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Syringomyelia

What is Syringomyelia?

Syringomyelia is a chronic disorder of the spinal cord which consists of the formation of a fluid-filled cyst, also known as a syrinx, in the spinal cord. As the cyst enlarges over time, it can cause deterioration of the nerves.

 

Syringomyelia is a chronic disorder of the spinal cord which consists of the formation of a fluid-filled cyst, also known as a syrinx, in the spinal cord. As the cyst enlarges over time, it can cause deterioration of the nerves.

Acknowledgement of Syringomyelia has not been added yet.

The prevalence of Syringomyelia is approximately eight per 100,000 individuals. 

Name Abbreviation
SM SM

A syrinx may be caused by trauma to the spine or by a Chiari I malformation. Normally, the lower back area of the brain sits above an opening in the skull that allows the spinal cord to pass through it. Chiari malformation is a congenital malformation of the lower back area of the skull that allows the brain to protrude beyond that opening. This causes a disruption in the circulation of cerebrospinal fluid, the protective fluid that surrounds the brain and the spinal cord. This is the primary known cause of Syringomyelia. It is currently estimated that Chiari malformation results in approximately one-third of all currently known Syringomyelia cases.

An important gene often associated with this disorder is ACY1 (aminoacylase 1). Mutations of this protein-coding gene will usually cause central nervous system defects.

There are several neurological symptoms that may affect people with Syringomyelia. It may cause muscle atrophy or muscle wasting, loss of reflexes, and loss of sensitivity to pain and temperature. Other symptoms include having stiffness in the back, legs, shoulders, and arms, pain in the neck, arms, and back, and having bowel and bladder function problems. 

Name Description
Severe pain Severe pain, including pain induced vomiting.
Loss of feeling Temporary or permanent loss of feeling in various parts of the body.
Tingling or throbbing pain Sharp tingling or throbbing pain in un-isolated parts of the body
Loss of hot and/or cold sensations Loss of hot and/or cold sensations in some areas of the skin.
Hot and cold sweats Sudden hot and cold sweats.
Shooting pain Shooting pain in the arms and/or legs.
Weakness Weakness
Headaches Persistent extremely bad headaches.
Stroke Stroke
Blindness Blindness
Paraplegia Paraplegia
Quadriplegia Quadriplegia
Vertigo Dizziness

The diagnosis of syringomyelia typically begins with a complete physical examination. If syringomyelia is suspected to be present, a magnetic resonance imaging (MRI) will likely follow.

 

An MRI is able to visualize the presence of a syrinx in the spinal cord or other abnormalities related to syringomyelia such as Chiari malformation. 

Currently, there is no known medical treatment for patients with Syringomyelia; however, there are available surgical treatments. The type of surgery performed will depend on the type of Syringomyelia. In Chiari malformation, the surgery will help provide more space at the bottom of the skull and the upper neck. This type of surgery will usually result in stabilization or even improvements in symptoms. Other types of surgeries may involve draining the syrinx using a system known as the shunt. A shunt can slow down symptoms and relieve pain.

There is no cure, however, surgery may yield either temporary (in most cases) or permanent relief. Those who are not a candidate for surgery may be treated with pain management where controlled substances are commonly used. Some cases will yield no pain and, consequently, no treatment will be necessary other than periodic MRI scans to monitor the progression of the disorder.

Name Description
Get regular MRI Scans to Monitor Progression You should have MRI or CT Scans performed at least once a year or every 6 months to monitor the progression of the condition, if any. If your neurological symptoms appear to be getting worse it would be a good idea to have an MRI or CT scan as soon as possible. If you have no symptoms you may opt to go for a scan at least every 2 years due to the severity of this disorder.
Social Security Disability If you have been diagnosed with Syringomyelia you should consider immediately applying for Social Security Disability the moment you are symptomatic or receive the diagnosis. This disorder is considered a disability by Social Security.
Consult with a Neurologist immediately upon diagnosis. Upon diagnosis of Syringomyelia, an immediate consultation with a neurologist that is familiar with SM is advised. Knowing the status of your condition should be your first step.
Adjusting to a new lifestyle - Acceptance When you become afflicted with this disorder you will likely have to adjust to a new lifestyle, one of less physical activity most likely. You may be unable to do many of the things you used to, which can be very frustrating. Instead of being angry and upset, understand this is a process, alot like grieving over the death of a loved one. You will likely go through the same stages which include denial, anger, self pitty and then acceptance. You must learn to accept the changes and limitations you now have. If you need to speak with someone call the Syringomyelia Foundation (http://www.SyringomyeliaFoundation.org). They have counselors and case managers available to listen and provide advise and guidance for your particular case. Sometimes just talking to someone who knows what you are going through can make a huge difference.
Be Your Own Best Advocate You will likely face medical staff that has no clue what Syringomyelia is. Therefore, you should be as informed about the disorder, and your own case, as much as possible. Keep a binder of your medical records including a list of your current medications so that you are able to share the information with specialists or hospital staff should you have complications and require medical care. This will be particularly handy in the event of a medical emergency. Many of the neurological symptoms of SM are unknown to most medical professionals so educating them about your case (using your binder) will only help you receive better care.
References of Syringomyelia has not been added yet.
HelpAround Specialty Patient UX Testing Created by krystalqle
Last updated 3 Jun 2020, 10:21 PM

