Cauda Equina Syndrome...

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Dragoness Warrior
Regular Member


Date Joined Jun 2008
Total Posts : 96
   Posted 7/15/2008 9:41 AM (GMT -7)   
Does anyone know more about this?  I looked it up and got the info, but I'm not sure if I have it and had a couple questions before I ask my doc about it...
 
I have incontinence of the bladder, how bad does it have to be to be Cauda Equina?
 
I don't have bowel incontinence, but have constipation, I hear that is a symptom too?
 
Any information about this, would be greatly appreciated, since I have no idea what it is except for what I read!!  Thanks!!
 
Good luck to all!

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/15/2008 12:47 PM (GMT -7)   
Oh boy, do I know that all too well. I developed it post op after my first fusion.
You don't have to have all of the symptoms for it to be CES, and if it is, you need to be seen immediately. Do not wait. The best time to get the decompression done is within 24-48 hours of onset of symptoms.
If you believe you have any of the symptoms of CES , get thee to your surgeon's office immediately.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/15/2008 12:57 PM (GMT -7)   
Hello:! I got this after my fusion and it's nothing to play with. I would go to a University Hospital with a really good neuro surgical team on staff. ASAP. If i can help please advise, did You have any trama ? infections and or surgeries ?? Good luck to You-- Tom
Sandi:
Adhesive Arachnoiditis ! This was a new one for me as i never heard of it. This is yet another cruel disease as a result of "failed surgery "
Tom Lasko

Post Edited (tom inpain) : 7/15/2008 8:25:35 PM (GMT-6)


Dragoness Warrior
Regular Member


Date Joined Jun 2008
Total Posts : 96
   Posted 7/16/2008 9:43 AM (GMT -7)   

Thank you Sandi and Tom!!  I appreciate your support!

I'm very concerned now because this has been going on for about 2 or so years!!  The only real trauma I had was being rear ended, that is what caused my back trouble, I had a little urgency, but it really started about 2 or so years after the accident!  I went to a urologist and he was only able to tell me that it wasn't stuctural, which my PM doc said that it means it has to be nerve related.  I stopped seeing the urologist because all he was doing was try this med, try that med, and he is a very well know doc in the area!  I know that just because he's so good doesn't mean that he didn't miss something!  So, I've been dealing with this for a good while, so if it is CES, then wouldn't I be in bad shape?  Did I wait too long?

The only surgery I had was the decompression in my back for L3-4, but that only made my pain worse!!  But that was the begining of this year, so I don't think it was that!

I'm really nervous now, if I should be seen about this right away, and I've been dealing with this for so long, what's going to happen?  Could it get worse?

What do they do for CES?

Sandi, I have to ask, what did you mean by the decompression?  Are you talking about the decompression in the back, or is there another procedure for the CES?

Also, Tom, thank you for the advice about going to the University, but they won't see me because I have a lawyer!!  They don't want to take away from their other patients!!  I have my issues with that, but that's another story!!  LOL!

Thank you very much for your advice and support!!

Good luck to you all!!


