Twitching, nasal regurgitation, urinary incontinence?

[cardiactec]

Hi all,

I am curious if any of you with chiari or Syringomyelia have experienced any muscle twitching, swallowing problems, or urinary incontinence issues?

Thanks!

[The_Marine_Corp_Brat]

Most of us have similar issues, although no ones are the exact same. I have a laundry list of those and other problems! I also have many other health issues as do most Chiarians. A true Chiari specialist is your best bet, although they can be hard to find Selma has posted the link for you! :) Never be afraid or embarrassed to ask questions here. We've either been there done that or know one of the others that has! This is the best place for answers as you are speaking to people here that have not only been through it but are willing to give of themselves and tell ou what they've been through and will hold your hand while you go through it, either you personally or a loved one that you are searching for answers for! :) They give from their hearts as they truly understands what it means to have Chiari and can and will talk you through your ups and downs! :)

[The_Marine_Corp_Brat]

Unfortunately I'm not sure that what works for normal people with bladder issues will work for those of us with Chiari...remember theirs are true bladder problems and ours stem from nerve damage due to Chiari. I wish there was something for it! The potty dance isn't cute when your not a little one! Lol!

[chefs2]

i was reading a post and saW bladderproblems going to pee alot is there any thing to take forthat im haviung same problembut dr. seems clue less    an y ideas thanks steve

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry ur DS is having to deal with this dx, and yes, it can cause bowel and bladder issues...
Shannon- ur issue may have been ur childbirth not sure if chiari played a role or not with u...

But a 7 yr old, it is possible....does he tend to walk tippy toed?.....could be he has a tethered cord and that can affect the bladder. If he just had a growing spurt that may be y it seems to have happened suddenly.

The posted u addressed ur post to is not an active member so I hope u do not mind the rest of us popping on and offering support and info.

  U deff want a true chiari specialist and make sure ur DS has more testing to see how this  chiari is affecting his overall health and if he has related issues.

[Shannon12012]

You all are teaching me so much! You mean to tell me that my CM is the reason I had a bladder sling put in back in Sept NOT  that I’ve had 4 vaginal delivers? Cause honey I wet myself Mon-Fri like clockwork my 30 min ride home from work was torture. And the walk up the stairs to my apartment was downright hilarious my kids would open the door for me and laugh as I danced my way across the floor to the bathroom.  It never failed always a sec too late :( Also when I have the episodes that force me into the ER loss of movement and speech ear stopped up I have not been able to hold my pee and the amount is excessive!  Thanks cardiactec for asking the question I have learned a lot. I see that this is a old post but it is still relevant :)

[Rahe28]

Chiari can def be the culprit. At  7 I am more than sure that he does not want to be pottying on himself. I have a 7 yr old as well, and  if he  goes to the bathroom and gets even the slightest amount of pee on his undies, he runs to change them, and gets all embarassed. There are alot of  weird things that effect our daily lives  when living with Chiari. They may not happen on good days and to someone without Chiari, it could appear as though we use it as an excuse. Does he have other symptoms as well? There are so many odd and unusual symptoms and they are different for each person with Chiari, because the part of the brain and nerves it effects  due to the size and shape of our herniatin and whether or not there is synrix involved differs in us all. I understand that our 7 year olds can be quite the slick little men....however I doubt that his incontinence is      him being too darn smart. It would probably be more like I have a HA so I cant do my homework, or My eyes are blurry so I cant read....etc. If he  is going to use it as an excuse I would tend to think that it would be more along those lines not involoving bathroom issues, because to a 7 year that is VERY embarassing, whether its just mom that knows or the whole class, its just too embarassing. IS he  having trouble at school too, or just at home?

[ewintersfl]

My son is 7 yrs. He has recently been diagnosed with Chiari 1 with a 9mm protrusion. He has alot of symptoms but nothing overly serious thank goodness. My question is: He has recently begun having incontinence issues. Does this just start happening or is he possibly too smart and using his Chiari as an excuse? He changes his undies immediately when it happens so it's not that he doesn't care that he is wet. I don't want to punish him if it is a real issue but I don't want him using his Chiari as an excuse either.

