Sunday, November 30, 2008

Thanksgiving update

Well, I had a blood test last week, and the nurse called to tell me that I need to discuss the results with the doctor (my general practitioner, Dr. Ghanshyam Shah). I'm assuming that he also discovered the hyperparathyroidism. I have an appointment with him scheduled for this Tuesday. Maybe that means I will get some credible information about a week earlier than expected. I'm still, of course, waiting for my appointment with Dr. Pauline Camacho, the endocrinologist at Loyola, on December 8th.

My general body aches have been getting progressively worse. Hopefully, this is due to the parathyroid problem, and could be easily fixed. I'm really hoping that I'll be able to schedule the removal surgery a.s.a.p., because I've been feeling worse and worse.

The other thing that is progressing is my cranio-cervical instability. During spells, I feel my brain ache and feel heavy, and I get extreme nausea. I know that this is the exact feeling that restricted me to bed not so many years ago. In some ways, I can't wait for the fusion surgery to matter what I have to go through, in the hopes that I may actually get better this time. I think there is reason to believe that this is the time. This is the surgery that will finally help! I hope I don't have to become completely debilitated before it is time for surgery, though.

If nothing else, this little parathyroid operation should be awesome. It's known to have a fast recovery, no side effects, and quick results!!! It will only ease a few of my worsening symptoms, not all of them. But even that will be worth it!

Tuesday, November 18, 2008


I found this list of symptoms. It was a pre-surgical list I made in June 2008. Unfortunately, since then, I only had to add symptoms...not remove any. It's not perfectly organized anymore, because I had to add so many things. I'll have to fix it sometime. But, here's the updated symptoms list.

constant pressure headache (pushing out around the skull)
facial pain through cheekbones
jaw pain--tires easily, making it difficult to chew
eye pressure/pain
Usually worsened by light and low sounds
migraines 3-5 days per week

Nausea/fatigue/sick feeling
every day after doing too much
some days after doing nothing

Back pain
lower spine, mid spine, neck, muscle spasms in neck and shoulders

always when upright in mornings
sometimes during sleep (very infrequent)
heartbeat irregularities/arrhythmias
orthostatic intolerance
heart working extra hard and pounding

Low blood pressure
from standing (5 minutes still, 15 minutes walking)
spells several times a week--semi-conscious

fall several times a day
legs giving out

Heavy head
after holding head up for 30 minutes

Swallowing problems
trouble swallowing pills-need chin down, sometimes gets stuck
choke on food and water
water inhaled and throat closes

Wake up sweating and shivering

Bladder problems
early signs of loss of bladder control
frequent urination
feels like a constant need to urinate

Out of it/easily startled/confusion/difficulty concentrating/aphasia/

Sleep problems
difficulty staying asleep

Bone and joint pain

Skin sensitivity/allodynia

Poor proprioception

Painful tingling in heels

Orthostatic intolerance and exercise intolerance

Vertigo spells

Clumsiness/dysequilibrium/loss of balance/decreased reflexes

Pupil dilation

Muscle spasms
sharp pain and burning in shoulders

Temperature control problems/patches of goosebumps/chills/overheating

Episodes of cranio-cervical instability
pounding heart

Monday, November 3, 2008


Here is a very brief overview of the conditions I have:

Chiari Malformation: A skull malformation. My skull was formed too small, causing pressure in the back of my head, and a blockage of fluids that should flow freely in and out of the brain.

Ehlers Danlos Syndrome (EDS): A connective tissue disorder. The main things affected in me are my ligaments and veins. My ligaments are looser than they should be, causing certain joints to easily dislocate. My veins and arteries are also lax, making it difficult for blood to be pumped the way it should.

POTS: An autonomic dysfunction. My autonomic nervous system malfunctions, causing problems with all involuntary functions of the body. This causes difficulty standing, due to my heart rate and blood pressure not reacting properly to the effects of gravity.

Tethered Cord Syndrome (TCS): A spinal cord malformation. My spinal cord is anchored in place, not allowing for it to move freely within the spinal column.

Cranio-Cervical Instability: When EDS and Chiari join together, the skull-spine joint often becomes unstable. This causes trouble swallowing, nausea, heartrate abnormalities, and other autonomic dysfunctions.

Hyperparathyroidism causing Osteopenia: Overgrowth of one or more parathyroid gland, causing excess PTH, which reduces the amount of calcium in the bones and increases the amount of calcium in the blood. This causes fatigue, joint pain, and depression.


Headaches--I have a constant pressure headache. This pressure sometimes reaches a debilitating level. I also get migraines and more acute, sharp headaches.

