Against All Odds

Since being diagnosed with SM my doctors, family, friends and I have been trying to figure out what exactly might have caused my syrinx (cyst). I had a car accident about 10 years ago where I was rear ended, however, no symptoms ensued. I was a very clumsy child and still am as an adult. I’m not sure if the clumsiness caused, or was caused by my SM. So far, we have had not a clue where this has come from and the term for this is “idiopathic.”

Apparently, having idiopathic SM is quite uncommon. Although I have been unable to locate a percentage of those of us who have SM are idiopathic every research study shows that there is a very small percentage of us out there. There are only between 200,000 and 250,000 people in the United States with Syringomyelia. They say that there are 8 out of every 100,000 people who have SM. If I have done my math right the capitol of my state has 600,000 people and that means that there are 48 people with SM there. In my hometown there are only 5,000 people, so statistically I shouldn’t have it, right?

I learned something new about my diagnosis today that might have played a role in my SM symptoms.  Apparently my vitamin B12 deficiency could have been either a cause in the actual diagnosis, or even just aided in the prompt progression.  Now, more than ever, I am going to have to keep up with my weekly B12 shots. I pray that will help my back pain to dissipate and my life to regain some sense of normalcy.

Never Give Up Hope

“Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.” -Lance Armstrong

My SM journey has been quite difficult today.  I overdid it the last few days and lifted my son more than I should have. I’ve realized I can lift or hold him once per day, but I was really pushing it yesterday lifting him as many times as I did. Having children that I can’t lift or do things with like I used to has been really difficult for me; I just don’t know how to handle it. I pray for the strength to get through this and heal everyday…I hope He hears me.

I spoke with my cousin today who has been in the medical field for many years and has a lot of wonderful advice.  He spoke with me and urged me to get a second opinion if only for my own sanity.  I agree with him and I will look into going to another neurologist who specializes in this disorder that he has recommended.  He gave me some great insight into what types of procedures that can possibly prevent the loss of proprioception. If I will know where my arms and legs are I’m game! Because this doctor is hundreds of miles away, however, that means I will likely have surgery and it will be far from home. I’m hopeful and scared at the same time. It’s most definitely bittersweet.

The quote by Lance Armstrong I began this entry with means so much to me because it’s made me abundantly aware that I have to take the first step in my diagnosis to overcome this adversity. It’s a very fearful step for me to take and I have been quite reluctant to do so, but I know that it is for the best not only for me, but also for my family. My cousin told me something that really hit home, I am entirely too young to be going through this type of pain, especially with young children. I agree with him and I will pursue the best possible treatment for this disorder.  This Easter I am thankful for my family and their support through all of this, especially in pushing me to find the best option possible.

Long Time No Blog

Well it has been a week since my last entry and I have had a very eventful week with my SM.  I have had several days where the back has been excruciating and there have been days where I have felt decently.  It’s been very much a roller coaster ride for me this week. 

The injections most definitely did not work.  I’m not sure why I haven’t called the pain specialist again to let them know that the procedure didn’t work, but I haven’t.  I have a feeling the main reason I didn’t want to call is because if I do call I have officially conceded to my first procedure not working.  That is a very defeated feeling for me.  I held out hope for a week and a half and I realized that all hope was lost when I have been in pain for the majority of the week.  The Gabapentin that my doctor prescribed me has really helped the burning feeling turn into a warm feeling instead. For that I am completely thankful!

My foot cramps have been a lot more minimal thanks to my new medication. I do get some twinges in my feet from time to time, but they are nowhere near as severe.  When I do get a foot cramp they are a lot more manageable. I sometimes get strange twinges in my thigh and my other leg muscles that are hard to explain.  Yesterday I began having an odd sensation in my toe like a bug was crawling up my second toe on my left foot.  I can’t even begin to tell you how strange that feels, especially when you look down to kill a bug and it’s just a nerve twitch…bizarre!

