Re: [QUAD-L] Syrinx

Lucky you Bob!!! I am aware of all these things but when I was diagnosed, scared to death, etc. I was living in my small hometown in upper New York State and there was no way I could make a trip to Denver or Miami even though I knew about both of them. But I was also in a panic mode because my symp

Re: [QUAD-L] Syrinx

Hi Again Bobbie and All, My previous email was sent via iPhone, now that I’m at my computer I can give you all the details. In my opinion, after doing a lot of research, the two places that know the most about Syrinx—(Syringomyelia) are the University of Miami School of Medicine (Miami Project)

Re: [QUAD-L] Syrinx

Ironic that you should bring this up now Bobbie. I was diagnosed with syringomyelia in 1994 and had my shunt surgery in 1995. The shunt took away all the terrible conditions it was causing (which took me 4 1/2 years to know something was wrong and to try to find out what I was having something I ha

Re: [QUAD-L] Syrinx Cyst?

Hi Greg, For what it is worth, I wrote an article about Syrinx’s, and there is another excellent article in New Mobility about an incomplete C5-6 quad that had a syrinx fixed. Here are the links: Para/Medic: Syrinx and Pain http://www.newmobility.com/2011/01/paramedic-syrinx-and-pain/

Re: [QUAD-L] Syrinx Cyst?

I know all about syrinxes. Most neuros wont drain a syrinx on a quad with a needle, you have to install a shunt. Its a scary deal. I need it done as well. Ron  On Saturday, January 2, 2016 7:24 PM, greg wrote: I know Cyrinx Cysts are quite common in quads, I have one that I haven't che

Re: [QUAD-L] syrinx

Hi Linda, New Mobility has two good articles about syrinx, I wrote one of them: Para/Medic: Syrinx and Pain. I will include the links below. The people that I know that have syrinx had a spinal cord injury first, and the syrinx is caused by scar tissue around the spinal cord injury. Yes, a sy

Re: [QUAD-L] syrinx

Hi,  Hosni-- I was told that about half the spinal cord injury people get a syrinx,  The situations are different for each person---in some cases it remains in the same area never causing much problems..OR it can spread or elongate over time--either very fast or very very slowly over time. It ca

Re: [QUAD-L] Syrinx

I agree totally with Tod below. And, even though I am not male, my symptoms began with lower abdominal PAIN whereby I could hardly think. SYRINGOMYELIA sux big time. Lori On Mon, Aug 24, 2009 at 10:44 AM, Tod E. Santee wrote: > Ron & David (mrpockets_2000): > ... I *do* know very few neurosur

Re: [QUAD-L] Syrinx

Ron & David (mrpockets_2000): ... I *do* know very few neurosurgeons will will work on a high-cord syrinx solely because of pain. If loss of function begins and continues, that's a bit different. There are just far too many risks for doing cervical cord surgery just because of pain. They'd pr

Re: [QUAD-L] Syrinx

with a syrinx at c1 c2 neuros wont operate unless things get really bad, like function loss. the key is never operate above your level of injury. the syrinx can cause pain in abdomen and back , because yours is higher the neck area is probally affected. depnding on where you are in the states i

Re: [QUAD-L] syrinx

Lori, when you 1st had syrinx surgury, was it because of pain? I am having new things go on with my body that really scares me...  My spinal cord rehab doctor took Mri's and said it looks like a few things could be going onBUT the syrinx is definity growing he said and for me to go to a

RE: [QUAD-L] syrinx

Sent: Wednesday, August 12, 2009 9:37 AM To: Danny Hearn; quad-list@eskimo.com; RONALD L PRACHT Subject: Re: [QUAD-L] syrinx Quick Note / Option: Check into Dr. Scott Falci (Fal' chee) at Craig Rehab in Denver. His nurse, Charlotte, is a great help. I had a syrinx caused by "t

Re: [QUAD-L] syrinx

> Dan H., Ron & others, > > Like I have said here probably 50 times or more - my syringomyelia makes > quadriplegia look easy. However, unless I start to lose more movement or > feeling - no one is going to fiddle around with my spinal cord again. Not > even Dr. Falci at Craig Hospital. As far as g

Re: [QUAD-L] syrinx

/12/09, RONALD L PRACHT wrote: From: RONALD L PRACHT Subject: Re: [QUAD-L] syrinx To: quad-list@eskimo.com Date: Wednesday, August 12, 2009, 1:18 PM The neuro at St. Johns your talking about is Selwyn Picker . He is from South Africa and is a very nice man. The problem I had with him is he

