I am writing this letter to raise awareness about Chiari Malformation and Syringomyelia. According to research, from 1992 - 2001, the incidence increased to 4.7 new cases per 100,000 per year, more than 6 times the rate during the 1960's. Seeing this trend, it is understandable why syringomyelia was thought to be so rare.
As I write this article, please do not feel bad for me after reading it. I want to state facts, it’s not to complain. And please don’t think that it’s so negative. It may sound negative but we should be able to decipher facts from negativism. For me, we should be given a chance to share about what we go through one way or another in order to raise awareness and in order to be understood especially for people like us who have this invisible disability. I’m not writing these symptoms to complain. Please, I warn everybody that if it may affect you in a negative way to please stop reading because that is not my plan. Thank you for your understanding in advance.
I was diagnosed with Chiari Malformation with Syringomyelia in October of 2002. I’m now suffering from lack of sensation for the most part of the left side of my body. I’ve had Myelopathy for some time now. The first muscle that SM attacked in my case was my
Psoas Major and its surrounding muscles. From the left part of my torso, it went up to my head. There is no cure. There may not be stem cell therapy in spinal cord right now here in the US but I used to hope that I could benefit from it. Unfortunately, my specialist told me that I cannot be a candidate for stem cell transplantation. So I’m not looking forward to that to happen. It’s a scary feeling knowing that you are slowly getting paralyzed but I can only wait and see and live with it in the meantime because there is no cure for it now. Hoping that before total paralysis happens, there will be a
cure.
It's been almost 18 years of ordeal. The last two years had been
devastating for me. My condition had just been spiraling down
where I have almost been confined to my bed. The weakness in my lower and upper extremities, numbness and stiffness in my torso and having flaccid stomach muscles that prevents me from sitting up had prevented me from doing things I wanted to do. It’s tough to do basic things like reading a book, using a computer, sitting up, or even looking at my phone. Watching television is included to that. Trying to get some sleep is very difficult, one because there’s only one small spot in my head that can touch a pillow, I can’t lay my back and buttocks in bed because they get numb/paralyzed where they can’t move and creases in my clothing can change my sensorium. Although it may be difficult to lie down, it’s still a position that helps the most. I lay in bed about 85-90% of the day because, for one reason my legs aren’t strong enough to be standing and my trunk is the main reason that I always go back to bed, definitely the trunk paralysis is making all this worse.
Right now, the scary symptom for me is the difficulty waking up or being alert. I don’t know what’s going to happen. I know for sure
that it has to do with the C2 damaged nerves. I had been taken to the hospital a few times before because of this but now it has progressed.
Psoas Major and its surrounding muscles. From the left part of my torso, it went up to my head. There is no cure. There may not be stem cell therapy in spinal cord right now here in the US but I used to hope that I could benefit from it. Unfortunately, my specialist told me that I cannot be a candidate for stem cell transplantation. So I’m not looking forward to that to happen. It’s a scary feeling knowing that you are slowly getting paralyzed but I can only wait and see and live with it in the meantime because there is no cure for it now. Hoping that before total paralysis happens, there will be a
cure.
It's been almost 18 years of ordeal. The last two years had been
devastating for me. My condition had just been spiraling down
where I have almost been confined to my bed. The weakness in my lower and upper extremities, numbness and stiffness in my torso and having flaccid stomach muscles that prevents me from sitting up had prevented me from doing things I wanted to do. It’s tough to do basic things like reading a book, using a computer, sitting up, or even looking at my phone. Watching television is included to that. Trying to get some sleep is very difficult, one because there’s only one small spot in my head that can touch a pillow, I can’t lay my back and buttocks in bed because they get numb/paralyzed where they can’t move and creases in my clothing can change my sensorium. Although it may be difficult to lie down, it’s still a position that helps the most. I lay in bed about 85-90% of the day because, for one reason my legs aren’t strong enough to be standing and my trunk is the main reason that I always go back to bed, definitely the trunk paralysis is making all this worse.
