Loss of bowel and bladder control

[JanM]

Hi - I'm interested in information about how severe lumbar curves can cause loss of bowel and bladder control. What is the cause and what are the symptoms? I understand that once it happens, it's irreversible. Is that true? Any information or a place you can direct me to information would be much appreciated. Thanks

[CHRIS WBS]

Hi Jan,

I have a severe lumbar curve and quite honestly I've not had one surgeon tell me that that's something I need to think about if I elect to forego surgery. I've had other forebodings such as inability to walk and nerve impairment. On the other hand, surgery can unfortunately cause loss of bowel and bladder control. I don't know what the stats are on that. One surgeon did tell me that dribbling is oftentimes a consequence of surgery that requires fusion to the sacrum.

Chris

[Karen Ocker]

One surgeon did tell me that dribbling is oftentimes a consequence of surgery that requires fusion to the sacrum.

ChrisWBS

Oftentimes???? That seems pretty drastic and I have NOT seen that as an often complication to fusion to the sacrum. Who said that???

In any case I have never had contact with a person who was fused to the sacrum and had problems with bladder and bowel. If that happened so often then I would have heard it on the revision forum where the surgeries are more complicated.

I just did a search-not exhaustive-in the National Library of Medicine on-line and couldn't find anything about loss of bowel/bladder control fusion to the sacrum for scoliosis surgery nowdays. There were many articles about persons with scoliosis and cerebral palsy, spinal cord abnormalities, fractured spines, spinal bifida and syryngomelia which might have had such problems pre-op.

Maybe this happened in the past but with the usual neurological monitoring of the spinal cord/nerves during surgery I suspect this is rather remote.

Maybe someone else on the forum wants to delve further; they can go to that site and look around.

[CHRIS WBS]

One of the surgeons I saw in Chicago mentioned that to me at my second appointment with him. At that time I felt that he was trying to do his best to dissuade me from surgery, because every time I brought up something positive about surgery, he would turn it around into something negative. My gut feeling is he just did not want to do my surgery. Quite frankly, I don’t know where you people are finding all these encouraging doctors. After the last one telling me I’m at high risk for paralysis, I found myself wondering why anyone would consent to such risky surgery. Perhaps my case is unusually complex.

Chris

[Singer]

Chris, I SO wish you could have a consultation with Dr. Boachie. I know it's very impractical for you and difficult logistically to consider, but I wish you could see someone who is completely used to especially challenging cases.

Just thinking out loud.

Best,

[Janet]

Chris,

I agree completely with Singer's suggestion to have a consultation with Dr. Boachie. Originally I set up my appointment with him just to get a third opinion, but the minute he started the conversation I knew he would be the surgeon for me.

Yes, there was the extra expense and time for me to go to NYC, but I feel it was, and will be, worth every penny and then some.

Best wishes,
Janet

[JoAnn5]

I had trouble with bladder control after my surgery... but my family dr. prescribed Detrol which helps.

[berta@aloha.net]

OK Jan,
I'm a good example. I just had surgery 6 weeks ago, had a 78 degree lumbar curve and was corrected to 23 degrees. I have no problem with either bowel or bladder control. In fact, I THINK that my bladder is actually better than before. I feel like there's less pressure on it now maybe. Before, I had the sensation that I had to pee more often, almost like when you are pregnant. Now it seems I don't get the sensation as early when my bladder is filling up!
I am sure that eveyone is built slightly different inside there, so it may vary, but with me that's what seems to have happened. I'm still a bit slow in the bowel department, but because of my medication, which will change as soon as I'm off them. (which happened with another surgery I had) SO, maybe that's good new for you!?

[JanM]

Hi all - thanks so much for the input. I really appreciate it. Actually my concern was with losing bowel and bladder control if you don't have surgery. I was under the impression that some severe lumbar curves can cause permanent loss of this control if the scoliosis is not corrected. The lumbar curve cuts the nerves or something, I'm not sure. I wanted to know if anyone knew more about this, what caused it, and if it happens, if it's really irreversible.

Berta - I'm so glad to see you're doing so well. Can I give you a call sometime - maybe this weekend?

[lberg]

Hi there, I quite often have a very heavy feeling on my bladder almost like a bladder infection that never seems to progress i too worry that as i age and my curve is increasing that this will eventually become a huge deal. My ortho had no answers i guess progression and symptoms are different with everyone. sorry not much help!

[berta@aloha.net]

Hi Jan,
I forgot that was you with the JanM. (not T) How are you anyway!? I was wondering where you were since I hadn't heard from you, especially since my surgery. Call anytime, or email.
And about the bladder, etc. without surgery. Yes, I think it may get worse as one's curves get worse, and as we age too, just like any of the organs in our body. I really do feel the pressure and sensation to go was worse before my surgery.

