Loosing the Ability to Breathe

This is another letter to one of my doctors that I want to share.

Hope always prevailed when I thought of your name. The assurance that there is a doctor who is an expert with my predicament has helped over the years.

Despite the fact that writing has been  a real struggle, I need to relay to you some important details that may convince you to believe that I'm in a distressful situation.

When I met with my neurologist in November, it was a comfort to finally hear from him that my spinal cord is what's causing my difficulty breathing. If I was right, he was sympathetic. When I told him that my hands aren't paralyzed yet. He told me it didn't matter. 

Losing the ability to breathe is notoriously torturous than experiencing paralysis itself. Worried, I requested to see my neurologist earlier than our next scheduled January appointment. During our meeting I noticed that his opinion and demeanor changed from the previous meeting. I was disappointed that as if my breathing problem was being undermined. Then he raised his 
hands shaking them and said, "You don't have so and so in your hands". I knew then that he received my medical records from the Chiari Institute.

My experiences even prior to my diagnosis in 2002, in my opinion, has always been caused by my spinal cord. Some people from an SM support group, my in-laws and others don't seem to believe why I have so many symptoms for someone with such a small syrinx. There are those who have syrinxes that go virtually the length of their spine before painful symptoms appear. Unlike me, who suffers from unrelenting pain from such a small syrinx.

My abdominal troubles started in 1995 when we lived in the Bay Area. Initially, it was slight bloating and spasms. In 1996, chest pains and esophageal spasms started. I had endoscopy and full GI work up. Findings were esophageal spasms of unknown etiology. 

We moved to the North Bay in 1998. There, weird, serious troubles began. The stomach pains flared up into a full blown crisis. Unendurable stomach pains were an everyday ordeal. As soon as food touches my stomach the pain was indescribable. When I sat, it would cause my stomach to bloat and be even more painful. It was tormenting! I took a lot of time off work and was called a hypochondriac by coworkers. My insistence to have an exploratory laparoscopy somewhat paid off when doctors found out that the inside of my stomach was full of "spaghetti" like adhesions. Again, from an unknown cause. According to my doctor my uterus was covered with adhesions. They scraped all the adhesions. I had hoped that those were the cause of my pain. I was looking forward 
to some painless days ahead, but my excitement was short lived 
when the pain was back in a few days and then somewhat came back with a vengeance. The pressure and pain in my bladder area that has been there since I was 17 felt like it couldn't hold anymore, that it's finally going to fall. The pain in my buttocks/lower back made my buttocks feel like it was a shattered mirror. (laying on it made it even worse) The nerves from my lower back, down to the 
back of my legs feel like they're being pulled, stretched or they feel short that I had to avoid bending at all times because of the pain, that when I did, my day would be over. I would need to be in bed after. Compression on any part of my back, even the back of my legs would cut circulation especially to my legs and feet. Walking and standing became very limited. I had my first lumbar epidural in 1999 at UCSF Pain Management Clinic.

The severe pressure and pain in my lower abdomen was the reason for my hysterectomy in 1999. I developed an infection from the 
surgery which required me to rest a lot. As I was in bed one day, I 
realized that my back was numb. As if my buttocks were glued to the bed. I felt fear. It seemed that I had been home too long so I was eager to go back to work. On my first day back in the office, I realized I couldn't sit. As if I was sitting on a bowling ball. It wasn't the first time that it happened but the pain on my bottom was excruciating and radiates to my stomach and to the deep muscles of my stomach wall in my mid back. Then the bloating occurred. 

The hysterectomy didn't help at all. The pain came back with more intensity. I had this very deep pain that is out of this world on the left side of my stomach. I must have gone to the ER twenty times in the next two years and doctors would wonder where the pain was coming from. One doctor said there's nothing on the left side of my stomach. Come to find out later they were the deep muscles of my stomach. Later on they will be the the first group of muscles that will get paralyzed.

Again, I was forced to take time off work. We had gone to a number of doctors in the Bay Area that we thought might be able to help me. Each time the diagnosis was pain of unknown etiology.

When we moved to Sacramento in 2001, I had a difficult time finding a new PCP because of my new symptom, dysphagia. No one has a logical diagnosis. One doctor said it's depression, the other asked me if my husband was treating me right, and another said it's just in my head. I found a good doctor at Mercy Hospital, Dr. Bayard Chang who was very caring and wanted to do everything to help me. At that point though, my condition was deteriorating fast. He referred me to a GI. I had another endoscopy and the Gastroenterologist wondered why I was having spasms in my esophagus. Dr. Chang later told me, what was throwing him off was the severe stomach pains. He couldn't make a proper diagnosis.

There were many ER visits from 2001 due to choking and difficulty
breathing. Once, we made pasta at home and during dinner I was 
choking. My son administered first aid but it didn't help. He just received his driver's permit and he drove me to the ER. He was driving erratically since I was getting numb from the neck down. A cop started to follow us until we reached the emergency room. Another time while visiting Santa Cruz, the pharmacy was about a block away from where we were staying so I decided to take a walk in order to pick up my medicine. From breathing the cool air, I found it hard to breathe. I tried to ignore it but by the time I reached the pharmacy, someone called 911 after seeing my condition. Then one Fall season,  Kev was upstairs when I was sweeping up leaves from our porch, from breathing the cold air and using my upper limb was causing me to have difficulty breathing. Next thing I know, my jaw locked to the left side of my face and I was struggling to breathe so Kev had to call for help. One more occurrence and I will stop because I could go on and on to no end. 
My friend came to visit and we went shopping. From using my 
upper limbs moving those hangers while shopping, I started to feel 
really sick and had difficulty breathing so I sat and waited for her. I didn't say anything to her but when we reached home I passed out. Again, we found ourselves at the hospital. Ever since I've been spared from shopping. Thank God! My favorite of all was grocery shopping because I love to cook but I have to avoid that too because just by picking up things from shelves would cause my chest muscles to tighten and be extremely painful, then it's hard to breathe. In 2009 I requested for help because using my arms especially doing laundry, dusting or anything with repetitive motion of the arms causes difficulty breathing.

Going back to 2001, my limbs were too weak at that point, walking was too difficult. Using a cane to walk helped but holding it was a different problem. It hurt my upper limbs and the root of my arms and hands just holding it. Swallowing even the tiniest solid food 
was almost impossible. It felt like it was stuck in my throat for 
days. In my experience, each time I slept on my spine, it was 
worse. I can't even swallow water.