Posted by krystalqle
3 Jun 2020, 10:21 PM

Hi Everyone! My name is Krystal, and I am part of HelpAround, a digital health startup that's looking for user feedback on a mobile platform that we're building. The app is designed to help chronic/rare disease patients and their support systems manage their specialty treatments by providing them with any necessary logistical, educational and community support. We're looking for patients who are willing to give us feedback so that we can provide our current communities with a better experience.If you're interested, the UX testing details are below:

  • Goal: Understand which app feature(s) are and are not user-friendly
  • Demographic: Any patient who is currently taking specialty meds
  • Duration: 1 hour (each session will consist of a series of tasks)
  • Platform: Likely Zoom

We would love to hear your opinions and see how we can help improve the patient journey for those with rare diseases. If you are at all interested, please feel free to email me at krystalle@helparound.cc. Thank you so much! 

Syringomyelia symptoms appeared suddenly and progressed rapidly Created by Jester93
Last updated 14 Sep 2019, 01:18 AM

Posted by Jester93
14 Sep 2019, 01:18 AM

Falling Created by Cendriah
Last updated 15 Sep 2018, 10:49 AM

Posted by Cendriah
15 Sep 2018, 10:49 AM

Does anyone else have problems with frequent falls?  I have fallen six times in six weeks!  My left leg slides out like I am doing the splits.  I have absolutely no control over it.  I end up dropping down on my right knee—which stays bruised and swollen.  When I fall I hit my pelvis hard and pull my hamstring so badly that the back of my leg bruises from my pelvis to just below my knee.  I totally loose feeling in my left leg when I fall.  Then it has sever pins and needles with a deep deep ache.  Finally I get feeling back in my leg.  However, for several days afterward, I experience, weakness, pins and needles and cramps off and on, with a constant underlying deep ache.  I have fallen wearing shoes, barefooted, and while using a cane.  I don’t know what to do!

Vibrations Down Spine Created by Cendriah
Last updated 29 Dec 2017, 11:44 PM

Posted by Cendriah
29 Dec 2017, 11:44 PM

I found out what the vibrations were!  The syringomyelia has started causing  scoliosis.  The  neurologist said that the vibrations are my body trying to resist and readjust my spin as the deformity progresses.  She prescribed tizanadine, gabapentin, and water  therapy.  These things have really helped.

Posted by EnlightenMe
21 Jan 2016, 05:47 AM

I can't remember my details.. It's like t something to C something. I have trouble holding my neck up sometimes.. And walking or standing has been making me feel sick lately. But I do get creepy crawly feeling in my head sometimes. Sorry dunno why the comment went thru 3 times

Posted by Cendriah
20 Jan 2016, 12:45 AM

I have a small syringohydromyelia extending from T8 to T12 measuring up to 3 mm in cross-section at the T9 level.

View Full Thread (3 more posts)
Essential oils Created by Ericatom1
Last updated 3 Oct 2017, 09:45 PM

Posted by Celia
3 Oct 2017, 09:45 PM

I've used essential oils (mainly lavender and peppermint but possibly eucalyptus too) as a roll on applied directly to the source of a lot of my pain (ie shoulders and neck).  I also use pain patches containing similar ingredients, I believe.  If I apply them as tension and stiffness builds up, they can prevent my headaches from developing.  The pain patches seem to be pretty successful in treating a semi-established headache too!

