Chiari Malformation Community
Urinary problems
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Urinary problems

Yesterday I was outside walking from the barn back to the house. I had the feeling that I needed to pee really bad and didnt make it to the house.

I couldnt believe what happened. came in, showered, changed and figured it was just a one time thing.

Later in the day I went to pick up kids. stopped by store to grab a few things and as I was walking I felt the need to urinate and instantly leaked quite a bit. i was able to control it from doing what happened earlier but still had to take my coat off and tie around my waist. I headed out and home to change again.

At home I have been able to go more often to reduce the uncontrollable urge.

This morning I almost did it again. Good thing The bathroom is so close but almost didnt make it. This has never been an issue before and I am sure it is something that is common with Chiari or not.

I did just get approved for insurance again and will be making a follow up appt with my NL. I did find out that our hospital can do the CINE MRI but it has to be ordered by a doctor. I will talk to her about that.

Her and I have a lot to talk about.

Any advise would be helpful. Thank you.

Jen
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15 Comments Post a Comment
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1179332_tn?1297482590
Hi Jen,

I think this is pretty common with Chiari, I haven't had the issues as much as some but I have had some experience with what you are describing. I deal more with the leaking part but the funny thing for me is that it doesn't happen all the time but will come in spells. So the result is that I feel confident for awhile and then one day..whoops!! I have taken to wearing panty liners for a just in case scenario....I have never totally emptied my bladder though. I find when this happens that my girdle area and my bottom feel kind of numb and that usually happens when I've been on my feet a lot. So there may be some indicators to help you predict..

However, I don't know how many Dr's have asked me about bowel/bladder control and it seems to be a very important symptom. So make sure that it is on the top of your list to talk about when you see the NL!!

Carolyn
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1322693_tn?1308157496
I will definatly talk to her about it. I have also had a lot of twitching in my legs. Mostly my right one and the stabbing burning pain in my shoulders and arms.

I dont have the numb feeling that I have noticed. I will pay attention more. I am not working right now so I am not on my feet alot.

Thank you and I hope if anyone else has had this they will give some more advise.

Have a great evening.

Jen
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1435895_tn?1304294841
Hello Jen,

I have had the incontinence a few times.  Mostly my issues are peeing like I am pregnant.  Like I cant empty my bladder completely.  As soon as I finish I have to go again.  I have had a urology consult ordered for urodynamics to rule out neurogenic bladder.  Since I am so close to surgery I have decided to wait and see if it will resolve or at least improve with surgery.   If not I guess I will have to do it afterwards.  

Certainly this is important because it can get worse.  Make sure you mention it as an important symptom.  If your bladder isnt emptying completely it can affect your kidneys.  

Good luck with your next appt.

Pam

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620923_tn?1405964489

  Hi...U will want to have ur lumbar spine MRI'd as well, this could also indicate that u may have tethered cord.....some chiarians do have bladder issues, but, it is more a TC issue.

DO u know if u have a sacral dimple?...Have u ever been dx'd with IBS, GERD/acid reflux?

The urodynamics testing for the bladder is the best way to go, I had it done, it is not the most pleasant of tests, but it is more embarrassing  than painful.

I had the testing and do have issues, but I myself have not had the problem u have, my is the opposite I have to bend forward to push it out...and I strain...almost like having a BM... I go frequently and go very little each time....and if I wait, I get hot...my dr said it is bcuz it is a neuro issue that I get hot like that....I also went yrs not being able to feel the urge to go, I just had pain all down my spine. I now get the sensation which is good, but still have  problems...but am holding off on TC release surgery.

Do discuss this with ur dr as well.

"selma"
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1322693_tn?1308157496
Pam... I feel like i empty my bladder all the way. Never have I felt otherwise. I will leak a tiny bit after going as I stand up. I know I have joked for years that I have a small bladder because I have to go all the time and I have leaked large quantities before..... but never had the feeling of having to go come on so quickly and then having no time to react.

Selma....I do not have the dimple (I had to go check lol) I have never had an issue with acid reflux and no IBS. The only bowel problems I have had is not being able to go. Not constipated, just no feeling there when I sit down. It is like the muscles that help things along (dont want to get too graphic) turn off. That will last for over a week or so sometimes.

I do know that my legs fall asleep when I sit and I cant sit/lay on a firm surface on my back because the horrible pain in my tailbone. I dont know if that means anything or not.

I do plan on talking to her about the full mri of my head and back. It haas been a year since my last mris. i need them updated. (only head and cervical was done)  

I am writing out my list for the NL tomorrow. Thanks for the imput.

