The Truth About My "Recent" Illness

The truth about my “recent” illness.

I normally keep my medical problems to myself, but I’m afraid this is getting rather difficult to hide, and will only become more so. Rather than have people speculating about what’s wrong with me as while being too embarrassed to ask, I decided to do all of us a favor and “out” my condition publicly.

The truth about my recent illness is that it’s not recent at all. Many of you know that I’ve lived with chronic pain, fatigue, and other rather awful medical problems since high school. Anyone who’s seen me wake up in the morning knows that there is something terribly, terribly wrong with my body. My former LACHSA students and collegues probably remember when I was having fainting spells. For sixteen years, no one has ever had any real answers. Doctors tested me for everything from lupus to rheumatoid arthritis to narcolepsy. I’ve been diagnosed with DeQuervains syndrome, thorassic outlet syndrome, hip dysplasia, migraines, and cataplexy. But those diagnoses only addressed part of my symptoms. Once the blood tests, EKG’s, and nerve tests for the others turned up negative, the doctors would start implying it was all in my head.

It turns out that it is, in fact, all in my head.

Well, partially in my spinal column too.

Every few years, my symptoms flare up in a rather dramatic way. The flu I caught in October made everything much worse; I immediately developed pneumonia. In early November, after two days of having headaches so bad that I couldn’t keep myself upright, couldn’t see, and was dry heaving, Matt (Caddy) made me go the ER. Since I also had a fever, they did a CT out of fear of meningitis. They didn’t find any sign of meningitis.

They found an Arnold-Chiari I Malformation.

From what I’ve read and been told by my neurologist, Chiari is an less common (but not rare) congenital brain deformity where the skull is too small for the brain. The cerebellum grows down into to spinal column, compacting the spinal cord and blocking the flow of spinal fluid from the skull to the spinal column. The estimate is that 1 in 1,500 people have Chiari, although the majority are not symptomatic and do not require treatment. In people who do show symptoms, this results in a variety of weird, seemingly unrelated conditions including numbness and cold in the hands and feet, joint pain and inflammation, nausea, headaches, balance problems, hearing problems, tinnitus, fainting, muscle weakness, and short term memory loss. If left untreated, large herniations will lead to paralysis on one side. My neurologist found a slight delay in my reflexes on my right side earlier this month; supposedly an early sign of things to come. I am having far more severe symptoms than I’ve had in years- possibly the worst since I was 19 and fainting all the time, and had no idea what was wrong with me.

The only treatment is cranial decompression surgery. My neurosurgeon basically needs to make more room in my head so he can move my cerebellum out of my spinal column. There are several variations on the surgery. (Stop reading and skip to next paragraph if you are squeamish.) Unless they find something particularly interesting on my full spine MRI (like a tethered spinal cord or a large rupture in my spinal cord itself,) The surgery is pretty much set. Some time in April they will knock me out, screw a metal cage into my skull to hold my head still, and make a 7-12” incision up the back of my neck and head before sawing into my skull. They will enlarge the opening at the base of my skull, cut a hole in the membrane that surrounds my brain, add a larger patch of artificial membrane, and remove my first vertebrae (C1.)

I will spend the night in the ICU, up to a week in the hospital, and two weeks in bed. I will be able to have EXTREMELY limited activity for the next six weeks. I won’t be able to return to work for about three months (conservatively.) These are averages; I may recover faster, I may recover slower. I may require multiple surgeries.

In 95% of cases, all progression of symptoms stops after one or more surgeries.
About 75% of the time, it only takes one surgery.
About 50% of the time, the symptoms are REVERSED after the first surgery. No headaches, no hearing problems, no balance problems. When the patient wakes up, all symptoms are GONE. Permanently.
About 5% of the time, the patient doesn’t wake up.

From what I understand, the odds are fairly good (at least so far as neurosurgery goes.) Yes, I’m scared. Yes, I will be in a lot of pain. No, it is not optional. But the impending paralysis issue aside, the 50/50 shot of all my medical problems evaporating forever gives me tremendous hope of one day living a mostly “normal” life (physically, anyways.)

I have Kaiser through work, so my medical bills should be fully taken care of. I don’t even have a co-pay. I have a month’s worth of sick days. I don’t qualify for the catastrophic leave/sick day bank because I’m an hourly teacher, but I have 100 days at half pay after my sick days run out. After that, well, who knows, but it’s pretty likely that I’ll be back at work before my medical leave runs out. Caddy has taken wonderful care of me, making sure that I get out of bed for at least a few hours a day, eat, and exercise. He’s done nearly all of the housekeeping, entertains Drew, and drives me around whenever he’s not actually at work.

