Urodynamic and SSEP testing

[rendean]

I understand what these are and why they are done. Even know how they are done. My question about is the discomfort level involved. Anyone care to share?

Thanks,
Rendean

[rendean]

Thank you. I will be back to post after the testing.

[Octarine]

Good luck, and be sure to come back and tell us how it all went!

[rendean]

Thanks for the input guys!. No one has told horrible stories of pain and suffering, lol. Can't be much worse than some of the bad days I've had without the medical testing. I take it that the SSEP is similar enough to the EMG/NCV studies. I appreciate all the comments and the support the forum has provided!

Rendean

[hbananas]

It's different for everybody, isn't it?  I thought the EMG/NCS was a cakewalk.  The SSEP made me whimper a bit, but I didn't have to ask her to stop or anything.

[shoshin]

I thought the SSEP was less unpleasant than the EMG/NCS and, although I wouldn't do any of them for fun, none were horrible. However, there have been people on the forum who have had bad experiences with all of them. I guess just hope for the best and like Kathy says, sometimes you have to put up with a little unpleasantness in the quest for answers.

sho

[Fluffysmom]

I didn't find my urodynamics testing uncomfortable, but I often have discomfort in my urethra.  My uro-gynecologist prescribed some lidocaine gel to put there when I'm uncomfortable.

If you're uncomfortable after your testing, you might ask for some lidocaine gel, if you're not allergic or something like that!

I'm seeing a new rheumatologist on March 16 to confirm/deny Sjogren's Syndrome, too.  I've checked out Sjogren's World, and read other's experiences with the lip biopsy.  Many say it's a piece of cake, others wish they hadn't had it done.  

If it takes that to decide whether I have it or not, I'm all for it.  I little pain and the possibility of a small numb spot on the lip is a smal price to pay to either rule out Sjogren's and get on with diagnosing what IS wrong with me, or getting that diagnosis and being treated properly for it.

I haven't had a SSEP, but I feel like I've been on a rollercoaster ride, too.  I agree; these people are the greatest!

Take care,

Kathy

[rendean]

Thanks all for your input!!

The urodynamics is probably what I'm dreading most snce I've had many experieces with caths and resulting cramping. Octarine, thanks(!!!) for the suggestion regarding the ibuprofen as I am very susceptible to bladder spasms. Ess, I'm still going out for that lunch treat as well.

Hbananas, was the SSEP as bad a regular EMG and NCV? Those are uncomfortable but tolerable.

Thanks to all.Coming into a situation with knowledge (good or bad) seems to suit me well. At least this neuro is doing thinks the right way, after so many years of incomplete work-ups. What I actually am dreading is the lip biopsy to confirm Sjogren's..yikes!

Once again, this forum has given me support and a sense of calm about various issues and I know I have found the best bunch of folks to support me through this rollercoaster ride.

Thanks again!
Rendean

[hbananas]

I found the SSEP to be very uncomfortable.  Did you ever touch an electric fence to see what it felt like?  When they did my legs it seemed to be about half of that.  Not like it left any marks behind, but it was a full few minutes of burning pain in pulses.  My arms weren't uncomfortable at all.

[essdipity]

Gosh, I'm surprised to hear about pain from uro testing, since mine was so simple. Maybe it has to do with how good the tester is at the job. Poking around and not quite getting on target can be a problem, as I learned when I had to start cathing myself. That caused me some burning for a while.

The test Quix mentioned that she 'couldn't make happen' was one I had difficulty with but did do. They pump a lot of sterile water in, with probes everywhere, and then have you empty. That took me 2 minutes and 20 seconds to accomplish, really abnormal.

I agree, Quix, more on these tests and what they mean would be very welcome.

ess

[Octarine]

Rendean,  I don't want to scare you, but from my experience it would be a good idea to take a painkiller an hour before the urinary procedure.  

I've had pain from both bladder tests that involved catherization:  urodynamics (5 yrs ago) and cystoscopy (Dec. 08).  Because of the bad cramps and pain from the first one, my neuro prescribed lorazepan (an anti-anxiety drug) for the cystoscopy and advised me to take twice the minimal dose 2 hours beforehand so I'd be relaxed.  That helped a lot, but I still was in tears afterwards and wished I'd brought naproxen or ibuprofen with me.  

When I asked for something for the pain, the nurse said they don't give out narcotics!  Did I feel like swearing at her for her assumption and lack of compassion?  You bet.  But all I could do at that moment was curl up more.

In both cases, the pain was gone after an hour or so.  There was some stinging and burning, but mostly it was intense cramping.  I've had it before on emptying after ultrasounds that required a very full bladder.  

I have another urodynamics test coming up and will take both the lorazepan and a painkiller beforehand.

This reaction must be pretty rare since it caught both sets of doctors and nurses by surprise.  My uneducated guess is that the procedures triggered the spasms that give me frequency, only in a much bigger way than usual.  I do know that I was able to empty my bladder completely after the cystoscopy, when normally I retain >150 cc.  So that's the good side of spasms, I guess.

Quix, please do post on the different urinary problems and testing.  Thanks!

[rendean]

Thanks Quix. I, for one, would be interested in a post on the different urinary problems and the related testing.

As for the multiple caths and the residual burning and stinging, I had already assumed I would have that. Years ago, had multiple UTI's and am quite familiar with in office caths and the stinging afterwards.

At least this new neuro is methodically going down my list of symptoms and confirming what he can with diagnostic testing. He's an improvement over the MS guy who just wrote a script for every symptom I mentioned, even without an MS dx.

Thanks,
Rendean

[Quixotic1]

I can comment on the urodynamic question.  I didn't find it too bad in terms of being uncomfortable.  The discomfort is that of being catheterized multiple times.  My doc is so clam and low key and compassionate that the modesty factor didn't come into play.

However, I had urethral burning and stinging for a good day and a half after the procedure.  It felt a little like I had a UTI.

Also, at one point I was supposed to empty all the fluid they had run into my bladder outwhile they had small pressure catheters in my vagina, bladder and urethra.  Couldn't do it.  Not gonna happen.

Turns out I have a classic case of Detrusor-Sphincter Dyssynergia or DSD.  This is a common pattern both in normal women and in MS.  I'll do a post on the different causes of urinary problems like incontinence and retention and how they show up on the testing if people are interested.

Quix

[rendean]

To answer the scheduling question. Yes and no. Yes to the SSEP - March 11. The appt. with the uro-gyn is the week prior and he is to scheule the urodynamic testing - but no the actual test hasn't been scheduled. I also have an appt. with a new rheumatologist at the insistentence of the new neuro to confirm/deny the Sjogren's syndrome. Quite a line-up but at least he's working towards an answer!!

I like the lunch treat after the uro testing. Sounds like a good reward!

Thanks,
Rendean

[essdipity]

Hi, Rendean. I had all the evoked potentials testing in '06, one after the other, and none caused me an problems or pain. Other folks here, though, report diffeent experiences, including bad ones. Not sure if the difference is just between individuals or whether it has to do with the skill of the testing person. I'm know others will chime in here.

As to urodynamics, I had that late this past fall. It doesn't hurt at all, but it's very undignified and awfully 'personal.' I reported then to the forum that afterwards I treated myself to a nice restaurant lunch, sort of making up at one end for what I suffered at the other. That worked just fine!

Do you have these tests scheduled?

ess