Right now, the scary symptom for me is the difficulty waking up or being alert. I don’t know what’s going to happen. I know for sure
that it has to do with the C2 damaged nerves. I had been taken to the hospital a few times before because of this but now it has progressed.
I haven’t given up though. I used to work hard and kept active. Even after going through a lot of pain, I always found a way to do things. My Mom once said that I got this disease because I worked too hard. I think it’s ludicrous. I used to be fit. My arms were toned and my stomach was flat like every woman’s desire. Not to
complain but now I am very weak and hardly active. My flabs are
growing everywhere. I stay home everyday mostly in my pajamas.
My social life is stagnant. But it’s tough to avoid a stale life if it’s a challenge just to shower andI’m not able to sit to socialize. I hardly go and see my doctor, only when it is really necessary. I’ve only been to church once in three years! I only go out once in a long while, so I try hard to look nice when I do. It may take a lot of
effort on my part to groom but it helps me to feel like I fit in. I like
people who appreciate the beauty of dressing up in order to feel
the good about themselves.
With Syringomyelia, every movement is challenging. Almost ten years ago, I gave up my job working for Waste Management in Santa Rosa because of my inability to sit up. I changed career to suit my disability. I did odd jobs and changed jobs many times, stopping when I can’t and getting back at another. I had to accept a job as a grocery clerk because it didn't require me to sit up (didn't realize until later that it did put a lot of pressure in my spine). I worked until my body gave up. After totally giving up work in
2006, I thought there has to be something I could do. That’s when I started my own business and did it for about a year taking a break after 7 months until one day; my body couldn’t function any longer. In order to continue with my business I needed to hire someone to do all the work which obviously I couldn’t afford. I had to stop for a while but got back at it again after thinking that I can, but I was
wrong. The nerves and muscles of a person with Syringomyelia do not recuperate at the same rate as a normal person depending on
where the damage is on their spinal cord. It’s a fact that people with Syringomyelia cannot have a gainful employment. Trust me weakness dominates. After retiring, I felt sad and useless. As painful as it was to stop the business I had started, it had to be done. My dream of having my own bakery went up in flames as with any other dreams I had. I felt even more sadness when the ability of driving was taken away from me. It was devastating.
The weakness, numbness, tingling sensations, difficulty breathing and swallowing, paresthesia and dysesthesia continues. I can deal with the rest but the numbness and loss of sensation are worse, it’s hard just to get comfortable. I used to say that maybe when I get paralyzed, it won’t be as bad. I was so wrong; it is ten times the pain! Every part of my body that touches the bed turns numb including my head. My brain feels like its being crushed or drilled. Only one side of my head can touch a pillow. It’s difficult to find a good position that’s comfortable, seams and creases in my clothing makes my body feel weird. It changes my sensorium. The pain is excruciating and constant, it could be any part of my body from my head to my toes to my fingers, twenty four hours. Since 1998, I had
dealt with my buttocks feeling like it’s broken into pieces and it’s burning on fire and then the pain extends down the legs and up my waist to my stomach. I can’t lay on them either. My stomach had
been a constant problem since 1995. Doctors used to tell me that there’s nothing on the left side of my stomach. But the pain had been there as long as I can remember. Years later, I realized that the
left side of my stomach walls were the first muscles that were attacked by SM. I had been taken to the ER for it including difficulty breathing, choking, etc. a hundred of times, I’m sure. Had many surgeries to correct it but it’s even triple the pain from before. Because of neuropathy and gastroparesis, each time I eat anything, my stomach got distended as to where there’s no more space for air to go but it still is coming up with more. It is very uncomfortable. The small stomach that I had was replaced with a bloated one that I have to wear a dress or loose clothing all the time. I had a seamstress sew some maternity dresses for me, as those are the only kind of clothing I can wear comfortably. I tried to sell all my belts at a used accessory store. Same thing with all my shoes and
my extended wardrobe from size zero, two‘s and then four‘s. I had always been fashionable, but I had to forget that. It’s difficult to part with them. Reminds me when I had to give up my Acura TL in 2007. My son and I were so attached to that car. I loved driving it as it was so comfortable. I know, it helped with our comfort but it was only a material thing. Thankfully, I still have a roof over my head. I had learned to adjust and appreciate the small things over the years.
complain but now I am very weak and hardly active. My flabs are
growing everywhere. I stay home everyday mostly in my pajamas.
