Fwd: [QUAD-L] Syrinx

list@eskimo.com > Subject: 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 S

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

[QUAD-L] Syrinx

I was diagnosed with a syrinx back in 1995 and, until now, have had no real problems. Since the first Saturday of December I can not feel my right hand 🤚 and using it, like I've been able to, has become nearly impossible. Picking up and holding a fork, tooth brush, spoon, pen, paint 🎨 brush, op

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

[QUAD-L] Syrinx Cyst?

I know Cyrinx Cysts are quite common in quads, I have one that I haven't checked on in years. Have you had one drained? Could you feel the difference? I go to the SCI Rehab doc next week, I'm making a list of things I need to talk about. A lot of my symptoms could be Cyst related. Or just getting

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

[QUAD-L] syrinx

I know we've discussed about syrinx before but I have some questions for you. I'll tell you whats going on. My oldest grandchild, Samantha was diagnosed 3 yrs. ago with a syrinx in her spinal canal at the C6 level, she was 12yrs old. That first yr she had no problems then last yr she started hav

Re: [QUAD-L] syrinx

: HOSNI AL-KHATIB To: Quad-List Sent: Wed, June 30, 2010 11:14:53 AM Subject: [QUAD-L] syrinx Hi My Friends I want to ask: when you  discovered that you have  syrinx? and what kind of problems that you have after the syrinx ? what is the best way for treatment? God Bless you

[QUAD-L] syrinx

Hi My Friends I want to ask:when you discovered that you have syrinx? and what kind of problems that you have after the syrinx ?what is the best way for treatment? God Bless you _ Your E-mail an

Re: [QUAD-L] Syrinx

erate 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 would > see out a specialist to give you an opinion. > > > > ron c7 > > > > --- On

Re: [QUAD-L] Syrinx

an 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 would > see out a specialist to give you an opinion. >   > ron c7 > > --- On Sun, 8/23/09, David wrote: > > > From: David

Re: [QUAD-L] Syrinx

would see out a specialist to give you an opinion.   ron c7 --- On Sun, 8/23/09, David wrote: From: David Subject: [QUAD-L] Syrinx To: quad-list@eskimo.com Date: Sunday, August 23, 2009, 9:42 PM I've had a syrinx located at C1/C2 and because the doctors say that there is a pretty

[QUAD-L] Syrinx

I've had a syrinx located at C1/C2 and because the doctors say that there is a pretty good chance of me ending up on a vent, I have elected to avoid surgery at this time. For those of you males who might have a syrinx, do you experience a lot if neuro-pathic pain between your shoulder blades an

Re: [QUAD-L] syrinx

Danny H. ) --- On Fri, 8/14/09, Lori Michaelson wrote: From: Lori Michaelson Subject: [QUAD-L] syrinx To: quad-list@eskimo.com Date: Friday, August 14, 2009, 1:34 PM My e-mail below was sitting in my drafts folder so I did not really know if it actually got to the list or not. I think it did

[QUAD-L] syrinx

ains worse. ANYWAY-- I'll let you all know > when I see the neuro surgeon. Dan H. > > --- On *Wed, 8/12/09, RONALD L PRACHT * wrote: > > > From: RONALD L PRACHT > Subject: [QUAD-L] syrinx > To: quad-list@eskimo.com > Date: Wednesday, August 12, 2009, 1:22 AM >

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

[QUAD-L] syrinx

I want to go to Colorodo and get Falci to work on me. I already sent them my mri and they said I can be helped with the surgery. Prob was they wont take United Healthcare as insurance. The price you ask? 50,000 to start, lol. I pissed off my parents when I told them the price and it wasnt covere

Re: [QUAD-L] syrinx

rse than this ! ( But believe me I wish I could go back to prior this >> year--those were the good ole days, lol ) I take pain meds every day now and >> even driving around my neighborhood in my wheelchair I need to go slow over >> bumps and cracks or it makes the pains worse. A

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

heelchair I need to go slow over > bumps and cracks or it makes the pains worse. ANYWAY-- I'll let you all know > when I see the neuro surgeon.   Dan H. > > --- On Wed, 8/12/09, RONALD L PRACHT wrote: > > > From: RONALD L PRACHT > Subject: [QUAD-L] syrinx > To: qua

Re: [QUAD-L] syrinx

e. ANYWAY-- I'll let you all know when I see the neuro surgeon.   Dan H. --- On Wed, 8/12/09, RONALD L PRACHT wrote: From: RONALD L PRACHT Subject: [QUAD-L] syrinx To: quad-list@eskimo.com Date: Wednesday, August 12, 2009, 1:22 AM Hey Dan H, please let me know what you find out c