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/16/2008 4:37 PM (GMT -7)   
Hi Dragon,
To answer your question about whether or not you would be in worse condition or not is kind of complicated.....it depends on what level the CE nerves were/are compressed at. Each spinal level has two nerves that exit at that level, and so the higher the compression, the more damage you would see at/below that level, because the higher up the damage, the more nerves are compressed....and it also depends on the degree of compression. If it is a "mild compression" of the Cauda Equina, it may only effect one or two nerves, a moderate one might effect 4 or more, and a severe compression would of course effect more nerves, again depending on the level. That's why you will see people with CES who have such varied symptoms and different areas of the lower body that it effects....
A compression at L3-4, would effect the body in the L3 and 4 dermatomes, along with L4-5, L5-S1, S1-2, S3-4, S4-5......one lower, say at L5, would effect the L5-S1dermatome, and all of the Sacral nerves.......if that makes sense.... confused   I hope that I haven't confused anyone.....
Anyway, given the length of time that you have had this compresion assuming that it is CES related, I would guess that your symptoms have leveled off, as long as there isn't anything else to cause a further compression. 
I know when it first started, I had the saddle numbness, and extreme low back pain, so severe it had me screaming when they tried to move me.....I wanted to die, and I mean that literally. I have never felt pain so intense in my life. skull   I also went from a partial foot drop to a total over the course of the 6 and a half hour surgery and my waking up...and I added my right leg being effected, it became numb from my low back down to my sole of the feet.....my left leg prior to surgery, had a patch of numb area in the L4-5 dermatome, and when I woke it was just like the other one, just more severe. It was like someone had removed my legs, buttocks, and low back and I just couldn't make them do what I wanted them to do..... sad
Over the course of the next 16 months, things continued to go downhill, and some settled down, as the not being able to tell I had to use the bathroom was replaced by urgency issues, where I didn't leave the house until I knew exactly where the bathrooms and nearest benches were, and I knew that I could make it that far.....otherwise, I stayed home. The numbness settled some too, in that it was /is still there, but it is slightly different than it was at first....and my numb soles were also burning if I put on shoes.....that was painful!
I don't know if I am allowed to put links here, I have to ask Chutz, but there is a support group out there for those who have or think they may have Cauda Equina. There are a few thousand of us, all over the world, but probably less than 100 of us regularly post. There is a wealth of knowledge in that group regarding CES, and how it effects us all differently. They saved me, many times in the beginning of this.
As far as the urologist goes, he should have done urodynamic testing, which includes testing the nerves in the area, then he could have told you if there is nerve damage to your bladder or not. I know that my urologist did, right after it was done.
I also tried different meds to see if they might help, but they often don't when there is nerve damage, but he hoped that they might, even a little since I was retaining far more than I was able to put out......so if they didn't help, I was going to have to go through with the cathing thing......
He was very, very supportive during that too, so I bless that man, for knowing what CES is, and how to best help me...
As for your question about what they do, if it is discovered early- right after the onset of symptoms and diagnosed for what it is, then early decompression of the effected nerves is the standard treatment, which usually means a laminectomy....or fusion surgery.
If the nerves are decompressed quickly enough, and they weren't damaged too severely, then they might recover over some time....but because they are spinal nerves at the lowest end of the spinal canal, no one can really tell you if they will or will not recover.
In my case, the nerves at L5-S1 are like old lace, dried out and extremely fragile and similar to tissue paper in that my neuro said that if he touched them, he was afraid he would crumbled them....so he left them alone....but he did try to decompress the nerves at L3-4, L4-5 again, but I haven't had any improvement in my situation yet.
In fact, I am now using a manual and motorized wheelchair to get around, and a scooter too......but my situation was one of the extreme cases, and left far too long to try to do anything about it......it's not always that way. There is another woman who had a herniation at L5-S1, and she had no surgery and has no symptoms to this day.....so it can be very, very mild to nothing residual happening to cases like mine and others......
Anyway, whatever it is, I hope that you don't find yourself dealing with it. And if Chutz says it's okay, I will post a link to the other group.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/16/2008 4:49 PM (GMT -7)   
Sandi,
Thanks for explaining all this. I kept hearing a little about it here and there on posts, but never this much detail. At least now Dragoness and others (including me) will have a better understanding.

Hopefully, Chutz will let you post the link. I know she will if she can.

PaLady

tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/16/2008 8:06 PM (GMT -7)   
Hi Dragon, PaLady and Sandi: For once I lucked out and got this problem and it was surgically corrected within 3hrs of my symptoms. My heart goes out to You Sandi as I thought I was in lot of pain and discomfort. You are in my prayers and I believe in miracles. My family was told 7 times to say goodbye to me and also afterwards that I would never walk or talk again. I am alive, talk and walk ( with difficulty ) so I believe in miracles and modern medicine come up with cures everyday.

