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Old 01-21-2013, 09:27 AM   #1
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Angry Urinary retention problems L5/S1 nerve compression

Hello -

I have been experiencing major pains in my bladder, pubic, private areas & inside thighs for the last few days. I have the urge to go to the bathroom at least 6-8 times per hour & notice I'm trickling in my undergarment. When this happens, I change my undergarment, so I can keep track of how much is trickling. I haven't had full on incontinence, but am worried about this symptom. Is it normal with L5/S1 nerve compression?

Should I call the Neurosurgeon to let him know, or wait until my appointment on 2/5? My follow-up was initially scheduled for 1/15, but they rescheduled me because doc had an emergency. I am still awaiting for my referral for 2nd opinion. I did in fact tell my Primary Care Physician this was happening from time to time.

Any thoughts or advice would be helpful.

Thank you,
Christie

 
Old 01-21-2013, 12:19 PM   #2
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Re: Urinary retention problems L5/S1 nerve compression

Did you get the referral to the spine specialist at Stanford?

Would you say your pain runs over the saddle area (defined as the area that would come in contact with a saddle....) ?

I guess your primary doctor wasn't concerned when you mentioned the bladder issues and the distribution of pain?

I think I might still call your neurosurgeon to be on the safe side. Have you read through the information for "Cauda Equina Syndrome? This is what we are concerned with whenever the bowel or bladder is affected.

 
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Old 01-21-2013, 01:16 PM   #3
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Re: Urinary retention problems L5/S1 nerve compression

[QUOTE=teteri66;5120706]Did you get the referral to the spine specialist at Stanford?

Would you say your pain runs over the saddle area (defined as the area that would come in contact with a saddle....) ?

I guess your primary doctor wasn't concerned when you mentioned the bladder issues and the distribution of pain?

I think I might still call your neurosurgeon to be on the safe side. Have you read through the information for "Cauda Equina Syndrome? This is what we are concerned with whenever the bowel or bladder is affected.[/QUOTE]

Thank you Teteri for the response!

Yes, the pain runs over the saddle area (inside upper thighs, both sides of groin, pubic, with numbness & stabbing). When I go to the bathroom, I also get sharp pains as I empty & feel my bladder is fuller than what comes out. I have also had constant dull pain & pressure over my bladder area for several months since the back injury, especially when I bend forward. I know it's not my female organs because I had a total hysterectomy 7 years ago & have never had urinary problems prior.

I am still waiting on the referral to the Spine Specialist at Stanford, as my Dr. said it would take up to 2 weeks. The 2 weeks is up this Wednesday, so If I don't hear anything by then I'll follow up. I am also waiting on a pending referral for an EMG. My Primary Care Physician is concerned about the nerve compression & possible damage; I told him my legs feel like they are moving when I am still or laying down. Legs & feet/toes also twitch & sometimes jerk in this position. One of the many difficult things going on, is that I have to sleep on my back (w/pillow under knees), because I can't tolerate the pain when I roll, or try to sleep on either side.

When I told my Primary Care Physician about the bladder issues, he was concerned about that & the pain distribution, but not enough to call it an emergency. It's another reason why he wants me to have the 2nd opinion. He felt that local Neurosurgeon should have taken more notice to this and the severity of nerve compression. I also informed him that I feel bone movement above my tail bone when I sit & is very prominent when riding in the car ... very weird feeling!

I looked up Cauda Equina Syndrome, and from what I read, it points to FULL loss of function to bladder & bowels. I couldn't tell if urinary retention or constipation were included or not. Intermittently, I get sharp pains & spasms at the rectal area with constipation. I attribute the constipation to the pain meds I'm on, but the sharp pain & spasms aren't anything I've had before.

Thank you again for taking the time to help me.

Christie

 
Old 01-21-2013, 03:40 PM   #4
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Re: Urinary retention problems L5/S1 nerve compression

I tend to think it is probably not CES either, but anyone with lower lumbar problems and nerve compressions needs to be aware of the symptoms of CES as the nerves can die very quickly and the damage becomes permanent. Probably the L5 and S1 nerves are somewhat compressed so that you are having these symptoms, but you are still getting enough blood flow through that there isn't a complete shut-down of the nerves' function.

