I may never have imagined it, but it happened. Just like it has happened to approximately 21,000 other people in the U.S. (American Syringomyelia & Chiari Alliance Project) I have syringomyelia.
What is syringomyelia?
Syringomyelia (sear-IN-go-my-EEL-ya) or SM, is a disorder from a cyst that has formed in a spinal cord. This cyst, or syrinx, generally grows wider and longer over time. As that happens, part of the spinal cord is damaged and/or destroyed. When the syrinx widens, it presses on nerves that lead from the spine to the arms and legs. It can also push against the spine and discs of the spine, causing them to herniate.
What problems does SM cause?
The injury to the spinal cord caused by the syrinx often leads to increasing weakness in the arms and legs, very sore, stiff muscles in the shoulders, back, arms and legs. There is also chronic, severe pain for many, but not all, people who suffer from SM. There can also be bladder issues (a loss of control, infections).
The signs and symptoms are different from each person with SM. For some, the pain is debilitating. For others, it is a problem but does not completely interrupt their lives, and for some, there are no symptoms at all. There is no real rhyme or reason for a syrinx that has been dormant to begin causing problems. It could be something as simple as a sneeze or a cough or even straining.
What caused my syrinx.
I have had a syrinx for about 14 years. While running one day I started to fall forward and knew I had to protect my head, so I put out my arm and locked my elbow against the fall. I did protect my head from the floor. Unfortunately, my arm took the full force of my fall. Had I broken my arm, the outcome would probably have been much different. However, my arm did not break. I damaged/tore all the ligaments and tendons and my ulnar nerve was displaced. The ulnar nerve is your “funny bone” so that was really not a pleasant experience. (Insert funny/ironic joke here.)
What I have had done in the past.
Over the next 10 years, I had 2 surgeries to reposition that nerve. After the first, scar tissue formed and attached the nerve to the bone. The second corrected that. The ring and pinky finger on that hand remained asleep (for ten years) and there was a good bit of pain involved.
Eight years later, I had an MRI that revealed the syrinx. The neurologist who ordered the MRI began treating me for the SM at that time. I continued to have an MRI once a year and 2 years later there were big changes in my MRI and he sent me immediately to a neurosurgeon.
Cervical Fusion Post Op. They do go through the front of your neck to get to the damaged cervical area.
Two days after seeing her for the first time I had my first neck fusion or Anterior cervical discectomy and fusion (ACDF). One of the discs in my neck had herniated and pushed the vertebrae into my spinal cord. I was about 1/8 of an inch from paralysis. I thank God that I have an absolutely amazing neurosurgeon. She was able to complete the surgery with no issues.
My second fusion surgery was 364 days later. Same incredible neurosurgeon. No issues. I am fused from C3-C5. This means that I have a titanium brace on my vertebrae that looks like the one pictured below, except mine covers 3 discs where this one is just one.
What I presently do for my SM.
I have 2 MRIs per year. I see my neurosurgeon every 6 months. One conclusion from my last appointment was that I am “in pretty good shape for the terrible shape I’m in.” The syrinx at the top of my spine (cervical) has also caused problems for the bottom of my spine (lumbar). As of now, I have one cervical and three lumbar discs that are protruding and one lumbar disc with a tear. Chances are extremely high that these will herniate and they will have to be fused as well. But at this point, it is just a wait and watch scenario.
I am also a patient of Shepherd Spine and Pain Institute. My doctor and the entire staff are amazing. When your doctor walks in and immediately notices your hair is cut differently, you know for certain he is paying attention to you. He handles all of my pain management medications, procedures, and treatments.
For example, every six months, I have Radiofrequency Ablation on my neck (cervical) and lower back (lumbar). In this procedure, my doctor cauterizes some of the nerves to keep them from causing so much pain. This is a seriously painful process, but it is worth it. An hour of severe pain. Five months of help. Here are two videos that explain the procedure. This one is an animated version. This one is a video of an actual procedure. If you have a weak stomach, choose the animated one.
Needles for Dry Needling
I also have dry needling as needed with an order written by my doctor. This is a process where very thin needles are inserted into muscle tissue that is “knotted.” (I am sure my physical therapist is cringing right now that I called it that, but that is what it feels like – muscles full of knots!) The needle being moved around makes the muscle tense and then release. The effect is immediate. I have gone to an appointment unable to move my neck more than a couple of inches in any direction and after the 15-25 minute procedure been able to touch my chin to my neck and look straight up at the ceiling. Who knew looking at the ceiling would ever be so exciting?
I am on
quite a bit a ton of medication. I have 5 different muscle relaxers that I can take. Two of these I only take before bed, one which specifically targets my myoclonic jerks or myoclonus that get worse at night. One I take 3 times a day and the other 2 I can take up to 3 times a day as needed.
What about addiction?
As I wrote in another post, Nope. People who suffer from chronic pain don’t generally become addicted. Our bodies use the medications for purposes other than the euphoria that addicts hope for. Trust me, there’s no euphoria here! ( If you don’t really believe me, check out this link for emedicine health.
What my future holds.
Well, it holds more of what I have already been through. As of my last MRI (I now have one every 6 months) I have 1 cervical and 3 lumbar discs that are in the process of herniating. I have a lumbar disc with a tear. It is a waiting game. Waiting to see if they hold their own of if they will decide to give up. In that case, there will be another fusion. If that happens, I’ll face it head on. That is the only way. If it doesn’t, or until it does, I will continue as I am now. Smiling when I don’t really feel like it and moving on with my life.
I don’t say this for pity. Truly I don’t. I do not want to hear “Oh, I’m so sorry.” It isn’t your fault. I don’t want to hear “You’ll get better.” I won’t, but I don’t dwell on that and I don’t want those around me to do that, either. The best thing to do is just acknowledge that I have good days and bad days. On good days, treat me the way you would anyone else. On bad days, treat me the way you would anyone else.
Just know that there are times that I want to do things and my body just says “No.” It’s nothing against you. My body just loves playing tricks on me.
What resources are available.
The very best thing you can do if you are diagnosed with SM is to find a really good set of doctors. You need a neurologist who can refer you to a neurosurgeon if needed. You need a pain management physician.
You also need a really good support system. You can find support groups on Facebook, on blogs, Twitter and even Instagram. There are some face-to-face groups as well, but most of them meet at night and, quite honestly, by the time I get home I don’t have the energy to go somewhere to a meeting. So I settle for online interaction. However, I really think there is a great benefit to meeting people who share your issues.
American Syringomyelia & Chiari Alliance Project
Chiari and Syringomyelia Foundation Handbook for Patients and Families
Syringomyelia Fact Sheet
Carion Fenn Network
Mayo Clinic SM page
National Organization for Rare Diseases (NORD)
Christopher & Dana Reeve Foundation
Worldwide Syringomyelia and Chiari Task Force
Christopher S Burton Syringomyelia Foundation
ASAP list of support groups
ASAP’s main Facebook page (open to the public)
ASAP’s closed Facebook page (only those diagnosed with SM)
Ann Conroy Trust (Great Britain)
What I Didn’t Know About Chronic Illness. Now I Know Better.
Living with Syringomyelia
Brain Facts SM
Getting Social Security Disability for Syringomyelia
Anyone out there with SM? Want to talk about it? If you have anything to add, ask, or comment, please let me know. I’d love to hear from you. I do like to connect, but can we connect on here and not meet? I’m tired! 🙂