A day in the life.....

I posted a lot here since I have been too tired and lethargic to do much of anything for a long time. I copied and pasted from myspace account, so it may not seem like it makes sense, but this is everything that has been going on. I am headed now for a nap.... 10 am..... yeah.

So, I have been having trouble breathing when I exert myself, going up stairs, walking, going grocery shopping.....I brought this to the attention of my PCP and she scheduled me for a pulmonary test to see if I have any problems....... (aside from my long syrinx....? )

So, I walked around with a pulse oximeter on me and my blood oxygen went down to 90% just walking around the hallway! So, I asked the pulmonary technician to slow down that I was not feeling well, and I started to feel a bit better.
Then, I had to sit in a glass box and breathe into a tube attached to a computer and breath monitor to see how I was doing for my height, weight, age, sex, etc. Well, she said I was going fairly good and then part of the test was to give me an albuterol treatment to see if I responded better with my lung function.
Guess what? I had an allergic reaction to the nebulized albuterol and my face got RED, like fire and I was having heart palpitations and she went on with the test anyway and said that I was much worse with the albuterol instead of better, she was very concerned about me and got me some water and then made me breathe some more in the tube which almost caused me to pass out.
I had to sit for a while until my senses came back.

This activity unfortunately caused severe burning back pain between my shoulder blades and I was confined to the couch for the rest of the day when I got home. I was wiped out.

Needless to say, I did not do very well with this test and I am wondering what my PCP will make of this.

Today, I have trigeminal neuralgia symptoms and I am not a happy camper, I was up all night, I could not sleep on the right side of my head or back of my head.... just another day .... dealing with syringomyelia.

Unfortunately, trigeminal neuralgia is also a sign of MS (multiple sclerosis) so hopefully I don't have that, too.
I'm treading water but I think I need a life vest now.


Well, I had my nerve block injections Oct 27, and despite the pre-med of 20 mg of Valium, it HURT! I got home and slept the afternoon away but now my injection sites hurt.....
I have also been out of breath recently so I am going to see my PCP today to see if she can help with that. .....I used to exercise daily like a mad woman.
Oh well. At least my headache is gone. Now I wish the neck pain was gone, too.

So...... I thought one of my vertebra was broken after looking at an MRI done a few weeks ago, horizontally....and come to find out......(drum roll)
I now have the beginning of scoliosis!! Fabulous! I knew syringomyelia caused scoliosis but to actually have this now is just lovely.

According to the radiologist, it is so mild and in his opinion, not worth mentioning!!!! WTF!? Why would that not be worth mentioning? Why do I have to find that? Can we even trust doctors? I mean come on, there are so many people who are relying on doctors and look at me ... I mean, really look at my history. 2006, seeing chiro for neck pain and right arm pain, MRI refused.
Go to different chiro who does his job and tries to get MRI for me which is denied by insurance. I am sent to neurologist who orders MRI of my frikin shoulder!!!! WTF?
I am then sent to PCP who reluctantly orders MRI, but drops the ball and refuses to order any further tests, instead referring me to neurologist, which takes 2 months!!!!!!!!!!!!

The neurologist I worked for ordered rest of my MRIs and finds very long syrinx and then tells me "Don't worry about it"!!! Again WTF?

I do tons and tons of research, hours and hours spent looking up this condition and guess what? ! I DO need to worry about this!

Neurologist I finally see after 2 months tells me I have a headache because of medication rebound from frikin Advil and Excedrin. THANKS!!!! BUT she writes my PCP a letter stating that my symptoms could be caused by my syrinx..... so there is a light at the end of the tunnel and it is not the train....

I then go to Yale University and see a neurosurgeon who tells me that I am a nonsurgical candidate at this point and that my symptoms could not possibly be caused by my syrinx. He suggests pain management and physical therapy.
I then see my PCP again who has the nerve to tell me that my pain is in my head because a neurosurgeon from YALE says my symptoms are not directly related to my syrinx...... I could kick this neurosurgeon.

It takes over a month to get to see a pain managment doctor and then another few weeks for injections, which helped a good deal, but not 100%.
Anyway, I am trying to be positive through this and I should feel lucky to be able to push on despite this crap... however I am getting to the end of my rope.

