I am scared and no one understands...

[kkmom2]

Originally Posted by lfoster21

Please, if you have not done so yet, get in to see who ever is working on your back. I don't know if your back dr. asks you about any bladder, bowel problems or numbness, when you visit with him/her. But the reason that they should be doing this, is for those who have back problems and then get this numbness in the groin (along with the bladder and bowel issues), they could have Cauda Equina or Arachnoiditis, which in its end stages is an emergency. If you find yourself loosing your bladder control, you have 24 hrs. to get into surgery.

I know that all sounds scary, but it is a real problem with back pts. I started with not being able to pee. Just as you said, I'd sit on the toilet for 15 mins. and I had the constipation with that as well. Then I saw a Urologist and he tested my bladder to find out if it was my kidneys or if the problem was due to nerve damage, which meant either Cauda Equina or Arachnoiditis. (At least, that is what my Dr. told me.) The Urologist tried several meds. with me and finally found Flomax, which is actually normally used for men. But he said that it often works with women too. The problem was if I took 1, I still could not get myself to go enough. There were a few days that I went 24 hrs. or more, without peeing. They upped the Flomax to 2 pills and I was feeling that urgency pain of having to go, every hr. but only a small amount would actually come out. So, I am now having to cath. myself 3 times a day and use the flomax. But, he said we had to do all of this to find a way of getting me to pee at least 4 times a day (and 5 times was preferable). If not, the bladder will cont. to fill up and will stretch and then will overflow and then a person will loose control of their bladder and will have that 24 hrs. to get into the hospital for surgery.

I now have that numbness, not to the extent that you have. When I wipe, I can't feel the tissue, but I don't have the complete numbness that you described. Anyway, you do need to get to a Urologist at some point soon, to get a med. to will get you going, or you will end up having to cath. yourself. The sooner you get this taken care of, the less likely you will have to do that or loose control of your bladder. If the Urologist dx. you with nerve damage that is causing this problem, then you need to see a Neuroligist to have an EMG done.

I am sorry if this sounds scary, but it is an important thing to know for those who have back problems. You can search the dx. of Cauda Eqina Syndrome and Arachnoiditis. Then get to a Dr. for some meds.

Please let us know how things turn out.

Lorie

Hello Lorie, thanks for your response. Wow this is really scary and confusing to me. Cauda Equina syndrome was one of the first things that came to my mind today, it was even there for the fast couple of weeks with burning feeling I would get. Today, was just a totally different feeling, very strange is the only way to describe it. To me the doctor in er did not take me seriously, like I was crazy or something and she was mean. When she tested me, she sound concerned when I did not react the way someone else would to getting poked and prodded. I heard her say she had to make some calls and she called the neuroligist, I do not know what he said. All I know is the doc mentioned about me getting some type of bladder and bowel test from the uroligist, but it may take some time for me to get scheduled for that. I was sent home and felt like I wasted my time going.

So, do you think I should go back? ER does not care, esp. when they dont deal with this alot. My doc is not back till wednesday. I am sorry you are dealing with this issue as well. Did they say it was cauda equina for you? Also, my actual w/c doctor always ask about bowel and bladder issues, I am sure if I would have seen her she would have gotten to the root of things. I am dreading this weekend, I hope everything will be ok. Thanks.

[lfoster21]

I'm glad that I did not scare you off. I was just concerned when I heard the symptoms, since I have been there. At the point that you are at, the ER can not do anything, it really is the Urologist that needs to see you. What I was told was If I ever lost control of my bladder or bowels, head straight to the closest ER and let them know you are a back patient. They will know exactly what to do. But, the hope is that you don't have to loose control (or can prolong it.) The only way to do that is to find a way to pee 4-5 times a day. I'd get the paperwork started to try to get into a Urologist. I had to get a referal from my surgeon...which once you tell the w/c Dr. (or whoever is now your back Dr.) that you all of a sudden have no feeling in your genitals and have these bladder/bowel dysfunctions, they will want you to see a Urologist. They know how serious this syndrome it and they would be neglectful to know your symptoms and not refer you for a Urologist.