[Houston Curves]

I've done a lot of reading and research as I am now facing the surgery. I have also seen 4 different surgeons in Texas (a pretty big state). I can't quote any articles here, but I did read that severe lumbar curves can lead to loss of bowel and/or bladder control. If that happens, then scoliosis surgery is no longer a non-emergent surgery. They have to operate immediately or you may lose this forever and it may even lead to more severe complications and death. When I visited each surgeon, their first questions were about whether I had lost any bowel or bladder control. The really good scoli surgeons are always on the look out for these warning signs.

Ann

[cathydownunder]

I think what you may be referring to is called Cauda Equina (sp?). I may be wrong but I believe it's when the nerves to bowel/bladder are severely compromised causing loss of control of these organs.
It can happen with bulging discs and other spinal problems so I guess a severe scoliosis could have the same effect as nerves become compressed.
It does call for immediate intervention before permanent damage is done.
I hope this helps.

[Singer]

This discussion just reinforces my decision to have the surgery, since my main curve is lumbar.

One month to go...

[Houston Curves]

The Cauda Equina is the part of the spine where the spinal cord splits out into individual nerves - it's the end of the actual spinal cord. However, there is a Cauda Equina syndrome. I found the following on the American Academy of Orthopedic Surgeons' website (THANKS for putting a name to it Cathydownunder! That made it a lot easier to find):

Cauda Equina Syndrome
Low back pain is common and usually goes away without surgery. But a rare disorder affecting the bundle of nerve roots (cauda equina) at the lower (lumbar) end of the spinal cord is a surgical emergency. An extension of the brain, the nerve roots send and receive messages to and from the pelvic organs and lower limbs. Cauda equina syndrome (CES) occurs when the nerve roots are compressed and paralyzed, cutting off sensation and movement. Nerve roots that control the function of the bladder and bowel are especially vulnerable to damage.


If you don't get fast treatment to relieve the pressure, CES may cause permanent paralysis, impaired bladder and/or bowel control, loss of sexual sensation and other problems. Even if the problem gets treatment right away, you may not recover complete function.

Causes

CES may be caused by a ruptured disk, tumor, infection, fracture or narrowing of the spinal canal. It may also happen because of a violent impact such as a car crash, fall from significant height or penetrating (i.e., gunshot, stab) injury. Children may be born with abnormalities that cause CES.

Diagnosis and treatment

Although you need early treatment to prevent permanent problems, CES may be difficult to diagnose. Symptoms vary in intensity and may evolve slowly over time. See your doctor immediately if you have:


Bladder and/or bowel dysfunction, causing you to retain waste or be unable to hold it.

Severe or progressive problems in the lower extremities including loss of or altered sensation between the legs, over the buttocks, inner thighs and back of legs (saddle area), and feet/heels.

Pain, numbness or weakness spreading to one or both legs that may cause you to stumble or have difficulty getting up from a chair.

To diagnose CES, the doctor will probably evaluate your medical history, give you a physical examination and order multiple imaging studies.

Medical history: Describe your overall health, when the symptoms of CES began and how they impact your activities.

Physical exam: The doctor assesses stability, sensation, strength, reflexes, alignment and motion. He or she may ask you to stand, sit, walk on your heels and toes, bend forward, backward and to the sides, and lift your legs while lying down. The doctor might check the tone and numbness of anal muscles. You may need blood tests.

Imaging: You may get X-rays, MRIs (magnetic resonance imaging) and CAT scans (computerized tomography) to help the doctor see the problem.

Surgery

If you have CES, you may need urgent surgery to remove the material that is pressing on the nerves. The surgery may prevent pressure on the nerves from reaching the point at which damage is irreversible.

Living with CES

Surgery won't help if you already have permanent nerve damage. In this case, you can learn how to make living with CES more tolerable. Some suggestions:


In addition to medical personnel, you may want to get help from an occupational therapist, social worker, continence advisor or sex therapist.

Involve your family in your care.

To learn all you can about managing the condition, you may want to join a CES support group.

Managing bladder and bowel

Some bladder and bowel function is automatic, but the parts under voluntary control may be lost if you have CES. This means you may not know when you need to urinate or move your bowels, and/or you may not be able to eliminate waste normally. Some general recommendations for managing bladder and bowel dysfunction:

Bladder: Empty the bladder completely with a catheter 3-4 times each day. Drink plenty of fluids and practice regular personal hygiene to prevent urinary tract infection.

Bowel: Check for the presence of waste regularly and clear the bowels with gloved hands. You may want to use glycerin suppositories or enemas to help empty the bowels. Use protective pads and pants to prevent leaks.


June 2001