Remember that neurologists study the working and diseases of the nervous system such as Parkinson's,
Alzheimer's, MS, etc. They do not have special training in the mechanical workings of the spine...so for this reason, a neurologist is not the best doctor to diagnose and make a plan of treatment for a spine issue.

Last edited by teteri66; 01-21-2013 at 03:43 PM.

 
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Old 01-22-2013, 01:35 AM   #5
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Re: Urinary retention problems L5/S1 nerve compression

I am not sure what your insurance is but I feel I have one of the best spine surgeons in the Bay Area. Dr Thomas Kula in Los Gatos is incredible

 
Old 01-22-2013, 06:18 AM   #6
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Re: Urinary retention problems L5/S1 nerve compression

[QUOTE=wendiz;5121041]I am not sure what your insurance is but I feel I have one of the best spine surgeons in the Bay Area. Dr Thomas Kula in Los Gatos is incredible[/QUOTE]

Hi Wendiz -

I checked my insurance online, and he is an "In-Network" provider. I'll give Insurance a call to see if they can authorize a referral to him. Sometimes the best referrals are "word of mouth", and come recommended. Hopefully I could get in fairly soon. The drive is approx 1.5-2 hrs, but worth it if he is one of the best.

I appreciate your feedback.

Christie

Last edited by lubear2003; 01-22-2013 at 06:24 AM.

 
Old 01-22-2013, 08:51 AM   #7
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Re: Urinary retention problems L5/S1 nerve compression

Maybe you want to do a little research beforehand. After all, every doctor has at least one patient who thinks he is the best. Word of mouth is a good way to find a surgeon...but just do a bit of research too!

 
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Old 01-22-2013, 05:41 PM   #8
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Re: Urinary retention problems L5/S1 nerve compression

[QUOTE=lubear2003;5120737]Thank you Teteri for the response!

Yes, the pain runs over the saddle area (inside upper thighs, both sides of groin, pubic, with numbness & stabbing). When I go to the bathroom, I also get sharp pains as I empty & feel my bladder is fuller than what comes out. I have also had constant dull pain & pressure over my bladder area for several months since the back injury, especially when I bend forward. I know it's not my female organs because I had a total hysterectomy 7 years ago & have never had urinary problems prior.

I am still waiting on the referral to the Spine Specialist at Stanford, as my Dr. said it would take up to 2 weeks. The 2 weeks is up this Wednesday, so If I don't hear anything by then I'll follow up. I am also waiting on a pending referral for an EMG. My Primary Care Physician is concerned about the nerve compression & possible damage; I told him my legs feel like they are moving when I am still or laying down. Legs & feet/toes also twitch & sometimes jerk in this position. One of the many difficult things going on, is that I have to sleep on my back (w/pillow under knees), because I can't tolerate the pain when I roll, or try to sleep on either side.

When I told my Primary Care Physician about the bladder issues, he was concerned about that & the pain distribution, but not enough to call it an emergency. It's another reason why he wants me to have the 2nd opinion. He felt that local Neurosurgeon should have taken more notice to this and the severity of nerve compression. I also informed him that I feel bone movement above my tail bone when I sit & is very prominent when riding in the car ... very weird feeling!

[B]I looked up Cauda Equina Syndrome, and from what I read, it points to FULL loss of function to bladder & bowels. I couldn't tell if urinary retention or constipation were included or not. Intermittently, I get sharp pains & spasms at the rectal area with constipation. I attribute the constipation to the pain meds I'm on, but the sharp pain & spasms aren't anything I've had before.[/B]

Thank you again for taking the time to help me.

Christie[/QUOTE]

Hi Christie,
I have CES, in fact, have had it twice so far.......so I can answer your concerns about what constitutes CES or not- the true definition of CES is not necessarily a full loss of control over your bladder and or bowels but a serious change in your normal habits...in other words, when you wipe with toilet paper, does it feel different? Have you had significant changes in your ability to hold either your urine or feces?
The changes that CES causes are so varied depending on the levels effected and where in the lower half of your body, those nerves innervate.....my two bouts of CES have caused chronic constipation, and an inability to hold my urine and empty both my bladder and bowels without assistance..I may not be able to use the toilet for a week or more at a time then need to use other measures because my body can not move the muscles properly to evacuate, if you understand what I mean...as far as my bladder goes, I have lost my ability to hold urine, and often feel like there is far more there than I am able to release on my own, so I have to self cath several times a day..
Reading your other symptoms, concerns me, and I think that you should really push to be seen by either a board certified ortho or neuro spine surgeon as soon as possible. The longer you wait, the more chance that the damage can become permanent..
You don't want that.
Back