Anyway, between now and the time you can get into see the Urologist, the 1st thing mine told me to do is to make yourself sit on the toilet every 2 hrs. even when you don't feel like you have to go. Also, when on the toilet, lean forward and pull in your bellybutton and tighten your core muscles. That can help you to go. If you can't go, thats fine, try again in an hr. If you do go, then you can wait 2 more hrs. but until you are going at least 4 times a day, keep trying to do this, as much as you can during the day. Also, keep a journal of how many times you are able to go ea. day and whether it is just a dribble or if it was normal. This will save you time, when you do see the Urologist. This is something he would want you to start trying at 1st, and you will be able to go directly to the next step, when you do see him. My Urologist has told me that if the bladder problems are caught early enough, many people can retrain their bladder, and what I described above, is the 1st way of trying to re-train things to work right.

I was originally dx. with CES, becasue of the symptoms. But when I had my EMG/NC test, it just showed chronic nerve damage on my right side, but usually if you have CES...evidently your nerve damage is off the charts on this test, and mine wasn't. So, 2 of my Drs. still said that with the symptoms, it had to be CES. The other 2 said they did not think it was CES. Then I started to loose stregnth in my legs and started falling as I tripped over my own feet, and the pain from my back and down to my feet has cont. to worsen and is not getting better with any of the treatments that have been tried. So, I have finally been dx. with Arachnoiditis. Many of the symptoms are the same as those of CES. I don't know what exactly the differences are, except that ARC. is progressive with uncontrollable pain. I am still learning about the ARC. I was frightened by learning about CES a year ago and now that I know everything I need to know about it...I am having to learn about the ARC. Does it ever end

Please feel free to ask me any questions that you have. I know it is scary when you realize you have these new symptoms and don't have any answers. I also had a hard time asking questions, because I was kind of embarassed to talk about it. Don't be embarassed or scared, just learn what you need to know and start to get into see your Dr. to get a referal for a Urologist.

Lorie

[kkmom2]

Originally Posted by lfoster21

I'm glad that I did not scare you off. I was just concerned when I heard the symptoms, since I have been there. At the point that you are at, the ER can not do anything, it really is the Urologist that needs to see you. What I was told was If I ever lost control of my bladder or bowels, head straight to the closest ER and let them know you are a back patient. They will know exactly what to do. But, the hope is that you don't have to loose control (or can prolong it.) The only way to do that is to find a way to pee 4-5 times a day. I'd get the paperwork started to try to get into a Urologist. I had to get a referal from my surgeon...which once you tell the w/c Dr. (or whoever is now your back Dr.) that you all of a sudden have no feeling in your genitals and have these bladder/bowel dysfunctions, they will want you to see a Urologist. They know how serious this syndrome it and they would be neglectful to know your symptoms and not refer you for a Urologist.

Anyway, between now and the time you can get into see the Urologist, the 1st thing mine told me to do is to make yourself sit on the toilet every 2 hrs. even when you don't feel like you have to go. Also, when on the toilet, lean forward and pull in your bellybutton and tighten your core muscles. That can help you to go. If you can't go, thats fine, try again in an hr. If you do go, then you can wait 2 more hrs. but until you are going at least 4 times a day, keep trying to do this, as much as you can during the day. Also, keep a journal of how many times you are able to go ea. day and whether it is just a dribble or if it was normal. This will save you time, when you do see the Urologist. This is something he would want you to start trying at 1st, and you will be able to go directly to the next step, when you do see him. My Urologist has told me that if the bladder problems are caught early enough, many people can retrain their bladder, and what I described above, is the 1st way of trying to re-train things to work right.

I was originally dx. with CES, becasue of the symptoms. But when I had my EMG/NC test, it just showed chronic nerve damage on my right side, but usually if you have CES...evidently your nerve damage is off the charts on this test, and mine wasn't. So, 2 of my Drs. still said that with the symptoms, it had to be CES. The other 2 said they did not think it was CES. Then I started to loose stregnth in my legs and started falling as I tripped over my own feet, and the pain from my back and down to my feet has cont. to worsen and is not getting better with any of the treatments that have been tried. So, I have finally been dx. with Arachnoiditis. Many of the symptoms are the same as those of CES. I don't know what exactly the differences are, except that ARC. is progressive with uncontrollable pain. I am still learning about the ARC. I was frightened by learning about CES a year ago and now that I know everything I need to know about it...I am having to learn about the ARC. Does it ever end

Please feel free to ask me any questions that you have. I know it is scary when you realize you have these new symptoms and don't have any answers. I also had a hard time asking questions, because I was kind of embarassed to talk about it. Don't be embarassed or scared, just learn what you need to know and start to get into see your Dr. to get a referal for a Urologist.