Re: [QUAD-L] syrinx

wrote: From: Danny Hearn Subject: Re: [QUAD-L] syrinx To: quad-list@eskimo.com, "RONALD L PRACHT" Date: Wednesday, August 12, 2009, 7:26 AM I'll let you know Ron, We are trying to decide if I should see Picker at St.Johns or Wright, who you told us about. I saw picker af

Re: [QUAD-L] syrinx

due to severe burning pain I had an MRI taken a few years ago. The first radiologist to read it said "no abnormalities", everything looks normal. About a year later I took the images to a neurologist, he looked at them for a few seconds and told me I had a syrinx. After looking at syrinx images o

Re: [QUAD-L] syrinx

Quick Note / Option: Check into Dr. Scott Falci (Fal' chee) at Craig Rehab in Denver. His nurse, Charlotte, is a great help. I had a syrinx caused by "tethering" -- the cord was tethered --attached-- to the surrounding dura mater, the covering that surrounds the cord and brain and holds cereb

Re: [QUAD-L] syrinx

I'll let you know Ron, We are trying to decide if I should see Picker at St.Johns or Wright, who you told us about. I saw picker after first being diagnossed with a syrinx in about 1999 or 2000. But my daughter works for Washington University as a medical Assistant and seems to think I should se

Re: [QUAD-L] Syrinx

thanks  John, that would be cool.where is the nearest stem cell bank? lets all go get some ;)  dan h. --- On Thu, 8/6/09, John S. wrote: From: John S. Subject: Re: [QUAD-L] Syrinx To: daa...@aol.com Cc: quad-list@eskimo.com Date: Thursday, August 6, 2009, 2:12 PM They don&#

Re: [QUAD-L] Syrinx

best. john From: "daa...@aol.com" To: r.pra...@sbcglobal.net; quad-list@eskimo.com Sent: Thursday, August 6, 2009 1:33:59 PM Subject: Re: [QUAD-L] Syrinx So sorry you're going through so much pain.  I thought I had one also a number of years ago an

Re: [QUAD-L] Syrinx

Thanks, Ron and Dana.  Dan** --- On Thu, 8/6/09, RONALD L PRACHT wrote: From: RONALD L PRACHT Subject: Re: [QUAD-L] Syrinx To: quad-list@eskimo.com Date: Thursday, August 6, 2009, 11:11 AM The main neurosurgeon at Wash U is Neil Wright. I will check the spelling of the last name in my

Re: [QUAD-L] Syrinx

--- On Thu, 8/6/09, daa...@aol.com wrote: From: daa...@aol.com Subject: Re: [QUAD-L] Syrinx To: r.pra...@sbcglobal.net, quad-list@eskimo.com Date: Thursday, August 6, 2009, 12:33 PM So sorry you're going through so much pain.  I thought I had one also a number of years ago

Re: [QUAD-L] Syrinx

So sorry you're going through so much pain. I thought I had one also a number of years ago and I remember how scared I was each time I got a MRI for a number of years.. Mine turned out to be scar tissue. I hope you can find and go to the expert and they were will do something if they kno

Re: [QUAD-L] Syrinx

The main neurosurgeon at Wash U is Neil Wright. I will check the spelling of the last name in my notes. I went to him twice a few yrs ago, but he wouldnt do the surgery because I had no function loss .I was told this guy is the main neuro down there and kinda pulls the strings of the others. Im

Re: [QUAD-L] syrinx question

Did you receive my input too? I see that I am not getting any quad list posts through my Comcast address (and haven't been for almost a week or so) but I am pretty sure that I sent it to you privately too. Perhaps the same reply did not make it to the quad list via Comcast. Lori On Tue, Mar 25,

Re: [QUAD-L] syrinx and operation success

;[EMAIL PROTECTED]> To: quad-list@eskimo.com Sent: Thursday, August 23, 2007 9:42:59 AM Subject: Re: [QUAD-L] syrinx and operation success curious about the surgery to drain a syrinx. How do they get through the vertebrae to reach the syrinx? Drill a small hole or remove a chunk of bone? Do

Re: [QUAD-L] syrinx and operation success

curious about the surgery to drain a syrinx. How do they get through the vertebrae to reach the syrinx? Drill a small hole or remove a chunk of bone? Do they have to expose the spinal cord? I've been suffering from severe pain for about three years, gets worse all the time, neuropathic pain med

Re: [QUAD-L] Syrinx

I really feel for all of you that are suffering from this malady. I personally went through this for three weeks just following my initial injury. It was horrific and I don't know how you are able to cope as well as you do. I do have nerve pain which can be described as cold and hot with pins an