Posted by Ericatom1
13 Jun 2017, 04:31 AM

It's been awhile but I'm back!  Been dealing with a lot since I've been gone.  I suffer from rheumatoid arthritis as well and recently discovered that the steroids that give me relief from the bone eating pain of RA have caused kidney disease.  Anyway, I was curious if anyone has used essential oils at all to help with any of the symptoms of SM?  

New to this my 8yo Son was recently diagnosed Created by MySonhasSM
Last updated 21 Aug 2017, 05:24 AM

Posted by Ericatom1
21 Aug 2017, 05:24 AM

Hello

im sorry to hear about this!  I don’t have much experience with this in children as I’m 30.  However I do know that while you need to get in to see a specialist very soon it may not be cause for panic.  Usually they are slow growing and it looks like his isn’t too big yet.  I think he’ll be ok at least until you see the specialist.  For me the worst part is the pain.  Make sure the dr knows that this can cause pain for people and that they address that for your son.  It may be hard to figure out if he is non verbal but everyone deserves adequate treatment for pain-even children and a lot of drs don’t address that aspect.  It can be hard to find a good dr for this so my advice is to keep looking if you don’t get the answers you need!  It is very frustrating to search for a dr that is educated in this but they do exist so please keep looking if you don’t get the answers you need.  If all else fails you may need to go to Mayo Clinic but don’t give up.  

Posted by MySonhasSM
20 Jul 2017, 03:06 PM

On Monay July 10, 2017 my 8 year old son Svenn had an MRI of the spine and brain...his second MRI (1st was just his brain). Tuesday I received a call from his care coordinator at Shriners Hospital Salt Lake City where his Dr. is from whom ordered the MRI (2nd Dr. to see him there for treatment for his Clubbed foot), any ways we were informed he had a Syringomylia in his spine and  to seek out a Pediatric Neurosurgeron immediately. I have been calling ever since Tuesday July 11th to try to get him into see one. I have been doing extensive research and am so scared that  he may end up with nerve damage or paralysis. So far the only symptoms that I can determine are periodic bladder and/or bowel control. He is a non-verbal child and does his best to communicate his needs, feelings and wants. All of his Orthopedic care is put on hold until the Syringomylia is addressed and properly diagnosed and treated accordingly.  Any thoughts and information is greatly appreciated. Below is a picture of Svenn's Syrongomylia.

Hoping to make a difference in rare disease research Created by 123Genetix
Last updated 16 Aug 2017, 08:54 PM

Posted by 123Genetix
16 Aug 2017, 08:54 PM

123Genetix is a new not-for-profit organization created to advance rare disease research with our predictive computer modeling technology. Our computer models are easily customizable by the investigator and have a number of important applications. They are designed for hypothesis generation, research and experimental planning, grant writing and identification of potential biomarkers. We are looking to make a difference in the world of rare disease research and plan on having some exciting announcements in the coming months. But we need to get the word out and raise awareness about our organization. If you wish to help us, please follow 123Genetix on Facebook or Twitter and/or join our email news list via the simple sign up on our website at http://www.123genetix.com/contact-us.html
 
Thank you for your time.

Exaustion? Created by Cendriah
Last updated 15 Jan 2016, 02:00 AM

Posted by Cendriah
15 Jan 2016, 02:00 AM

2muchpain, I am sorry to hear of your many spinal problems. I don't have nearly as many as you. So far my treatment has manly been to control involuntary movements and pain. Gabapentin worked very well in high doses. I have been able to get off of it now because the involuntary movements have eased considerably. I recently have tested positive for rheumatoid arthritis. I am still working full-time but am completely exhausted by the end of the day. My syrinx shrunk by half for a while but has increased in size lately. My spine problems are mild compared to yours. Most every disk has mild problems but none need surgery. I can't imagine the pain and exhaustion you must experience.