 
Old 01-23-2013, 09:08 AM   #9
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Re: Urinary retention problems L5/S1 nerve compression

[QUOTE=backhurtz;5121441]Hi Christie,
I have CES, in fact, have had it twice so far.......so I can answer your concerns about what constitutes CES or not- the true definition of CES is not necessarily a full loss of control over your bladder and or bowels but a serious change in your normal habits...in other words, when you wipe with toilet paper, does it feel different? Have you had significant changes in your ability to hold either your urine or feces?
The changes that CES causes are so varied depending on the levels effected and where in the lower half of your body, those nerves innervate.....my two bouts of CES have caused chronic constipation, and an inability to hold my urine and empty both my bladder and bowels without assistance..I may not be able to use the toilet for a week or more at a time then need to use other measures because my body can not move the muscles properly to evacuate, if you understand what I mean...as far as my bladder goes, I have lost my ability to hold urine, and often feel like there is far more there than I am able to release on my own, so I have to self cath several times a day..
Reading your other symptoms, concerns me, and I think that you should really push to be seen by either a board certified ortho or neuro spine surgeon as soon as possible. The longer you wait, the more chance that the damage can become permanent..
You don't want that.
Back[/QUOTE]

Hello Back -

Thank you for sharing your experience. I can say that I've noticed a serious change in both bladder & bowels functions (mostly bladder). I haven't been able to fully empty my bladder as far back as November. Some days the pain associated with going, is excruciating, and other times are bare-able. I am equally concerned about the tickling of urine; It's not heavy, but just enough to feel that my underpants are wet/damp all the time. I didn't have chronic constipation until December. I recall being semi-regular while taking pain meds, but now average almost a week without going, and need to use a stimulant laxative to get things moving.

I noticed my first mornings urine today was a very small amount. My bladder felt very full (still does), but barely streamed out. It aches more after I go, like the feeling you get when you "hold it" for a long time, then finally go. When using toilet paper, It feels like a dry-wipe. Nothing else that I can tell. What would if feel like if there were a problem?

I'm going to push to see the Specialists sooner, and see what my Primary care Physician can do to move things along. I'm trying to be patient with all of this, but it's taking a toll on me. At this stage, if I cannot be seen sooner, I have to accept it & wait. At what point should I call the dr. or go to the ER about the urinary issues? Do I watch it for now? I want to avoid damage, but don't want to cry wolf, and be brushed off? It's so very discouraging that the Specialists take a nonchalant attitude when it comes to a patients quality of life. I'm "too young" (44 y/o) to have such spine issues, thus surgery (fusion), but not too young to be functioning like an elderly shut-in? Luckily, my Daughter is 24 because I couldn't care for anyone but myself. She's also a big help to me

I know surgery is a BIG deal, but after exhausting the whole gamut of conservative treatments, to no avail ... what's left? Accept problematic walking with bladder issues, or have the surgery? Mmmh. Sounds like a no-brainer, but unfortunately I'm at the mercy of these long awaited dr. appointments. I am willing to take the time to evaluate & make a decision after seeing both Specialist, and not rush in until then. I just don't see any other option? ESI's don't work for me, and aren't further recommended. This experience is all so new, as I've never had to deal with this type of medical issue before.

Thank you again for the insight.

Christie

Last edited by lubear2003; 01-23-2013 at 09:15 AM.

 
Old 01-23-2013, 10:54 AM   #10
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Re: Urinary retention problems L5/S1 nerve compression

Hi I know when I had and emergency laminectomy for my L4/L5 I could not hardly hold my urine. The dr tried to send me home from the ER with just some pain medicine until i refused to leave because i couldnt i couldnt even sit up. But I do remember crying a lot of times for the 12 hours it took them to do the CT to find out my spinal column was blocked 85%, I did not want to use the bathroom on myself. I could control it but it was extremely hard and it made me to the point of tears and someone in the curtain beside me begging a nurse to help me. I am not a person who cries or shows pain easily. I am not sure if this will help or not but with issues with my L4/L5 I could not control my bladder. Im new here so if it doesnt help im sorry

