Re: [QUAD-L] Bowel Problems / Syrinx

[Danny Hearn]

vengeance after all of that. It still shows up in my urine specimens, but the 
only thing that causes this sediment buildup and that is getting worse every 
week now. I have no idea what she will suggest when she comes back. I so wish 
my husband will live because him and my urologist here in Arizona used to get 
together to talk about different bacterium, because he had been a chief medical 
technologist back in the early 1970s, went to medical school and retained 
everything he learned I was like a second physician for me and saved my life on 
numerous occasions my lab results were wrong, and he could see that clearly and 
why.Losing my husband caused me to have "Psychogenic non-epileptic seizures." 
It was just too much trauma for me since he was everything to me. I have very 
little family left. These seizures have continued because they are triggered by 
periods/a day of great stress, pain or exhaustion, and that has happened 
numerous times since my husband's death. I was first put on "seizure 
medication" but later learned that these type of seizures are only caused by 
stress, pain or exhaustion or all of the above so the seizure medication that I 
was put on when they continued after my husband's death really doesn't do 
anything but I am afraid to go off of it as well.*Huge sigh*~Lori​
On Thu, May 12, 2016 at 7:04 PM, nichole rohling <zoocr...@windstream.net> 
wrote:

I am s leaning that way and your response just helps me lean that 
way a little more. Did you rule out other issues such as gall bladder, pancreas 
before you took the leap? Nicki  From: greg [mailto:g...@eskimo.com] 
Sent: Thursday, May 12, 2016 5:18 PM
To: nichole rohling
Subject: Re: [QUAD-L] Bowel Problems / Syrinx I was having lots of issues, some 
of that, some leakage, etc. I decided just to bag the whole idea So To Speak. 
Colostomy. My only complant is that I didn't do it 45 years ago. So 
much nicer, faster, less stress, less embarassing,  Greg> I was having issues 
last fall with having to call my caregiver to> come and get me on my shower 
chair about 2 hrs after I would get in> bed. I would have diarrhea or very 
loose stools.> > Dr. started me on a probiotic and it did help. Only had to 
call> caregiver once from November to last Thursday. I had to call> Thursday 
night, Sat, Sun and last night (I took lomotil Monday and> didn’t have to call 
Mon or Tues)> > I called Craig’s nurse hotline and she gave me several> 
possibilities as to what we need to check.> > Syrinx was 1 of them ad I have 
been having a very odd excruciating> pain in my shoulder joints.> > Anyone with 
a syrinx experience bowel issues? Or anyone experience> bowel issues like I 
am.> > We’ll be checking a number of other things too but just asking for> 
others’ thoughts, experiences.> > > Nicki



-- 
"Petting, scratching and cuddling a dog could be soothing to the mind and heart 
and deep meditation and almost as good for the soul as prayer." ~Dean Koontz


  

RE: [QUAD-L] Bowel Problems / Syrinx

[nichole rohling]

I am s leaning that way and your response just helps me lean
that way a little more. Did you rule out other issues such as gall bladder,
pancreas before you took the leap?

 

Nicki 

 

From: greg [mailto:g...@eskimo.com] 
Sent: Thursday, May 12, 2016 5:18 PM
To: nichole rohling
Subject: Re: [QUAD-L] Bowel Problems / Syrinx

 

I was having lots of issues, some of that, some leakage, etc. I decided just
to bag the whole idea So To Speak. Colostomy. My only complant is that I
didn't do it 45 years ago. So much nicer, faster, less stress, less
embarassing, 

 

Greg

> I was having issues last fall with having to call my caregiver to

> come and get me on my shower chair about 2 hrs after I would get in

> bed. I would have diarrhea or very loose stools.

> 

> Dr. started me on a probiotic and it did help. Only had to call

> caregiver once from November to last Thursday. I had to call

> Thursday night, Sat, Sun and last night (I took lomotil Monday and

> didn't have to call Mon or Tues)

> 

> I called Craig's nurse hotline and she gave me several

> possibilities as to what we need to check.

