Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 In a message dated 2/9/2003 8:41:31 AM Eastern Standard Time, sjenkins35@... writes: > could someone please explain to me what a syrinx is and > what, if any, are the symptoms of this. > Hi Sharon and everyone, I wrote the following a while ago to explain syringomyelia. I thought I would go ahead and send it to the group so those who don't know can understand it a bit more. If you haven't already, check out the American Syringomyelia Alliance Project at www.asap.org. It has lots of great information. Hope this helps. A syrinx is the term more commonly used to refer to the cavity of cerebrospinal fluid (CSF) that is inside the spinal canal due to the disease/condition Syringomyelia. Syringomyelia is a chronic disease of the spinal cord. Cerebrospinal fluid " sneaks " into the spinal cord and stays lodged in there so to speak, usually elongating and expanding with time, however it can remained unchanged and non-progressive for many years and a lot of times the patient will stay asymptomatic. Syringmyelia (syrinx) can occur for many reasons. Some of those being: trauma, tumor, scarring, meningitis, arachnoiditis, or other conditions/diseases/accidents, but the most common cause of a syrinx is a Chiari malformation. The reason it occurs in chiari is because in chiari malformations the cerebellar tonsils are displaced below the foramen magnum (ring at base of skull at which the spinal cord and brain connect) and this blocks the regular flow of cerebrospinal fluid, with the flow being all or somewhat blocked a syrinx can then form. Please keep in mind though, that not everyone with chiari will have a problem with the flow of cerebrospinal fluid, and not everyone who has a problem with the flow of cerebrospinal fluid will develop a syrinx. There are many symptoms of Syringomyelia, and no two patients will ever be exactly alike. Some of those include: numbness/tingling in extremities, loss of sensation to pain, hot, and cold, weakness/atrophy in the muscles, loss of bladder/bowel control,etc., almost all people who are symptomatic have some central pain that is usually chronic, however I have talked to a few people who do have remitting pain. Treatment for Syringomyelia is usually surgery, however, conservative approaches are sometimes recommended. Usually, the surgery done for the syrinx is indirect, in the fact that in most cases the surgery performed is aimed to correct the problem that caused the syrinx in the first place, i.e., a decompression for a chiari malformation is almost always suggested as the first type of treatment in a chiari patient when a syrinx is present. Sometimes the syrinx will not dissipate and another operation is necessary to go back in and drain or shunt the syrinx. Untreated, syringomyelia can lead to worsening of symptoms, paralysis, quadriplegia, and can even prove to be fatal. Although, this is rarely the case. If caught in the early stages, a full recovery is possible and likely. Joanna/Atlanta (17 years) You can view my story at: http://www.pressenter.com/~chip/joanna.htmhttp://www.pressenter.com/~chi\ p/joanna.htm Chiari 1(17mm), Syrinx C1-T6, Pseudotumor Cerebri syndrome, Ehler-Danlos Syndrome, Neurocardiogenic Syncope, retroflexed odontoid, cervical instability, bulging discs, and a bunch of other related anomolies. Decompression, laminectomy, duraplasty- 7/27/01 Surgical debridement of staph infection- 9/8/01 VP shunt- scheduled for 3/10/03 Decompression, duraplasty, pseudomeningocele repair, cauterization of cerebellar tonsils, cranioplasty (titanium mesh plate), and fusion- scheduled for 3/12/03 Check out the Wacma Kids group at: http://groups.yahoo.com/group/wacmakids/http://groups.yahoo.com/group/wa\ cmakids/ I can also be reached at Joanna@... or KidsAsk@... There wouldn't be a heaven full of stars if we were all meant to wish on the same one. If at times you feel discouraged, look to your star. It was born to shine brightly, there in the darkness, just as you were born to dream and never give up. Hold onto your dreams and believe in yourself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 In a message dated 2/9/2003 8:41:31 AM Eastern Standard Time, sjenkins35@... writes: > could someone please explain to me what a syrinx is and > what, if any, are the symptoms of this. > Hi Sharon and everyone, I wrote the following a while ago to explain syringomyelia. I thought I would go ahead and send it to the group so those who don't know can understand it a bit more. If you haven't already, check out the American Syringomyelia Alliance Project at www.asap.org. It has lots of great information. Hope this helps. A syrinx is the term more commonly used to refer to the cavity of cerebrospinal fluid (CSF) that is inside the spinal canal due to the