Posted by nwauntie
24 May 2015, 06:35 AM

2muchpain... I too have a syrinx T2-T10, no Chiari malfomration. I am wondering what kind of treatment they had for you? I was also recently diagnosed with Rheumatoid Arthritis, also have 15 bulging discs with 6 herniated and touching the spinal cord (from Cervical to Thoracic). I have been pushed around from doctor to doctor, now waiting for a call to the University hospital an hour drive north. Initially the surgeon from my local area was going to do surgery for the herniated thoracic discs but decided against it when imaging showed two more herniations of cervical spine. She did NOT feel that the syrinx was my problem. Can't find much online that has information I need until I see the University physician I guess. I was diagnosed with syrinx first week February 2015...still in pain, still limited energy, numbness/tingling in all extremities. Curious to hear how ypou are doing and what treatment you got, did it work? thanks

Posted by nwauntie
26 Feb 2015, 12:27 AM

Cendriah, I have had low grade temperatures for almost 7 months, 99.8-100.8 is average temp. A recent MRI showed a syrinx T 1-2 to T 10-11 and I am in the beginning stages of treatment. I have not had a cervical MRI yet or a brain MRI. My neurosurgeon appointment is in 5 weeks, wants me to do physical therapy while I wait. My syrinx has caused (or something has caused) 13 bulging discs in my thoracic spine and 6 of the bulges are impinging on nerves. I started noticing symptoms about 3-4 yrs ago and have seen many specialist. Ericatom1, this fall 2014 was diagnosed with Rheumatoid Arthritis, so when that diagnosis was given all the specialist kind of ran and were done. I struggle with fatigue, pain, nausea and muscular dysfunction every day. I hate the narcotics and only use them at night, or after attempt to do chores (like mowing the grass). So, I rely on multiple doses of ibuprofen, so I can at least attempt to go to work. Any hints of getting through day to day would be most helpful! Thanks

View Full Thread (14 more posts)
Vibrations Down Spine Created by Cendriah
Last updated 15 Jan 2016, 01:42 AM

Posted by Cendriah
15 Jan 2016, 01:42 AM

Has anyone else experienced the feeling of vibrations down their spinal cord? It is driving me crazy! It is like the top of my head is touching a wall with a very large motor behind it and the vibrations from the motor travel from the top of my head all the way down my spine. Sometimes the vibrations extend down to the tip of my nose, the tip of my fingers and the tip of my toes. I am also having a pulsating roaring in my right ear that has not stopped for a month.

Newly diagnosed also Created by nwauntie
Last updated 26 Feb 2015, 11:09 AM

Posted by nwauntie
25 Feb 2015, 11:13 AM

Sorry, I started on another persons newly diagnosed post: Hi All, I am also new here. I am 50 years old. Just trying to figure out my next step. To make a long story short I have had about 3-4 years of general muscle weakness, fatigue and bone pain. I am usually active, hiking, skiing (snow and water), camping, ect. I ruptured my L5-S1 disc around 1998 and had complete relief/recovery after a laminectomy. This time around I have seen many doctors to include neurology, infections control (because I have unexplained low grade fevers), a rheumatologist (who is now treating me for rheumatoid arthritis since this fall 2014). I am in pain all day, every day. I get limited narcotics (X60 tablets Vicodin every month) so I use them sparingly, usually at night or after yard work or easy house chores. I cannot function on narcotics during the day at work. I use large doses of ibuprofen and aspirins 4 times a day with muscle relaxers but my pain is never below 6-7/10. During this time I have been told I may have possible Parkinsons disease (because of the extremity weakness and tremors), osteoarthritis (because of my bone pain), myositis (because of muscle disfunction), told I may have fibromyalgia and now Rheumatoid arthritis. I am a nurse and are familiar with these conditions and I know I do NOT Have fibromyalgia….“my muscles don’t hurt, my bones and spine hurt” is what I keep telling my doctors, which in fibromyalgia your muscles hurt. I was not familiar and have never heard about this spinal condition. A few months ago my doctor even referred me to a Pain Clinic for cognitive behavior therapy and doubled my antidepressant dose! The symptoms have been coming for about 3-4 yrs now but this last summer I got a bug bite after a Mexico trip that turned into a bad abcess and infection, this increased all my symptoms about 50 times more than they had been! My doc sent me to ER twice this last month for severe pain around my mid section, like a burning vice. The ED ruled out urinary infection, heart attack, kidney stones, ovary tumors and appendicitis. My PCP requested an MRI twice over this time period, last October being the last request but my insurance has denied both requests. I appealed but the MRI was still denied. The second ER visit the doctor did an MRI on lumbar and thoracic spine which showed a syrinx T2- T11, 2cm wide. ALSO I have 13 bulging discs (yes 13!) with 6 of them impinging on nerves, in thoracic area. They put me on steroids, sent me home with narcotic pain meds + anti nausea meds and told me to get into a neurosurgeon in 7 days. It is now 14 days after Dx and my appt with the surgeon is not for 5 weeks away! When asked if I could get in sooner I was told no, that the surgeon wants me to do a month of Physical therapy first, then see her. There has been no mention of additional films, I expected an MRI of my cervical spine and brain, to see the extent of the syrinx and see why my cerebral spinal fluid is leaking, also to rule out tumors, Chiari. Sorry, I am rambling. Anyway, I am wondering if this was what you all had to go thru, the long wait time to even be seen? Everywhere I read it states that it is urgent to find why I am having a CSF leak and prevention of further bulging discs, rupture disc or permanent nerve damage. I already have numbness/tingling in all four extremeties, my back feels like 2X4 lumber pieces in my spine, I have problems closing my sphincter after a bowel movement (it takes a while to close). My function is about 25% per my usua lasy yearl, I am clumsy, trip often, drop things, bump into doors and I have nausea daily, etc. My PCP has told me not to do ANYTHING with any straining, not even walk my dogs, until I see the neurosurgeon. I can’t even work with this pain and fatique. Thank goodness my job is allowing me to be gone so much. SO….should I look for another neurosurgeon that can see me sooner or am I jumping the gun and should be fine to wait 5 more weeks to be seen and another (who knows) how many weeks to get authorized imaging and possible surgery? I feel like I am going to be down and sick all of this spring or longer….I love spring!!! I thought I would have already had surgery by now! My biggest worry is permanent nerve damage. Any insight will be greatly appreciated. Thanks.