> 

> Syrinx was 1 of them ad I have been having a very odd excruciating

> pain in my shoulder joints.

> 

> Anyone with a syrinx experience bowel issues? Or anyone experience

> bowel issues like I am.

> 

> We'll be checking a number of other things too but just asking for

> others' thoughts, experiences.

> 

> 

> Nicki

RE: [QUAD-L] Bowel Problems / Syrinx

[nichole rohling]

Thanks Lori! I assume I’ll be doing a lot of testing!

 

Nicki

 

From: Lori Michaelson [mailto:lorilivin...@gmail.com] 
Sent: Thursday, May 12, 2016 1:44 PM
To: nichole rohling
Subject: Re: [QUAD-L] Bowel Problems / Syrinx

 

Hi Nicki,

 

It took me 4 1/2 years to get diagnosed with syringomyelia and a lengthy syrinx 
between 1989 and 1994. My symptoms were so misleading. I thought I had some 
sort of an abdominal issue because my primary symptoms were severe abdominal 
discomfort and pain as well as a huge increase in spasticity. I had every test 
done possible thinking I had to be something to do with my abdomen (but I was 
not having any irregular bowel problems). I had x-rays, CT scans, sonograms, 
etc. of my abdomen and colon. I even had an upper and lower G.I. series and 
EVERYTHING was negative.

 

It was not until my ex common-law husband lifted me into his truck in the 
passenger seat and we drove up to my sister's house. I sat in the passenger 
seat and my sister came out to see me because I did not bring my wheelchair. 
She asked me if I felt okay and I said yes and "why?" She said "Because you're 
right pupil is dilated." This was approximately 1993/April 1994 or so and I had 
had it. I KNEW SOMETHING WAS WRONG. It made going to work terrible. I was in 
pain all the time and my spasticity was out of control. That is when I called 
Greg hospital and a neurosurgeon told me to have an MRI [after I told him about 
my pupil dilation that stayed fixed for an entire week] to check for 
syringomyelia. Back then I had NEVER heard of syringomyelia and I was scared to 
death.

 

I had a shot live-in and it failed and I almost died for two weeks in Brooklyn 
New York. I chose the wrong neurosurgeon but did not know it at the time. After 
that one failed I had a syringo-plural shunt put in and I had it there ever 
since. I had many follow-up MRIs and they have all said that shunt is still 
working but I have not had an MRI done since 1998/1999. Since I almost died I 
am not letting anybody touch my spine again unless I am on my deathbed.

 

Bottom line - my syrinx never caused any problems with my bowels. BUT it caused 
all kinds of abdominal pain and discomfort. I even thought it was/might be 
bladder stones and I had a bunch of tiny ones removed but that was not the 
problem.

 

For me, syringomyelia is more disabling then quadriplegia by far. I did not 
begin to have pain in the area where my shunt is until 2 years later but it is 
caused by the muscle/nerve area that the shunt is woven through. The pain 
medication I am on keeps the pain at bay unless I get hurt by getting moved 
wrong by a caregiver or overuse that particular muscle.

 

That's my story. For you I would suggest thinking back over everything that has 
occurred over the last numerous months and by process of elimination... 
something might occur to you. Otherwise... I would also suggest having your 
stool checked for bacteria also.

 

~Lori

C4/5 complete quad, 36 1/2 years post

 

 

On Thu, May 12, 2016 at 11:13 AM, nichole rohling <zoocr...@windstream.net> 
wrote:

I was having issues last fall with having to call my caregiver to come and get 
me on my shower chair about 2 hrs after I would get in bed. I would have 
diarrhea or very loose stools.

Dr. started me on a probiotic and it did help. Only had to call caregiver once 
from November to last Thursday. I had to call Thursday night, Sat, Sun and last 
night (I took lomotil Monday and didn’t have to call Mon or Tues)

I called Craig’s nurse hotline and she gave me several possibilities as to what 
we need to check.

Syrinx was 1 of them ad I have been having a very odd excruciating pain in my 
shoulder joints.