The handful of people I have told have asked what they can do, and I couldn’t think of anything at the time. However, having had a month to think things over, here’s my list:

1. Lend me DVD’s or Nintendo DSi games. I’ll be in bed for at least a month, and I don’t do boredom well. We don’t have TV or cable, but watching movies on my laptop suits me just fine. Please label them really well; I’ve been having serious problems with short-term memory. I’ll post my surgery date once we know, but don’t worry about it until then.
2. Lend me a really comfy, highly adjustable ergonomic office chair that won’t rub against my incision site. I’m really uncomfortable now, and having a good chair at work and a good chair at home will make a HUGE difference for me. I promise I’ll give them back once I heal up.
3. I need some sort of swing-out-wall-mount or hospital-type rolls-on-the-floor laptop stand so I can swing it in front of me to watch movies in bed. I know these exist, I’ve seen them. If you know where I can buy one, please let me know. I can’t use regular lap desks, or trays that have to touch the bed.
4. Lend me a really comfy recliner. Apparently, I’m supposed to sleep at a 45 degree angle from now until about 6 months after the surgery.
5. While Andrew and Scott are happy to pick Drew up from school while I’m off work, there are times when it’s really hard for them to get there in time. Also, between now and my surgery, I will probably have at least a few days where I will have to leave work before Drew is done with school for the day. If you live in El Monte and it’s not too much of a burden, please offer to be an emergency contact/pick up for Drew.
6. I need a carpool partner for my grad school classes at Cal Poly. I’m in GED 691 and 693, Weds and Thurs. I’m slow and kind of a pain in the rear, but I DO have a disabled placard for parking! I also already have my CPP parking permit. It’s in my purse right now.
7. If you’re handy, please help Caddy soundproof our bedroom so the kids upstairs and the street noise don’t wake me up while I’m trying to recover. We need to replace two windows with double-paned units, install sound deadening insulation, and a thin layer of drywall. We don’t need to paint or anything, I just need to be able to take my pills and sleep through as much of the recovery process as possible. This is a big project, but I think with enough hands it can get done in two weekends.
8. If you’re handy and don’t mind a longer project, please help Caddy finish the bathroom next to our bedroom so I don’t have to walk across the whole darn house to use the toilet. This has been the never-ending project; every time we try to finish it, some other major thing has to get worked on in a tenant’s unit.
9. Once I’m allowed to have visitors, PLEASE visit. I spent a month in bed during my pregnancy, and it was terribly lonely. Bring your laptop and get some work done. Grade papers. Knit. Watch movies with me. Anything. I don’t expect you to be a constant source of entertainment or anything, just a friendly presence.
10. Message and chat with me on Facebook or email. Please don’t text or call after surgery; sleep will be a precious refuge, and I don’t turn off my phone.
11. I would like to have some family portraits with Drew and my fellow co-parents taken before the surgery (you know, when I still have all my hair.) If you have equipment and/or a studio and would be willing to do this without charging us, please let me know.
12. I need a referral for someone who does estate planning/end-of-life decision paperwork. I would like said person to be patient, kind, affordable, and thorough. My will/durable power of attorney/advance directive will probably be rather complex. The chances of me dying are low, but I will feel less scared going into surgery if I feel like all loose ends are tied up.
13. Hope, wish, and or pray for my speedy and thorough recovery, regardless of whatever religion you ascribe to. Any prayers, faithful acts, or spiritual work done on my behalf would be greatly appreciated.

So now you know. So please, no more stepping away from me because you think I have the flu. No walking on eggshells, no carefully phrased questions. If you want to ask me about something, go for it. I won’t be upset. Please be patient with me when I lock myself out of my classroom for the 15th time, and understand when I forget to call you back. Don’t be upset if I have to look for somewhere to sit if we’re going to chat for a while, and don’t be offended if I flake out on our plans because I’m not feeling up to leaving the house. I’m going to try really hard to live as I always have, even though that’s going to be substantially harder for a while. I’m also going to try to go out and “do” things before my surgery. I’m definitely planning on going to Disneyland/DCA before the surgery. Andrew (Drew’s dad) has insisted that I develop a “bucket list,” so if you have any good suggestions let me know.

I’ve been avoiding posting about my medical drama on Facebook, partially because I think it’s an intrusion into other people’s lives. I have a blog I started right after I found out, and have been posting all my Chiari-related stuff there. If you really want to know what’s happening with my health, you can find it here:

http://jennnelson3.blogspot.com/

Please feel free to pass this on to my friends and family who aren’t on Facebook.