Community Resources
Title Description Date Link
Chiari and Syringomyelia Online Community

Here you can meet others with Syringomyelia (SM) or Chiari Malformation (CM), share experiences and collaborate research. Here you can find help...and hope. Here, you can find people who truly understand what you are going through and care how you feel. Here you can find plenty of friends to help walk this path with you. You are not alone. There is power in numbers…let us be heard!

03/20/2017
Syringomyelia Foundation

AWARENESS BRACELETS AVAILABLE!

 

 

The goals of the Christopher S. Burton Syringomyelia Foundation are to:

 

 

-raise and distribute funds to those who are diagnosed and can demonstrate a financial and medical need;

 

 

-assist with short or long term financial assistance while social services are pending or insufficient;

 

 

-educate the medical community, and;

 

 

-raise awareness in the general public in hopes of finding a cure someday soon.

 

03/20/2017

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

Ericatom1

30 yr old female with thoracic syringomyelia, thoracic scoliosis, rheumatoid arthritis, kidney disease

 

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Syrinx found on thoracic from MRI done Feb 11, 2020. Started feeling stiffness in legs in January in morning. July first I went to ER with extreme back pain but sent home. Just...

Hello,

My name is lisa and I am a mother of 2. My youngest Samantha who is 7 was diagnosed with scoliosis at 3, and when we went for the MRI we found out she had other rare stuff going on with her...

I have Graves Disease over size heart valve cyst on kidney 4 cyst in each breast tremors depression and anixtey asthma COPD arthritis in lumbar spine pinch nerve in left hand white matter disease...

Living w/ syringomyelia since 2014.

In 2012 I was diagnosed with SMAS. I had duodenojejunostomy at Johns Hopkins Dec 2012. I continue to struggle with digestive issues, and have also been diagnosed with Nutcracker Syndrome, Pelvic...

123Genetix is an innovative not-for-profit organization created to advance rare disease research with our predictive computer modeling technology. We believe that rare should not mean forgotten. To...

I am the mother of an 8 year old Son named Svenn who was Diagnosed July 10, 2017 with a Syringomylia (SM) / Syrinx in his spinal cord between his shoulders area. I created this account in hopes I...

My son has Chiari and SM. Trying to learn as much as possible to assist him.
I am
I just found out I have syringomelia I have 3 small children I'm scared
51 yrs old. I have had chronic pain since I was 26. I have Syringomyelia due to fracturing my back when I fell,, DDD, several herniated and bulging discs, Fibromyalgia, fused at L5S1, TMJ, Cervical...
51 year old with Fibromyalgia, DDD, Schmrol's nodes, several herniated and bulging discs ,tirgeminal neuralgia, TMJ, and Syringomyelia fused at L5-S1. Been going through this since the age of 26,...
I am a 50 yr old female suffering with widespread pain in bones, extreme fatigue, low grade temps, whole body muscle dysfunction (specifically torso has lost strength as well as all four...
Looking to find out as much as I can. I've a son, 2 1/2 Years old. Recently been diagnosed with Syringomyelia and Conus lying at L2 sustained by suspected Tethered Cord Syndrome.