In 1998, my whole back, including my buttocks and back of my legs had been ravaged by Syringomyelia. In 2007 I remember asking my Neurologist if I can have a brace for my torso because I felt that my torso cannot support me. My body just wanted to lie down. It was like someone was pushing me down from my shoulders. When I carried something, the pain shoots up to my neck and the sides of my head. I had ataxia. I remember my Mom told me to walk straight and didn't like the fact that I was limping. I cried because I wished I didn't have to walk. It was terrifying to walk. Each time I took a step, I had this excruciating pain on the left side of my back but no one can tell where the problem was but only I knew. Some people looked at my feet with a puzzled look because I was limping but nothing was obviously  wrong. I saw two local Neurosurgeon who made me walk over and over but couldn't 
figure out why I had a limp. 

I want to add here that as a young girl I always wondered why the muscle in between my right thumb and index finger would swell up whenever I helped my Mom in the kitchen especially with cooking and washing pots and pans. Whenever we traveled I didn't know where to place my right arm/hand because of the pain. I would always slide my hand under my thigh to put pressure and relieve the pain. I also want to add that I struggled in my classes in college. I was always taking remedial classes. I had A's in my practical subjects but where I needed to memorize I failed all the time even if I studied very well. I took Anatomy in the 80's twice and failed twice. I took it again after my decompression surgery thinking I was better but it was another fiasco.

In 2009, I requested help because using my arms would cause difficulty breathing. I did most things lying down. The 
neurosurgeon who saw me at that time ordered 24 hour care for me and ergonomics. He told me to go to the ER if I can't control my BM. I'm sure that wouldn't have taken long if I allowed my 
buttocks to be compacted.

Back in 2004 during my first visit with you, my Karnofsky score was 70. The result of my EMG was an abnormal study. It indicated consistent with but not diagnostic of acute denervation on the right C7 nerve root. I strongly believe that there was no acute denervation due to the fact that I did everything I can not to sleep on my spine since 1998. I can tell you through my experience that even though those nerves aren't getting stimulation from the spinal cord, by avoiding compression, paralysis of those nerves are delayed although the symptoms remain. It doesn't take long for them to get paralyzed if they're compressed because they're like being strangled according to my Cardiologist Dr. Richard Shelton of UCDavis and my brother who is an Orthopedic surgeon. There's 
an enormous difference between sleeping in supine than not when someone has a lesion. Please parse on these facts that I am informing you. They may not be in any medical book but please believe what I'm telling you, doctor. Please consider the fact that 
I'm not the traditional case. If we wait for a positive EMG, it might not happen until I'm already passed. Many years back, when I slept on my spine, my arms were just like dangling, they have no power and compression of my buttocks causes my legs to be more excruciatingly painful than they already are and they have no power. I urinate even more, much harder to control it, Gastroparesis is worse, difficulty swallowing is worse and everything else is worse. At this time, I will not even try to compress the nerves in my back even for just thirty minutes. I've gone through it and will never be ready to go through that pain ever again! It's too much for me to bear. I would rather not live. 

My Neurologist said that there's no difference whether someone 
sleeps on their side or on their spine. Having Syringomyelia, there's a HUGE DIFFERENCE! Last week, I called my Pulmonologist's clinic because I was having difficulty breathing and their advice:DO NOT SLEEP ON YOUR SPINE. 

In 2016, the left side of my chest was already stiff. The fast BPM's I associated it with the fact that I had difficulty breathing not from anxiety. I never had anxiety my whole life. At that time, any emotion caused me to have difficulty breathing, e.g. when our A/C turned off in the summer, immediately I couldn't breathe because my upper torso would heat up, when there are issues in our family, I cannot listen to it or I felt like I could die from not being able to breathe. At this time, I really need your understanding and I'm begging you to PLEASE BELIEVE ME! Both my right and left chest muscles are already stiff and numb. We don't have time to wait for a positive EMG. You would really HELP SAVE MY LIFE BY TELLING MY LOCAL DOCTOR THIS IS MY SPINAL 
CORD ATTACKING ME. Again, I'm telling you I am an anomaly. By not sleeping in my back there is no acute paralysis and the symptoms from my limbs are depressed. The 2004 EMG should have given you a clue. By sleeping on my sides, the spinal cord hasn't been able to paralyze me completely that fast. It is 
paralyzingly the nerves on the sides of my neck. Could that be the phrenic nerve?

I can say it with confidence that if it hadn't been for me sleeping on my side, my limbs, torso and back would have been stiff and paralyzed a long time. I am positive that I have delayed paralysis of my limbs and my whole body from not sleeping in supine position. Although I have all the symptoms of quadriplegia. Starting in 2010, quadriparesis was so intense I felt that I could be paralyzed any day. In the Spring of 2010, paralysis of the muscles on the left side of my torso started. (I'm sure it would have been my whole torso and limbs if I allowed my spine to be compressed) With the help of Physical Therapists, they tried to help the muscles of my torso to relax. There were many therapies that I went to, including hydro therapy but to no avail. In the beginning, the muscles will relax after being massaged, but when I started to walk or sit, they become tensed immediately. The muscles in my torso felt like 
being wrung and twisted. I don't know how to tell you how painful it is to have no sensation but to have agonizing pain. The pain was so severe that I used a rolling pin to press on my back. It was very cruel.

And it is more cruel and more depressing that I cannot convince you to  believe what I'm going through. I have been experiencing paralysis. It makes me very sad and frustrated that you don't believe what I've been telling you just because my EMG was normal. I'm fortunate that I can take high doses of Neurontin and I'm guilty of straining myself but this is not from overdoing, because if I do, why is it that now that I'm sleeping on my right side, my right side is going through paralysis? If you don't believe that this is the result of me avoiding compression of my back, what do you think happened to the abnormal EMG from 2004? It's still here and is lying in wait. I am extremely sad and this is all I think about to a point that it's making me angry. Doctor, this is my life. I could die 
at home from respiratory failure and still no one believes me. My neurologist depends on what you say. My chest muscles are beingparalyzed now and I'm running out of time. I'm losing the ability to breathe. The pain is similar to what happened to the muscles in my torso. It is very very very painful, it is agonizing! There aren't words to describe this pain. Just a touch of my chest is excruciating. My chest area is full of tiny lymph glands that feel swollen and just touching it is excruciating. The muscles under my breasts feel like they're being pulled out from my body. The tightening of the muscles is agonizingly painful!! It makes you want to scream and cry but I have to avoid crying or be emotional because it makes it even harder to breathe. 

