Cauda Equnia Syndrome and Reflex Sympathetic dystrophy

[Dannyj1981]

Hello

I am a twenty year old male and in Dec 2001 I was told I had a very large disc herniation at the L5 S1 level. I was referred to a neurosurgeon but unfortunatley I suffered a very nasty fall and my symptoms rapidly deteriorated. I was sent to a neurosurgical unit with Urine retention ( 2000cc) and fecal incontinance also severe pain in my legs and lower spine. After a repeat MRI scan which showed the disc was now pressing centrally  .
      I under went emergency Laminectomy , disckectomy and spinal decompression of L5 S1 . Four days post op my symptoms again deteriorated , and upon MRI examination I had a large Epidural Haematoma and more disc had ruptured and i again under went emergency surgey to decompress the cord.
      As a consequence I now have a Indwelling catheter,fecal incontinance and limited use of my legs also I have impotence and numbness from the waist down. And extreme pain which is bilateral in my legs and Genital/Rectal areas.
      My neurosurgeon repeated a MRI scan and it showed large amounts of scar tissue in the surgical area which is mainley concentrated around the nerve roots.
      I have also noticed that when I do manage to walk with crutches I can only manage a few steps before the leg pain levels increase I also suffer from Reflex Sympathetic Dystrophy in my left leg following Compartment Syndrome and Fasciotomy in April 2000
      Is there any surgical treatment which is availible to me to treat my symptoms? Is lumbar spine fusion effective in the treatment of my condition? What options do I have ?

Yours Gratefully

Danny

[pak]

I wonder if anyone has looked at the results of their spinal mri and have seen tarlov cysts. Most doctors do not know anything about this. Please do not let them tell you that it does not cause any problems. their is a tarlov cysts site you can visit. You will get a lot of info there. It is usually in the S region.S1; S2; and S3. It will cause bladder problems, numbness of the buttocks ; pains in your thighs, pains down a leg. foot problems, bowel problems; I just had surgery on my S section. It will cause you not to be able to sit and leg weakness. I just telling you because if you don't look at your own results of you mri you may not even be told you have it, always get a copy of your results. It will cause a lot of pain in your buttocks too. Just be ware of tarlov cysts, I had two of the on my S2. I had gotten a copy of my mri result and the doctor had never told me that i even had cysts of anykind. my email is ***@**** if anyone has any questions. We doctors to take these cysts more serious. Thank you, Pat

[wishIwasfishing]

   I have found a great site with a wealth of information on Cauda Equina, as well as a support group for this devestating condition.

http://www.smartgroups.com/groups/cessg


http://www.caudaequina.com/nav.htm

http://www.caudaequina.org/index.html


      - jon

[Celine Fan]

Danny,

I have Residual Cauda Equina Syndrome.  Please e-mail me to chat...sorry to hear about you situation, especially as you are so young ;-(  ...***@****

[CCF-Neuro-M.D.-JT]

Very sorry to hear about your symptoms. Unfortunately, if there was permanent spinal cord damage either by the "nasty fall" and herniated disk or the hematoma, then there is not much anyone can do to reverse your neurological problems. However, you may consider a second opinion by a specialized spine neurosurgeon to see if there is anything they can do about the scar tissue. (if you are in the CLeveland area, Drs. Ed Benzel and Ian Kalfas are excellent spine surgeons) As for the your pain and RSD, consider a pain specialty clinic for further evaluation and treatment options. Many seizure meds like tegretol, dilantin, topamax, trilepta, gabatril, and neurontin are known to help with nerve pain. Elavil also. Some RSD patients respond to surgeries that remove the collections of nerves that supply pain fibers to different areas of the body. Electrical stimulators have also been of some benefit. Start with an second opinion by an expert neurosurgeon and consider a pain clinic.

Don't give up hope. Although we're years away from a cure, there is active research going on for spinal cord injury and repair. Hang in there and good luck.

[wendean]

Hi there

I had an anterior/posterior laminectomy on L4/L5/S1 nearly 2 years ago.  During surgery, the ortho cut my iliac vein and therefore couldnt insert the cage.  She had to get a cardiovascular surgeon to repair the vein.

She then tore the dura.

After surgery, when I was discharged, they never checked if my bladder was working.  I got home (3 hours drive) and had to be admitted at my local hospital and a catheter was inserted for 2 months after surgery.

I now have bladder retention, my bowel doesnt work, without heavy medication, I have no sexual feeling and am numb on my right buttocks and the vagina and anus.
If I walk, my legs feel so weak, as if they cant keep me up. I have incredible pain, but no more than before the surgery.

I am looking for someone to tell me whether the damage to the vein caused my bladder/bowel/sexual disfunction.

I sympathise with you and would love to hear what the outcome is of your case.  Please feel free to email me at ***@****.

Good Luck

Wendy