I have not logged in here for a very long time but I would like to stop by and say hi and update you with what's going on with me.
Someone told me before that I was having a lot of symptoms for someone who has a very small syrinx. My ex-brother-in-law also told my in-laws that I should not be having all of the symptoms that I had before because my syrinx is very small. I want to inform you that the size of the syrinx doesn’t matter. Patients with Chiari I can have symptoms with a large syrinx, small syrinx, or no syrinx. A syrinx is a syrinx and it can cause a lot of pain! Because treatment of syringomyelia can prevent disease progression, but cannot restore neurons lost to the disease, early diagnosis and treatment is the key to maintain optimal function.
For Chiari related syringomyelia, surgery will reduce the syrinx, or at least stop it from growing, up to 80% of the time. However, this does not always translate into a significant improvement in symptoms, and many people still experience some pain - and other symptoms - after surgery. There is currently no way to identify beforehand who will get better with surgery and what symptoms will improve. However, some research has indicated that the longer someone has symptoms before they receive surgery, the less chances they have of a successful outcome. It is important for every patient to discuss the possible surgical outcomes, in detail, with their doctor, so they know what to expect.
I started to have severe symptoms in 1995 but wasn't diagnosed until 2002. Besides having arm pain since I was 9 years old. I had headaches since I was in first grade that was elevated into migraines from high school and in college became so debilitating that went on until the day I was diagnosed! In between were episodes of heart murmur, severe stomach problems, bladder dysfunction, right arm pain and other weird symptoms.
I would like to let you all know what I have been dealing with lately.To eliminate the smaller details, In December of 2010 I started to have spasticity on the left side of my lower back leaving it very stiff and hard like a piece of wood. I also have spasticity in my armpit, legs and bladder that can last for more than thirty minutes. We are probably aware that spasticity is a symptom of paralysis. It seems like a spreading paralysis that started in my lower trunk that went up to my upper back that included the left part of my chest.
Until now I have not heard any of my doctors tell me what’s going on. I am now very weak and I can just feel that quadriplegia is not so far away. I have not been able to sit up for almost two years now. Everywhere I go I needed to lie down, always having the view of the sky when traveling. The left side of my trunk feels like a hard board that could not be flexed and at the same time my stomach is flaccid that the muscles can’t support my body.
Before my surgery in September 2011, I asked Dr. B. if my spasticity on the left side of my torso will change but he said it is my Thoracic area that is causing this and didn’t say much about it.
I am so lost that I don’t know where to go anymore. I think there’s really no available surgical intervention at this time. Even Dr. B of the Chiari Institute may not just be telling me what may hurt me. He advises me to stay positive. There is NO CURE for Syringomyelia and I know I just have to be strong. I’m getting paralyzed slowly and I have to be strong because nothing could be done to stop it.
I have been depressed but I have to get out of the sideline. I have to do something. Get
A myself out of misery. I need to be strong and try harder to stay positive.
For months I have been wanting to see a psychologist at UC Davis. It took me almost 6 months before I was able to get into a therapy session. But it wasn’t the therapy session that I was hoping for. Instead, it was a group therapy. Or what to call it a pain therapy. And was the most disappointing to me was when it was my turn to talk and I started talking about my pain and what I go through on a day-to-day basis, Dr. Gerritz, one of the therapy doctors, said , “Aurora, there is no record of your pain that you are talking about in any of the departments here at UC Davis” so I asked him, do you think Dr. that it’s just me then? Dr. Fishman answered saying what Dr. Gerritz meant was that there are different factors that can trigger pain it could be depression or it could be other things. I didn’t believe what she said but I knew Dr. Gerritz was referring to the depression. I was even more disappointed.
I really wish I walked out of that session as I thought in the beginning.
Conversely, Kev and I were able to travel last Nov. 7-9 to Oregon and around North Coast to Redding, Trinidad, Arcata, Ferndale, Eureka, Crescent City, Brookings Oregon, Ukiah, Lucerne, Clearlake. In Crescent City, we were able to go to the Jedidiah Smith Redwoods. It was another nice short vacation for Kevin and I .
Getting home was another story. I ran out of Cymbalta and I suffered. I was vomiting every day and couldn’t stop. So my caregiver and I decided it’s time to go to the emergency room, and I did. There were many doctors that were involved in my care. My extremities were very weak. The doctors wanted to keep me for another two days at the hospital, but I wanted to go home. We left after almost 2 days and did nothing but rest. I cannot function. My arms feel like they are going to fall off and my buttocks and legs feel like they are going to separate from my body. I cannot use my arms without getting hurt so bad and so nauseous. I had been falling. Dizziness came with the severe pain.
WI sent an e-mail to my specialist in New York. My letter says:
Dr. B,
I was taken to the ER because I had been vomiting for almost three days and can't keep food down.
At the ER, doctors noticed that my extremities were very weak and some of my fingers lack sensation. They ordered an X-ray of my stomach, a CT and an MRI of my cervical spine but
not the head.
There were many doctors involved in my care. I knew they were all doing their best but it's not easy to decide what is the best thing for me right now. It was noted that the MRI doesn't
show a tremendous significance with the previous one from 01/12.
The nausea and vomiting subsided after I was given a dose of Zofran and was sent home with a prescription of the same medicine. The doctors thought of keeping me at the hospital but later released me with an order to come back when symptoms get worse and to follow up with Neurosurgery.
Right now, the nausea is back again especially after using my hands/arms. Washing my body has become very difficult for me especially drying my hair. My buttocks and lower back feels like it's broken into pieces and it's burning making my legs weak causing me to fall now and then. It's a very scary feeling doctor. My chest and arms always feel shaky but numb. I forgot to tell you in my last e-mail that my little fingers on both hands don't have sensation and also the left thumb. The big swollen lymph nodes on my left arm pit that were there
when I was in grade school are back. My upper back, shoulders and chest area are swollen and are tender to the touch and never goes away. The left side of my trunk seems like an inanimate object now.
Like you said, I just try to stay positive and live my life as best as I can. I'm ready with whatever happens as I know He will not leave me alone. I'm not sure if there's anything else that can help but if not it's alright too, as I want to rest now.
Thank you for everything you've done for me.
Sincerely,
Aurora
As for now, my symptoms are scary and I know I won’t last long being ambulatory, I feel it
even though I try to be as positive as I possibly can. There are all the symptoms.