The weakness in my torso especially the middle part that radiates to my stomach and makes it difficult to stand up is back. The pain in my back especially the mid back, particularly the buttocks and shoots down the back of my legs is back. It's extremely painful. It 
feels like the nerves in the back of my legs are short. The heart stopping pain on the left side of my stomach is coming back.I will never forget that in 2009 you said that I will experience paralysis in the spring of 2010. You were so accurate that in the summer of 2010 I started going to physical therapies to loosen the tight muscles in my torso. They would become extremely tight and right after PT, they would loosen up. But that was only in the beginning. Right after I would sit or walk, the tightness and pain came back immediately. The muscles felt like they were being wrung and twisted. The pain was unbearable! (I am attaching my picture from 2010 with this email.) Although these muscles didn't just deteriorate overnight. I had ataxia for many years. I went through paralysis with these muscles, quadratus lumborum and erector spinae group. I cannot describe to you the pain that I went through with these muscles. Now they're paralyzed. This is the reason why I lay down a lot. When Kev and I used to travel, I laid down in our flights. When riding in cars my view is the sky. (I 

stopped driving in 2007) Now I lay in bed most of the day. Most things I do it lying down like using the phone, making grocery list, writing, reading, etc.

In 2011, your PA advised me to stop taking Neurontin. I couldn't function without Neurontin. Just the stomach pain alone, I need Neurontin. My torso was being paralyzed at that time. (attached is a picture from 2010) The pain was agonizing. Again, wether you believe it or not, I can assure you that because I refrained from compressing my back that I changed the course of my life. I'm sure I would have had a fully paralyzed back with stiff arms and legs, on a ventilator with tracheotomy and cannot see, talk or hear by now. 

To be in a condition I was in prior to decompression, I feel fortunate that I still have my mobility. I have delayed paralysis by avoiding compression of my nerve roots. I know that you don't believe me and I'm being redundant here. Doctor, you probably think I'm weird but I'm being truthful to you. I know this because it is my experience. I am probably the only person with Syringomyelia that didn't sleep in supine position for 20 years. I am certain it is the reason why there is no acute denervation to my limbs and my paralysis is not acute. But you have to believe me doctor if I tell you it has been paralyzing me from the sides of my body. That was the reason why I told you in my previous email that it's like running away from paralysis. Every part of my body that gets compressed becomes stiff. In November 2017 I had to switch to my right side to sleep since my left side was mostly stiff and numb including my left chest. Even back in 2014, whenever I get emotional it was very difficult to breathe. I struggled from autonomic dysfunction. Whenever I woke up in the summer, I would feel shaky because it is hard to breathe whenever I felt warm. Later, whenever I was having any difficulties I struggle to breathe, I had palpitations and somehow it felt like it was affecting my heart. It was causing anxiety. (A report from my CT with bubble study  was sent to you doctor.) Now, that I have been sleeping on my right side, most of my right side is stiff, predominantly my chest, upper back and shoulder. I'm experiencing paralysis on my chest muscles. It's extremely difficult to breathe without Gabapentin blocking the weakness. My right leg especially my thigh is spastic. I'm loosing power in my right leg including my right arm and hands. In order to use my right arm, I have to squeeze my right pectoral muscle because it is too painful.

I must tell you that I have temporarily eluded complete paralysis by not sleeping on my spine but I couldn't get away forever. Despite what I had done, this illness still has been trying to attack me in every angle. Sometimes I just want to give up and just sleep on my back but I will never do it unless I have no other choice. I remember my primary doctor in 2010 told me that if I stopped then that would be it. Now it's paralyzing both sides of my body. To sleep on my spine at this point is like committing suicide. It doesn't take long, when I lay on my back, it shuts off my breathing and so many other symptoms that I will never be ready to experience. Please doctor, don't think that it's just anxiety. I never had anxiety my whole life but when I have difficulty breathing, it's really scary and I get anxious. Although I haven't had a bad episode of tachycardia ever since I switched to sleeping on my right side. I was talking to my caregiver a few days ago not realizing my back was compressed on the reclined bed. I must have been in that position for about 30 min or so. Then I felt my back burning, I was struggling to breathe, the root of my arms from the back to my armpits and chest were numb and tight and the pain was indescribable, particularly the armpit with the swollen lymph nodes. My whole upper torso felt paralyzed and I have this symptom that I cannot describe making me realize why I had avoided compressing my back for decades. It is something I would never want to even encounter lest live with. I thought, I would rather die than live with those symptoms. 

In 2011 doctor, after the ACDF surgery I had with you, I found myself screaming when I woke up at the recovery room. I wanted to be given pain medicine immediately because I had unbearable pain! It happens everytime I slept in my back.

What I had done to alleviate my pain for two decades has cost me my credibility. You're the only doctor that I can run to for help, but because of what I did, I feel that you don't believe me. It makes me very sad. There's nothing else I can think about but this. I am frustrated. My EMG's are turning out normal I think because of what I did. But the symptoms are still here with me. I was diagnosed with radiculopathy many times by different doctors over the years. I had an abnormal EMG in 2004 but without acute denervation. The only evidence I have. If I eschewed compression of those nerves the damage could not have gone away. It can only alleviate the symptom unless we believe in miracles and a miracle happened and they all healed! No they didn't doctor. They are still very damaged and they're just lying in wait. Also my medications may be affecting the results of my EMG. Before taking my medicine in the morning, I feel all the symptoms. All the heart stopping pain like my stomach with included 4-5 times morning diarrhea , I can feel the numbness, weakness and stiffness of my chest muscles, it feels like they're going to collapse with dyspnea included, the numbness and seeeaaariiing pain in my feet that makes me want to scream, many other pain and in particular weakness and pain in the arm that shoots up to the sides of my neck and side of my head just to bring up my cup to drink. I have numbness and severe weakness from the root of my arms to my whole chest area down to my hands. All my fingers are extremely painful. Most of them have no more feelings. I do not understand at all how these symptoms are not showing on EMG. Compared to 2004, I have much more severe symptoms now. You can't say I will not be paralyzed after telling me I will experience paralysis in the Spring of 2010 because I have been experiencing paralysis only at a very slow pace. I can assure you that if I had been sleeping on my spine, paralysis would have been complete in no time. My spinal cord has been destroying me since 1995 or shall I say since I was a child. To add to that I have been fighting blindness, difficulty swallowing and talking. You may not believe it but I must be one of the worst cases of someone with such a small syrinx but with so much nerve damage and pain. I couldn't imagine how it would be like if I just allowed my back to be compressed. Even when riding in a car now I have to lay on my side.  For five years now, I haven't gone anywhere but to doctor's offices. 