Nausea--Nausea can be caused when there is increased pressure on a certain part of the brain. It is often worse when I am upright, and relieved when I lie down.

Back pain--I have pain throughout my spine. This is caused by the tethered spinal cord and the loose ligaments holding my spine together.

Fatigue--I require a great deal of sleep. If I don't get enough sleep, my symptoms will worsen, leading me to return to bed and get more sleep. Basically, I am a slave to my body. If it wants more sleep, it will get it.

Tachycardia/Low blood pressure/fainting--After standing for too long, my heart races and my blood pressure drops. Sometimes for no reason at all, my blood pressure gets very low, and I can fall into a state of reduced consciousness.

Heavy head--Due to the instability, I have difficulty holding my head up. This is very tiring and leads to severe muscle spasms in my neck from trying to support my head.

Joint pain--I have pain in all my joints, especially my knees and hips. This is sometimes severe enough to prevent me from walking. It is caused by EDS and hyperparathyroidism.

Choking--I am more and more frequently having choking spells, when I inhale a food or liquid, and my airway closes. This is caused by worsening cranio-cervical instability.


I take medication to constrict my veins, in an attempt to help my blood flow improve. I also take salt pills regularly to force my body to retain more fluid, which can help keep my blood pressure up. Salt pills are also the only thing that helps when my level of consciousness lowers. I try to avoid pain medications, because I've been in pain for so many years, and I don't want to destroy my digestive tract. I treat pain with ice packs, heating pads, and lots of rest.

I've already had three major operations, but obviously, I'm not better yet.

In July 2002, at the age of 18, I had a posterior fossa decompression surgery. This involved removing part of the base of my skull and the back of my C-2 vertebra. I felt much better at first, but started to get worse again after a couple months.

In December 2003, the day after my 20th birthday, I had a cranio-cervical fusion. Titanium rods were bolted to my skull and screwed into my top 4 vertebrae. This was intended to fuse my skull in place atop my spine.

After that last surgery, I worked very hard to recover. When symptoms didn't improve, the doctors said that nothing else could be done. Then, I began to search online for more answers. This led me to have another set of MRI's. I sent these to my doctors at The Chiari Institute in New York. It was confirmed that I have an occult tethered spinal cord. It was also found that I have an inadequate fusion.

In June 2008, I had a section of the filum terminale operation to de-tether my spinal cord. This supposedly release the tension in my spinal cord. I haven't noticed any changes in symptoms since then.

I will probably need to have the enlarged parathyroid gland removed in an operation in the front of my neck. I will see the doctor about this December 8th.

I will also require a revision to my current cranio-cervical fusion. This will reset the position of my head, allowing for greater stability. I hope to be able to schedule this for the summer of 2009.
Well, it was mostly a good weekend. Who’d have thought?

On Friday, Gus and I went to a Halloween party with some of his friends from school. It was fun, but I ended up standing for too long, which led to a long low blood pressure spell. I was mostly unconscious for 20 minutes. It took 2 salt pills and tons of water, plus a lot of time resting to really wake up. What a way to make a first impression!

Oh well. Saturday and Sunday were better days. They were actually pretty fun. I rested, finished a book I was reading, and got all the cooking for the week done. Plus, I made a cake, which I brought to my friend’s house.

Of course, Monday had to come. Back to the usual feeling of dread from knowing I have to go to work and be a productive person. Again, it’s not that I dislike my job. Actually, I couldn’t think of a better job for me and for this time of my life. But still, it's hard to face a day of work, when my body makes it so hard to make a through.

I have to try to force my body to go get dressed now. Try to ignore the pressure headache, which makes my whole brain hurt; the jaw pain, which makes it hard to eat; and the joint pain, which makes it hard to walk.

I have to remember to try the strong pain meds more often. I know they made this weekend much more productive and enjoyable. I'm always scared to take them too often. But what better time than now to make life a little more livable? I guess I'll try it again today.

Oh yeah, my digestion has been slowing down quite a bit. So, I've had to add my soluble fiber supplement back into my diet--which is frustrating, because I thought taking the gallbladder out and fixing my tethered spinal cord would solve this problem. I guess I still have the POTS and the medications contributing.

Off to try to live another day. Maybe. I could try the painkiller now, but then it would wear off during work. So the question is: do I need more help getting started with my day, or making it through work?

Side note: thank you for all of your concern about Buttons! She's doing much better now. She went to the groomers this weekend, and she'll be coming back home with me today.

Seriously, I'm going to get off the couch now and get dressed if it kills me.