It has begun.
This is something I have been grappling with for months and months. Taking medication every day gives me an unsettled feeling. There are many reasons why I do not wish to become a daily pill-popper. The main reason is that I do not want to put chemicals into my body that have the potential to make my physical well-being become dependent on them. Make sense?
Baclofen. Baclofen is a muscle relaxer and anti-spasm medication. Everything I have read and learned from my pharmacist is that Baclofen has terrible withdrawal symptoms similar to Benzo withdrawal or alcohol withdrawal (neither of which I have ever experienced, but have witnessed in other people.) Additionally, I have been avoiding medication like this because I read that muscle relaxers make you feel a little hinkey in the head. My family owns multiple rehab centers so I am familiar with medication addiction. Maybe that’s why I am leary of taking anything.
So far, (so far being 36+ hours) the Baclofen has been amazing. I am tooting that horn even though I am not on board with the pill-popping train. It actually works. It has only been a couple of days and already I feel looser, barely any tension, and very few spasms in my legs and none in my shoulder blade. The Baclofen is supposed to be taken with my Gabapentin for maximum effectiveness. I tried that last night and this morning and I feel great. My head does not feel funny at all. I’m happy to report that this doesn’t seem to be a typical muscle-relaxer in that regard. My dosage is quite low at 20 mg per day. It seems that 80 mg is a high dose and somewhat typical for MS, Syringomyelia, and other spinal cord issues. I’m happy to stick with the 20 mg per day. It is working.
The best patient is a well-informed patient. You are your own advocate. Ask questions. Write them down before your doctor visits. Show up prepared so you will receive the best advice and the most information that will benefit you that your doctor can provide.
Doctors give varying degrees of advice when it comes to Syringomyelia. Possibly because it is not yet well-researched. Read all that you can about the disease. Talk to doctors, talk with your peers with the disease through websites and forums, and learn what you can, not only from doctors, but on your own.
Checkout some of these sites for Syringomyelia and Chiari Malformation and read through them to see what new research has been done. Find a doctor who specializes in these two diseases of the spinal cord.
American Syringomyelia and Chiari Alliance Project: http://www.asap.org/
Chiari & Syringomyelia Foundation: http://www.csfinfo.org/
The Chiari Care Center: http://chiaricare.com/Related-Disorders/Syringomyelia.aspx
When I was told I have Syringomyelia from my cervical spine to bottom of thoracic spine, my first neurologist told me that all physical activity should be stopped. Completely. He was referring to: running, weight-lifting, hiking, kayaking, aerobic exercise (except swimming – swimming is okay), carrying anything over 5 pounds, or carrying anything on my back or shoulders such as a backpack or a heavy purse. No pilates, no dancing, no rough-housing. He had a laundry list of stuff that I should no longer do. It was recommended that I not reach above my head. Don’t tilt my neck back. Don’t roll my neck. Be gentle with my body.
Neurologist number two said to keep swimming, use the StairMaster (no running on treadmill), lift weights 5, 8, and 10 pounds, keep hiking, keep kayaking, but maybe nix the idea of whitewater rafting and sky-diving. So I won’t sky-dive. I will however go whitewater rafting. She said it will get worse regardless of activity. She did not endorse insane activity like sky-diving or running, but did say that continuing to be active would alleviate some of the top symptoms of the ailment. Being sedentary can oftentimes make people feel worse due to loss of muscle mass, weight gain, and not keeping bones healthy. She also reinforced the following: do not reach above my head. Do not tilt my neck back. Do not roll my neck. DO be gentle with my body.
For my own case of Syringomyelia, I agree with doctor number two. I do heed warnings from both doctors to stop running. Stop doing anything jarring. No rolling of the neck. However, I will say activities such as bowling, badminton, volleyball, and stuff like that I still enjoy. I am not jumping around and jarring my body. I see where people could get a bit more active and aggressive though.
Listen to your doctors. Get second and third opinions. A lot of people I have spoken to have a small Syrinx. Maybe from T2 to T3 or T6 to T8. Mine is from Cervical all the way down to T12. I have severe Coccyx pain (coccydynia). So I actually do try to be careful with the activities in which I choose to participate. Some people I have spoken to with a small Syrinx have severe disabilities with mobility issues. Other people go their entire lives without any symptoms at all. I have yet to encounter anyone with a Syrinx as long as mine who is completely debilitated. Some people I have talked with who have a long Syrinx go through flare-ups and waves of pain and immobility, but seem to bounce back from the flare-up quickly. I have noticed the people with the longer Syrinxes are the most active. Maybe because of the thought of paralysis…? Maybe the more active people did something during some activity that cause the Syrinx to begin with..? I have no idea.
Talk to your doctors. Get informed.
Whew. I have missed two seasons. For the last four months, I was working on putting together a health and fitness expo. I have had only one flare-up that lasted about eight weeks. Other than the normal deep spinal cord pain and muscle weakness, I have felt fantastic.
My spinal cord hurts deep inside with a sunburn feeling from the base of my skull to my lumbar spine. That is from the syrinx. It has been a constant pain for months. Possibly because I haven’t been swimming. Or using my Stairmaster regularly. BOOOO me! It was a birthday gift and aside from swimming and lifting (light) weights, the Stairmaster is my favorite exercise. Lifting weights is supposedly a no-no with the Syringomyelia. However, it is good for M.S. and other diseases in that family. Besides, it burns fat and keeps the skeleton and muscles in excellent shape. And after a few months of working and not taking care of myself… I need to get rid of some fat. Oh-my!