In 1998, Syringomyelia has ravaged my whole back that whenever I slept on it I would not be able to move by myself. When my buttocks was compressed, it shuts the circulation on my legs. Even sitting  shuts the circulation to my legs. That was the beginning of why I had to avoid sleeping on my back. Whenever I'm in bed and I find it difficult to breathe,  I try to recline but when my back is against the bed, it shuts my breathing even more. Then if I tried to get up and sat on the bed, my bottom feels like it's skin and bones, like I'm sitting on a very hard surface and it shuts the circulation to my legs and my feet. My whole back, notably the lower back and back of my legs are extraordinarily painful. This is an old symptom from 1998 that was the reason for my lumbar epidural at that time but same symptom came back just about a week and a half ago. 

Please tell me doctor why only parts of my left side was paralyzed when I was sleeping on my left side and now that I have been sleeping on my right side since Nov 2017, my right side is being paralyzed?

If all quadriplegics have or HAVE HAD some kind of hand and finger dysfunction, isn't it enough that my EMG in 2004 showed an abnormal study? Isn't that considered that I HAVE HAD some kind of finger dysfunction? I had finger dysfunction before 1998 but from not sleeping on my spine, the symptoms were diminished but they never healed. In 2009 you said, "You will start to experience paralysis in the Spring of 2010. In 2011, you told me that you didn't think I was going to be paralyzed. Doctor, my body has been ravaged by Syringomyelia since 1998, it doesn't suddenly just go away. I don't think that you should just focus on my EMG now to use as a basis that I won't get paralyzed because I am an anomaly. I did not sleep on my spine for twenty years and that somewhat delayed paralysis but if I decide to sleep on my back now, I can assure you that it will happen in no time. I am getting paralyzed! It is attacking me from every angle. Every part of my body that gets compressed becomes numb. The root of my left thumb, I can't tell where the pain is coming from. Sometimes it's like it's coming from the wrist or the root of the thumb. Then both right and left small and ring fingers are stiff and extremely painful. Also they are very painful to the touch! Shaking them after washing my hands feel like they're going to fall off. Some of my toes feel like they're alive and burning. It's hard to explain the constant pain in some of my toes. It's like a constant squeezing pain or burning pain.

I have been fighting paralysis. I'm loosing the ability to breathe, doctor. This is my life. Please, doctor. I beg you to believe what I'm telling you. I'm not crazy or a stupid person and certainly not hallucinating. You were sent copies of CT's of my chest. So there's air trapping, an indication of small airways disease that is caused by heavy smoking but I'm not even a smoker. My muscles under my breasts are being attacked and are extremely, extremely painful!! It even gives me spasms to my breasts to the tip of my nipples. It's embarrassing but I have to let you know. The pain makes me want to cry!! I don't know what to do, my right pectorales major muscle is being attacked and cannot continue to sleep on my right side. The left one is already stiff and I couldn't go back and sleep on my left side. 

I saw a new Ophthalmologist  a few days ago and explained to him that I was diagnosed with C2 neuralgia in 2007. I had eye pain since I was 14yo. I couldn't put anything on my face e.g. cream, powder or make up since I was 18. Anything applied on my face would hurt my eyes, turned it red and then I would have very bad migraine. I told him that now, each time the back of my head is compressed, the pain in my eyes gets worse and my vision gets blurry. I asked him what his recommendation was. He responded that he cannot recommend but his common sense tells him not to sleep on the back of the head.

A week and a half ago, pain on the left side of my left hand started. I have been avoiding the use of my left hand because I had been dropping things, breaking plates and glasses, etc. The pain is unreal.

Right now, I have no sensation in most of my fingers, feet and toes although they're extremely painful. Most of their knuckles have arthritis in them. I have spasms in some of my toes. My arms are now very weak especially without medication. The muscles on both sides of my neck are very stiff and numb.  My back feels like it has no skin. My back pain is extremely painful like acid is poured all over it and it's burning. My buttocks and back of my legs are extremely painful. (An old symptom that just came back) It feels like I have a lump or a small ball in my throat when swallowing, like having a wound in the front area of my throat that gets irritated when touched by food especially when spicy, when cold, when breathing in cold air, laughing, etc. I cough a lot. I can feel the extreme weakness in my throat and chest area that goes down my arms. I get tired talking. I struggle from breathing especially when there's stress. 

Difficult Years II

Another new year, I can only hope and pray that this new year will be a much better year for the whole world. A healthier year to the ones that are sick. A consolation and solace for the ones that are suffering, included are the children that are being abused and neglected.

It's been very long since my last entry. As much as I wanted to write it's been almost impossible. When I concentrate I tend to fall asleep and my eyes aren't just too sensitive to light but are very painful when I use them.

The past couple of years were horrific. There were instances where my head felt like spinning. At times it's going to explode, it felt like. Too difficult physically, financially and mentally. I wish the torture would just end. I feel tired.

Kevin, my partner of almost nine years went home to Santa Cruz when my son came back from the military. He is a Geophysicist with an MBA who was a very hard worker. He planned to retire early but at 52 couldn't work any longer and then he was diagnosed 
with a nervous system disorder. He was a triathlete, a surfer and a hard core cyclist. Now he is disabled. For a while he would only communicate when he was feeling okey but now I know he's not doing well because he doesn't answer my emails anymore. He has become a recluse. It's very frustrating that I cannot do anything to help him. I wish to visit him but I cannot so I can only pray for him. On the other hand, it hasn't been easy being a Mom to my son that came back from the military. He is doing his best especially in school. But him having to deal with anxiety, depression, etc. is taking a toll on both of us. Sometimes there are days where I don't have anything left but then my faith keeps me going. These are 
truly the most difficult years.