 
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Old 01-23-2013, 12:16 PM   #11
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Re: Urinary retention problems L5/S1 nerve compression

Hi Christie,
Unfortunately, I have found that some surgeons, even the board certified ones fall into the trap of not knowing that CES is a definative change in bladder or bowel ( not a complete lack of ability to go or control) and when you add in the other symptoms-the inside of thigh pain and numbness, the genital numbness and increase in pain levels, etc, it sure does sound like CES to me..my first episode my bladder was more effected than my bowels, although there were some changes in how the toilet paper felt ( couldn't feel it as much as I was prior to the surgery) followed by more than 10 days of not being able to go at all...and my bladder did the leaking, dribbling thing and then one day, just completely let go...
If I were you, I would go again to the ER, and simply print off the symptoms of CES, explain that things have gotten worse, that you can not empty your bladder and even when you can go, it is only a tiny amount. They can cath you ( I know it's not pleasant) to see how much urine is actually in your bladder..make sure that if you do decide to return to the ER that they understand that this is worsening and not getting better.
One of the big problems with getting CES is diagnosed is that it is supposed to be oh so rare however I can point you to a group of us who have all had it and found various responses to getting it diagnosed properly...
As I said earlier, depending on the levels effected, will determine what organs are effected in the lower half of your body...
Your other option is to call your GP /PCP and tell him the above symptoms and that you are concerned that things are rapidly progressing and worsening. It should not hurt to go to the bathroom, nor should dribbling or being unable to urinate or defecate be something that someone our age should have to learn to live with...a CT scan or an MRI can easily be done to determine if it is CES or not...the longer they wait, the worse the damage can become and the greater the risk of permanent damage..I know. I live it every day.
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Old 01-23-2013, 04:33 PM   #12
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Re: Urinary retention problems L5/S1 nerve compression

[QUOTE=backhurtz;5121823]Hi Christie,
Unfortunately, I have found that some surgeons, even the board certified ones fall into the trap of not knowing that CES is a definative change in bladder or bowel ( not a complete lack of ability to go or control) and when you add in the other symptoms-the inside of thigh pain and numbness, the genital numbness and increase in pain levels, etc, it sure does sound like CES to me..my first episode my bladder was more effected than my bowels, although there were some changes in how the toilet paper felt ( couldn't feel it as much as I was prior to the surgery) followed by more than 10 days of not being able to go at all...and my bladder did the leaking, dribbling thing and then one day, just completely let go...
If I were you, I would go again to the ER, and simply print off the symptoms of CES, explain that things have gotten worse, that you can not empty your bladder and even when you can go, it is only a tiny amount. They can cath you ( I know it's not pleasant) to see how much urine is actually in your bladder..make sure that if you do decide to return to the ER that they understand that this is worsening and not getting better.
One of the big problems with getting CES is diagnosed is that it is supposed to be oh so rare however I can point you to a group of us who have all had it and found various responses to getting it diagnosed properly...
As I said earlier, depending on the levels effected, will determine what organs are effected in the lower half of your body...
Your other option is to call your GP /PCP and tell him the above symptoms and that you are concerned that things are rapidly progressing and worsening. It should not hurt to go to the bathroom, nor should dribbling or being unable to urinate or defecate be something that someone our age should have to learn to live with...a CT scan or an MRI can easily be done to determine if it is CES or not...the longer they wait, the worse the damage can become and the greater the risk of permanent damage..I know. I live it every day.
Back[/QUOTE]

Hi Back - I just left a message with my local Neurosurgeons office to let them know what's going on; whether I should do something, or monitor it? I had a first today; while resting, I actually felt a very small amount of urine slowly coming out, whereas before I couldn't feel the trickling or dribble. I didn't feel the urge to go to the bathroom at that point, but afterwards I went to the bathroom to check on it. When I stood up from the couch, I had very sharp needle-like pains going right through my bladder & pubic areas (take your breath away pains). There was more wetness in my undergarment than the last time I checked, so I changed to see what happens later. I've mentioned this issue a few times to family & friends, and they asked if it could be a urinary tract infection. I have had several of those in the past, and this is noticeably different. All looks clear, no burning or odor.