Anyone with a syrinx experience bowel issues? Or anyone experience bowel issues 
like I am.

We’ll be checking a number of other things too but just asking for others’ 
thoughts, experiences.

 

Nicki





 

-- 

"Petting, scratching and cuddling a dog could be soothing to the mind and heart 
and deep meditation and almost as good for the soul as prayer." ~Dean Koontz

RE: [QUAD-L] Bowel Problems / Syrinx

[nichole rohling]

Yes. Waiting for my doctor to return my call so we can start testing and ruling 
things out.

 

Nicki

 

From: wheelch...@aol.com [mailto:wheelch...@aol.com] 
Sent: Thursday, May 12, 2016 12:56 PM
To: zoocr...@windstream.net; quad-list@eskimo.com
Subject: Re: [QUAD-L] Bowel Problems / Syrinx

 

Have you considered having a sample of your stool tested for high bacteria?

Best Wishes

 

In a message dated 5/12/2016 12:14:58 P.M. Central Daylight Time, 
zoocr...@windstream.net writes:

I was having issues last fall with having to call my caregiver to come and get 
me on my shower chair about 2 hrs after I would get in bed. I would have 
diarrhea or very loose stools.

Dr. started me on a probiotic and it did help. Only had to call caregiver once 
from November to last Thursday. I had to call Thursday night, Sat, Sun and last 
night (I took lomotil Monday and didn’t have to call Mon or Tues)

I called Craig’s nurse hotline and she gave me several possibilities as to what 
we need to check.

Syrinx was 1 of them ad I have been having a very odd excruciating pain in my 
shoulder joints.

Anyone with a syrinx experience bowel issues? Or anyone experience bowel issues 
like I am.

We’ll be checking a number of other things too but just asking for others’ 
thoughts, experiences.

 

Nicki

Re: [QUAD-L] Bowel Problems / Syrinx

[wheelchair]

Have you considered having a sample of your stool tested for high  bacteria?
Best Wishes
 
 
In a message dated 5/12/2016 12:14:58 P.M. Central Daylight Time,  
zoocr...@windstream.net writes:

 
I was having issues last fall with having to call my  caregiver to come and 
get me on my shower chair about 2 hrs after I would get  in bed. I would 
have diarrhea or very loose stools. 
Dr. started me on a probiotic and it did help. Only had to  call caregiver 
once from November to last Thursday. I had to call Thursday  night, Sat, Sun 
and last night (I took lomotil Monday and didn’t have to call  Mon or Tues) 
I called Craig’s nurse hotline and she gave me several  possibilities as to 
what we need to check. 
Syrinx was 1 of them ad I have been having a very odd  excruciating pain in 
my shoulder joints. 
Anyone with a syrinx experience bowel issues? Or anyone  experience bowel 
issues like I am. 
We’ll be checking a number of other things too but just  asking for others’
 thoughts, experiences. 
Nicki

Re: [QUAD-L] Bowel Problems / Syrinx

[RONALD L PRACHT]

Ive never heard of a post traumatic syrinx causing bowell issues with a quad. 
Syrinxes are very complicated in their symptoms though. If you read about it, 
ore than likely it will confuse you.  Ron 

On Thursday, May 12, 2016 12:15 PM, nichole rohling 
 wrote:
 

 I was having issues last fall with having to 
call my caregiver to come and get me on my shower chair about 2 hrs after I 
would get in bed. I would have diarrhea or very loose stools.Dr. started me on 
a probiotic and it did help. Only had to call caregiver once from November to 
last Thursday. I had to call Thursday night, Sat, Sun and last night (I took 
lomotil Monday and didn’t have to call Mon or Tues)I called Craig’s nurse 
hotline and she gave me several possibilities as to what we need to 
check.Syrinx was 1 of them ad I have been having a very odd excruciating pain 
in my shoulder joints.Anyone with a syrinx experience bowel issues? Or anyone 
experience bowel issues like I am.We’ll be checking a number of other things 
too but just asking for others’ thoughts, experiences.  Nicki