On a good note, I have cut down on all my medications. I took
3600 mg Gabapentin for about 14 years, now I'm down to 600 
mg/3x day. For almost 15 yrs I was on two tablets of Ultram 3x per day, now I totally stopped. It was horrible the first night. I was in agony, but it got better the next. I was on 10.5 mg Baclofen 3x per day, now it's 10 mg once a day. For spasticity, I'm now using 
peppermint oil as rub for anything spastic. It works great. I was on 
20 mg Propanolol 3x a day, now twice a day. Two 20 mg Cymbalta once a day, now I only take one. I stopped taking Omeprazole. I'm going to try to cut down on all of my meds. After two months on whole foods plant based diet, I was able to cut down on my medicine and I lost most of the swelling in my body. I can now wear my old skinny clothes! I would still get a big tummy once in a while especially because I can't seem to drop the Cheetos,lol. With having Gastroparesis and neuropathy it is inevitable. The distended stomach will always be a part of me. I have no choice but to wear 
comfortable clothing whenever I look pregnant.

I started degenerating in August of 2016 but it's hard for others to 
believe because I look normal. I don't have visible atrophy. I have 
atrophy in my right arm and thighs but it's insignificant. Although I 
have a lot of pain in my right hand with constant swelling, there's no atrophy. I'm not blind albeit my eyes are sunken, like Enophthalmia. I use a lot of prescription eye drops. I constantly use ointment to get them to open. I just had punctal plugs or tear duct 
plugs put in on the upper lid last December. The lower plugs were 
placed about a year prior. They help a little with the dryness for a short duration. My eye doctor always has something for me to buy to help with the extreme dryness. I do appreciate her help but I don't buy them for many reasons, one they're not covered by insurance, when you're on a fixed income, you can't afford anything. Another reason, it may alleviate with the discomfort but it's not going to treat it and anything for the eyes are pricey. I used 
to buy everything she tells me that can help but at this point I know
we can't change things. Except for the ointment because it helps 
with the pain and so I can open my eyes! My eyelids are now 
wrinkly including my forehead. It's funny, my Mom didn't even get wrinkly until she was 85. I feel so ugly especially having these 
scarred and bumped lips. I have rashes in different parts of my 
body that's been there for three-four years. I didn't quite understand 
in the beginning why I have a permanent rash in the back of my right ear but I'll explain later. Both my upper arms are full of 
rashes. All of these rashes would show up now and then prior to 
2014 but would disappear after treatment although in 2014 they all 
came out at the same time and stayed permanently. That was the
year I started to swell up also.

In order to explain something I have to go back almost 19 years ago. In June 1999, I was recovering from hysterectomy (an 
unnecessary surgery), I felt this indescribable weird scary sensation 
in my buttocks and lower back that travelled to my stomach. It 
wasn't the first time that I felt it but this one was more pronounced. 
When I tried to get up I couldn't move, not even a slight bending of 
my legs. I waited for Bill, my ex-husband to get me out of bed. For days I could hardly walk. Ever since that incident I tried my best to avoid sleeping in supine position. Although at that time I had so 
many unexplained symptoms and pain that felt like hell. I couldn't
stand and walk too long, couldn't sit. The nerves in the back of my legs felt like they were short or being stretched out, etc,etc. I'm sure I've mentioned that in my other entries. Since my right side is 
worse than my left, I tried sleeping on my left side most of the 
time. I know how miserable I become after sleeping in my back so 
it made more sense for me to try and never sleep in supine.

So fast forward in 2016. Almost the end of August when one morning I scrubbed the floor with my left foot and my heart started 
racing. I was frightened. My feet were cold as ice almost no feeling. I waited for my caregiver to come to give my feet a 
massage because I couldn't get them warm under the heating pad. 
She must be late, I thought, let me call her. But I can't locate my 
phone. As I walked upstairs my heart started racing very fast. I wanted to stop but I have to look for the phone. So as I was looking for the phone my heart was racing faster and faster. I must've gone upstairs three times. But when I came down I could hardly breathe 
I felt like I was going to pass out. My chest was painful and tight like I was going to have a heart attack. So I went outside and flagged down a  guy driving and asked him to call 911 for me. He was so kind that he waited for the paramedics to arrive.
In the ambulance I was scared. I never felt so much pain and 
tightness in my chest. I heard the attending medic tell the driver to 
upgrade when I told him about it. I could feel the ambulance go 
faster and I could hear the siren. Then the medic was talking to a 
doctor asking him what to do with me because my BPM was at 180, blood pressure was 220/100. (I have autonomic dysreflexia) I was afraid for my life but I tried very hard to calm down and keep 
my presence of mind. When the medic asked me where the pain was I told him it was in my chest at first. The next he asked where the pain was and told him it was in my  back. He came to my aid and he said to look at him in the eye and started to give me instructions. I knew then I was in deep trouble. I thought of my son and said a quick prayer. I felt weird sensations, my chest area felt warm and very tight and he administered some kind of medicine that went under my tongue. After a few minutes gave me another. Then I felt my back opening up and  I felt a relief. My God, another ordeal, I thought. Similar episodes happened many times between 
August 2016 through April 2017. It was scary and I really did 
prepare for my funeral during that time.

Come to find out I was really degenerating but since I slept on my left side for 19 years so only my left foot turned numb as opposed to if I had been sleeping on my back both my feet would have
turned numb and I'm pretty sure I would have been paralyzed from 
compression of the  nerve So my Chiari doctor said that I am 
degenerating and that I have anxiety. But the last time that it 
happened and I went to the ER at Mercy Hospital instead of UCDavis, the neurologist said there's nothing wrong with her heart, check her foot. They did an X-ray of my foot and they found a stress fracture on my left heel. All I know is that I had been walking on my heel because I couldn't put my foot on the ground. So I was given a walking shoe (very fashionable according to Regia, my friend, sarcastically of course) and I was told to rest my foot. Nothing new I thought, I've been doing that a long time and I'm so tired of it. I discovered that by using the walking shoe it  allowed me to walk without my heart beat going crazy. I modified 
the shoe to where I can wear it  outside/inside the house. Knowing myself, it's not easy to tie me down in bed, I still did things. My son said even in my death bed I'd still be cleaning. (but my Chiari 
doctor said people like me takes a long time to get paralyzed) I used the ugly walking shoe for a year and four months but it was 
worth it because not only the fracture but the numbness on my left 
foot got better and I can now wear normal shoes without my heart 
complaining. It helped that I switched to sleeping on my right side which is my bad side and yes especially with Syringomyelia there's always a trade off. It is indeed a wretched disease. I knew I cannot continue to sleep on my left side because everything was stiff including my shoulder, chest, side of my head, side of my legs and 
foot. My left ear constantly drips with fluid.