My social life is stagnant. But it’s tough to avoid a stale life if it’s a challenge just to shower andI’m not able to sit to socialize. I hardly go and see my doctor, only when it is really necessary. I’ve only been to church once in three years! I only go out once in a long while, so I try hard to look nice when I do. It may take a lot of
effort on my part to groom but it helps me to feel like I fit in. I like
people who appreciate the beauty of dressing up in order to feel
the good about themselves.
With Syringomyelia, every movement is challenging. Almost ten years ago, I gave up my job working for Waste Management in Santa Rosa because of my inability to sit up. I changed career to suit my disability. I did odd jobs and changed jobs many times, stopping when I can’t and getting back at another. I had to accept a job as a grocery clerk because it didn't require me to sit up (didn't realize until later that it did put a lot of pressure in my spine). I worked until my body gave up. After totally giving up work in
2006, I thought there has to be something I could do. That’s when I started my own business and did it for about a year taking a break after 7 months until one day; my body couldn’t function any longer. In order to continue with my business I needed to hire someone to do all the work which obviously I couldn’t afford. I had to stop for a while but got back at it again after thinking that I can, but I was
wrong. The nerves and muscles of a person with Syringomyelia do not recuperate at the same rate as a normal person depending on
where the damage is on their spinal cord. It’s a fact that people with Syringomyelia cannot have a gainful employment. Trust me weakness dominates. After retiring, I felt sad and useless. As painful as it was to stop the business I had started, it had to be done. My dream of having my own bakery went up in flames as with any other dreams I had. I felt even more sadness when the ability of driving was taken away from me. It was devastating.
The weakness, numbness, tingling sensations, difficulty breathing and swallowing, paresthesia and dysesthesia continues. I can deal with the rest but the numbness and loss of sensation are worse, it’s hard just to get comfortable. I used to say that maybe when I get paralyzed, it won’t be as bad. I was so wrong; it is ten times the pain! Every part of my body that touches the bed turns numb including my head. My brain feels like its being crushed or drilled. Only one side of my head can touch a pillow. It’s difficult to find a good position that’s comfortable, seams and creases in my clothing makes my body feel weird. It changes my sensorium. The pain is excruciating and constant, it could be any part of my body from my head to my toes to my fingers, twenty four hours. Since 1998, I had
dealt with my buttocks feeling like it’s broken into pieces and it’s burning on fire and then the pain extends down the legs and up my waist to my stomach. I can’t lay on them either. My stomach had
been a constant problem since 1995. Doctors used to tell me that there’s nothing on the left side of my stomach. But the pain had been there as long as I can remember. Years later, I realized that the
left side of my stomach walls were the first muscles that were attacked by SM. I had been taken to the ER for it including difficulty breathing, choking, etc. a hundred of times, I’m sure. Had many surgeries to correct it but it’s even triple the pain from before. Because of neuropathy and gastroparesis, each time I eat anything, my stomach got distended as to where there’s no more space for air to go but it still is coming up with more. It is very uncomfortable. The small stomach that I had was replaced with a bloated one that I have to wear a dress or loose clothing all the time. I had a seamstress sew some maternity dresses for me, as those are the only kind of clothing I can wear comfortably. I tried to sell all my belts at a used accessory store. Same thing with all my shoes and
my extended wardrobe from size zero, two‘s and then four‘s. I had always been fashionable, but I had to forget that. It’s difficult to part with them. Reminds me when I had to give up my Acura TL in 2007. My son and I were so attached to that car. I loved driving it as it was so comfortable. I know, it helped with our comfort but it was only a material thing. Thankfully, I still have a roof over my head. I had learned to adjust and appreciate the small things over the years.
