On November 4, 2005. I woke up early at 5:00am, lifted my head off the pillow and turned it to look at my alarm clock. This insignificant action changed the direction of my life. This movement caused a sharp, searing agonizing pain just to the right of my spine between my shoulder blades. It was worse than childbirth. It was so bad it took my breath away and no matter which position I tried I couldn't ease the pain or even get a proper breath. Being a good wife and mother I got out of bed and tried to go into the living room where my agony would not disturb my husband or my 3year old daughter who were asleep in the bed.
I only made it part way when I realized I was going to faint. The pain intensified with movement and I could only see through a long dark tunnel. Next thing I knew I was waking up on the floor. My back was still killing me, I still couldn't breath but now I was also sure I was going to throw up. I had no choice but to call for help. My shocked husband arrived on scene half asleep, half awake trying to make sense of what I was telling him. He finally managed to comprehend enough to help me get partially upright with 5 or 6 pillows supporting my right arm (which was useless to me at present) and get me a bowl to be sick into.
It was then that the reality set in! We live in a very small town. The Emergency opens for business at 7:00am. The next closest hospital was 45minutes away. I was not and could not get in a car. So started the longest 2 hours of my life. The pain really did not lessen. I couldn't turn my head from a funny kink to the left that it had assumed. I couldn't move my right arm. I felt like throwing up at every second. Finally 7:00 arrived and I went to Emergency which is only about 5 houses away from us-luckily.
There I was quickly shown in-I was the first customer-and it was obvious I was in a lot of pain. Although I received a diagnosis of soft tissue injury or pulled muscle, I did receive good pain control. A shot of demerol, Percocet and Flexaril did the trick nicely and although I was not conscious for most of the day I as blissfully comfortable.
This is a dramatic start and 2 years later I still don't have answers as to what happened that day. I went to a chiropractor the next day as if felt like something was "out". He did say that 2 or 3 of my ribs where very subluxed or out of alignment. More subluxed then he had ever seen before. I don't know if this is what caused the pain and SOB. I don't know if this subluxation caused a sudden increase in the size of my syrinx. No one else I have ever talked to has had such a dramatic event precipitate the discovery of a syrinx.
This dramatic start was the beginning of a long road. The pain lessened from that initital day but remained severe, burning, about 6-7/10 and did not move locations. It remained in my upper spine just to the right of my verterbra. I also had numbness and tinlging down my right arm. I was dx with a soft tissue injury and given Advil, physio and was told to ice it and rest. The weeks slipped by, then months. My doctor still kept insisting that it must be a soft tissue injury. I was too young to have anything serious wrong with my back. My xrays were normal. All signs pointed toward it being no big deal.
Finally after 4 months when my short term disability ran out and I had to return to work, I insisted on some further action. My attempt at returning to work was short lived. My back pain which had subsided to about a 5/10 was now back up at 7-8/10 I had numbness and tingling down my right arm and my neck was also stiff and sore. I was back off of work but now I was unpaid. I didn't know what else to do. I could not manage a 1 hour drive each way and then a 12 hour shift on my feet. A CT was finally ordered which came back normal. The local neurosurgeon would not see me b/c my CT was normal. So I got a referral to a rheumatologist. This took 5months. He FINALLY ordered and MRI for me and after a 6month wait for that I finaly got my MRI over a year after the initial event. It showed a syrinx. I was actually very pleased that it had showed something. I had been telling my doc for over a year that there was something really wrong with my back. And for a year she had been saying it's just a soft tissue injury you are too young for anything serious.
My family doc did not know what a syrinx was. She said " I think it's a cyst on your spine, I phoned the neurosurgeon here and he said they are no big deal, he get's calls about them all the time. He doesn't feel he needs to see you" At this time I thought OK, it must be no big deal. My doc had given me a photocopied page about what a syrinx is and told me to go home and do some research. So I went home and googled it. OH MY GOD!!! This is no big deal? Is he insane? I' m going to die I won't see my girls grow up and get married. My husband will be a widower. These were my initial thoughts and I went into a state of shock and threw a big pity party for about 3 days.
It was then that I stumbled across the ASAP message board and got talking to all the wonderful people that have dealt with this and know so much. SarahinParadise, Mac (Virginia) and Sandy stand out in my memory as being so supportive, caring and knowledgable. The more I learned the more I researched the calmer and better I felt. I truly believe knowledge is power. As I become knowledgable I felt less like a victim and more like the strong, smart woman I know that I am.
I have spent a year now with the diagnosis of sm. I have had different symptoms appear in this time and have collected other diagnoses along the way. I have found many answers to symptoms I have had for about 12 years. I am stronger, more patient, kinder, and more compassionate than I was before. I treasure my family, friends and my life more than ever. I feel truly blessed in my life. I never said why me even in my darkest hour. Why not me. When you look around at the suffering that goes on on this planet why would I feel that I should be immune. I know that this is all part of the Lord's plan for me in my life. He is in charge and will never give me more than I can handle. This has become a blessing to me. It is here to teach me something and I am here to learn. I have lots left to learn but so far I have learned to slow down, enjoy every day, cherish the special moments. I am truly grateful for all the special blessings in my life and these are what I focus on.