[QUAD-L] syrinx

Hey Dan H, please let me know what you find out concerning your syrinx. Im going down the same road as you...will be going to wice to find out if mine has grown. Im interested in what the surgeons tell you in regards to what to do at this point. I truely wish the best results for you.   ron

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

in a similar situation with pretty constant pain, but no additional spasms as of yet. Will write more later.   ron c7 --- On Thu, 8/6/09, Danny Hearn wrote: From: Danny Hearn Subject: [QUAD-L] Syrinx To: quad-list@eskimo.com Date: Thursday, August 6, 2009, 9:26 AM  Ron, If you have the

[QUAD-L] Syrinx

 Ron, If you have the name of one of the top neuro surgeons at Washington U., can you give it to me again?? We can't find the paper we had wrote his name on. Dr. Wice had an MRI done and said I have a few things going on...and need to see a neuro surgeon. He said my syrinx is indeed growing and

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,

[QUAD-L] syrinx question

Hey, Thanks Dan and John, I read so much shit on the net about it I wasnt sure if my ideas were even on track anymore. Appreciate you telling me what you guys were told. ron c7

[QUAD-L] syrinx

Hey crew, Another thing to consider is most surgeons dont even see a syrinx as a reason to do surgery. They will argue with you saying that the syrinx might not be the reason for the pain or loss of function. Well...a syrinx does cause pain as well as a 100 other things and dont let the do

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

Corie > > - Original Message - > *From:* RONALD L PRACHT <[EMAIL PROTECTED]> > *To:* quad-list@eskimo.com > *Sent:* Friday, August 17, 2007 1:04 PM > *Subject:* [QUAD-L] Syrinx > > > Silas, > Lori is the syrinx expert but me and Dan also have them. Ive had mi

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

[QUAD-L] syrinx and craig

im a c7 quad with a syrinx at injury site. i called craig and sent them my mris awhile back. the woman that will talk to you is charlotte starnes, she is a nurse for scott falciwho has done over 1000 syrinx surgeries...he will even send you a statistic sheet of the 1000 surgeries he has

Re: [QUAD-L] Syrinx

selective hospitals, such as Craig Hospital do the surgery and I've heard that they don't like to do it on quads. Good luck, Corie - Original Message - From: RONALD L PRACHT To: quad-list@eskimo.com Sent: Friday, August 17, 2007 1:04 PM Subject: [QUAD-L] Syrinx S

RE: [QUAD-L] Syrinx

iginal Message- From: RONALD L PRACHT [mailto:[EMAIL PROTECTED] Sent: Friday, August 17, 2007 4:04 PM To: quad-list@eskimo.com Subject: [QUAD-L] Syrinx Silas, Lori is the syrinx expert but me and Dan also have them. Ive had mine for about 4 years. Basically its complicated yet simple, you

[QUAD-L] Syrinx

Silas, Lori is the syrinx expert but me and Dan also have them. Ive had mine for about 4 years. Basically its complicated yet simple, you either leave it alone and monitor the pain, or you find an expert to collapse the syrinx or put a shunt valve in. I talked with Craig Hospital i

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

[QUAD-L] syrinx question

Hi, I know only a few of us have spinal syrinxes, but Im one of the few. Do you guys think that swimming and lifting weights will make the syrinx grow? I keep trying to continue my rehab twice a week, and wheel a few miles in an attempt to keep weight off and stay healthy.Somewhere in my mind I ke

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

[QUAD-L] syrinx diagnosis

Hi, The only way you can know if you have a syrinx is through an mri. The number one symptom is new pain that you havent experienced before. I thought I had a bladder infection for the longest time when my pain started. I finally requested full testing from my primary physician and the syrinx was

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

[QUAD-L] syrinx pain

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 risks and people that have had syrinx operations tell you the horror stor

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

[QUAD-L] Syrinx!

Hey everybody, What is a syrinx? Im having all this pain that I haven't had before. Silas

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      

[QUAD-L] syrinx fun

this past neuro said surgery is easy and not complicated and i would really like to believe him, i guess the end result of the surgery is the biggest part im worried about, lol

[QUAD-L] Syrinx - what to do

   Hi Ron,   Don't recall your presence - you must be a silent lurker like many others :-)   I've posted my experience here many-a-time so I'll go try to find it in my outbox so I don't have to type it all over.   In the meantime ... I DID choose surgery (shunt to drain the CSF) but my experi

[QUAD-L] Syrinx development - Why? How?

Ron..   I have heard that many Drs now feel that the syrinx (for some) developed at the time of injury but symptoms don't develop till years later.  This follows true with the other SM condition (Chairi) whereby ANYONE is born with the cyst at the base of their brain but their symptoms don't