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?  

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.  

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.