The headaches have remained. This is the third month in a row that the same dull headache has lingered.  On the bright side of things, my migraines have occurred less often.  I did have one very painful one this week and I had one today where I lost about 75% of my vision. That is the worst one for me because it literally debilitates me. Obviously there is very few things I can accomplish when I cannot see.

I realize that it is a long journey and if I want to do well, I have to go through these tough times.  I have to keep my head up and push through this terrible diagnosis.  I just want to thank my family and friends who have been so very thoughtful during this difficult time. The love and support that they have shown has helped me to make it through this with a positive outlook.

"Experience is the teacher of all things" -Julius Caesar

"Can I see another's woe, and not be in sorrow too? Can I see another's grief, and not seek for kind relief?" -William Blake

 

I find great comfort in knowing that there is a distinct possibility that my disparity might bring comfort and understanding for someone who is either going through something similar to what I am, and will continue to go through or knows someone who is suffering from a similar disorder.  That being said I want to share with you all one of my goals since being diagnosed with SM. I would love to begin traveling across the country to meet the (very few) people who have also been diagnosed with, have had family or friends diagnosed with or are just interested in learning about this disorder. I think that bringing one of my joys, public speaking, and one of my woes, SM, together I can help people to heal. I realize that we suffer through great pain and not everyone understands our suffering. It is so important that people understand that this isn’t something that will just go away with time, in fact, that is nearly impossible.

I have been blessed so far with great friends and family members who are very understanding and do not question what this disorder can and has done to me. They also do not doubt that I will push through this and come out a much stronger person. There are some, however, who have been quite unkind about my suffering and have insinuated that I basically am only “lying on the couch” and that I am a bad mother for this. To them I say, you’re not worth another moment of my time. I just have to keep the attitude that my friends and family will support me, and whoever doesn’t understand, never will…and I’m going to be fine either way. I will, however, do everything in my power to educate people in what this disorder encompasses.

Now it’s time for an update on my health since my last post. The past two days have been surprisingly moderate for me and the pain hasn’t been as bad as they normally have been. I am praying that it is because of the medicine that the pain specialist prescribed me. If not, I am just grateful for not having a migraine for the last two days. Victory at last!

One Minute At A Time

Today was a very discouraging day in my battle with Syringomyelia (SM). I woke up a lot during the night due to the pain. I can remember one time during the night that was the most agonizing where I sat straight up in the bed and tears involuntarily streamed down my face. It just epitomized the way I have been feeling every day for the last several months. It is hard to stay positive when your treatment didn’t work and you are actually hurting worse than you were before.

Today was my first day back to work after my trigger point injections and I didn’t even make it all the way through. I left early and I left in pain. I came home and took two of my pain pills and it took a great deal of the edge off but I hate those things. I’ve wanted to stay away from those things as long as possible and I realize that it’s no longer feasible for me to avoid them.

My victories today were that I didn’t have my hand go numb and my migraine finally left today. I was so glad to have those two victories because it’s been a difficult journey for the last several days. I am hoping that I will sleep tonight and my bags under my eyes will fade a little bit. The reactions I got from people today when they saw me without makeup (I didn’t feel up to putting it on today) was pretty eye opening. Apparently the dark circles have affected my appearance these days. I hope that the meds they gave me will help me to sleep so that I can lose these bags. I am going to try extra hard to keep positive and will take every day one minute at a time.

No Pain No Gain?

“In times of great stress or adversity, it's always best to keep busy, to plow your anger and your energy into something positive.” -Lee Iacocca

I am trying so hard to live my life like this but with the pain I have been in lately it’s hard to see the light at the end of the tunnel and stay positive. I woke up today feeling just like I did yesterday. That was really very discouraging for me. The pain in my left shoulder has actually intensified if you can believe that. My mother saw my shoulder today and commented that I was really bruised. I hadn’t noticed because it is in a location I cannot see. When I had her take a picture with my phone and show me I realized that the shot was no laughing matter…that thing was brutal!