Conversely, according to research, the symptoms that are caused by degenerative disease of the spine vary tremendously depending on the specific pathology a patient has. Pain, both in the back or neck
and in the arms or legs, is a common finding. Additionally, neurological symptoms due to compression of spinal nerves or even the spinal cord itself can occur as well in some cases. This can typically cause sensory symptoms (such as numbness, tingling, pain, etc.) as well as motor symptoms (weakness or paralysis, muscle wasting, abnormal reflexes, etc.).Treatment for degenerative spine disease varies considerably depending on the specifics of each case. Some patients benefit from conservative therapy with rest and physical therapy. Others benefit from injections of the spine. I used to get epidural injections in my spine (lumbar and cervical) for a number of years until the doctors at the Pain Management clinic told me they had to stop administering it because of symptoms of spinal cord compression that it had become too dangerous. Some cases require surgical intervention. Yes, I had to go through many surgeries.
Syringomyelia (SM) is a neurological disorder where a fluid-filled cyst - or syrinx develops inside the spinal cord. This cyst can grow over time, causing the spinal cord to expand and stretch nerve tissues. Patients may experience severe chronic pain, abnormal sensations and loss of sensation particularly in the extremities. Eventually, the syrinx can cause permanent nerve damage and paralysis.
and in the arms or legs, is a common finding. Additionally, neurological symptoms due to compression of spinal nerves or even the spinal cord itself can occur as well in some cases. This can typically cause sensory symptoms (such as numbness, tingling, pain, etc.) as well as motor symptoms (weakness or paralysis, muscle wasting, abnormal reflexes, etc.).Treatment for degenerative spine disease varies considerably depending on the specifics of each case. Some patients benefit from conservative therapy with rest and physical therapy. Others benefit from injections of the spine. I used to get epidural injections in my spine (lumbar and cervical) for a number of years until the doctors at the Pain Management clinic told me they had to stop administering it because of symptoms of spinal cord compression that it had become too dangerous. Some cases require surgical intervention. Yes, I had to go through many surgeries.
Syringomyelia (SM) is a neurological disorder where a fluid-filled cyst - or syrinx develops inside the spinal cord. This cyst can grow over time, causing the spinal cord to expand and stretch nerve tissues. Patients may experience severe chronic pain, abnormal sensations and loss of sensation particularly in the extremities. Eventually, the syrinx can cause permanent nerve damage and paralysis.
According to one researcher, syringomyelia is not really a disease unto itself, because it is always the result of something else. By far, the most common cause of syringomyelia is a Chiari malformation. Although there are no strong statistics, about 30%-50% of people with Chiari also have syringomyelia. Syringomyelia can also form after a spinal cord injury (SCI), such as from a car accident or fall; this is called post-traumatic syringomyelia (PTS). PTS can form months or even years after such an injury. Syringomyelia can also be the result of a tumor or mass in the spinal cord as in my case because I was born with a congenital defect of the skull called Chiari Malformation.
Syringomyelia is a very insidious and wretched disease. It is very debilitating or disabling. I can't look up or down nor hold any reading material up higher or lower with my hand, my neck can’t hold my head upright and also my arms cannot hold anything for an extended period so it seems like the only way I could read is if I'm lying in bed and there is a projector that is projected to the ceiling! I use voice activated software because I can't type without being in so much pain. I have to avoid doing a lot of things because I could get hurt. One of them is doing laundry, from putting clothes in the
dryer to folding and most especially hanging clothes because raising and moving my arms, I get
shooting pains from my shoulder to my neck that goes up to my head causing nausea and vomiting. This is because of all the damaged nerves around the root of my arms (Brachial Plexus) and my chest area innervated by the Thoracic spine. When taking a shower, if I use my arms to scrub my body especially my head, I get this difficulty breathing, because my arms get tired, it weakens all the muscles around my chest. If I go to the grocery, I can't pick things myself because of my arms. If I do, I get nauseated and the root of my arms becomes more painful and excruciating. Many times after grocery shopping by myself, I would get very exhausted and have difficulty breathing and usually needed oxygen. After I use my arms to work on something, I get so exhausted and would fall into a deep sleep. Even after reading or writing, concentrating will cause me to fall into a deep sleep. This is caused by occipital neuralgia or damaged nerves around the head and eyes. My eye doctor said there is a possibility that I could get blind. I'm hoping I will be 90 years old by then.