Dragon: Stupid question but what does Your Lawyer say when You tell the Attorney that you can't be seen because of being represented by counsel ?
I see no reason why Yuo cannot be treated at least the Dr's medical bill would be protected by litigation or from the proceeds of Your claim.
Tom Lasko

Post Edited (tom inpain) : 7/16/2008 9:35:55 PM (GMT-6)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/16/2008 8:30 PM (GMT -7)   
Tom,
I'm not sure (and will let Dragoness speak for herself) but from some of her earlier posts I understood that some doctors would not see her because she was involved in a legal case, not because she was a lawyer. And I have run into this. Some doctors just don't want the hassle of the legal issues, so they will ask up front if you're involved in any kind of litigation and if you are, may not take you as a new patient. I think it's probably a legal policy if they apply it equally to everyone. I think they can't stop seeing you, however,if you were a pre-existing patient and then become involved in a legal case (worker's comp., etc.).

This was actually one of the snags I ran into with my PCP as they tried to refer me to specialists, but I did find the Cleveland Clinic and Univ. of Pittsburgh didn't care if you were involved with a legal case; they just wanted to know who was paying the bills!

Dragoness - I wonder if you're scared off a bit by the suggestions to get treatment for or at least an assessment for CES as soon as possible. I hope not, because maybe it will at least give you the info. so you can make informed choices about your current medical situation.

PaLady

tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/16/2008 8:37 PM (GMT -7)   
Pa Lady: I mis-read Warrior Post and corrected my comments-- got to quit posting guess i am over tired Sorry ---tom
Tom Lasko


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/16/2008 8:44 PM (GMT -7)   
Not a problem, Tom. I do it all the time! :-)

PaLady

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/17/2008 9:26 AM (GMT -7)   
You're welcome PA Lady. My worst nightmare is seeing someone else with CES being ignored or not treated in a timely manner. I knew that something was horribly wrong but couldn't get the doctors to listen for months.... I saw my physiatrist three times in the course of the week after my surgery and told him exactly what was wrong. My poor nurse when they discharged me 30 hours post op was furious, arguing with the doctors that there was no way that I was ready to go home and that something else was going on.....but, no one listened to her either.
Anyway, I do the best that I can to educate others when I see symptoms, and to try to encourage them to see a doctor as soon as possible. That's about all that I can do now, so if someone sees them selves in something that I write , and gets the care they need, then I did a good thing.
Take care,
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/17/2008 9:32 AM (GMT -7)   
Tom,
I am glad to read that you got the care you needed right away. In ideal conditions, that's exactly how it should go, because the sooner they get you into surgery to relieve the compression, the better the outcomes for the patient.
I had a central canal stenosis at L3-4, L4-5, and L5-S1 before my surgery, but for some unknown reason, they only fixed the L4-5 levels, leaving the other two alone. A myelogram before surgery, clearly showed three levels where the dye could not pass those levels ( they actually had to sit me up for an hour to get the dye to slowly flow past those levels for the CT scan). The swelling post op, combined with the trauma of the surgery itself, caused my CES, but because the surgeon was so caught up in the extent of the damage and the "technical" aspects of my back surgery, he completely missed my problems. In fact, no one bothered to examine me post op, other than to check my foot drop.....and that was it......they sent me home 30 hours post a 6 and a half hour PLIF/TLIF surgery....anyway,
I'm glad that you had a positive outcome of your surgery Tom and that you have had improvements in your condition since then.
I hope you keep having them.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/17/2008 9:37 AM (GMT -7)   
Sandi,
I am so sorry this happened to you! I know my PLIF took 6 hours (was supposed to take 3) and I ended up in the hospital for 6 days! But still, things were missed. I had to argue with PT to just get a cane to take home, and I was being d/c to go home alone. But to read that you had such a surgery and were discharged less than 2 days later!! The anesthestic isn't even out of your system!

PaLady

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/17/2008 10:29 AM (GMT -7)   
Mine was supposed to take 3 as well but he told my husband and I after the surgery, that it was such a mess in there that he had no idea that he was going to find what he found.....that alone should have told him that he needed to keep an eye on me a little closer. Along with the myelogram results should have told him that I am a prime candidate for CES. I was dumbfounded when he told me that I could go home if I wanted to, I actually thought that he was kidding....
My nurse was beside herself, and I mean that. I've never seen a nurse so upset about something, that she was yelling at the doctor.
I was told that I would be in the hospital for at least 5 days, and I expected that.
I literally almost passed out in the hallway, waiting for the papers for my discharge that day.
Anyway, thankfully, I will never go through that again.....
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