 

 

...

 

I am uppilikrishnan.

 

 

I have finished msc software engineer.

 

 

At age of 18 i was suffered syringomyelia .

 

 

I was operated in 2000.

 

 

I've seen some things, man. And some stuff.
Dx 2013 with congenital tethered spinal cord, and slit-like syrinx above the conus had untethering surgery JUNE 2014
My name is Gabrielle. I am eighteen years old and developed a syrinx at the age of 12. It took two years to figure out a diagnosis. I've had everything from muscle temporary paralysis to extreme...
Program Manager, Scientific Programs, RareShare
since my sm diagnosis I have been trying to come to terms with the constant pain. still tying to find the right pain med for me.
I have SM and would like to participate in research.
I am a mother of two teenagers and a previous Registered Nurse. I am no longer able to work and I had moved away from my regular doctors who were familiar with my diagnosis in 2010 of...
dx in dec 2013 syrinx c6-7

 

Anterior cervical discectomy and fusion c5-7 12/19/13
Happily married mother of two, emergency nurse recently diagnosed with a syrinx after a two year struggle with pain.
I have a syrinx on T5/6 probably due to surgery to remove a meningeoma from this area 10 years ago. I am 58 and symptoms are increasing. I have concerns about surgery to correct and its after...
Diagnosed with ACM1 and SM in January 2012 after many, many years of symptoms and misdiagnoses. Decompressed in 5/2012 but still have significant SM c1-t12. Many more symptoms since decompression.
A soon to be 57 year old male who drove truck for 30+ years , then taught others to for 7 years before it became to painfull to I was placed on disability in 2012 ) T8-9 level ..at present I...
Kinglyvelvet provide health benefits ranging from aiding arthritis to easing psoriasis and almost everything in-between, deer velvet could be right for you.
Single mom of two boys. Full time nursing student and work part time as a CNA.
I have congenital SM and would like to learn and communicate with other people who also have SM.
Will fill in later.
I am 39 year old married mother of one. I found out I have a syrinx accidentally after I received an MRI when I hurt my back at work. No one I've spoken with really knows much about this disorder....
Diagnosed syringohydromyelea 2008. Syrinx from C1 to T12
Newly diagnosed
Syrinx C3-T10 long and skinny diagnosed 2002

 

De-tethered spinal cord 2007

 

Bells Palsy 2007

 

Neuro spinal stimulator installed 2010
diagnosed in October 2012...constant neck and back pain, forearm pain. Tired all the time! Now getting throbbing pain in legs...feeling scared.
Diagnosed with syringomyelia in 2005. I firmly believe it was stress-related. Syrinx extends C6 to T1. Various symptoms have appeared over time, lately complicated by severe arthritis in hip, which...
My name is Cindy. I have a great family and was lucky enough to start my own business before the accident. My business is not as successful as I would have hoped for but it has blessed my family in...
Newly diagnosed at age 59 from MRI for scoliosis developing fast and lots of pain. Pulmonary issues maybe from this also. Need to find a doctor who can treat.
I am 43 year old female born with a Chiari Malformation. Malformation was found in March 2002 along with the syringomyelia cyst. Had decompression in April 2002. Had to have an anterior cervical...
I just found out from my Orthopedic Dr. that I have syrinx, after being released from the hospital from having severe headaches with vomiting, Had an MRI done and all they said was it was fine and...
I have idiopathic thoracic syringomyelia.
Hi I am 31 and until recently lived a healthy, normal, successful life. Currently digesting a lot of information and pushing for the health care and dedication from health care professionals I...
happily married with a wonderful wife that survived cancer,but is bound to a wheelchair the rest of her life. Was told i had sm over 12 yrs ago but beleive i had it a lot longer.Been going through...
45 year old male diagnosed with Syringomyelia 17 months ago.....

30 yr old female with thoracic syringomyelia, thoracic scoliosis, rheumatoid arthritis, kidney disease

I need to know of neurologists in Portland ,OR not at ohsu that specializes in am.

 

Even though I had a previous diagnosis of gait instability evidence of progression in MRIs over an 8 year...
I have syringomyelia. The syrinx extends from T5-T11. I also have tethered cord syndrome. I've been everywhere it seems and no one will touch me.