On November 4, 2005. I woke up early at 5:00am, lifted my head off the pillow and turned it to look at my alarm clock. This insignificant action changed the direction of my life. This movement caused a sharp, searing agonizing pain just to the right of my spine between my shoulder blades. It was worse than childbirth. It was so bad it took my breath away and no matter which position I tried I couldn't ease the pain or even get a proper breath. Being a good wife and mother I got out of bed and tried to go into the living room where my agony would not disturb my husband or my 3year old daughter who were asleep in the bed.
I only made it part way when I realized I was going to faint. The pain intensified with movement and I could only see through a long dark tunnel. Next thing I knew I was waking up on the floor. My back was still killing me, I still couldn't breath but now I was also sure I was going to throw up. I had no choice but to call for help. My shocked husband arrived on scene half asleep, half awake trying to make sense of what I was telling him. He finally managed to comprehend enough to help me get partially upright with 5 or 6 pillows supporting my right arm (which was useless to me at present) and get me a bowl to be sick into.
It was then that the reality set in! We live in a very small town. The Emergency opens for business at 7:00am. The next closest hospital was 45minutes away. I was not and could not get in a car. So started the longest 2 hours of my life. The pain really did not lessen. I couldn't turn my head from a funny kink to the left that it had assumed. I couldn't move my right arm. I felt like throwing up at every second. Finally 7:00 arrived and I went to Emergency which is only about 5 houses away from us-luckily.
There I was quickly shown in-I was the first customer-and it was obvious I was in a lot of pain. Although I received a diagnosis of soft tissue injury or pulled muscle, I did receive good pain control. A shot of demerol, Percocet and Flexaril did the trick nicely and although I was not conscious for most of the day I as blissfully comfortable.
This is a dramatic start and 2 years later I still don't have answers as to what happened that day. I went to a chiropractor the next day as if felt like something was "out". He did say that 2 or 3 of my ribs where very subluxed or out of alignment. More subluxed then he had ever seen before. I don't know if this is what caused the pain and SOB. I don't know if this subluxation caused a sudden increase in the size of my syrinx. No one else I have ever talked to has had such a dramatic event precipitate the discovery of a syrinx.
This dramatic start was the beginning of a long road. The pain lessened from that initital day but remained severe, burning, about 6-7/10 and did not move locations. It remained in my upper spine just to the right of my verterbra. I also had numbness and tinlging down my right arm. I was dx with a soft tissue injury and given Advil, physio and was told to ice it and rest. The weeks slipped by, then months. My doctor still kept insisting that it must be a soft tissue injury. I was too young to have anything serious wrong with my back. My xrays were normal. All signs pointed toward it being no big deal.
Finally after 4 months when my short term disability ran out and I had to return to work, I insisted on some further action. My attempt at returning to work was short lived. My back pain which had subsided to about a 5/10 was now back up at 7-8/10 I had numbness and tingling down my right arm and my neck was also stiff and sore. I was back off of work but now I was unpaid. I didn't know what else to do. I could not manage a 1 hour drive each way and then a 12 hour shift on my feet. A CT was finally ordered which came back normal. The local neurosurgeon would not see me b/c my CT was normal. So I got a referral to a rheumatologist. This took 5months. He FINALLY ordered and MRI for me and after a 6month wait for that I finaly got my MRI over a year after the initial event. It showed a syrinx. I was actually very pleased that it had showed something. I had been telling my doc for over a year that there was something really wrong with my back. And for a year she had been saying it's just a soft tissue injury you are too young for anything serious.
My family doc did not know what a syrinx was. She said " I think it's a cyst on your spine, I phoned the neurosurgeon here and he said they are no big deal, he get's calls about them all the time. He doesn't feel he needs to see you" At this time I thought OK, it must be no big deal. My doc had given me a photocopied page about what a syrinx is and told me to go home and do some research. So I went home and googled it. OH MY GOD!!! This is no big deal? Is he insane? I' m going to die I won't see my girls grow up and get married. My husband will be a widower. These were my initial thoughts and I went into a state of shock and threw a big pity party for about 3 days.
It was then that I stumbled across the ASAP message board and got talking to all the wonderful people that have dealt with this and know so much. SarahinParadise, Mac (Virginia) and Sandy stand out in my memory as being so supportive, caring and knowledgable. The more I learned the more I researched the calmer and better I felt. I truly believe knowledge is power. As I become knowledgable I felt less like a victim and more like the strong, smart woman I know that I am.
I have spent a year now with the diagnosis of sm. I have had different symptoms appear in this time and have collected other diagnoses along the way. I have found many answers to symptoms I have had for about 12 years. I am stronger, more patient, kinder, and more compassionate than I was before. I treasure my family, friends and my life more than ever. I feel truly blessed in my life. I never said why me even in my darkest hour. Why not me. When you look around at the suffering that goes on on this planet why would I feel that I should be immune. I know that this is all part of the Lord's plan for me in my life. He is in charge and will never give me more than I can handle. This has become a blessing to me. It is here to teach me something and I am here to learn. I have lots left to learn but so far I have learned to slow down, enjoy every day, cherish the special moments. I am truly grateful for all the special blessings in my life and these are what I focus on.