Dragoness Warrior
Regular Member


Date Joined Jun 2008
Total Posts : 96
   Posted 7/18/2008 1:11 PM (GMT -7)   

OMG, Sandi, I'm SO sorry about what happened to you!  You should NEVER have had to go through all that, I'm SO, SO sorry!  That is what I don't understand about doctors, they are just trying to make room for the next "victim"!  I was talking with my boyfriend about all the great info that you all have given me, and my Urologist NEVER did urodynamic testing!!  I told him from the get, that I was there because we suspected that it has to do with my back!!  And he said, well, we are going to start from the begining, because it could be an infection or something that is treatable, he tried med after med, test after test, but NEVER the urodynamics!!  I am beside myself that even the referral to go to him was from my PM, not my PCP, so there is NO reason for him NOT to have done that for me!  So, I could have had this all these years, and no one EVER did anything for me!  I have to see about another urologist!!  Thank you all for such GREAT info!!

And yes, thank you PALady for answering that question for me!!  You had it all right, thank you!  And Tom, I'm SO glad that things worked out in your case!!

Sandi, you are doing a wonderful job, and thank you for telling me about your condition!  I know it must be hard.  I pray for you, and everyone here.

I am VERY nervous about this now, considering that it could be a varied symptom of the CES!  I will seek another urologist, or my boyfriend had a good idea too, is get the PCP or the PM to write a script for the urodynamics test!  I had a scope done, that determined how much my bladder could hold, and it was about 4 oz before I felt like I had to go, then about 6 oz. I felt like I was going to burst, he said he found nothing stuctural, and he wanted me to come back!  I was SO sick of going time after time, we are thinking that he was just drawing out the treatment, so he could get more money from me and my visits!  He sees mostly older people and I think he is trying to get over on them, he's an older fellow himself, and I think that maybe he is trying to get his retirement funded!  But, he is supposedly well known, and that is what really gets me!

Thank you all for your valued support!!  I appreciate all your info, and Sandi, you can always PM me too with that website?!  Anyone can PM me, for anything, I don't mind!  Hearing what has happened to you, Sandi, has me really concerned!  Thank you for answering all my questions too, and I think that you have helped a number of us understand what this is, and that we really have to be careful, and sometimes fight with our docs to do the right thing!

I have a L3-4 impingment, a L4-5 herniation (which never really bothered me before the accident, and even during the discogram- this was from a prior thing, but never created a problem with my playing softball, or functioning), and the rest is in my neck.  Now, I had a decompression in the L3-4 and it made my pain worse.  The symptoms of the bladder didn't change.  The pain was in both of my legs, but seems to have leveled off to where my right leg is my main problem, though I get some pain in my left thigh too, but my doc seems to ignore that because my main problem is the right.  And I had my years off a little too, the accident was about 5 years ago, then I started to get some of the urgency about a year later is when I was noticing it, then about 2 years after the accident, I was peeing the bed, and having a hard time getting to the bathroom.  At first I though it might be the meds, but then when I didn't take them, I still wet the bed!  So, that is when I talked to the doc and he sent me to the uro, and here I am now, still with the problem!  I have to say, the Cranberry really helps to keep it at bay!  If I don't take the Cranberry, I WILL wet the bed.  I have adult diapers, I've even had bed liners, and I have that waterproof mattress cover.  Before I was trying the cranberry, I was really bad, I was doing this EVERY night!  Now it's occassional, with the cranberry, but God forbid if I forget to take it!!  LOL!  So, I don't know if that give you better insight on my issues, but I certainly still will look for another uro!!  Thank you SO much!

I wish you all well, and I do keep everyone in my thoughts and prayers too!