dryer to folding and most especially hanging clothes because raising and moving my arms, I get
shooting pains from my shoulder to my neck that goes up to my head causing nausea and vomiting. This is because of all the damaged nerves around the root of my arms (Brachial Plexus) and my chest area innervated by the Thoracic spine. When taking a shower, if I use my arms to scrub my body especially my head, I get this difficulty breathing, because my arms get tired, it weakens all the muscles around my chest. If I go to the grocery, I can't pick things myself because of my arms. If I do, I get nauseated and the root of my arms becomes more painful and excruciating. Many times after grocery shopping by myself, I would get very exhausted and have difficulty breathing and usually needed oxygen. After I use my arms to work on something, I get so exhausted and would fall into a deep sleep. Even after reading or writing, concentrating will cause me to fall into a deep sleep. This is caused by occipital neuralgia or damaged nerves around the head and eyes. My eye doctor said there is a possibility that I could get blind. I'm hoping I will be 90 years old by then.
I have not been able to sit up for many years now and I tell you it is easier to hear it than to actually go through it. It’s the one thing I dread the most. Imagine if you cannot sit up to eat at the dining table, to write or type or even be in a computer, to ride in a car, to socialize with friends or family, to sit up at church and many others. Watching television is a misery instead of entertainment. To use a computer, it has to be a laptop so I could tilt it to my side and I would lie down on my side in order to use it. Even though I can only use the computer from lying on my left side. The nerves in my head hurt from pressure from a pillow. But it’s better than nothing at all. I used to sew in my spare time, even when I was still working. I used to sew cornices, curtains, pillow cases, couch and table covers. My Mom, being a teacher always taught us many things and she kept herself occupied. From her I learned to crochet and a lot of other things. Now my fingers are weak and painful. I
can’t use them to type without getting in so much pain. My arms are hanging like they have no bones inside. When riding in a car, the worst thing would be to give directions to the driver. I can’t flex my stomach so I lie down and I have the view of the sky so I better not be giving directions because in order to raise my head and neck to look at where I am, I have to flex my stomach and it causes excruciating pain. It must be the one reason why I don’t have the desire to go anywhere anymore. Same thing as when I get in my wheelchair, even though my wheelchair reclines, when it’s reclined too low, it won’t drive. It is extremely painful on my back to use it. Imagine a rebar being forced to bend, that's how I can explain how my spine feels. Walking doesn’t help either; it feels like the root of my leg is pounding on my torso. The best position for my stomach and back is to lie on a flat surface.
When my ankles are bent, I can’t walk for a while. I cannot put any weight on them, if I do by mistake, it causes severe pain. Same as with my wrists, I have to keep them straight the
whole time, as with my arms and legs. It causes so much pain when they stay bent for a few minutes. My everyday migraines went away after my surgery in 2002 but now they‘re back only they’re more intense, it feels like squeezing my brain that comes with numbness and loss of sensation in the back of my head and there’s pressure that goes to my eyes, like pulling them out of their socket. I have dealt with neuropathy, neuralgia, radiculopathy, spondylosis, gastro paresis, not to mention the rest for about 18 years now and it could get frustrating at times especially during the cold season. Also, I get rashes all over especially in my extremities.
