Please pardon my novice attempts to post...I am new to this technology.
My name is Meggie and I was diagnosed with idiopathic syringomyelia less than a year ago. I have since undergone a syringo-subarachnoid shunt insertion operation and have developed neuropathic pain, myofascial pain syndrome, a neurological deficit among a long list of others as I am sure many of us have (and yes the MRI picture is mine). I am currently awaiting a potential Chiari 0 diagnosis as I have tested negative for tethered spinal cord, arachnoiditis, meningitis, Chiari 1, trauma and have no signs of spinal cord tumor as of yet.
I wish to connect with others for support and to learn as much as possible about my disorders and subsequent symptoms. I have a basic medical background however never learned of syringomyelia until my diagnosis, so now I saturate myself in publications, available statistics and new hypothesis searching for personal understanding and a causative agent. I believe knowledge is power and that the psychological tole of living with chronic disorders is just as significant to that of the physical one.
If there is any information I might provide I am happy to do so...I warn I am a bit of a wind bag though. And if anyone might relate and like to share with me I would be most appreciative.

Thank you,
Meggie

Welcome Meggie

Some of the other forums have posts mentioning myofascial pain, so feel free to explore around the whole site.

Hi Meggie! First, I am sorry you are going through everything that you are. I can relate to you in many ways. I was diagnosed with syringomyelia in Dec. of 2010 when they found a syrinx in my spinal cord at C-5,6,&7. I won't go into the long history of symptoms leading to the MRI that finally found the problem, but I was so relieved to finally get a diagnosis besides "migraines". I always knew something was wrong with me and I was so tired of living in constant pain. Once I found out what was wrong though, I can't say it was such a relief anymore.

My syringo is also idiopathic as far as anyone can tell. I do not have Chiari 1, no trauma, and no tumor (although they did find a small benign tumor at the base of my brain, it is unrelated). After many dr's have consulted on my condition (all baffled), they first tried laminoplasty in the cervical area around the syrinx. They pulled those bones apart & bolted them back together, trying to leave more room for the CSF to flow. They also performed duraplasty at that time to replace part of the dura in that area with an elastic patch to give more stretch. When my NS performed the operation, he found a ton of scar tissue in there that he believes was left from a severe case of undiagnosed spinal meningitis as a young child. If this is true, it could very well be the cause for my problems now, but no one knows.

Anyway, these operations did not work at all. The syrinx was still there and my cranial pressure (which was causing my tremendous, unbearable headaches) was still up. Whatever problem I have that is blocking my natural flow of CSF and causing this to reroute to the spinal cord is also causing it to build up on my brain. Because of this, my next operation was to have a VP shunt placed from the brain to the abdomen.

The VP Shunt is just to help my severe headaches and to decrease the pressure in my head. It really isn't expected to do anything for my syrinx, of course. My NS and the others that have consulted on my case have all said they want to stay away from any shunt directly into the syrinx because going into the spinal cord is so extremely dangerous. From all of the reading and research I have done, I definitely agreed with them. I felt that I would rather wait out the slow progression of the syrinx itself, than take any chances on damaging the spinal cord during an operation.

Well, that is my story (most of it, anyway). Now I am curious about your condition. Why did your NS decide to go with the syringo arachnoid shunt? Where is your syrinx located? I know how horrible it is to live with this constant pain all of the time and for me, no one can really understand. First of all, no one understands the crazy disease in the first place, and then most of the time saying you have headaches & muscle pain sounds like you are just a complainer. People just don't realize how much deeper it is than that. There are times that my neck & shoulders are so stiff and in pain that I can't even move. My head will hurt so bad along with that to where tears flow without me even realizing I am crying. Then I get shooting nerve pains down my back, arms, and hands that feel like I am being stabbed repeatedly. At times my right hand will just cramp up and stop working completely. I also feel so tired and lethargic all of the time...every single day of my life. I might get bursts of energy, but they are very short lived.

Gosh, I am so sorry because I feel like that just turned into a venting session. It's been a loooong time since I have "talked" to anyone or complained because I know people around me don't want to hear it. I am a single mom of 2 amazing angels (5 & 8 years old) and even with all of this going on, I have to soldier up everyday and move on...gotta take care of them and go to work!