Jen
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1372734_tn?1309953837
Oh Honey I here you with the peeing, this started for me back in August first thing in the morning is a total disaster, I am peeing before I get to the toilet, so embarrasing.

I am also peeing loads on average 14 times a day, sad yes but I have been keeping a talley chart in my bathroom as it gets ridiculous, I have never fully wet myself but do release through the day if I cant get there quick enough.

When I need to go now its like desperate straight away, a bit like you have been holding for hours but you have not.  I now find myself planning where toilets will be if I have to go out anywhere.

I have told my NS about this and go back the end of march so hopefully I may get answers or help.

You are not alone so hang on in there and get that list done honey, mine was huge I put everything down on it, so dont miss things out that you feel are not related, just go for it and write it all down, I broke my life up into sections, home,work,driving,walking etc etc and then wrote down all symptoms that affect me on a daily basis, Honey you would be astonished at what you come up with.

Hugs
Niki x x x
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999891_tn?1407279676
I was DX with a Neurogenic bladder, my Doctors say it is due to disruption of nerve pathways in my spinal cord.....

Ray

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001761
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620923_tn?1405964489

  I never feel constipated either, but the not going has been classified as IBS by the drs I have gone to...this is since I was very young.....so all my life. I never agreed with the dx...but as u said I  have told the drs, I do not feel a need to go, it does not move down...lol...so I understand what u mean.....

This can still be a chiari issue...and u still should be checked for TC to rule it out.I also get the tail bone pain.....

Keep us posted on how ur visit goes : )

  "selma"
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1322693_tn?1308157496
Thank you for all the imput. This whole process has been frustrating.

Even though my daily headaches are more tolerable since I havent been working, the "episodes" I have are becoming more painful with each one.

My NL is very nice but I dont think she knows squat about Chiari. She has worked on ruling everything else out so this appt will talk about ruling Chiari out (since she seems to think that is not causing all my problems)

I have two lists...................one has my symptoms and the other one (since she thinks i suffer from some type of atypical migraine) is "can a migraine cause"  ................. such as daily tremors, hyperreflexia, leg and arm spasms with burning sensations, change in gag reflex, pressure in my head so bad I can barley sit or stand and even laying down hurts, eye twitching, urinary and bowel problems. All of this without light or sound sensitivity! We will see what she has to say.

I hope she doesnt pass my bowel problems up to constipation or IBS. Drs seem so willing to throw a diagnosis and not look more into it.

Jen
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1322693_tn?1308157496
Ray, do you TC or is it from the Chiari and pressure on your spinal cord and brainstem? Just wondering.

Thank you

Jen
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1570846_tn?1295833227
I have the same problem with urnitation. I am waiting for my results from a mri for tethered cord syndrome. i hope things go well for you.. I know it can be embarrassing and annoying but hopefully it will get better soon for you
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999891_tn?1407279676
Hi Jen, as far as I am aware I do not have TC, I do have "borderline CM" disk degeneration at different levels along with an intramural  cyst at T1, a Syrinx from C7 > T2.....my NS & Urologist say the over active bladder is due to Distortion of my spinal cord.

Ray
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1322693_tn?1308157496
Thnank you Ray. I appreciate the info.

I had a rough night and Im a little spacey so I will appologize right now if I say something that makes no sense.

It seems like the bladder problems go hand in hand with TC more often. Hoping my doctor will look onto it.

I woke up this morning and thank goodness my arms were attached because I could not feel them. They were not "asleep" I just could not tell you where they were until I moved them. My brain lost them.

I havent had insurance for alittle while becuase of loosing my job and now that I get to call my NL to set up a follow up I guess I am preparing myself.

I hate the word "borderline" I would take it out of the human vocabulary if I could.
If my doctor could spend just a few days in my head and body, she would have done a lot more by now.

Hope you have a good one.

Jen
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8633880_tn?1399072824
Did you ever find out if it was TC? I have been having a lot of problems peeing a lot. My son says it all the water I drink but I only drink 5 bottles a day. I also have horrible IBS especially if I drink coffee.
I was diagnosed with CM in February and I go see my second NS on Monday. I hope and pray he will do a decompression.
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620923_tn?1405964489

  Hi the member you are addressing your question to has not posted since 2012....you may want to send a PM (which will generate an e-mail) to let them know someone is trying to make contact.

Do you know if this NS is a true Chiari specialist....and what testing outside of your MRI have you had? DId they rule out related conditions?
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