Though I'm thankful and happy that I made it until now. I don't know what my future is like but normally what I know is that most 
people with Syringomyelia, when they start degenerating, within six months to a year they're paralyzed. Everyone tells me including 
paramedics that had helped me over the years told me that avoiding sleeping in your back helps a lot. I'm very sure of that.

I had no choice but to switch to my right side in terms of sleeping and after about three and a half months my right leg became very 
weak because I have sciatic nerve problem there, my right arm and 
hand are very weak too, I had the problem since I was 9years old 
due to C7 nerve root. The nerves and muscles on both sides of my neck are being destroyed or attacked right now. They're now very  stiff and when I turn my neck they make this sound like they're going to snap or break. I feel like  having a big knife on each  side of my neck. It's extremely painful. On the other hand I'm now 
loosing my hearing on my right ear. The right side of my head feels like it's cemented or like a big play dough stuck on my head but 
inside my ear is like a cave with boulders sometimes bumping into each other, sometimes it feels like it's full of water. My PCP said there's water inside it. In the beginning I heard every noise coming from the street. Everything was magnified. Now the hole is closing but I can hear my heart beat so clearly in my right ear. It's like my heart has been placed inside. I am scheduled to see an Audiologist on the 26th of this month.

If I hadn't avoided compression of my back I'm sure  I would have been paralyzed from the neck down, (C1,C2,C3) be on a respirator, tube fed and totally bed ridden. I can say this because it only takes one night of sleeping in my back at this point and I would experience all of these symptoms for almost a week that I have to avoid it at all costs. Even sitting reclined at the doctors office with 
my back on the chair or riding in a car with my back compressed in the car seat.  The next day it's almost impossible to breathe, my 
throat feels closed it's hard to swallow my own saliva, my right leg 
would get very stiff and both my feet will be so numb that you can't put them on the floor. 

Earlier in my entry I mentioned about being excited about cutting down on my medication and believe me I truly was but when I 
realized that feeling all this excruciating pain, numbness, weakness and difficulty swallowing, breathing, etc., all magnified is going to put me in depression and I don't like that at all. But now it's too late because I agreed with my doctor and because all clinics are cutting down on medications including those that really need the most, 
now I can't get a refill. Now here I am more lying down days again. I have a lot of chest and arm pain because I just cooked a bunch of 
food yesterday. Yes, believe me, I say I'm in pain but I do things anyway. I'm pretty hard headed and I hate myself for that but
I can't change it.

 Another challenge for me right now is to find a primary doctor that can sympathize with me and know about my condition. My doctor
 moved to San Francisco and I've been bouncing from one doctor to another lately. I'm sure a lot of Chiari/Syringomyelia sufferers are so familiar with this. My new PCP asked me, " Are you sure you're loosing your hearing because your ear canal just has water but it  looks fine to me?" It brings me back to the days before mydiagnosis. My previous PCP said no one is worried about you getting paralyzed. I'm sure it's because I slept on my sides for 19 years but doctors don't realize I still have the symptoms. I still feel like I have been running away from paralysis especially the last 3 
years. It's difficult enough to deal with the symptoms but it's even more difficult that none of the local doctor's don't take me seriously. It's very frustrating to have this invisible disease. It's hard 
to find someone that can sympathize with you. I find it very sad. 

Because Syringomyelia cannot paralyze my neck from the back, it has attacked the muscles and nerves on the side of my neck since I sleep on my sides. They're now very stiff and they make this cracking sound when I turn my neck. The skin on my upper chest 
area is being stretched and my chest has no more sensation. The root of my arms or the whole area of the brachial plexus feels like it's being ripped out of my body including my arm pits. Whenever my upper back is compressed I have a hard time using my arm and when my lower back is compressed, I cannot put my feet on the ground.

I may have delayed paralysis but I'm sure that I cannot get away. I have all the symptoms. Not to be negative but just being realistic.  
Syringomyelia is after me, it's not going to let me go.

Difficult Years

It maybe difficult to write but I believe that I owe it to others who are suffering or loved ones of sufferers to share the details of my condition in order for them to understand more about the disease. We can't all suffer quietly. We need to tell the world we are here and let them know what we're going through. I'm tired of suffering this invisible disease where only I/or maybe God knows what's going on with me. Hardly anyone can sympathize with you because you look normal as can be. You're screaming in pain at the hospital and others look at you like you're exaggerating. Even your care provider thinks you're making things up or look at you like you're crazy. 

I started this entry almost a year ago but never finished it. Using my eyes and my fingers is almost impossible but there's so much I want to share.

Syringomyelia does attack you at will, like one sufferer said, it leaves nothing. It penetrates every part of your body. It had gone to my tongue, jaw, nose, ears, skin in my head and forehead, my eyes and lips.

I don't remember if I had mentioned that in 2014 my body almost doubled in size. My legs became bigger and almost every part of my body. (I had to change my whole wardrobe from a size 4 to size 10!) It has been depressing for me. My right nostril has been swollen since making my nose look even bigger. My forehead down to the lids of my eyes are wrinkly and so dry. The lids drooped and are covering most of my eyes that my Ophthalmologist recommended that I have surgery but I refused. It worked out because now my eyeballs are sunken like having Enophthalmia. It's always horrifying knowing that my eyes 
will just stop functioning anytime. My eye doctor said to call her even at midnight when it happens. Her and I are just doing 
everything we can to prolong their life. 


The pain in my eyes is very intense. It's searing, like slashing with blade. It's agonizing pain. I always say, it feels like my eyeballs are being pulled out of their socket. I can't open them without eye ointment. Applying eye ointment makes everything blurry. Try and 
picture that. With grease all around it. So sexy! In addition to wearing a neck brace. Hmmm so hot!lol.

But what are you going to do? Just live with it. It's alright. It's not too bad at all. Keep praying and make yourself believe that everything will be better. It always helps. 

My Letter To Those Who Are Not Aware of Central Pain

Central pain syndrome (CPS) is a neurological disorder consisting of agonizing pain signals of many differing types all at once: burning, acid burning, freezing, shocking, aching, pins and needles, lacerating, crushing, tearing, stabbing, electric shock and spasticity. It has been characterized as the worst pain known to man. It is caused by damage to or injury of the Central Nervous System (CNS), which includes the brain, brainstem and spinal cord; its causes include but are not limited to, stroke, MS, epilepsy, Syringomyelia, head & spinal cord injuries, aneurysms, tumors and infections. It is estimated that millions of people in the U.S. suffer from CPS. It is aggressive, never ending and disabling, making normal life immensely painful and incredibly difficult. The medications and treatments used to fight it are very limited and highly ineffective. There is presently no cure.

