Michelle W
Joined: 29 Nov 1999
Posts: 364
Location: Moose Jaw, SK
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 My living nightmare
syringomyelia
(1 comment)
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It's been 6 months since I updated my journal.
In this time, I have been living through a nightmare with my health.
In April of this year I noticed that I was losing hot/cold sensation in my left leg and that my leg reflexes were a little wild and crazy. I had been seeing my chiropractor for what I had been told was a pinched sciatic nerve which was causing burning in my thigh and weakness in my hip joint. Treatments would help but the pain would never go all the way away. When I told the chiropractor about my reflexes being very brisk, he tested them and suggested that I go to see my family doctor and discuss being tested for Multiple Sclerosis. The next few days dragged by until I could get in to see my doctor who is also a good friend (without whom this journey would have been much worse) and he said that he also suspected MS and that I needed a CT scan immediately. I had the CT scan within a few weeks (that's immediate in our health care system) and the CT scan of my brain was normal, but it showed that my spine had some serious deterioration in the bones and arthritis. But neither of those two diagnosis would cause the pain and reflex issues I was having. He said that CT scans would show large lesions, but then he then told us that I need an MRI to see what else was going on and said that if it was his wife who was dealing with this, instead of waiting the 8-10 months for an MRI in the province, he would pay the $1500 out of pocket to go to Calgary for the MRI. (Hence why we were in Calgary in my most recent post before this one)
We were in Calgary in less than a week for that MRI and after coming home, my doctor called to tell me that he needed to meet with me about the findings of the MRI. We went into his office still convinced that the MRI would show a lesion on my brain or spine that had indicated that I had MS. When he walked in, he looked happy but something wasn't right either. He said, without any doubt, that I did NOT have MS. I started to cry, tears of happiness and a feeling of ease surrounded me... but that was broken rather quickly. He said that the MRI did find something that was very rare though, and something that he had no experience with. He said "this won't kill you, but you do need to see a neurologist and neurosurgeon right away". I had a syrinx (large pocket of cervical spinal fluid, brain fluid, inside my spinal cord which was expanding the spinal cord and putting pressure on nerves. The disease is called syringomyelia and it is very rare. He referred me to the head of neurology and the head of neurosurgery.
I met with the neurologist at the beginning of July and after a long examination she confirmed that all of my symptoms are being caused by the syrinx. A syrinx can be caused by a tumor on the spinal cord, a brain malformation, trauma to the spinal cord that damages the sheath covering of the spinal cord - - all things that would puncture a hole or thin out the sheath so the fluid could leak inside and start causing problems. The report from the MRI i had in Calgary showed no trauma, no tumor and confirmed that I do not have the brain malformation. She said quite often it is just watched and the symptoms are treated with medication. Ok.... not so bad. That is, until I told her I had a CD with the MRI images from Calgary on it. She took a look at them and said "OH MY GOD" And from there, her whole demeanor changed. She said I needed to meet with the head of neurosurgery, and I told her I already had an appointment, and she was thrilled to hear that my own doctor had made that call already. She said the syrinx "was not normal" in that it has several pockets inside it which could very easily indicate a second disease in which several small tumors form on the spinal cord or nerves and cause several small pockets that grow together to form one large syrinx. This was now very urgent and she ordered a second MRI within weeks that would be done with dye to highlight any tumors in the spinal cord. She then released me to the neurosurgeon for consultation with some medication to treat nerve pain.
For the next month I took that medication and it eased the pain and for the first time in months I felt almost normal aside from the loss of hot cold sensation in my left leg. I researched the internet to learn more about the disease and scared myself senseless. Most people who have this disease continue to deteriorate and continue to experience more and more pain until they are wheelchair bound. It can cause damage to nerves that are needed for the operation of your essential organs and in rare cases can cause death. Neurosurgeons only do surgery in cases in which the person is quickly deteriorating and if they are quickly heading for a wheelchair, or if the person has a tumor that is blocking the flow of the spinal fluid.
At the beginning of August I met with the neurosurgeon who walked in the room and said the only way to deal with my syrinx was with surgery. He said I did indeed have a small, very small tumor at the C3 vertebrae level in my neck. He said the surgery would never correct the pain and damage that had already been caused, but it was to minimize any further damage from the pressure in my spinal cord-and to remove the tumor, if he could because it was so small and he didn`t want to cause a ton of damage by digging around in there any more than he had to. I cried. The surgery he suggested was the placement of a subarachnoid shunt. Basically it is a drainage shunt placed directly into the middle of my spinal cord (meaning my spinal cord needed to be cut open) and would drain the fluid back to the area in which it should be. It often works, but often the shunt can plug up and need to be redone (called a revision) after months or years. The risks of the surgery are huge - 5% chance of being a quadriplegic, higher of being a paraplegic. Risks also included loss of sensation in arms or legs, loss of control of the muscles that control breathing and having to be on a ventilator for life. But the risk of not doing anything is a 100% chance of being in a wheelchair forever, and soon.