It is 8:40 am and I am still in my pajamas..... that is lame. I feel like just staying in and doing nothing. Which I can't. I need to get up and get going.... glad the grocery store is only 5 minutes away.

Living with a rare disorder sucks. I don't wish this on anyone. Dealing with doctors that seem incompetent sucks. AT least my PCP is now trying and I certainly appreciate that. I need to print out some stuff for her I think.
Hope you have a good day! I know I will try but actually having a good day is debatable.

If you could predict your future.... I thought I had mine all figured out; I was going to go to dental assisting school this year, graduate next year and get a great job, make pretty good money and then POOF.......GONE!!!

I had the last series of MRIs last week and I finally got the report yesterday. Do you think I'm happy? Far from it. As a matter of fact, I'm pretty angry that the physians that are supposed to be watching out for me are just dropping the ball, constantly.
Your MRI is normal. Done. End. Finished. Go away, kid, you bother me..... and so on.

Me being me, I got all the images on a disc and I looked at them myself. What I found shocked me and made me feel like the doctors that are treating me just plain don't know what to do with my "abnormalities", so they say, everything is normal.

First off, the cyst in my spinal cord has gone from T10 (which it officially ended at in June 08) to the end of my spinal cord. It can't go any further than that, it can only now get wider. Yah frikin hoo. That, my friends, is NOT good, as a matter of fact, that is BAD, probably as bad as it can get, oh, wait, it can go UP, to my brain! Yeah, I forgot to mention that. Will the fun ever end? !

So, I also saw something else that was not mentioned..... on one view of my MRI, where the spinal cord is looked at from the front, (the front being the part that when you look at someone's face, and you can see through them, you would see the front of the spinal cord) I saw where my spinal cord is going along fine, nice and straight, and then about half way down, it jags off to the left like part of a vertebra is cracked through the middle. !!! WTF!!!!??????

Now, I have been having burning pain in the middle of my back for a long time, I can't lean on my back or lay down, etc. (the last time I had that, I found out my coccyx was broken) So, I printed out this particular view and circled this and gave it to my PCP to bring to the radiologist. I also e-mailed a view to my chiropractor. No ONE has gotten back to me on this... Why can't the radiologist actually look at films and report what they see? Is that so difficult?

I also found out that my 5th lumbar vertebra is fused to my sacrum, so I only have 4 lumbar vertebra...apparently I was born with this.....?
I can't wait to get to TCI in New York to see what they have to say about me....
I will let you know one way or the other as soon as I find out. Good thing I'm nosey.

Well....I had sacroiliac joint injections on Friday, Sept 26 due to the severe muscle spasm and pain I have in my low back. I'm happy to say that I got through it without any problems, except that a small amount of the numbing fluid leaked onto my sciatic nerve and made my right leg numb for a few minutes and I could not feel it, but that disappeared and I was fine to drive home. The injections are not that painful but they are uncomfortable; although the numbing before the injection was pretty good at least for the left side, I felt everything on the right side.
I am now able to sit without too much pain for about 2 hours before I have to get up and move around. Before the shots (coccyx, too) I was unable to sit for more than 5 minutes without severe pain.

I also brought this to the attention of my PCP, who suddenly felt bad and ordered a low back MRI for me, at my insistance. I really want to know if my syrinx has grown and if it is affecting my low back, because all of my life, I have never had such pain in my low back; which started in May this year. I did not fall, I did not do anything, as a matter of fact, I had to stop going to the gym due to fatigue and pain (saved some money, too).
I did fall when I was 15 while iceskating, however this has not bothered me for years upon years and finding out that my tailbone is separated, was sort of a shock and the fact that it was suddenly causing a lot of pain was also weird. Broken coccyx can also cause piriformis syndrome, sacroiliac syndrome, so maybe my syrinx is not involved, and it is just bony pain from my broken coccyx, but who knows. Coccyx surgery has a 50% failure rate, and it not recommended. We'll see how these injections help me and for how long.
I will post results of my lumbar MRI as soon as I get them.
On a side note, my hair was hurting my head with pulling it back in a pony tail and washing it and sleeping on it, so I shaved my head....whew! Feels GREAT!!!!
Unfortunately, people now avoid me and stare, but it's okay, I want most people to leave me alone anyway!