I go back to work today and I have been struggling with the thought of hurting through another work day. I wish that I could have one day of relief. I miss feeling “normal.” I plan on feeling better, but I know that the process is going to take some time. I pray every day that this will subside.

My left hand went numb today when I went to pick up my kiddos from school. I hadn’t had that in about a week and a half. I, of course, commented on how happy I was that it has not happened for a while and I realized that was my downfall. If things are going good I should just thank my lucky stars and keep my mouth closed. I really do like bask in sunshine of my daily victories, though. I’m keeping my head up and will push through this, but some days are much tougher than others. I will get through this.

Red Wasps

&$!*#% that hurt. That pretty much sums up my procedure today. Luckily I had an amazing doctor that talked me through the procedure, my options, and my future treatment possibilities. I’ve really been lucky to have some of the greatest doctors to help me through this process. What happened today was that I had four trigger point injections in some of the most painful places my syrinx has affected.  Those, to put it mildly, feel like the largest red wasps in history stinging me for about 10 minutes in each injection site. That was absolutely four of the most painful shots I’ve ever had in my life. I’m really lucky I have a pain tolerance as high as it is or I would have jumped off that table.

We have narrowed down some of my treatment plans for the future and these injections are the starting point of my pain management treatment. I have also been given neurological medications which have some not so happy side effects. I’m hoping that they will help me much more than they can harm me. I will need to continue on my treatment path with a lot of stretches with my physical therapist. They are going to refer me to one today so I will begin that journey shortly. I am hopeful for that process because it’s my last option before surgery. I am going to give it my best and hope that it will help with the Syringomyelia symptoms.

Now today, as I mentioned earlier, I had my trigger point injections. Those were very painful and were to hopefully relieve some of the pain within the first hour or so. I had the injections at about ten this morning and I have yet to feel relief. I am still hopeful that I will gain some relief tomorrow. Let me describe briefly what these injection sites now feel like for a moment. I had injections in both shoulders and inside each of my shoulder blades. There is still a lot of resonating pain between my scapulas (shoulder blades) and to touch them…sheer agony. The shoulder on my right side felt a mild improvement within the hour after treatment; however, I did gain a shooting pain up my neck about ten minutes after the relief set in and that has remained. The left shoulder was the most painful of the four shots. Ironically, this was the one of the four locations that had the least intense pain…that quickly changed. I now have a large knot at the injection sight and to touch that feels like I’m stabbing myself.

 I do, though, have a high hope that these injection sites will stop hurting tomorrow and relief will ensue. I am just so grateful that I finally found something that MIGHT help. If these don’t help I will go back and get some other treatment because by God something will work someday. I just have to be patient and keep on trucking.

Enough is Enough

Tomorrow I get my first treatment for my Syringomyelia. I have been referred to a pain management company and they will be performing a procedure to insert steroids into my spine. I am pretty nervous about this procedure and have been unable to sleep for the last several nights. A lot of the sleeplessness is due to the nerves for the procedure, the unavoidable pain, and the headaches. Unfortunately, my headache has lasted the entire weekend and the back pain has come back full force. Because of this pain, I guess it’s good that they will be performing this procedure tomorrow.  

I did enjoy a part of my day yesterday with the kids. I spent a portion of the day taking the kids out to eat and to a movie. When I got home I was beyond exhausted and in pain. It has been pretty frustrating to have difficulty performing normal tasks not only for me, but also for my children. I am hoping that this treatment will help me because I am terrified that this is going to affect my ability to do things with my children. This cyst has taken enough of my quality living time; it’s time for it to stop.

Although this weekend has been a painful one, I am hopeful that tomorrow with bring me strength, courage and the ability to live a somewhat normal life. The procedure will only mask the pain of what is going on in my spinal cord, but there is a potential that mask will help the pain to subside long enough to participate in the activities that I have so longed to return. I miss my guitar, exercising, my independence, and most importantly my quality time with my beautiful children. I know that if I give my treatment a chance, I can regain my life slowly. Enough is enough, it’s time for a change and I can’t do that without taking that first step. Tomorrow I will begin my healing journey.