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/19/2008 8:08 AM (GMT -7)   
Hi Dragon,
Thanks , I agree, I never should have had to go through that, but I did and in a way, I am not as angry as I was for a while after it happened. At least I know when I read about someone with similar symptoms what to tell them and how to encourage them to see someone else if they are not getting the answers they need.
As far as your urologist taking his time for more money, I went through that with mine too, but he honestly was trying to avoid having to have me start cathing. He kept hoping ( as did I) to avoid it if at all possible, so we tried several different meds, for a month or more at a time hoping to see some benefit so that I wouldn't have to cath.....
Some of the meds do take several weeks to a month to get a level built up in your system before you will know if they will work or not. So, it may not have been that he was just trying to make more money, but that he really was trying to help as best he could.
I'm glad that the cranberry helps, it does help to keep infections at bay, and might even clear up some minor ones, so keep drinking it or taking the tabs unless a doctor tells you to stop.
There are several different things that could be going on with your bladder, and the urodynamic testing will help to determine which one it is and if there is nerve damage to the bladder or not.
Mine was strictly nerve damage, and because of that, the meds wouldn't help.
It's not pleasant testing, but I had a woman who did mine and it wasn't as bad as I thought it would be. She made me as comfortable as one can be while having those kinds of tests done. Mine also did a cystoscope, I think that was worse than the uro testing actually, even with the numbing stuff.....
Anyway, do find a new urologist, preferably one who understands spinal issues and their relationship to the bladder and bowel. There are also urogynecologists who also do that kind of testing, if you might feel more comfortable going that route.
Good luck to you and if I can help, feel free to PM me.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


Dragoness Warrior
Regular Member


Date Joined Jun 2008
Total Posts : 96
   Posted 7/19/2008 2:30 PM (GMT -7)   

Sandi, thank you SO much!  I really appreciate this a LOT!!  I didn't know that there are some urogynocologists!  That is very interesting and will look into that!  I have an OB and I can check with them to see if they do those tests!  I don't know though, but it's worth a shot, because I have to make my annual appt anyway!  Thank you for that great info!

Also very good to know that the cytoscope was worse than the uro testing!  That cytoscope was SO uncomfortable, I agree, even that numbing didn't help!!  That burning wasn't pleasant at all!!

Ok, so maybe the doc wasn't drawing things out as much as I thought, but he still didn't listen when it came down to the main issue I was there for!  So, I thank you for correcting my thoughts on that one!  I don't like to think poorly of doc's unless they give me good reason, because I know they are human and make mistakes too, but hey, if someone comes in and tells you why you are there, and they don't test for it, what's the use, right?!  LOL!  I appreciate that correction, and I think that was what he was doing at first too, checking to see if different meds would help.  The Detrol was the only thing that gave me a little relief in the begining (that was the first med I took) and it helped for about a month, then from then I was switched many times, and nothing even put a dent in it, so you are right, if it's nerve it probably isn't going to help!

Again, thank you, thank you, thank you!!!  I can't thank you enough for helping me through my confusion and difficulty!  I see a couple new docs soon, so I will ask them about a good uro that is informed about spinal problems, as you said!  I will keep you posted as I find out what is going on!  Thank you SO much!

I have you in my thoughts and prayers with everything that you are going through with that, I feel terrible that you, or anyone has to go through that!  You know, I was angry when I was first rear ended, so I know how you feel, but it's life and I think with time, you start to realize that.  Also, as I said before, I think this has made me more compassionate of a person, though I was very compassionate to begin with, it really has made me a better person because of it!  Thank you again!  Good luck to you and everyone here!!


tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/19/2008 7:59 PM (GMT -7)   
Hi Sandi and everyone else who contributed. You mentioned not wanting a muscle stimulator inplanted nor do i. Reading up on the stimulator i saw nothing but problems and since my health is governed by Murphys law i decided to decline the procedure. Also my pain doc sent me to a shrink who wrote and advised me that i should not have any more surgeries unless it was life threating. do You think I shared my anger at the surgeons ? who messed up my entire cervical spine, cut the nerves in my hips giving me RSD symptoms in both my legs and groin ( hips and groin feel like there on fire ) negleted to repair my dislocated knee in a timely fashion causing all types of leg problems and a couple of more surgeries yet to come. Sorry I am venting please let me know Your thoughts on the stimulator and Your feeling a a pain pump. Many thanks and God bless.
Tom Lasko