Re: [QUAD-L] syrinx and craig

do you happen to have falci's statistic sheet? after 3 years of severe pain, I was diagnosed a few weeks ago w/ a syrinx. curious about his success rate. On 8/18/07, RONALD L PRACHT <[EMAIL PROTECTED]> wrote: > > im a c7 quad with a syrinx at injury site. i called craig and sent them my > mris a

Re: [QUAD-L] Syrinx

Silas, I also have a syrinx that causes severe pain. I have never lost any function, just had an increase in nerve pain over the years, so finally went to my neurosurgeon to have a MRI 6 1/2 years ago and it showed I had a syrinx. My neurosurgeon decided to try the shunt surgery, which others

RE: [QUAD-L] Syrinx

whats a syrinx Kevin M. Rudolph Louisville, Kentucky 40214 E-Mail: [EMAIL PROTECTED] Web site: http://www.turbokev.com Instant Messengers: AOL: kyprincecharming ICQ: 28414413 MSN: [EMAIL PROTECTED] Yahoo: turbokev -Original Mes

Re: [QUAD-L] syrinx question

I was under the belief that syrinx formed where the flow of spinal fluid was interupted or altered although I couldn't tell you if the tissue was starved of fluid or flooded by it.   john   In a message dated 8/31/2006 10:11:38 AM Eastern Daylight Time, [EMAIL PROTECTED] writes:  Ron, the doctor

Re: [QUAD-L] syrinx question

 Ron, the doctors told me that they don't know why they grow or spread up and down the spine..some peoples will stay the same size pretty much forever--others will grow very fast, while others will slowly grow or spread over many many years...so do what you like as it seems there are no clear a

Re: [QUAD-L] syrinx question

Sidewalk opinions are great, but when you want expert answers to a question like that you should go to Dr.Bart Green at the Miami Project.  Dr. Green accepts emails and will often personally answer those questions.  Try it. Best Wishes W   In a message dated 8/31/2006 12:28:12 AM Central Day

Re: [QUAD-L] syrinx pain or neuro pain

x27;s basically why I went ahead with the pump. Corie - Original Message - From: Brien To: Corie Jones Cc: quad-list@eskimo.com Sent: Friday, April 28, 2006 12:57 AM Subject: Re: [QUAD-L] syrinx pain or neuro pain My pain anesthesiologist has mentioned a spinal stimu

Re: [QUAD-L] syrinx pain or neuro pain

In <[EMAIL PROTECTED]>, on 04/28/06 at 12:57 AM, Brien <[EMAIL PROTECTED]> said: >My pain anesthesiologist has mentioned a spinal stimulator. Are you >aware of this? I had one of those. Did nothing for me. Your mileage may vary. Alan -- --

Re: [QUAD-L] syrinx pain or neuro pain

f) that it helps with neuropathic pain.  So I'm still hoping the local anesthetic will help and considering the other option for the future.Corie- Original Message -From: BrienTo: quad-list@eskimo.comCc: quad-list@eskimo.comSent: Thursday, April 27, 2006 12:37 AMSubject: Re: [QUAD-L] syrin

Re: [QUAD-L] syrinx pain or neuro pain

ther option for the future. Corie - Original Message - From: Brien To: quad-list@eskimo.com Cc: quad-list@eskimo.com Sent: Thursday, April 27, 2006 12:37 AM Subject: Re: [QUAD-L] syrinx pain or neuro pain Have you considered spinal stimulation or medicine  pump?

Re: [QUAD-L] syrinx pain or neuro pain i Lyrica

t of people, so I hope it helps you when you try it. Corie- Original Message - From: Danny Hearn To: Corie Jones ; quad-list@eskimo.com Sent: Wednesday, April 26, 2006 6:07 AM Subject: Re: [QUAD-L] syrinx pain or neuro painCorie, that sounds a lot like my same type of pain... m

Re: [QUAD-L] syrinx pain

not sure how i got into this but i haven't been tested for or know if any of this applies to me i hope everyone who has gets treated well simple name misplacement[EMAIL PROTECTED] wrote:Hi Amy,So sorry if you have syrinx and anyone else on the list suffering from this, they though

Re: [QUAD-L] syrinx pain or neuro pain

a break and feel normal again.  I'm glad to hear the Neurontin is helping some for you.Hang in there everyone!CorieC4-5, incomplete, 12 1/2 yrs. post- Original Message -From: Robert BrennanTo: quad-list@eskimo.comSent: Tuesday, April 25, 2006 9:09 AMSubject: Re: [QUAD-L] syrinx pain