Not Getting Me Down

Have you ever woken up and felt like it was one of those days you’d love to just stay under the covers and spend the day in bed? For people with Syringomyelia, I think that happens every day. For the past several months I have wanted to stay in bed all day because the headaches and back pain are always present. Some days are better than others and some nights are, too.

The last few days have been what I call my migraine days. I realized that my syrinx causes me to have a headache constantly (have had the same one for 2 straight months) and a migraine around every three days. This week was better because I only had a migraine for 2 of those days. Unfortunately, there’s really not much I can do for these headaches or migraines. I think I’ve tried every remedy for them for the last 15 years and each failed. I’ve had the migraines since I was 13; however, in the last several months they have intensified and become more frequent. The good news is that I have learned to live and function with them. This is a feat that many have a hard time believing. I’ve had people question whether I actually have migraines because I can go through a normal day at work and deal with the nauseous feeling, sensitivity to light and sound and the absolute torture of the stabbing pain where most people couldn’t. It isn’t the best feeling in the world to be called a liar, but I have to move through this because I won’t let the symptoms or naysayers get me down.

Last night I had foot spasms, another of the symptoms for this disorder. That was the first time I couldn’t just push through the pain. There I was in the hallway stopped dead in my tracks writhing in pain. My daughter (5 years old) stopped and stared at me and consoled me as I grasp onto the doorway trying to get a bit of relief. I have tried so hard to shield the kids from this as much as possible but when you’re in pain it’s hard to do effectively. I’m blessed to have such great children and a supportive family who have really stepped up and helped me through this struggle.

I want to share that today my back doesn’t hurt nearly as bad as it did yesterday, my headache is only a dull annoyance and my feet have not yet had a spasm today…all great news. I plan to get out there and celebrate the day with my kids and live my life just as I would have had I not been diagnosed. I do realize that I have some limitations, but I’ll deal with them as they come because the most important thing to remember is that I can’t let this get me down. My kids won’t be little much longer and I plan to enjoy every day I have with them.

Luck of the Irish

“Misti, I received the results of your MRI and we discovered something. I have some answers for your symptoms…” those words spewing from my voicemail felt surprisingly harsh to me on my favorite day of the year, St. Patrick’s Day. I expected the doctor find a slipped disc or a small curvature in my spine but I heard the strangest sounding word I’d ever heard, syringomyelia. I remember asking the nurse to spell it because I was flabbergasted at the sound of the disorder in which I was apparently suffering. She said, “Misti, you have a cyst…INSIDE your spinal cord and it’s quite large. We are referring you to a neurologist.” The first thought in my head was, “great, the luck of the Irish…”

I found out that day that Syringomyelia is a cyst within the spinal cord consisting of cerebral spinal fluid (CSF) and that my cyst, often called a syrinx, stretches from my cervical spine (C5) to my thoracic spine (T5). I began frantically searching for answers regarding the disorder and found many heart breaking stories. They were of the trials and tribulations surrounding this evidently lifelong and agonizing disorder. I also found out that I had every symptom and that when symptoms arise, it’s generally not a good thing. I was terrified!

 After visiting with my neurologist I discovered that my syrinx is in a very inopportune location. Surgery is a very common treatment for this disorder; however, because the majority of my syrinx is in my thoracic spine, cutting into the spinal cord in that location would cause irreparable damage. I would lose my proprioception (ability to determine the location of my limbs). With the support of my family and neurologist, I have opted not to have surgery on my syrinx.

This blog is going to be dedicated to my journey living with this disorder and my trials, tribulations and triumphs. I hope that my journey from diagnosis through my treatment will be an inspirational story that will help people who have spinal cord injuries or disorders to realize that although there are many days the pain is insufferable, we can be normal people and live a full and active life. This disorder is definitely interrupting my life, but I will certainly fight back!

For more information regarding Syringomyelia please visit the Chiari and Syringomyelia Foundation and American Syringomyelia & Chiari Alliance Project.

Misti