A Brand New Day

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A Brand New Day

Postby elvenkayt » Tue Apr 07, 2009 3:32 pm

Hi everyone,
I had my PFD on January 9, so I am 3 months post-op. I'm going to tell you my whole story, so you know just how much my life has improved since surgery.
I believe I started having symptoms back in October of 2006, when I was going through a particularly difficult physical training program through my ship. I'd been having headaches that were intense, but didn't last very long, so I never really gave them any thought. I also developed unexplainable, severe sciatica and was later diagnosed with fibromyalgia. Since I was in the Navy at the time, this definitely put my career on hold. In the Navy I was a Nuclear Electronics Technician and was an overachieving First Class Petty Officer. In the Navy, I was used to succeeding at everything I attempted, so coming upon all these mystery medical problems really frustrated me. I started falling asleep at the wheel when I was driving, but tested negative for narcolepsy and sleep apnea. I was given a desk job that was much easier than my job on the ship, but I continued to decline. Eventually, after over a year of physical therapy and other procedures, the Navy medically retired me in May of 2008.
While I was making a pension, we couldn't afford to live in Norfolk, VA, so my husband took a job in Pittsburgh, while I had to get the house ready to sale. In this economy, it was a huge challenge. I spent many days trying to paint, clean and make my house show-worthy. It was while I was painting ceilings that I noticed that I was getting incredibly dizzy while getting up on and standing on chairs to paint, but I blamed it on the fibro drugs I was on. I was also getting extremely intense headaches while I had my head back and painting. It was a very dark time for me, since I could only do about 5 hours of work on the house a a day before I would collapse in pain, exhaustion and loneliness. By the grace of all that is good, we did eventually get the house sold, but at a loss, and I made the long drive to Pittsburgh. Thanks to energy drinks, I was able to make the drive without killing myself or the four animals I had in the car with me.
We got settled in PA and I started getting really bad dizzy spells that were initially blamed on labyrinthitis, but no amount of steroids or antibiotics would relieve it. During all this, the body pain and sciatica continued to get worse and worse. I slept a lot, and didn't leave the house much. I didn't drive for about 8 months before the surgery due to the bad dizziness. I went to doctor after doctor trying to find answers for the unexplained pain in my body and the sciatica. The headaches got so bad that they were worse than the sciatica and I finally told my family doc about them. She referred me to an ENT. It was the ENT who ordered the MRI that finally diagnosed the Chiari Malformation I at 7.5 mm. He called me on a Saturday himself and told me to get a neuro appointment right away. Of course in the neuro world, right away is about a month, so I learned all I could about CM (thank you ASAP!) and what the treatment entailed. I found out that I didn't have any evidence of a syringomyelia, so the sciatica is still unexplained unfortunately. The surgery was scheduled for 10 days after the initial neuro appointment, so I didn't have much time to get too freaked out about it. It was scary, but I tried to keep a positive attitude. In my mind, it could not get any worse than it already was. I read every success story I could find and watched a couple of 'Mystery Diagnosis' shows on Discovery Health that centered around Chiari. Those success stories were my lifeline. I kept telling myself that I would be a success story too and one day post my story here on ASAP.
The surgery itself at UPMC in Pittsburgh (Dr. Paul Gardner) was one of the most painful things that I have been through to date. Immediately post op, when they can't give you any pain meds, I really started to think that it was not worth it. I must have been in a lot of pain because I was in the recovery room for a lot longer than is normal (about 9 hours), just to get my pain level down to a point to be transferred. I trembled the whole time and could not get my blood pressure or temperature to go down. My family was able to see me about six hours after surgery and my stalwart husband sobbed at my bedside at seeing me in such pain. I tell you this not to scare you, but to prepare you. I feel I would be doing you an injustice if I told you differently. Some people don't have the pain that I did, some have worse. It just depends. Luckily those painful memories are fading with the headaches.
After the recovery room, I progressed in a normal fashion, if at a bit more pain than normal. Surgery on Friday, home by Monday. The first two months at home were pretty awful, I have to say. I was not allowed any more pain meds after two weeks, so it was not a fun time. I kept at my neck exercises faithfully and tried very hard to keep that positive attitude, but it was difficult. Some days I thought I would never get better. My husband kept supporting me and my live-in mom was a lifesaver. I could never have made it without them.
In March, I started to see the light. It was like I woke up one day and was suddenly okay. I still had a lot of headaches, but I could tell they were getting better! My neck has more range of motion than before, but looking up still is a little painful. The only side effect I had was numbness on the left side of my face. It's still there, but is slowly getting better. My energy level is up and the overall pain has lessened. I can't say that I'm 100% better, but it's close to 75%. Even the sciatica has lessened some. It's more than I could have ever hoped for before the surgery.
It's now April and I've decided to go to college. It's online college and I don't think I'm up to a part-time job yet, but I get better every day. I'm stronger than I've been in years. I can drive! This one thing has been so refreshing. It's funny that the little things start to seem exciting again. I still have bad days, but they are better than the good days I had before the surgery. I've been able to get off of two medications that are no longer needed on a daily basis (I still take them on bad days, though). I don't want to jump or run (I'm a little too scared to do that), so I'm doing gentle workouts on the Wii Fit and the easy mode of Dance Dance Revolution (you can turn off the jump feature, so this is a great way to get back in shape, as long as you are gentle with it)
I'm so grateful that I had the opportunity and access to the great care at UPMC. I also realize that I was incredibly lucky to run across an ENT who knew the symptoms and did the proper tests right away. Even with all the pain and misery associated with the surgery itself, I would do it again in a heartbeat. I'll do it again if I need to in the future.
Sorry I wrote a book here, but I hope that it gives some other people hope, like everyone else's story inspired me when I needed it.
Please, if you have any questions, I am certainly willing to correspond with you if you need some advice or a friendly ear.
My thoughts and prayers are with you all!
:-)
Kayti
7.5 mm CM
PFD w/ C-2 Laminectomy 1/9/2009
NS: Dr. Paul Gardner UPMC Pittsburgh, PA
elvenkayt
 
Posts: 25
Joined: Mon Dec 15, 2008 11:42 pm
Location: Rural Valley, PA

Re: A Brand New Day

Postby adcolbar » Tue Apr 07, 2009 10:14 pm

First of all, thank you, Kayti for serving in our armed forces.

Secondly thank you for sharing this story with us. I am thankful you are doing well and continuing to get better. I only have Syringomyelia, but I need to hear encouraging stories like yours.

By the way, at one time, I was a PT assistant and for sciatic, there are shoes that look kind of goofy and are expensive, but they are the type that have the springs on the back of them and have done great for that condition. Not sure how it will affect the rest of your body, though. Ask your doc and a PT can order some for you if your doc says it is okay.

Best of luck.
User avatar
adcolbar
 
Posts: 118
Joined: Tue Mar 10, 2009 6:35 am

Re: A Brand New Day

Postby elvenkayt » Fri Apr 10, 2009 12:04 pm

And thank you for your support. You would not believe how much the support of civilians does for the people in the military. It is much appreciated.

I will talk to my doc about the shoes. I have been through more PTs than I can count, who all were baffled at why the sciatica could persist for so long, but I'm willing to try anything at least once at this point.m So thank you for the suggestion. I'd never even heard of them. :-)
:-)
Kayti
7.5 mm CM
PFD w/ C-2 Laminectomy 1/9/2009
NS: Dr. Paul Gardner UPMC Pittsburgh, PA
elvenkayt
 
Posts: 25
Joined: Mon Dec 15, 2008 11:42 pm
Location: Rural Valley, PA


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