disease/condition Syringomyelia. Syringomyelia is a chronic disease of the spinal cord. Cerebrospinal fluid " sneaks " into the spinal cord and stays lodged in there so to speak, usually elongating and expanding with time, however it can remained unchanged and non-progressive for many years and a lot of times the patient will stay asymptomatic. Syringmyelia (syrinx) can occur for many reasons. Some of those being: trauma, tumor, scarring, meningitis, arachnoiditis, or other conditions/diseases/accidents, but the most common cause of a syrinx is a Chiari malformation. The reason it occurs in chiari is because in chiari malformations the cerebellar tonsils are displaced below the foramen magnum (ring at base of skull at which the spinal cord and brain connect) and this blocks the regular flow of cerebrospinal fluid, with the flow being all or somewhat blocked a syrinx can then form. Please keep in mind though, that not everyone with chiari will have a problem with the flow of cerebrospinal fluid, and not everyone who has a problem with the flow of cerebrospinal fluid will develop a syrinx. There are many symptoms of Syringomyelia, and no two patients will ever be exactly alike. Some of those include: numbness/tingling in extremities, loss of sensation to pain, hot, and cold, weakness/atrophy in the muscles, loss of bladder/bowel control,etc., almost all people who are symptomatic have some central pain that is usually chronic, however I have talked to a few people who do have remitting pain. Treatment for Syringomyelia is usually surgery, however, conservative approaches are sometimes recommended. Usually, the surgery done for the syrinx is indirect, in the fact that in most cases the surgery performed is aimed to correct the problem that caused the syrinx in the first place, i.e., a decompression for a chiari malformation is almost always suggested as the first type of treatment in a chiari patient when a syrinx is present. Sometimes the syrinx will not dissipate and another operation is necessary to go back in and drain or shunt the syrinx. Untreated, syringomyelia can lead to worsening of symptoms, paralysis, quadriplegia, and can even prove to be fatal. Although, this is rarely the case. If caught in the early stages, a full recovery is possible and likely. Joanna/Atlanta (17 years) You can view my story at: http://www.pressenter.com/~chip/joanna.htmhttp://www.pressenter.com/~chi\ p/joanna.htm Chiari 1(17mm), Syrinx C1-T6, Pseudotumor Cerebri syndrome, Ehler-Danlos Syndrome, Neurocardiogenic Syncope, retroflexed odontoid, cervical instability, bulging discs, and a bunch of other related anomolies. Decompression, laminectomy, duraplasty- 7/27/01 Surgical debridement of staph infection- 9/8/01 VP shunt- scheduled for 3/10/03 Decompression, duraplasty, pseudomeningocele repair, cauterization of cerebellar tonsils, cranioplasty (titanium mesh plate), and fusion- scheduled for 3/12/03 Check out the Wacma Kids group at: http://groups.yahoo.com/group/wacmakids/http://groups.yahoo.com/group/wa\ cmakids/ I can also be reached at Joanna@... or KidsAsk@... There wouldn't be a heaven full of stars if we were all meant to wish on the same one. If at times you feel discouraged, look to your star. It was born to shine brightly, there in the darkness, just as you were born to dream and never give up. Hold onto your dreams and believe in yourself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 In a message dated 2/9/2003 8:41:31 AM Eastern Standard Time, sjenkins35@... writes: > could someone please explain to me what a syrinx is and > what, if any, are the symptoms of this. > Hi Sharon and everyone, I wrote the following a while ago to explain syringomyelia. I thought I would go ahead and send it to the group so those who don't know can understand it a bit more. If you haven't already, check out the American Syringomyelia Alliance Project at www.asap.org. It has lots of great information. Hope this helps. A syrinx is the term more commonly used to refer to the cavity of cerebrospinal fluid (CSF) that is inside the spinal canal due to the disease/condition Syringomyelia. Syringomyelia is a chronic disease of the spinal cord. Cerebrospinal fluid " sneaks " into the spinal cord and stays lodged in there so to speak, usually elongating and expanding with time, however it can remained unchanged and non-progressive for many years and a lot of times the patient will stay asymptomatic. Syringmyelia (syrinx) can occur for many reasons. Some of those being: trauma, tumor, scarring, meningitis, arachnoiditis, or other conditions/diseases/accidents, but the most common cause of a syrinx is a Chiari malformation. The reason it occurs in chiari is because in chiari malformations the cerebellar tonsils are displaced below the foramen magnum (ring at base