neenerpants.com

7 months and 23 days later

I've heard from a lot of people (for a long time now)that they want an update and more info on my health. Sorry I was a slacker until now.

Since the surgery I have had some painful moments but even the worst day since surgery is still 8 million times better than my best day before surgery. The main problem I (used to) have was the SLOW SLOW healing of my neck muscles. Finally I was able to move and not wonder what body part was going to shut down. Only now I wasn't sure if straining to do ANYTHING might cause neck pain. You use your neck muscles more than you think. My muscles used to cramp up so bad that the back of my neck felt like a rock. The cramping of muscles used to cause dizziness and sometimes numbness in my right arm. For a month or two the middle finger on my right hand was completely numb. I used to have to watch my hand more carefully so I didn't hurt myself on that finger - I found it was numb one day when I kept seeing blood on the boxes I was working with at work and had to search myself for the cause.

I still can't do laundry without pain and dizziness. It has something to do with leaning over and reaching my arms out to do things. I guess leaning over and reaching out uses a lot of neck muscles that aren't completely done healing and building. Aaron takes good care of me here and tries to do everything for me.  :)

I can pretty much lift anything (within reason). Once in a while when I am leaving a grocery store and I have a bag of dog food and a bag of cat litter in my arms at the same time I smile wide and the ability to do this just makes my day a lot better. I think my inner girl squeals a little each time. It's given me a lot of my life back. I'm very independent and having to ask for everything to be done for me was really annoying. Thank god Aaron is so wonderful.

Before I left Florida I just felt like my body was taking too long to heal. (I do have the patience of a two year old) I thought I would keep a lot of the weirdness for the rest of my life but it was such a massive improvement I didn't mind at all. Then I had read something on line from a woman who started getting 9+ hours of sleep per night and just the extra resting alone helped her heal A LOT faster. So I  decided to try this and now I am SOOO much better than I was in Florida. I don't wear my neck brace every day - maybe once or twice per month. I have successfully worn cool high heal boots twice to work (I brought Doc Martins just in case). I don't have to wear those ugly black sneakers that helped me walk on all those shitty days (I've started to hate those sneakers but I will never throw them out). I can wear necklaces - usually all day but sometimes I have to take it off. I can wear earrings all day with out pain or numbness. My coat no longer seems too heavy. I usually have feeling in all of my limbs, fingers and toes. I usually have feeling in my entire back (this is what usually goes wrong lately). Before I left Florida, I always had something numb but usually is was handle-able.

So I still get some weirdness. When I go to sleep at night I still get the numbness in waves but only a couple times per week and not all that badly. I usually don't have to flip over 3 times like before. Before I left Florida I would lay down on my right side until my left side went numb and then I would flip over a few times until my body settled itself. I still use special pillows etc and that helps me sleep a lot better.

There are some days where I have a really rough day at work. It's sometimes caused by what I did that morning and sometimes caused by me sitting in the wrong chair (There is a girl at work that gets mad at me if I try to get a chair to the settings that make me not go numb and have pain - she's very strange). Most of the time it's because I wanted to read something and spent hours looking down. So I still can't do as much reading as I want (Damn those slow healing neck muscles). When I have one of those bad days at work I get a tiny glance back at where I was 8 months ago.
I have odd memories of before surgery but I can't remember the feeling of the actual pain (except the weird paralyzation stuff in the beginning). I remember being in so much pain all the time and having so little energy. I remember that walking half way across the room would completely wipe me out - just before my entire body would lock up and I couldn't get back to where I was sitting. I remember the massive twitch that first started all this crap - and that memory sends feelings of fear and anguish through me. I've have nightmares about this feeling but I don't wake up when I have them.

What I don't remember is the feeling of the daily pain. I remember how it affected me and how screwed up my body and existence were - but I can't remember the pain. I remember thinking that the pain back then was indescribable and I couldn't imagine the human body could be that painful. I remember thinking that no one could possibly imagine that state of being. And apparently I can't imagine it now. (YAY)
I guess my forgetting the daily pain is my mind protecting me. On a rough day now, I'm only getting a slight glimpse of what used to go on with my body. Maybe it's just that my brain function became so fogged at the end that it was easy to forget.
So the basic end result of this (almost 8 months later) is that life is absolutely wonderful, I feel great and I am positive that I will only get better.

My Improvements so far.

It has been almost a full month and I have been trying to keep a list of improvements since there were so many the first few days. I know that there are more than just these few improvements but these are the ones that stand out the most. Many of you may not know how bad my condition was. I don't think I realized how bad off I was and how much I just accepted the problems until the amazing clarity after surgery. This has been the most amazing experience - a true Growth Experience (a term my father used to use when we had to do average growing up things).

All of my senses and my thinking just seem “clearer”.

I can feel my back – I didn’t realize that my entire back was completely numb for 5+ months until the day after surgery. A day or so after surgery, I casually scratched my back and I was amazed at how much feeling I had in my back.

The hearing in my right ear is so clear that I often don’t recognize sounds and I am relearning sounds all the time. My hearing has been getting bad for years and I thought it was just age catching up with me. Now I can hear better than I have for years (I only had bad Chiari problems for about 6 months).

My thinking isn’t fogged. I can remember things again. Before surgery I was a little out of it and made stupid mistakes at work and used to forget simple things. Now my brain is back to being sharp and I feel like me again.

I seem to see clearer. This improvement may be caused by my eyes not rolling into the back of my head while I wince in pain or not squeezing my eyes shut while waiting for the pain to either pass or until I could handle that level.

I don’t have to stop what I’m doing to squeeze my eyes shut for pain and numbness.