Please let me know how you are and more about your condition. I go back to my NS on Tuesday to check on my shunt because I have been having some soreness and worse headaches so I think I might need an adjustment. I am here to help you in any way I can and will answer an question you might have. There are so few of us and so few people to talk to.

Best of luck to you and I'm not sure if you are spiritual, but I am so I will pray for you in my way if that is ok.

Holly

Hi Holly,

Thank you for your willingness to share and reach out.
My diagnosis came after a brain MRI for suspected MS lesion(s) as I was experiencing paresthesia in all four extremities and had a slight tremor in my left hand. The syrinx was just visible in the lowest portion of the imaging at the C3, C4 level (my profile picture shows my pre-operative syrinx measuring 10 X 12mm in AP and transverse dimensions by 29-30mm in superior-inferior dimension...yup massive). I agreed to go ahead with the shunting operation after my neurosurgeon disclosed I was losing control over the large muscle groups in my legs causing my gate issue that would only progress without pressure diversion from the spinal cord. I do have much damage from the surgery but in my particular case am glad I chose to do so given the alternatives.
I am a mystery also...I just returned from my neurosurgeon's and there is absolutely no tonsillar descent making a Chiari 0 impossible. We are leaning towards traveling to The Chiari Institute in Great Neck New York for further testing as they specialize in all Chiari related conditions, including idiopathic syringomyelia.
I can also relate with the migraines, mine have thankfully all but dissipated since the shunt insertion. I wonder, some literature has claimed brain tumors causing hydrocephalus (pubmed), is your benign tumor still present? I know how much a reason would mean for me, for if a reason is not found and resolved I cannot help but think of subsequent syrinx formations and then immediately feel pessimistic about my attitude towards my long-term outcome. It causes a constant psychological tug of war within oneself.
The appropriate expression is one of the most challenging aspects for me as I am the classic "strong one" caring for all others but not myself. Learning to express what you truly feel to effectively match your emotions to your mannerisms is a constant struggle for me. The pain is consuming...like an infection you can never overcome. I have days when I am not able to get out of bed, and then a good day almost brings me to tears from the anticipation of the potential severity of symptoms in the days yet to come.
If I may share from my personal symptom experience; the pain in your shoulders and neck might be partially alleviated by some osteopathic manipulative therapy (OMT) by a licensed D.O. depending on the causative agent. My pain that sounds very similar is caused from myofascial pain syndrome (mayoclinic has a great link but I am unable to reference them yet), a progressive pain condition that seems to respond well to OMT. I went from being able to sit up a maximum of 20 minutes after surgery to many hours while undergoing OMT treatments from my pain management specialist (about every other week for a few months, now every four weeks). Also the shooting pain you described, I have similar pain in my hands and feet only thankfully (neuropathic pain). Mine is tremendously helped in my hands by common carpal tunnel braces worn at night. The neuropathic pain (brainandspine online) is a complex beast to say the least, however I have had much relief from the anticonvulsant medication Lyrica (50mg. 3 X daily). The drug slows the nerve signal and intern the pain message dulling the sensation. I was unable to move without extreme pain before being diagnosed, treated and underwent many medications to get to Lyrica. The pain medications were the most effective but my liver would not tolerate them or the Neurontin (another anticonvulsant).
My energy level is also at bare minimum most times, some days physical therapy and a shower seem like the final ascent of Mount Everest. Few understand the extent of the suffering endured with this, yet who would want them to? I also have two children, my eldest would have been thirteen (she passed from transplant rejection) and my youngest is seven. She gives me a reason to still get up each morning, and comes and cuddles with me the days I just can't. Children are the purest joy in my opinion.
Please...I appreciate your "venting" as I feel less alone. And I did warn in my introduction I am a tad long winded so we should get along swimmingly.
I hope for you the best at your appointment and am here if I can help you also. It is a relief to have another that understands..although many say they do. I am an atheist myself but appreciate the sentiment of others prayer so thank you, and I will hope for you the best of the data set.
I look forward to hearing from you.

Meggie