Lorie

Thanks Lori, so when you have symptoms like mine, they dont take you to surgery or order a mri? I am curious because today was the first day I had these symptoms. So once you have the symptoms I have, the just diagnose you with ces and wait and see? I am just confused because I heard this is a emergency symptom to report, but they did not do anything, so what's the use of reporting it? I am sorry you had to go through this, did it get progressively worse over time or a one time thing? I wont see my w/c doc until monday and who knows how long it will take to see the uroligist. I mean things can get worse in between times right? Thanks alot you have been so helpful.

[lfoster21]

"so when you have symptoms like mine, they dont take you to surgery or order a mri?" Correct, they only dx. the bladder/bowel problem and try to re-train them to work correctly.

"I am curious because today was the first day I had these symptoms. So once you have the symptoms I have, the just diagnose you with ces and wait and see?" Well they do dx. you, but they deffinately won't be waiting and seeing. It is going to take a lot of trial and error and work, to find what works best, to retrain your bladder and bowels. Then, once you find what works, you will have to keep it up. I see my Urologist every 3 months now, since we found what works. But it took seeing him every 3-4 weeks for several months to try new meds. until we found what works best. (BTW, for your bowel dysfunction, you will likly need to see a GI, if you are not able to have a movement every day or two.)

"I am just confused because I heard this is a emergency symptom to report, but they did not do anything, so what's the use of reporting it?" It is very important to mention it to your Dr. so they can start to beat the progression of the disorder. As for the ER, if is only an emergency to get to them immediately, if you loose control of you bladder or bowels. Now, I will tell you a sceret that I did myself. Until I got my bladder under control and I was able to pee throughout the day, I always kept a spare pair of pants in my care, whenever and wherever I went. I was embarassed at 1st and had every fear of what if it happened in this location or what if it happens in that location. I know the thought of having an accident in a public place is humiliating. Believe me, I know. That is why you want to get to a Urologist to get on a regular "pee" schedule. (sorry for such details, but there aren't a lot of people who I know you can feel comfortable speaking about these issues, so I am just saying it like it is).

"did it get progressively worse over time or a one time thing? I wont see my w/c doc until monday and who knows how long it will take to see the uroligist. I mean things can get worse in between times right?" Well, the progession is slow with chronic cauda equina, which is what a person has, with your symptoms. Not seeing a Dr. until Monday is not a problem at all. You can start doing the excercises that I told you about, while you wait to see the Urologist, as they are excercises that he would probably have you do anyway.

If you can imagine this...a person w/ cauda equina syndrome are perfectly fine one day and the next day they have peed themselves. This is what they talk about as being an emergency. It could also happen with bowels. Most of what you read on the web, describe this type. The difference that you can look for is the word "chronic" and "syndrome" . Read the articles that say "chronic", when you find them. They do not appear as often, but they are out there.

You still want to use this time to learn all you can about the syndrome, so if you ever find yourself in that position, you will already know what to expect etc. If you are ever concerned about thinking that you are leaking one or theother, call your Dr. and see if he wants you to meet him at the ER. The other thing I would begin now, request the records from that 1 visit to the ER. It will have the results of your nerve tests etc. You should take that with you to the back Dr. and possibly to the Urologist.

I hope this is understandable. You could possibly have years before it being an ER and it may never get to that point, if you and the Urologist can get you peeing. I always thought that when you loose control of your funcions was the only issue and that you had no way of knowing that it was going to hppen. To some extent that is true, however, the loss of control is not that your bladder could not stay shut to hold it all in...it is that you did not go enough ea. day and the fluids just kept building up, untill the bladder just became so outstretched and it overflows. So, there are numerous things the Dr. can do, to get you to pee, throughout the day. Then, it is possible that you may never have the other emergency problems.

Does this make sense? Let me know and I will check back tomorrow.

Lorie

[kkmom2]

Wow Lorie thanks so much for this info and thanks for taking the time to write all of this for me. I am sure this will be helpful not only to me but to others as well. I will continue reading up on this so I can learn more. I hope I do not have this syndrome though. I feel better today than yesterday, still have some difficulty starting the flow, but I will see the doc next week. Thanks alot.