Dealing with Central pain is another issue. As with central pain, it could strike any part of the body anytime. While with neuropathy, it’s mostly my stomach, feet and legs, it’s like constant acid burning pain. My torso is the only area that has spasticity though. Having all kinds of diseases related to degenerative changes of the cervical spine like stenosis, kyphosis, and spondylosis can be very painful. One doctor at the spine clinic that I saw in 2007 asked me if the MRI film he was looking at was mine and asked me if I was 42 at that time because it looked like an 85 year old’s neck. Having cervical spondylosis caused me to have incomplete spinal cord injury called Central Cord Syndrome.
As with my stomach, I used to be cautious with what I eat but now everything I take in causes my stomach pain and bloating. I can’t
wear clothing that fit. Anything that would bind would cause my
stomach to bloat or touch can cause me pain. I developed Gastroparesis which is a partial paralysis of the stomach muscles, the walls of my stomach feels like they’re being yanked out and
this include the bladder, ever since college days, it feels like it’s falling out all the time. When I carry something heavy, if I sneeze
or cough, I constantly have to hold that bladder up when I’m walking, working, cleaning, cooking and everything. I had bladder
surgery in 2010, I thought it helped but didn’t last long. I’ve had chronic pain continuously for 18 years now not counting my
younger years because pain came and went. I was only 6y/o when I had my first migraine headache. It didn’t cross my mind that it
could get much worse than what it was! Believe me, I get tired and frustrated at times but I want to set a good example to my son. I
know that some people think that there are others out there that are in much worse condition, but no one will ever know what each one
goes through until they get there. It could be worse and I truly sympathize for those that are in worse condition. In my case it's
difficult to know and understand because I look totally healthy. I don’t have a whole and a tube in my neck or any visible disability for people to easily sympathize, in my case it‘s all invisible.
The dysphagia(difficulty swallowing) comes and goes. Choking and difficulty swallowing becomes severe during the winter months. Also, it could be aggravated by eating carbohydrates and fibrous foods. I’m just thankful that I can now eat, as I wasn’t able to eat solid food before my diagnosis. Then I had to relearn how to eat after my first brain decompression surgery.
wear clothing that fit. Anything that would bind would cause my
stomach to bloat or touch can cause me pain. I developed Gastroparesis which is a partial paralysis of the stomach muscles, the walls of my stomach feels like they’re being yanked out and
this include the bladder, ever since college days, it feels like it’s falling out all the time. When I carry something heavy, if I sneeze
or cough, I constantly have to hold that bladder up when I’m walking, working, cleaning, cooking and everything. I had bladder
surgery in 2010, I thought it helped but didn’t last long. I’ve had chronic pain continuously for 18 years now not counting my
younger years because pain came and went. I was only 6y/o when I had my first migraine headache. It didn’t cross my mind that it
could get much worse than what it was! Believe me, I get tired and frustrated at times but I want to set a good example to my son. I
know that some people think that there are others out there that are in much worse condition, but no one will ever know what each one
goes through until they get there. It could be worse and I truly sympathize for those that are in worse condition. In my case it's
difficult to know and understand because I look totally healthy. I don’t have a whole and a tube in my neck or any visible disability for people to easily sympathize, in my case it‘s all invisible.
The dysphagia(difficulty swallowing) comes and goes. Choking and difficulty swallowing becomes severe during the winter months. Also, it could be aggravated by eating carbohydrates and fibrous foods. I’m just thankful that I can now eat, as I wasn’t able to eat solid food before my diagnosis. Then I had to relearn how to eat after my first brain decompression surgery.
I had eleven surgeries many years prior and I just had three more just the last five years, including an anterior cervical discectomy and fusion at C4-C5 level in 2011, but my condition continues to progress. I feel lost sometimes. For me, I had done everything to get better and have no regrets. I feel exhausted and considering stopping any surgical interventions and even physical therapy, just because I don't have the energy anymore.
I'm ready for whatever happens. I surrender everything to Him and ask for His help everyday. I pray for more patience so I could handle the stress and the pain without getting frustrated. For now, I will just be patient.
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