Re: [QUAD-L] syrinx pain

Hi Amy,So sorry if you have syrinx and anyone else on the list suffering from this, they thought I had won a number of years ago, and I was monitored with the number of MRIs, until a neurologist determined it to be scarring instead of a syrinx.  I went to a syrinx seminar, that was in Kansa

Re: [QUAD-L] syrinx pain or neuro pain

Danny Hearn To: Corie Jones ; quad-list@eskimo.com Sent: Wednesday, April 26, 2006 6:07 AM Subject: Re: [QUAD-L] syrinx pain or neuro pain Corie, that sounds a lot like my same type of pain... mine started getting worse the last 2 yearsI was wondering if you have tried L

Re: [QUAD-L] syrinx pain

: RONALD L PRACHT <[EMAIL PROTECTED]> wrote: It really does suck to have a syrinx. Its the biggest no win situation Ive ever been in besides spinal injury itself. I ask myself why suffer everyday if I can get it drained or shunted? Then the docs tell you about the major ri

Re: [QUAD-L] syrinx pain

In a message dated 4/25/2006 5:11:06 P.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: It really does suck to have a syrinx. Its the biggest no win situation Ive ever been in besides spinal injury itself. I ask myself why suffer everyday if I can get it drained or shunted? Then th

Re: [QUAD-L] syrinx pain or neuro pain

In <[EMAIL PROTECTED]>, on 04/25/06 at 10:27 PM, "Corie Jones" <[EMAIL PROTECTED]> said: >I completely understand how you feel Rob (and others on the list who are >suffering with pain), I have been suffering with neuropathic pain (also >called central pain) for over 12 years. Mine started sev

Re: [QUAD-L] syrinx pain

In <[EMAIL PROTECTED]>, on 04/25/06 at 07:33 AM, Danny Hearn <[EMAIL PROTECTED]> said: >Yep, exactly right Ron.. It is very high risk they told me, and has left >some who had arm movement completely paralyzed. I have some pretty good >day's then WHAM ! 2 or 3 in a row that are pure torture. L

Re: [QUAD-L] syrinx pain or neuro pain

rmal again.  I'm glad to hear the Neurontin is helping some for you.Hang in there everyone! CorieC4-5, incomplete, 12 1/2 yrs. post - Original Message - From: Robert Brennan To: quad-list@eskimo.com Sent: Tuesday, April 25, 2006 9:09 AM Subject: Re: [QUAD-L] syrinx pain or neuro

Re: [QUAD-L] syrinx pain or neuro pain

or you.Hang in there everyone! CorieC4-5, incomplete, 12 1/2 yrs. post - Original Message - From: Robert Brennan To: quad-list@eskimo.com Sent: Tuesday, April 25, 2006 9:09 AM Subject: Re: [QUAD-L] syrinx pain or neuro pain I acquired quadraplegia in December of

Re: [QUAD-L] syrinx pain

what kind of horror stories?RONALD L PRACHT <[EMAIL PROTECTED]> wrote:It really does suck to have a syrinx. Its the biggest no win situation Ive ever been in besides spinal injury itself. I ask myself why suffer everyday if I can get it drained or shunted? Then the docs tell you about the major

Re: [QUAD-L] syrinx pain or neuro pain

I acquired quadraplegia in December of 97 (ho ho ho). Pain kicked in late 99. I began taking Neurontin August of 2005. Pain levels have decreased from 8 , 9, even sometimes an unbearable 10. Now it's 4 and 5,even that's pretty intense but i would just love 1 hour pain free just to remembr wha

Re: [QUAD-L] syrinx pain

Yep, exactly right Ron.. It is very high risk they told me, and has left some who had arm movement completely paralyzed. I have some pretty good day's then WHAM ! 2 or 3 in a row that are pure torture. Like I told Lori and a few others in here...I could actually really love life even being paralyze

Re: [QUAD-L] Syrinx!

What is a syrinx?  Im having all this pain that I haven't had before.   I was diagnosed with having a syrinx at C 6 in December 2005 after having an MRI. It was explained to me by my spinie Doctor that it is a fluid based cyst. It causes pain, numbness and loss of function due to pressure pressi

Re: [QUAD-L] syrinx fun...........Hey Lester

well they didn't recommend anyone here in st. louis. they said i was a candidate for surgery.im not losing functions yet but pain is worse and energy is about half what it was b4 syrinx. you are very lucky to have craig, i would kill to get there, lol