of skull at which the spinal cord and brain connect) and this blocks the regular flow of cerebrospinal fluid, with the flow being all or somewhat blocked a syrinx can then form. Please keep in mind though, that not everyone with chiari will have a problem with the flow of cerebrospinal fluid, and not everyone who has a problem with the flow of cerebrospinal fluid will develop a syrinx. There are many symptoms of Syringomyelia, and no two patients will ever be exactly alike. Some of those include: numbness/tingling in extremities, loss of sensation to pain, hot, and cold, weakness/atrophy in the muscles, loss of bladder/bowel control,etc., almost all people who are symptomatic have some central pain that is usually chronic, however I have talked to a few people who do have remitting pain. Treatment for Syringomyelia is usually surgery, however, conservative approaches are sometimes recommended. Usually, the surgery done for the syrinx is indirect, in the fact that in most cases the surgery performed is aimed to correct the problem that caused the syrinx in the first place, i.e., a decompression for a chiari malformation is almost always suggested as the first type of treatment in a chiari patient when a syrinx is present. Sometimes the syrinx will not dissipate and another operation is necessary to go back in and drain or shunt the syrinx. Untreated, syringomyelia can lead to worsening of symptoms, paralysis, quadriplegia, and can even prove to be fatal. Although, this is rarely the case. If caught in the early stages, a full recovery is possible and likely. Joanna/Atlanta (17 years) You can view my story at: http://www.pressenter.com/~chip/joanna.htmhttp://www.pressenter.com/~chi\ p/joanna.htm Chiari 1(17mm), Syrinx C1-T6, Pseudotumor Cerebri syndrome, Ehler-Danlos Syndrome, Neurocardiogenic Syncope, retroflexed odontoid, cervical instability, bulging discs, and a bunch of other related anomolies. Decompression, laminectomy, duraplasty- 7/27/01 Surgical debridement of staph infection- 9/8/01 VP shunt- scheduled for 3/10/03 Decompression, duraplasty, pseudomeningocele repair, cauterization of cerebellar tonsils, cranioplasty (titanium mesh plate), and fusion- scheduled for 3/12/03 Check out the Wacma Kids group at: http://groups.yahoo.com/group/wacmakids/http://groups.yahoo.com/group/wa\ cmakids/ I can also be reached at Joanna@... or KidsAsk@... There wouldn't be a heaven full of stars if we were all meant to wish on the same one. If at times you feel discouraged, look to your star. It was born to shine brightly, there in the darkness, just as you were born to dream and never give up. Hold onto your dreams and believe in yourself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2003 Report Share Posted March 19, 2003 > I've been reading the emails of some of you who have a syrinx and I was wondering...do you live with it because you choose to or because your doctor doesn't want to operate??? Danette > I live with mine because I have not yet been given the option of having decompression surgery for my Chiari. I have been asking for help from my HMO for 12 years, and only now are they starting to admit that I even have Chiari and Syringomyelia, although I've had them both for many years. They simply avoided facing the issue when they first noticed it on an MRI 4 years ago. Now I am medically educated, and my symptoms are worse, so I am working really hard to get them to refer me out for surgery. ~Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2003 Report Share Posted March 19, 2003 > I've been reading the emails of some of you who have a syrinx and I was wondering...do you live with it because you choose to or because your doctor doesn't want to operate??? Danette > I live with mine because I have not yet been given the option of having decompression surgery for my Chiari. I have been asking for help from my HMO for 12 years, and only now are they starting to admit that I even have Chiari and Syringomyelia, although I've had them both for many years. They simply avoided facing the issue when they first noticed it on an MRI 4 years ago. Now I am medically educated, and my symptoms are worse, so I am working really hard to get them to refer me out for surgery. ~Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2003 Report Share Posted March 19, 2003 > I've been reading the emails of some of you who have a syrinx and I was wondering...do you live with it because you choose to or because your doctor doesn't want to operate??? Danette > I live with mine because I have not yet been given the option of having decompression surgery for my Chiari. I have been asking for help from my HMO for 12 years, and only now are they starting to admit that I even have Chiari and Syringomyelia, although I've had them both for many years. They