Between working my show and having some days of rest here and there, I did find time to enjoy this Southern California fall and winter weather.
That just about wraps up the busy year. I hope 2013 is a great year for everyone filled with an abundant amount of good health and joy. Get up and keep moving. Stay strong. Move that body or lose that body.
Here is the short version of my M.S. & Syrinx story. I’ll call it Part 1.
I had tingling, leg spasms, weak muscles, vertigo, and severe fatigue off and on for about 12 years or so. Probably other symptoms I can’t think of right now…OH, oh, like Costochondritis, blurry vision, creepy crawly skin, electric shock in my feet and torso, and some other stuff. I’m very active I never really followed-up with the symptoms on a serious level. I figured I had the flu every couple of months for about four to six weeks each bout.
What sent me to the doctor was this weird sunburn like feeling between my shoulder-blades that has just gotten to be completely unbearable over the last three months. I decided to go see my mother’s Alzheimer’s neurologist because he is the head of a department at a swanky hospital here in my city. (And you know, swanky must mean he is good, right? I jest 😉 ) I offer him my symptoms and straight away he said, “M.S. for sure is my thinking, but please have an MRI as a formality.” In the MRI results not only does he find M.S., he finds this Syrinx that extends from T1 down to my Lumbar area. The MS is a pain in the budinsky just by itself. The Syrinx is now completely inconvenient because it is so long and full/thick in most places, that it might actually be causing additional pain, numbness, and vertigo. And in addition to that I am told I can’t kayak, do a lot of strenuous yoga positions, or swim vigorously. What?? Holy mother of… I’ll be a fatty in no time.
A syrinx is a sack of fluid, a cyst rather, that in my case has resulted from either a trauma or meningitis or a tumor, and over the years I have continuously damaged my back to the point where the Syrinx has grown larger and longer inside the spinal cord. It will continue to grow and fill with fluid until there is no more room for it which supposedly may cause the loss of the use of my arms or legs possibly. That could require a risky surgery. Apparently doctors dissuade surgery until the patient is almost at that paralysis point. So I’m just hanging tight with M.S. and the Syrinx for now.
P.S. I am 41 years old. How long could it take to be close to immobile? Can’t they just pull some CSF from around the cord to relive some pressure? I had a lumbar puncture last week and that little amount of fluid drainage made me feel AMAZING for about one week. The sunburn feeling was gone. Now it is back.
I have only been on Gabapentin for three weeks and I have gained weight. Not sure how much weight, but a lot. A little, a lot. A dress I had worn three weeks ago wouldn’t even go past my shoulders yesterday. It must be water weight because it is all in my torso.
The Gabapentin stops spastic movements in the legs and stabbing, burning spinal cord pain caused by lesions. It is also used for people with Epilepsy so it is a multi-use pharmaceutical. Like every drug in America. HA!
The side effects I have felt since taking the Gabapentin are: fuzzy brain/thinking, not feeling very alert when driving, unfocused vision, (not blurry or doubled, but more just unable to focus on the person or thing I’m supposed to look at) lack of concentration, weight gain, and exhaustion.
NOTE: I have only been on 900 mg for 3 weeks and most of those side effects have subsided, except the weight gain. Hopefully that will level out. I sleep like a log at night and it is fantastic. I will not increase my dosage even if the doctor asks me to. At least not yet. I have noticed improvement in my spastic leg and pain quite a bit and about 50% in my spinal column. Due to the long Syrinx in my cord, I really do not want to increase the Gabapentin because who knows if it is helping anything other than the spastic leg. Why take the “normal” 1900 – 2100 mg per day. Who even says that is normal??
Good luck with your medication options.
Who would have thought that you go to the doctor to receive the diagnosis of Multiple Sclerosis only to hear the following:
“We do see that you have MS lesions. However, I see something even more mind-blowing. You have a Syrinx that goes from T2 all the way down to your Lumbar region. And I see two bright white spots here in the T3 and T4 region that I don’t like. They could be tumors. Maybe lesions, but they look like tumors. Your Syrinx is so thick and full right there it was hard to get a good picture. But they are an odd shape, indicative of a tumor, and not what we typically see in a lesion. Now, do you have any questions for me?”
Yes. What in the world is a Syrinx?
Apparently, a syrinx is caused by either a traumatic injury or you are born with it (if you are born with the condition, called a Chiari-Malformation, one usually knows about this at birth or early childhood !!!! and since I am 40-ish, I do think I would have caught on much earlier had this been the case. DUH) So the doctor looks at me and says, “What trauma did you sustain? Yours is very long. In fact, one of the longest I’ve seen which means the trauma happened a looooooong time ago.” Okay. Hmmm. Nothing. I’ve never had a trauma. No back injury aside from the normal tussle when I was a kid with my sister rolling around in our Barbie tent. He said, “Well, it was traumatic whatever the case. And that is neither here nor there because there is nothing you can do now except for BE CAREFUL. No activity that will cause it to get worse. No kayaking. No impact sports such as white water rafting (cancel that summer trip), no backpacking, no lifting weights at the gym. Actually, light weight is okay. Maybe 5 – 8 pounds.” Oh, my gosh. What?? Remember, I have Multiple Sclerosis too and muscle maintenance is very important. So this is a double edge sword, this diagnosis.
The tumors, I believe they are lesions. He is not so sure. But what does it matter if they are inside the spinal cord anyway? There is no option if they are tumors. I’m going with lesions for now.