www.incontinentsupport.org

Since I was a teenager I have had back related issues and eventually in the mid ninety's I had my first L4 /L5 diseconomy operation.
I guess before this op I i have had whats called urge innocence but managed to keep this under control,and avoid most of the time any accidents.
In May last year I was diagnosed with Cuadia Equina syndrome CES after suffering loss of feeling in both legs. the MRI found a disc burst central spine L5 and had an emergency operation.
before and since the operation I was getting more frequent urge issues and these have if anything got worse due to nerve damage.
I have no problems when in bed at night just the have to go frequently sometimes and quickly when waking up,so the incontinent issue is mainly during the day and when driving.
Has anyone else had similar issues /CES. I am using Moliform pads during the day to get by and trying other products.
I have not been further than my family doctor and I am considering talking to a urologist but is there any point?

Hey Rorg,

I would have to say that is probrably what my problem is too. I have not had any diagnosis but I know I have had lower back issues for some time. It wouldn't surprise me if I have some nerve damage down there that is causing a whole gambit of issues including incontinence.

I don't know if there is a point talking to a urologist or starting with the family doctor. I would personally start with the family doctor as they can refer where needed depending on the cause. You (and I) may need to see a spinal specialist to start correcting the issues more than a urologist. And, if there is permanent nerve damage, there may not be a fix at all.

Sorry to sound so pessimistic but that is the case with our bodies. We only get one.

_________________
"Why is the rum always gone?" - Captain Jack Sparrow

"There is no human problem which could not be solved if people would simply do as I advise." -
Gore Vidal

Hi msshendo,
no pessimistic is fine by me.I pretty much self diagnosed once I knew that having caudia equina was the problem I had.
I am considering Chinese medicine and acupunture which has worked well in some cases.
R

Hi there and sorry to heare about your cauda equina syndrome. It can be a difficult thing to live with so it sounds like you have not done to badly with it. This is a useful site about the condition.

I would definitely suggest going to a urologist. It ought to be helpful to work out the best way of managing your bladder - especially as it may not stay the way it is right now. you may also be able to get advice on other methods of collection - I use external catheters and bags for my drainage, for example, which is much handier for emptying as distinct from have to change.

As far as alternative medicine is concerned I would be very wary. None of this stuff has actually demonstrated it works and in your case you are asking it to repair nerves - something that medicine can't actually do. It is hard to see how and Chinese medicine or accupuncture might help.

Hello Wheels5894.
Thanks for the link and advice,I guess its a day to day thing, some days are not bad others I just seem be like a tap/forcit for the yanks out there.
Certainly it can depend on what the fluid intake is and I do drink a lot of water,what only adds to the frequency,which can be pretty embarrassing when at a meeting or driving and not being able to find a stop.
I will see a urologist soon and see what they suggest.

rorg, I too have CES, but it has only effectived the left side. I have more back pain than anything else. The actual injuy site is located between L5/S1 so I also have a neurogenic bladder, and bowel. I'm kinda surprised that you haven't seen a Pain Mgt doc.

There are a few others here that have the same type of injury. If your only using pads consider yourself lucky. Do you have a lot of pain associated with your CES?

Hi Johnstone.
Yes pain is a regular part of the and complicated by IBS but feel all is related.
my Neuro who is excellent just sent me home to my local doc.
Since the op (last May) I have had physio,and ostio treatments which have helped with the pain.wake up in pain most day's which is relieved by a hot shower.I do not want to rely on medication due to side effects.
Some days are ok with just pad protection though yesterday was a bad day and had a complete incontinence moment,related this to IBS and should have had more protection.
I will be getting more professional advice soon.

Welcome the wonderful of CES. It is not fun and I have it a a chronic part of my life. Pain is also a regular part of my life as is diapers/pads/nappies whatever you want to call them. I have been poked and prodded by more doctors than I can remember. Most have tried various attempts to cure my symptoms without correcting the cause. Oh the joy.

Welcome aboard.

Doug

_________________
When life hands you a lemon, make lemonade.

Hi Doug.
Yes I am somewhat resolved to the fate of CES and getting on with life despite thè condition.its great to have this forum to at least know other sufferers are out there.
I am self-employed and this means no state healthcare benefits in Ireland,.
I am managing to keep a basic private cover going but this is minimal
therefore I have to save to go to see any specialists.
like you I think they don't know enough yet and it's just a matter of getting on with it as best we can.
R

rorg,


You can read several different articles about CES on the Internet and this might help to understand the effects of this type of injury. It all depends on the person, extent of nerve damage and it's location how we are effective. I was just bladder incon for a long time and slowly became bowel incon. If you see a urologist they can do several tests but don't expect much. They will tell your incon is due to nerve damage in the spine and explain how the spine carries the signal to the brain and bladder but the tell you they have no fix for the problem(s), (it's nerve damage). I would guess most people with CES suffer a neurogenic bladder, and/or bowels (urge incontinence). I'm certain this is very common in those with CES due to the lower level injury of the nerves. My site of injury is L5/S1, and with the exception of my back, only the left side of my thigh, and leg are effective with some effect to the left foot but not that often. I know CES can effect either the left, or right side, and it is very common to effect both sides. Again,....it just depends on the individual and what nerves have been injured.

As far as the pain goes, I would suggest you see a Pain Mgt doc. I get a LOT of pain in the muscles in my back and also an area know as the left SI joint. When it comes to incon products go with what work the best for the level of coverage needed. I wear the Abena X-Plus diaper with snap plastic pants for added protection. If I am have a lot of pain issues I like the ease of using the snap pants compared to the pull-on style. I guess the most important thing I can tell you about being incon is DON'T let your incon mange you, but rather you need to manage it.

If your limited to what specialists you can see due to funds, go where you can do the most good a go see a Pain Mgt doc. I'm certain there is nothing the urologist can tell you that you don't already know.

Hope this helps.