[cardiactec]

Niki - Same here. I've been diagnosed with several things but nothing really to SUM IT ALL UP. There's got to be one solid cause to all of what I've been dealing with.

I hope you get some answers soon to all YOUR troubles!

HUGS back!

Angela.

[niki3350]

Still under investigation after three very long years, have cerebal ectopia confirmed but am awaiting further tests results from cine mri and neck thoracic mri,

Initially tested for ms,lupus, vitamin deficiency all results negative.... they then noticed cerebral tonsil decent so am waiting for results on overcrowding and csf blockage!!!!

Has been three years of hell and over here in England you wait,wait,wait, and nobody listens,or takes yr symptoms seriously.  We have very few cm specialists so the wait continues until I get apt to see one, at moment I see NL who really is cm ignorant........

Hugs
Niki x x x

[cardiactec]

Niki - thanks for sharing your story with me. what you are current diagnoses?

[niki3350]

P.s Forgot swallowing has become problamatic for me just recently but only when I am lying down, almost feels as if throat closing over.
Niki x x x

[cardiactec]

burdzmom, oh goodness - I am peeing everything I sit on - and BTW, just for the record, I do not have children so can't blame it on that!

I am still in the process of being diagnosed. My current diagnoses are:

POTS (I have heart rates in the 200 BPM) range
gastroparesis (I have a pacemaker for this, which now has to be explanted in order to get a MRI)
small bowel dysmotility
ehlers danlos type III
Atrial and Ventricular tachycardia
Mitral valve prolapse

And I think that's enough!!!

[niki3350]

Yes honey you are not alone I too get incontinence but usually first thing a.m just cannot hold my wee!!!  embarrasing yes!!!! but glad we can hlp answer you questions on here, we are all one big happy family of sufferers.

Twitches yes but more tingling electric type pain/sensations that I experience, but we are all different!!!

Hugs
Niki x x

[n40066]

yes, you can have a normal neuro exam with sm as well as cm.
unfortunately, cm and sm don't ask for an ID....they don't care what race, religion, sex or sexual prefernce you have.  and MOST drs don't have a clue because they have not been educated in the field.  sad, but true on all counts.  stinks, but we have to make the best of what we have to work with.  that's why this board is so important!  when someone finds a dr that does have knowledge or is at least willing to learn, it is essential to share that so those who follow may have an easier and/or shortened journey.  have you actually been dx'd with sm or cm yet or are you still on that path of discovery?

[burdzmom]

its comforting to know im not the only one peeing my pants OR knocking people over to get to the closest potty!!! LOL!!!

[cardiactec]

Is it possible to have a normal neuro exam with Syringomyelia?

I am having an MRI based off of two abnormal test results :

1. EMG - only mildly abnormal in my left arm and left leg
2. Evoked Potential -- the SSEP part of BOTH legs was abnormal/arms were normal....

I am only 28 and have baffled all Boston neuro's!! LOL.

Thanks for both your responses. I appreciate it!!

[n40066]

i see selma got you on that question....  i do know that it is common to have absent reflexes with chiari, though.

[selmaS]

Hi and welcome to the Chiari/Syringomyelia forum.

Actually for a syrinx u would also be hyperreflexic.....at level with the cyst and below the cyst...

Everyone is different...so do not read too much into all this..wait and see what ur drs find.

"selma"

[cardiactec]

Thank you Elizabeth! My neuro thought for awhile that I had MS, but a spinal tap was negative, his neuro exam actually showed ABSENT reflexes and not HYPERREFLEXIA (which is what it seen in MS).... I am going for an MRI on december 13th to see what is going on....

are absent reflexes common with Syringomyelia?

[n40066]

all the time!  the twitching and reflux/ absent gag reflex are staples of chiari.  urinary incontinence happens mostly when the brain has been compressed for so long and it has caused nerve damage or other issues like sm.  it is also common in folks with tethered cord.  so yes...in answer to your question, many of us experience these symptoms.
your welcome!
elizabeth