simply avoided facing the issue when they first noticed it on an MRI 4 years ago. Now I am medically educated, and my symptoms are worse, so I am working really hard to get them to refer me out for surgery. ~Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2003 Report Share Posted March 23, 2003 Hello, Here I go again, with my 2 cents worth!!! My syrnix was first found on a regular MRI almost 2 years ago. I was told that it was nothing, wasn't big enough and etc..... While dueing the research, I found ASAP and WACMA. Dr B was the 4th NSG I had been to in over 2 years... The 3rd one found the ACM, but he said that it was not severe enough and that I probably had spasmotic torticollis!! NOT!!!! My syrnix is between the T-1 and T-2 vertebrae and from the side view on my MRIs looks about the size of my little fingernail...BUT Dr B found on the 3d catscans I had done, that not only was my herniation worse than he thought, but my syrnix (little booger that it is) is much bigger on the cross section.... Make sure that your NSG is very knowledgable with ACM/SM!!! Terry B > >To: chiari >Subject: Re: syrinx >Date: Thu, 20 Mar 2003 03:52:41 -0000 > > > > I've been reading the emails of some of you who have a syrinx and I >was wondering...do you live with it because you choose to or because >your doctor doesn't want to operate??? Danette > > >I live with mine because I have not yet been given the option of >having decompression surgery for my Chiari. I have been asking for >help from my HMO for 12 years, and only now are they starting to admit >that I even have Chiari and Syringomyelia, although I've had them both >for many years. They simply avoided facing the issue when they first >noticed it on an MRI 4 years ago. Now I am medically educated, and my >symptoms are worse, so I am working really hard to get them to refer >me out for surgery. > >~Sandy > > >Help section: http://www.yahoogroups.com/help/ > >NOTE: NCC refers to posts with No Chiari Content > >To Unsubscribe Yourself: >chiari-unsubscribe > >WACMA Home: Http://www.wacma.com > >WACMA Online Group: http://groups.yahoo.com/group/chiari/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2003 Report Share Posted May 23, 2003 It is possible to get a syrinx later. In 1988 I had chiari with a 10mm herniation show up on MRI's. By the way, it was not mentioned on the MRI report. So chiari was not diagnosed. In 2001, my herniation had grown to 25-30mm, and I had a syrinx from C2-5 which was very wide. So yes, it can happen. Betsy P, St. Cloud, MN syrinx > Hi- quick ?- if you do not have a syrinx now and opt for no decompression, is > there a greater likelyhood of getting a syrinx later?- I hope that made > sense- I am not so sure it came out exactly as I had anticipated! > Thanks and peace, Joanie E > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2003 Report Share Posted May 23, 2003 It is possible to get a syrinx later. In 1988 I had chiari with a 10mm herniation show up on MRI's. By the way, it was not mentioned on the MRI report. So chiari was not diagnosed. In 2001, my herniation had grown to 25-30mm, and I had a syrinx from C2-5 which was very wide. So yes, it can happen. Betsy P, St. Cloud, MN syrinx > Hi- quick ?- if you do not have a syrinx now and opt for no decompression, is > there a greater likelyhood of getting a syrinx later?- I hope that made > sense- I am not so sure it came out exactly as I had anticipated! > Thanks and peace, Joanie E > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2005 Report Share Posted March 24, 2005 Are syrinx's common in mito? I have one, and so does my Mom. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2005 Report Share Posted March 24, 2005 Hi, I don't know if they are or not. But that is very interesting to know that others have this. Has yours or your mom's ever enlarged? Have you had any issues related to having the syrinx? Have you needed surgery to reduce it, like a shunt or a stint? Thanks. Praying for us all, AnnMarie L. - Complex IV (pre-diabetic, hypothyroid, adrenal/endocrine issues) Married to my best friend Rick, Very Busy Mom to (15), (12), Cassandra (6) and Joe (5) - complex IV, lactic acidosis, CP, tethered chord syndrome, dysautonomia, and a smile that never quits :-) klaga5 wrote: > > Are syrinx's common in mito? I have one, and so does my Mom. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2005 Report Share Posted March 24, 2005 I've only known about mine for 18 months or so. It's around t 6-8. My moms is around c-2. They haven't done anything with either of us. I'm sorry your son has had so much difficulty. Kim > > > > > Are syrinx's common in mito? I have one, and so does my Mom. Quote Link to comment Share on other sites More sharing options...
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