:22:30 -0800 (PST)

>

>I just wanted to add something here too. I used to have frequent urination

>that developed into painful bladder spasms leaving me running for the

>bathroom to pee every 5 minutes. I'd also have occasional leakage after

>voiding. Occasionally, I'd lose control of my bowels if I couldn't get to

>the bathroom in time. Very embarassing. They all turned out to be TC

>according to Dr B. I was detethered 11/06 and all of the above symptoms

>are gone.

>

>

>

>

>---------------------------------

>Never Miss an Email

>Stay connected with Yahoo! Mail on your mobile. Get started!

>

>

[Guest guest]

Hey - You may just ask one of your docs for a referral to a urologist-

they've heard it all anyway and they're the ones that do the

urodynamics tests

[Guest guest]

TCI has people get lumbar MRIs to look for the obvious version of TC -

in which the conus is not lying the proper position (I think around

L2 .. but don;t quote me on it) TC doesn't always show up on MRI- my

MRI was negative but my urodynamics study was positive ... So MRIs

have a lot of false negatives.

If I were you I'd call your TCI nurse and tell her you want to be

checked out for tethered cord and request that they fax a referral to

your MRI testing site - I don;t know if you need a referral from your

insurance company but the TCI med. sec. will know that.

good luck

>

> Here's a question. If I suspect TC, so I need to get the

uradynamic

> test done, or does a lumbar MRI show the TC? Is the MRI and

symptoms

> enough to make that diagnosis?

>

> I'm scheduled for a full spine MRI tomorrow, which I'm to take with

> me to TCI. I suspect TC, BUT as my TCI appointment is in a week I

> don't have time to get another test done before I go.

>

> BTW, I had this test done 2-3 years ago, before being dx with CM.

The

> urologist said I had something pressing on my bladder, he assumed

was

> my uterus or a cyst which scared me to death. Went to my OB/GYN and

> got an internal ultrasound which showed no such thing. I was also

dx

> with interstital cystitis and I'm on ditropan xl 15 mg. It helps

> some, but still getting up several times in the middle of the

night.

> It's not so bad during the day, but when I lay down forget it. I

have

> to go even if I just went. I feel like I have 3 or 4 bladders and I

> forgot to empty one.

>

> Thanks for anyone who can answer the above question. I just want to

> make sure I'm as prepared as I can be for this appointment.

> Thanks!

>

> in Baltimore, still trying to figure out how to add a

> signature to the end of my posts!!!

>