Would CES have showed on my MRI (10/25/12) if I had it? If you look up my posting history, I posted my MRI on my first post for interpretation. L5/S1 level indicates the "Intraforaminal disc component contacts the caudal aspect of the exiting L5 nerve root", along with lateral disc collapse. There are several other issues at this level & the two above, but this is the only thing I can think of that would be close? I'm still familiarizing myself with all of the terms & verbiage.

I am so sorry you have to live with the awful affects this has caused you, and I appreciate your reaching out to help me & others.

Any thoughts or comments are always appreciated

Christie

Last edited by lubear2003; 01-23-2013 at 04:37 PM.

 
Old 01-24-2013, 07:40 AM   #13
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Re: Urinary retention problems L5/S1 nerve compression

[B]Hi Back - I just left a message with my local Neurosurgeons office to let them know what's going on; whether I should do something, or monitor it? I had a first today; while resting, I actually felt a very small amount of urine slowly coming out, whereas before I couldn't feel the trickling or dribble. I didn't feel the urge to go to the bathroom at that point, but afterwards I went to the bathroom to check on it. When I stood up from the couch, I had very sharp needle-like pains going right through my bladder & pubic areas (take your breath away pains). There was more wetness in my undergarment than the last time I checked, so I changed to see what happens later. I've mentioned this issue a few times to family & friends, and they asked if it could be a urinary tract infection. I have had several of those in the past, and this is noticeably different. All looks clear, no burning or odor.

Would CES have showed on my MRI (10/25/12) if I had it? If you look up my posting history, I posted my MRI on my first post for interpretation. L5/S1 level indicates the "Intraforaminal disc component contacts the caudal aspect of the exiting L5 nerve root", along with lateral disc collapse. There are several other issues at this level & the two above, but this is the only thing I can think of that would be close? I'm still familiarizing myself with all of the terms & verbiage.

I am so sorry you have to live with the awful affects this has caused you, and I appreciate your reaching out to help me & others.

Any thoughts or comments are always appreciated

Christie [/B]

Hi Christie,
I went back through your other posts and found the MRI- it seems to me that the problems might be stemming from L4- and L5...an annular fissure is a tear in the outside of the disc material- you have several tears according to the MRI report...anything could worsen those tears , coughing , sneezing, bending over the wrong way-picking up something. I think that a newer MRI and a CT report should be done, especially given the extent of your symptoms to find out for sure if it is CES.
CES is in a nutshell a major compression of the central canal- whether that is from stenosis ( narrowing of the spinal canal and/or exiting nerve roots), a disc herniation which puts the material of the disc into contact with the spinal canal and compresses it, or some other reason that causes compression of the spinal canal ( in the lumbar area, it is the pairs of nerve roots that exit at each level ). Even with the lack of a specific mention of CES in the first report, it does say that a CT scan should be done to confirm the findings of the MRI report and it seems to me given the ongoing, increasing problems with walking, numbness, urinary and bowel issues, loss of sensation, and other problems with your legs and saddle area, that you need to be reevaluated, and quickly.
I would strongly suggest to whoever you are seeing that you need to be rescanned- and both would be a great start- CT scan and MRI and with and without contrast would also give a fair bit more detail...
I am concerned about what I have read and while I am not a doctor, having lived through this twice, I know a lot more about CES and it's symptoms than I care to admit to..living with it is no fun..
My second onset is due to having a revision done that was a salvage operation- one with the intent solely to try to keep me walking- the second surgeon used bmp ( bone morphegenic protein- it is supposed to aid in fusion) and in my case, it caused bone overgrowth in the wrong areas- hence my second onset of CES, but this time, it also adhered the dura ( covering of the spinal cord/nerves ) to the back of the vertebre at three levels. So when they finally go in to do the second surgery, they will wind up having a huge tear in the covering of the spinal nerves, which will take some time to heal up- so I will be flat on my back until it does. They want to wait until I wind up paralyzed before even considering doing the surgery because of the risks involved...
I don't want to see anyone else wind up like I have, so I am very careful and watchful when I see symptoms like yours, not being taken seriously.
How close are you to a major teaching hospital? If you are not being taken seriously where you are being seen, it might be time to seek out a major hospital and a top of the line surgeon..even telling them that you suspect CES usually gets you seen much faster than most patients...as it should. It can cause permanent damage.

 
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