Now, for anyone who knows what health care is like in Saskatchewan knows that people wait months and months, or years for surgery. I had surgery exactly 5 weeks later on Sept 9. After I had been knocked out for surgery, the neurosurgeon decided to do one more MRI with contrast (which I don`t remember at all) and found that there WAS NOT A TUMOR AFTER ALL!! But the surgery was hell anyway--4 broken vertebrae, a laminectomy ( grinding of those vertebrae to enlarge the area for the spinal cord) of 3 vertebrae and the placement of the shunt. I woke up with no feeling in my right leg, my good leg. No feeling in my groin and unable to get out of bed for 4 days. Morphine was my best friend. After 4 days, I took 10 steps with the help of physio aids on either arm. My life was falling apart. I was told then that the loss of sensation was likely from the swelling in the spinal cord and woudl improve as the swelling went down. That gave me some hope. After 8 days in the hospital, I was released home. I could walk, carefully for short distances - but after 4 weeks things changed, again. I had regained some sensation in my legs, but woke up one morning on the 1st of Oct and had lost all the sensation again, and was in a ton of pain in my spine. I called my doctor who seen me right away and suggested that if over the weekend things hadn`t improved, i was to call the neurosurgeon.
Nothing changed on on Oct 5 I called the neurosurgeon who told me to get straight into my vehicle and have someone drive me the 2 and a half hours away to his hospital because he suspected I had an infection in my spinal cord or the shunt. We loaded up and headed straight to the emergency room and after several exams I was told the pain was standard recovery pain but the loss of sensation was likely permanent from the surgery - a nerve had been cut to get into the spinal cord that controlled the sensation in my legs. My syringomyelia is what they call idiopathic - has happened for noobvious reason -- a 1 in 400,000 chance. But since I was there, and had driven that far, they ordered an MRI to confirm that nothing had changed as to where the shunt was, that it hadn`t moved, and that there were no injuries that had happened in the last 4 weeks. At 11pm, that night I found out that there were no injuries, the shunt was exactly where it should have been. BUT the shunt wasn`t draining - the surgery had failed. I needed to meet with the neurosurgeon again in a few weeks to `discuss our options`.
We met again on Oct 22. He said I would again be going for surgery. Again, I cried. This time I would have the shunt removed that had been placed in Sept - and have a second shunt placed that would drain the fluid from inside my spinal cord into my lungs. It is called a syringopleural shunt. Of course, again, the spinal cord has to be cut open, risking more damage to the nerves, but I was already seeing more changes neurologically that were putting me closer and closer to a wheelchair so I knew I had no choice but to do this. The muscle spasms were getting worse and I was beginning to lose control of my bladder. I wasn`t looking forward to the surgery in any way though, the pain from the first was clear in my head still. And I figured that the pain from this one would be far worse. The first surgery was 23 staples. The second surgery would cause me to have a second incision, as well as reopening of the first one, a hole through my shoulder blade and the shunt tube would be placed into the pleural space around my lungs to drain.
Nov 18 was the date set for the surgery. I woke up in a TON of pain in the recovery room - and had been warned that it would feel slightly like I was having a heart attack from the fluid that would be in my lungs. Within 6 hours that pain eased and that night I was up on the side of the bed. A MUCH easier recovery pain wise. The second day I was up walking and was released at supper time on day 3 - only 60 hours post-op. This surgery left me with 23 staples in my spine and 14 staples across my shoulder blade. It also left me with a totally numb groin still and a total loss of sensation in my left leg. Now, two legs that are numb, but strong. What a weird feeling. I came home with a walker and wheelchair - but stopped using both within 3 days.
I am now 3 and a half weeks post-op and feeling pretty good. I have regained some feeling in my right leg that I lost after the first surgery, regained some of the feeling in my left leg from the second surgery and regained some of the feeling in my groin, and HAPPILY regained control of my bladder. I am off the narcotics for the most part unless I do something stupid and overdo it. I am still on the nerve pain medication and supplements of potassium to help with the spasms. But none of my pre-ops symptoms are getting better. I still have some pain in my lungs now and then. I have no idea if this surgery has worked. I meet with the neurosurgeon on Jan 5 for a surgical follow-up and then will have an MRI 3 months post-op to see if the syrinx is draining or not. I pray to God it is....because if not, there is nothing more that can be done for me.
I am scared still, but coping. Trying to put on the brave face and happy face for my kids and my hubby. Without them, I could never have done any of this. I am trying hard to get ready for Christmas and trying harder to think positive about our future. It`s hard though, because everything I do, I find myself wondering if I will ever be able to do it again in the same way.
So, that`s my nightmare in a nutshell. I have gone from a busy active Mom, a busy active wife, a bookkeeper for the judo club and a phototech for the newspaper to sitting on the couch and just trying to get through the everyday. I am depressed, but trying hard to get myself out of it.
Never take your life for granted - and never take your health for granted because you literally never know when that will change. You never know when your life will change completely...
So, until the next update, Merry Christmas and I hope you all have a wonderful Christmas with your families.
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 Posted: Sat Dec 12, 2009 7:30 pm
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