Syringomyelia (Sear-IN-Joe-My-E-Lee-Uh), or "SM", is a chronic disorder of the spinal cord which consists of the formation of a syrinx (a pocket of cerebral-spinal fluid sometimes referred to as a cyst, hydromyelia, or syringohydromyelia) inside the spinal cord cavity. The syrinx may expand and elongate as it encroaches on the spinal cord and can easily cause deterioration of the nerves.
|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.|
|Headaches||Persistent extremely bad headaches.|
|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.|
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!
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.
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
I have a small syringohydromyelia extending from T8 to T12 measuring up to 3 mm in cross-section at the T9 level.
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!
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?
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.
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.
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.
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
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
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.
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.
Christie Wood...just wondering how you were doing? I live in Oregon so we are very close (love the Seahawks jerseys!!). Anyway, may I ask what doctor you saw?... did you have surgery?...How are your symptoms now? I am new to this with SM on my MRI just two weeks ago but symptoms for 3-4 years. thanks
Hi Meggie, Long time no hear! :-) I kept meaning to log in, but so many other things going on. Probably like everyone else here. I've posted a rant in anther topic on here. Syrinx is getting worse. No relief. No doctors that understand. Yada Yada Yada. I hope you are doing OK!
Hi Gabrielle! I am glad to hear you have some results.:) I might have some information that could relate to you...I have bilateral (both sides) osseous (bone tissue) foraminal (the hole in the center of your spine that contains your spinal cord) encroachment (narrowing) at C5-C6. Narrowing of your foramen can cause compression or damage to the nerves in the affected area thus potentially causing symptoms to the areas of your body supplied by these nerves. The area of C5 to C6 and extending to T1 would most likely affect your brachial plexus (a network of nerves) which supplies your shoulders, arms and hands and could cause symptoms such as numbness, tingling, sensation and/or motor dysfunction. Anti-inflammatory medications are often used and in extreme cases there are surgical procedures to open up these areas such as foraminotomy, laminotomy and laminectomy. Mine is not this severe and I do hope yours is not either.:) Nausea is a subject I am unfortunately very familiar with and it can be associated with pain. I had good results from candy ginger and room temperature coke...yes regular coke has an ingredient in the syrup that can reduce nausea.:) There is also a gentle but very effective prescription medication called promethazine (phenergan) which is commonly prescribed but the causative agent would still need to be identified and addressed. I can relate with feeling as if without options.:( This disorder seems to permeates every aspect of life without regard to sanctity. Please know you have support.:) Thank you for your kind words Gabrielle.:) And I hope to be well enough by summer to swing along side her in the sun.:) Please keep us updated! Meggie
Hello Everyone! I just wanted to share about being a patient in a clinical trial at National Institutes of Health for SM. I too, have been on the journey of learning about this disorder. Over the past two years I have cried a lot, been in intolerable pain, and watched my family be extremely concerned and carry that daily. I am a very driven person who refuses to let this get the best of me. I hated the way the medications or pain made me feel and hated how some doctors even told me my pain was really from being depressed. Hmmm..... After that particular doctor I had enough... I started trying to really take care of myself by eating better and reducing my stress levels as best as I could. I read many health books and ended up loosing a lot of weight in the meantime. Exercise has always been frustrating because there are limitations. In August of last year I grew tired of seeing my friends take Zumba classes without me so I decided to do some research. I came across NIH and discovered that there was a clinical trial that suited my symptoms. It was the best decision I ever made to apply. Since then I have seen some of the best doctors in the world and they all speak "SM". They all understand how I feel. They even made me feel validated and above all like a person/patient instead of a number on a chart. In the past 8 months I have been holding steady, we know that there may not be a cure for a long time but what I know is that I have a doctor or a nurse to communicate with as often as I need for my own questions and concerns or to help be the educator for the doctor in my local city. It has helped me tremendously and reduced my anxiety about having SM. Since I am feeling fairly good right now I want to pass this positive news on to you. Take a look at nih.gov for more information and go to clinicaltrials.gov to search for open an study that may suit you. I hope this helps and good luck to you all.
|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!
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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.
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.
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.
30 yr old female with thoracic syringomyelia, thoracic scoliosis, rheumatoid arthritis, kidney disease
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