In my case in particular, I was born with Chiari Malformation. With Chiari Malformation symptoms alone there's a lot of pain I have to endure including paresthesias and dysesthesias. Having a 
congenital disease that wasn't detected for 38 years it became more complicated that my own Cerebrospinal fluid was redirected to my spinal cord destroying it from inside out. I have a cyst or in Greek term is called "syrinx" in my spinal cord from C3-T7. That's  like a foot long. This condition is called Syringomyelia (from the word syrinx) which is very debilitating and it comes with even more complications and extreme pain and can cause paralysis. Some of the complications I suffer from are incomplete Spinal Cord Injury or Central Cord Syndrome, Central Pain Syndrome, Neuropathy, Autonomic Dysreflexia, Autonomic Dysfunction, Myalgia and Myositis, Radiculopathy, Cervical Spondylosis,Myelopathy, Spinal 
Stenosis, Brachial Neuritis, Gastroparesis, and Cervical-Thoracic-
Lumbar-Sacral Neuritis. 

This malady causes a different degree of pain unlike the pain that we all know normally. This pain is out of this world! I want people to know that I'm not weak and most of all I'm not making up and I'm not exaggerating my pain. It is real! At any given time I can have lacerating, crushing, stabbing, electric shock, tearing, burning, freezing and spastic pain. It is agonizing and when others ask how I'm doing, it is very difficult to smile and say I'm doing fine. At this point where I had been going through this pain for 18 years there are days where I just want to be in my room and not talk because everything that comes out of my mouth is negative if I had to say something at that point. Some people with Syringomyelia at age 50 prefer to be euthanized because they have endured too much pain.

The lower part of my legs down to my feet is painful 24 hours a 

day. I have feet that feels like they have no skin. Then acid was 
poured into them and the acid is constantly bubbling all over my 
feet. The pain in my feet is very intense, searing, piercing, blade-like slashing, pins and needles and it's agonizing. They're always cold as ice but covering them with blanket or a hundred sheets doesn't help, instead the weight of the blanket makes the pain 
worse. I keep a heating pad for my feet that is on for 24 hours. I have legs that feel like they have no skin in them and just a breath of air can trigger a lot of pain. I have hands that feel like they were hammered flat with the meat exposed just dangling, with violent raging pain. I have arms that feel like they're being pulled out of their roots, just dangling with no strength in them but are very heavy with their bones sticking out exposed with constant pain of different kinds including numbness, tingling, pins and needles, skin is being peeled out and is on fire. My whole back including my chest and shoulders are hard but spastic, feels like they're 
cemented but the pain is very deep that comes with numbness,lacerating, pins and needles that makes me feel nauseated. Not to mention the severe itchiness that causes my skin 
to peel from scratching. I have long ignored and forgotten about my 
stomach which becomes painful and bloated with just a touch  of clothing. I used to watch what I ate because it might hurt it and be bloated but later I decided to stop caring about what I ate because each time I swallowed food it would get bloated like I'm nine months pregnant and painful and would cause a lot of trouble for my stomach. Then people think I'm fat because of the bloating and edema. But I stopped caring about what people said. Many years ago I had to go to the backyard so I could scream because of 
the agonizing pain. I couldn't even describe it. I have buttocks that feel like it's broken into pieces and they're on fire. I have a neck that is constantly being ripped apart, their bones crushing with each other, lacerating and all kinds of pain that I just have to learn to ignore it. I have a throat  that always closes when I swallow that it feels like bone pushing on a bone each time I swallow. I have eyes that  are slowly getting blind, with unbelievable pain like slashing 
the whole surrounding with blade, the eyeball being pulled out of their socket constantly that I need to lubricate them almost every 20-30 minutes to try to soothe the pain. Because of damage to most of my Cranial nerves that the skin of my head, forehead and back of my ears are itchy like they have skin disease. My forehead that used to be shiny and fine now became wrinkly. Different cranial nerves control different parts of the head. Damage to Cranial nerve II or Optic nerve which connects the eyes to the brain is the reason for my eye problem. My right nostril has been swollen for almost four years now. I believe that's from the Maxillary nerve. The damage to Hypoglossal and Trigeminal nerve caused my tongue to atrophy. They quiver and wake me up at night. All of my teeth hurts because of the damage to Maxillary nerve, a second division of the Trigeminal Nerve which is Cranial nerve V. I can go on and on but I won't because I can't stop. 

This is not to complain. I want people to be aware. I've been fighting this battle for 18 years. Although not too many can be sympathetic because it's all invisible. Only God knows what I suffer everyday. One person told me I look normal  and why do I need help? Some say I should not complain because I can still move. Sometimes you have to forgive me when without thinking I tell you what I'm going through. I think it's easy to complain because it's constant. And sometimes because people don't see 
what's wrong that I tend to let them know. Which is not good.

I want people to understand that with a C3 injury, a person looses the use of their trunk, arms and legs and becomes bedridden. I have been fighting paralysis for years now. My prognosis was I would 

have been paralyzed by 2010. I lost the use of my trunk and my stomach that the easiest and most comfortable position is to lie 
down. Not because I am lazy that I always want to lie down.

Please understand that I just look normal on the outside, inside I'm suffering from debilitating pain and a lot of dysfunction. If you saw me being able to do one thing it doesn't mean that I can do it again. It's not always the case. It might take me another year to be able to do it again. It could take months or even a year for my muscles to recuperate after using them. I take a lot of medication to block my pain in order to help me function. 

I depend on you ~ people who are able bodied ~ for many things. 

But most importantly, I need you to understand me.

I Feel So Much Fear But Still Hopeful

10/12/14

It has been a year since I gave up gardening. I hope that I will never have to give up cooking! The only thing that's left that I love to do. A neighbor of mine told me he goes to yoga classes at  the clubhouse and when I was scooting with my dog, I became very emotional. I always feel left out whenever I hear that subject. I used to cry when I see someone just running. It took many years to get over that. I felt that if I was normal, I'm sure I would have looked better if I had still been exercising at the gym like I did most of my life until 2007. I miss my yoga and body sculpting classes!!!! Now there's not even a trace of the toned arms anymore!