 

 

I'm in chronic pain but try so hard to...
Just found this page & trying to find out as much info as possible since my MRI showed I had Syringomyelia, which was a new diagnosis added to Spondylolisthesis (grd II), DDD, & Panic Attacks w/...
Dx'd in 2004. Originally worked up (extensively) for MS. but not MS. Syringiomyelia??? After many many many rounds of PT (not lasting) and pills (put me to sleep). Just dealing with it. sigh!

...

I have Syringomyelia.  My syrinx is small, extending from T8 to T12 measuring up to 3 mm in cross-section at the T9 level. I was diagnosed with Adult Onset Still's Disease in...

Hello my name is michael i'm 42 and i have been in pain and sick for years. And no one believed me,doctors,family

 

friends. Well i'm getting the last laugh on them because it's taken so long...
I had severe scoliosis when I was ten...74 degrees curvature. I had a spinal fusion when I was twelve. From that point on I had always had pain in my neck and back. I could always handle extremely...
I was diagnosed with a syrinx in August. I have been searching for an answer for at least 15 years. first was numb feet, but I am not diabetic so drs just said it was arthritis. then headaches,...
Just diagnosed with cervical syrinx and a bening hemangioma. A little freaked right now. Surgeon isn't saying much until the brain MRI and the web is enough to make you want to hide.
Dx with Syringomyalia
I am a mom, wife and student pursuing my doctorate as a nurse practitioner in child and family psychiatry. I have been diagnosed with syringomyelia and have a cervical syrinx (yes, my profile...
I am 41 years old married with three children and one granddaughter. For about two years now I have been sent to specialist after specialist muliple MRI's, lumbar puncture lots of different...
I am a Mama to two beautiful, witty, charming, bright and compassionate daughters (ages 9 and 4). I am currently unemployed and actually have applied for disability due to the numerous ill-effects...
I have two awesome daughters, a kittycat, AND a super-fun (NOT!!) syrinx in my cervical spine.
DX with a Neurenteric Cyst a variant of the split notochord syndrome at T1, Fused Vertebra C7 T2 & a 7mm Syrinx C7 T2

 

 

 

Neurenteric cysts are extremely rare congenital...
I had a cervical spinal cord tumor removed in Oct of 01". A very large Syrinx was the result after the tumor was removed. I have had varied symptoms since the removal of the tumor but the symptoms...

I was diagnosed with Chiari Type 1 Malformation and Syringomyelia in 2008 and have been having a difficult time with doctors and specialists since then, not to mention coping with the symptoms.

Been diagnosed in September 2007 am in sever pain everyday and have not found significant relief. have been told I am not a surgical candidate.
My syringomyelia seems to be symptom-free but I worry about what could happen. I have two 6" pockets. Can having a pocket in the thoracic area give you headaches? I've begun having headaches in the...
This disorder remains unknown to most people in the United States, unfortunately, even in the medical community as Founding President, Christopher S. Burton, learned on a very personal level. After...
My name is Jen.

 

I was diagnosed with Arnold Chiari Malformation 1 in 2004 and underwent posterior fossa decompression surgery 2/05. I also have tethered cord syndrome, pseudo tumor cerebri,...

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Discussion Forum

Head Pressure? Spinal pain/tremor?

Created by TspineSryinx | Last updated 26 Oct 2014, 09:34 PM

New Member Introduction

Created by cherisegarner | Last updated 10 Oct 2014, 05:13 AM

SM and Disability benefits from Social Security in USA

Created by kaushika | Last updated 5 Sep 2014, 05:18 PM

Ssdi

Created by Ericatom1 | Last updated 5 Sep 2014, 04:15 AM

Newly diagnosed... And scared!

Created by Murr | Last updated 25 Feb 2014, 10:52 PM

tingling numbness raynaud's...etc..

Created by EnlightenMe | Last updated 28 Jan 2014, 03:52 AM

Syringomyelia awareness!

Created by Ericatom1 | Last updated 21 Jan 2014, 07:48 AM

Slightly newly diagnosed

Created by jarrettf07 | Last updated 28 Aug 2013, 04:33 PM

Sm emergency?

Created by Ericatom1 | Last updated 25 Aug 2013, 05:34 AM

Can't find a dr. for this disease!

Created by Ericatom1 | Last updated 16 Aug 2013, 05:56 AM


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