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/20/2008 12:37 PM (GMT -7)   
Hi Tom,
I refused the scs idea, number 1, because it is not a cure for my back pain or nerve damage, it is simply another bandaid...kind of like esi's....I know that both have helped others, but for me, the esi's were an experiment in torture, and unless they can prove to me that scs is going to work for me, and they can offer me a reasonable explanation about how a scs would be different than a TENS unit, which I also can't tolerate would work, they can keep their scs. Having someone sticks electrodes near my spinal cord, to "find out" if it's going to work is ridiculous in my opinion.
I was asked about an intrathecal pump, and honestly, I would do that before I would consider a scs at this point. For two reasons, it would allow me to keep my med doses down, over all, and save me from having to take multiple doses of pain meds every day, and they can add my baclofen or another muscle relaxer to it as well....
I , like you have not had good outcomes and for me, the benefits clearly have to outweigh the risks for me to consider some of their options, if that makes sense to anyone but me.
I'm sorry Tom that you have gone through so much. I had RSD in my right shoulder, arm and hand long ago and I know what a nightmare it is to try to live with.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


~Cloe~
Regular Member


Date Joined Jul 2008
Total Posts : 125
   Posted 7/20/2008 2:46 PM (GMT -7)   
Greets posters!

I am new to this forum just today. I too suspect that I have CNS. Loss of bladder control, bloody stools, muscle spasms in back, stomach and charlie horses in both legs.
I am 45yrs, forced to retired at 40yrs due to DDD. Bulging disc at levels 1-5. I had my last MRI in June and was seen by a neural surgeon July 2nd. I was told that my condition is unfortunate due to my age but it is chronic and inoperable. I only gave my symptoms to the surgeon, I never told him that I suspect CNS. I once again was sent home to bed where I have been for 5yrs. I am now scared about my future as I can only stand approx. 3-5 min. and feel like I need a walker but my pride is stopping me.
Anyone else feel like they were put on this earth to suffer as others learn how to fix us?
TY for letting me share.
Cloe

tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/20/2008 7:29 PM (GMT -7)   
Hi Cloe: Welcome--- To answer Your question a lot of us were chosen to experiment on to see how much pain,discomfort, and mental stress a human body can take. How did You come up with CNS ? and why not ask Your surgeon ? I always take a list of written questions with me simply because the pain and flustration and of course anger causes me to forget to ask what i need to know.
On this site You will find the greatest people on earth in severe pain quite willing to help you in every way they can. I look forward to hearing more from You.
Tom Lasko


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/23/2008 2:02 PM (GMT -7)   
bumping this up for Cloe.

PaLady

~Cloe~
Regular Member


Date Joined Jul 2008
Total Posts : 125
   Posted 7/23/2008 2:06 PM (GMT -7)   
Hi tom inpain,
I re-read my post and it is not CNS but CES. I had an MRI done in June and saw a board certified neural surgeon in July. He viewed my MRI right in the room via computer. I told him my symptoms. I went to get my hair done. When I stood up my butt and legs were numb and my pants were soaked with urine. He was provided my symptoms and my MRI, I refuse to self diagnosis as my family gets on me for that and I don't think that the medical profession appreciates it. (How dare a layman tell me how to do my job! Has been my past Doctor appointments gone wrong.) What if I get labeled hypochondriac?
Cloe

tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/23/2008 6:19 PM (GMT -7)   
Hi Cloe: sorry about Your experiences. Welcome to my world i am always mad at one of my Doc's or all of them as they forget we are human beings. My choice for the perfect pain doctor would be one that has the same pain as I do then i believe I would get perfect treatment and the right meds. Take care. Tom
Tom Lasko


~Cloe~
Regular Member


Date Joined Jul 2008
Total Posts : 125
   Posted 7/23/2008 7:16 PM (GMT -7)   
Hi tom inpain,
How long has your body been possessed with pain? I have my list of 16 questions and 1 statement done for the doc tomorrow, you posted it up thread, 'a lot of us were chosen to be an experiment to see how much pain, discomfort, and mental stress a human body can take'. I edited to add... We are all unique and for the medical professionals to take medical studies as biblical is unfair to me, my husband and family. Now I want to go read the constitutions, their has to be a violation somewhere. Off I go. LOL
Cloe

Post Edited (~Cloe~) : 7/23/2008 8:20:01 PM (GMT-6)

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