Lately, I had been too weak to do anything. I try to recuperate as much as possible. To lie in bed after a busy day is restful but to lie in bed because that's all you can do is tiring. It causes even more numbness and stiffness in your limbs and torso. It can easily cause depression, sadness, anxiety and everything that would cause melancholy. Unfortunately, you don't have any choice but to beat it, there's no other way. I should still hope that one day I would be able to do things again. It maybe impossible but it sure helps to make the day better. (Just to put myself in a better mood) lol.

The Spinal Cord is connected to the brain and is about the diameter of a human finger. From the brain the spinal cord descends down the middle of the back and is surrounded and protected by the bony vertebral column. The spinal cord is surrounded by a clear fluid called Cerebral Spinal Fluid (CSF), that acts as a cushion to protect the delicate nerve tissues against damage from banging against the inside of the vertebrae.

The anatomy of the spinal cord itself, consists of millions of nerve fibres which transmit electrical information to and from the limbs, trunk and organs of the body, back to and from the brain. The nerves which exit the spinal cord in the upper section, the neck, control breathing and the arms. The nerves which exit the spinal cord in the mid and lower section of the back, control the trunk and legs, as well as bladder, bowel and sexual function.

The nerves which carry information from the brain to muscles are called Motor Neurones. The nerves which carry information from the body back to the brain are called Sensory Neurones. Sensory Neurones carry information to the brain about skin temperature, touch, pain and joint position.

The brain and spinal cord are referred to as the Central Nervous System, whilst the nerves connecting the spinal cord to the body are referred to as the Peripheral Nervous System.

It is important for us that are suffering from spinal cord diseases, injuries or any issues of the spinal cord to know and learn about the function and levels of the spinal cord and it's effects on us. That way, we have more understanding of the pain that we go through. 

Depending on which level of the spinal cord our syrinx is, if we know the function for each level and what nerves it innervates, we will have more understanding of our pain.

Nerves called the spinal nerves or nerve roots, branch off the spinal cord and pass out through a hole in each of the vertebrae called the Foramen. These nerves carry information from the spinal cord to the rest of the body, and from the body back up to the brain.

There are four main groups of spinal nerves, which exit different levels of the spinal cord.

These are in descending order down the vertebral column:

Cervical Nerves "C" : (nerves in the neck) supply movement and feeling to the arms, neck and upper trunk. Also control breathing.
Thoracic Nerves "T" : (nerves in the upper back) supply the trunk and abdomen.
Lumbar Nerves "L" and Sacral Nerves "S" : (nerves in the lower back) supply the legs, the bladder, bowel and sexual organs.

 A person with a syrinx from C1-C4 has the most complications. This is what is referred to as Syringobulbia. This refers to the involvement of the hindbrain. With the involvement of the hindbrain, the degeneration of the disease is faster. There is almost no remission.This is the nature of the disease.

Levels of injury and its effects:

High Cervical nerves C1-C4 - This level has the most complications. Affects arms, hands, trunk and
legs.  Difficulty breathing, controlling bowel and bladder  movements. Ability to speak is sometimes reduced. May not be able to drive a car. And because it affects the trunk, some end up being bedridden. A person might require assistance with daily living.

Low Cervical nerves C5-C8 - Corresponding nerves controls arms and hands.

C5- May affect wrists, hands, trunk and legs. May have breathing difficulty. May need assistance with activities of daily living. 

Not yet, Bedridden?

The last three years had been devastating for me. Before those three years, despite the pain I was going through, I was this happy, hard-working individual. I went through tough times now and then but generally, I was happy. It brought me tears of joy when I inspired others. I was energized when I was around people. I remember just being able to drive or to scoot to the nearest grocery store about less than a mile away from my house to pick up a few things that I can make for dinner used to make my day ! Meeting an old co-worker for coffee even for just a few minutes or just seeing friends anywhere and have a little chat with them was magic! I brought home with it a big smile on my face that I carried for days. Also it made me feel great when I was able to do things that I want to do. I felt so proud of myself that besides having an illness that is so debilitating, I had the energy to do a few things I want to do. I always felt lucky. And there was gardening then, it was therapeutic.

I question myself now after about three years later why I haven't felt that way for a long while?  I thought that I must have been more courageous if I had not lost the use of my trunk. During the first few months that this happened, I was oblivious. But when the situation became weirder as in needing to lie down during flights or laying down during car rides., I began to feel more gray. Especially when in November 2013 when an old symptom from 15 years ago came back, only it was more pronounced that it became even more difficult to be positive.

The pain in my buttocks that goes down my legs has always been there since 1998, but after a couple of  lumbar injections many years ago, it was alleviated. But late last year, it came back and it was more magnified and widespread. It's attacking all of my lower extremity, including spasms and pain in my bladder, along the femoral triangle. The pain is excruciating. It's like melting my legs. It is difficult to stand up. I felt like there's no fluids running down my lower extremity. After a visit with the Gynecologist, he prescribed Premarin. I felt this problem a while back, sexual dysfunction. Now I need fluids  in all the orifice of my body. My Ophthalmologist said there's a possibility that I could get blind. I have three different eye drops for my eyes and an ointment. I also have drops for my ears. Also, it's hard to sleep  not only from positioning but from itchiness in different parts of my body. I have rashes everywhere especially in the back of my neck and extremities. The back of my head where I had a couple of surgeries also itches a lot. Grr..

It became more apparent that I'm now loosing the use of my legs. From being dropped off by my partner wherever we went to not wanting to go anywhere. I'm pretty sure he's disappointed. I felt stuck at home, in my bed, even avoiding to go to my doctors appointments. A couple of months ago, my bedroom was moved downstairs to make it more convenient for me. I was in it all day and not wanting to be anywhere but my bed because the degree of pain that I had to deal with when I stood up and so I avoided going places. There's not much physical activity I can do. There's not much you can do when you're in bed. It's depressing, I think. I feel rebellious at times. I don't know. It's another chapter in my life. Maybe one day I would be more accepting of my situation. Like when I had to stop working, it took me years to accept so maybe this will take years also.

Looking out from my bedroom window this morning, I was admiring the birds playing in my neighbor's roof. Maybe this is the beginning,lol! Starting to appreciate things that you see and do even if things don't go your way. I guess this is the way it has to be since we definitely don't have control over our fate, health wise especially.