One of the first things that my husband said to me after we were home for 2 hours was, “I haven’t seen you wince yet” as if that were amazing. Then I remembered wincing in pain ALL THE TIME – it had become so normal for me that after a while I didn’t even notice it anymore. Not wincing should never have to be a pleasant surprise in anyone’s life.

My body can actually feel being hot or cold. I notice that I’m cold more often and that’s probably due to having feeling in my body again and not running a low grade fever all the time.

My body temperature seems more regulated and I feel like I’m more in control (Chiari people never feel in control of their bodies, ever).

I can carry things that weigh less than a pound from one room to the next without whole sections of my body going numb. Before surgery, I couldn’t carry and empty plastic cup more than 3 or 4 feet before massive waves of numbness went through my body.

I’m not moving and fidgety to avoid whole sections of my body shutting down. Before surgery, fear of The Twitch made it so I could never hold still.

There is absolutely no twitching or the uncontrolled motion similar to a dog that is shaking off while wet (starting at the head and going down through the body in waves down to the ends of all my limbs at once).

My husband can touch me again. Before, if Aaron just grazed his finger tips my back (arms, shoulders, legs, etc) in a loving way, I would cry out in pain. Standing hugs were sometimes the best (only?) way to show me love and affection because he could hold me up at the same time and I could finally relax for a second or two. (Thank you Aaron for helping me through the really bad times)

I have rediscovered old memories that I didn’t know were gone. A week or so after surgery someone on the WACMA support group asked if she would ever get some of her lost memories back. Her friends and family were picking on her for not remembering major events. It wasn’t until I read this that I realized, since I’ve been home from the hospital, I have told my husband a million childhood stories that I had forgotten. I have been married for almost 14 years and there were still things that I had never told him because they were lost memories.

It’s nice to have things back that I had no clue were gone.

Thank You Dr Finizio (and Cheryl Tyler, his PA) for allowing me to have Me back again.
:)

Wow (again)

Aaron has informed me that my friends are so wonderful, that they are gathering $$$$ together to get me a real camera. All of my silly "life changing experience" stuff has made me consider doing photography for money in the future, so this would be a great start. Aaron is sure that with some research online, he can get me a really great camera for a good price. Wow! I have such wonderful friends!!! (I was also told to post that if anyone wants to donate, email Aaron at aaronace@aaronace.com )

The kindness and good wishes, from everyone I know (and many people I don't know), amazes me more and more every single day. Even now that the surgery is complete.

And again, THANK YOU for everyone's support. It will help me heal this big scar a little bit faster.

Oh, and by the way.
Whoever brought me the living room full of awesome get well stuff (candle, lotions, tempurpedic pillow, electronic games, chocolate, etc) I thank you but you never left your name on any of it. Wonderful gifts and I really appreciate them very much.
Keep smiling.
:)

Good Days

Well, I am finally home. In on Wednesday. Out on Sunday. Five days isn’t so bad.

I found out, after going through all of the hell to find the right surgeon, I made a good decision. Dr. Finizio and his PA (Physicians Assistant, I think) named Cheryl Tyler were great. They were knowledgeable and very helpful in aiding me through the surgery and now through the recovery. I really appreciate their expertise and Dr. Finizio’s accuracy. I feel better than I have felt in many months. With some things, I feel better than I have felt in a long time. I haven’t felt any twitching since the surgery – even when I was delirious in ICU on Morphine.

Saturday, I unconsciously scratched my shoulder, and I was amazed that I had feeling in my back. I hadn’t had feeling in my back in months so that little touch was a great feeling.

And I’m finding out things that were wrong before that I didn’t realize were wrong. I have been complaining about getting deaf, little by little, over the past few years. No big deal – my mom has hearing problems and it’s hereditary. Last night I was laying on my right side and I heard something so clearly that I thought, at first, something was wrong with my head or skull. I heard crinkling in my plastic hotel pillow and the sound was so crisp and clear, that I didn’t recognize it and thought it was the sound of water in plastic. It took me a while to figure that one out. And now that I’m paying attention, I know that the hearing in my right ear is better than it has been in a long time (maybe in years). It’s definitely better than it was when all this pain stuff started six months ago. That amazes me. Maybe my left ear will improve over time too. Sometimes things progress slowly so maybe I will hear even better in the future. Maybe not – either way I’m still better.

YAY Brain Surgery!

Update

Jeannine is doing great. She's out of ICU and in her own room (610 at Shands). Visiting hours are from 9am-9pm, and she's has her mobile phone with her, so you can give her a call if you like.

More soon.

Another Neener Update

Jeannine is felling much better. She'll be in ICU until tomorrow, but then she should move into a regular room. I'll post visiting/package info when I have it. Thanks for all of your support. It really helped.

Peace.

Neener Update

I'm home fore a quick pit stop. Jeannine is being monitored in ICU for the next day or so, but she's doing fine. Thank you for your well wishes, prayers, good vibes, mojo, etc. It worked! She's in quite a bit of pain (she's on a morphine drip), and her face/eyes are really puffy, but I'm told that's normal. I stayed with her in post-op recovery for five hours (I need to buy the nurses some flowers for breaking the rules for me), before they brought her up to ICU. I'm heading back at 8am. I'll post more updates when I can.

Thank you all so very much.

Peace.

Where to send flowers and stuff

A few people asked for this info -- I will be at Shands Hospital in Jacksonville FL. The address is ...

Jeannine Acevedo
655 West 8th St.
Jacksonville, FL 32209

I will be in ICU at first, and I can't get flowers there, but Aaron will post again when I'm in a real room.

Keep smiling :)

Pre-Op Hair-shaving Party

Sorry I haven’t posted about my wonderful day yet. I have just been sooo overwhelmed by how much love I get from everyone and I needed a day to soak it in. All day yesterday I had this jaw dropping WOW feeling – my family of course loves me but wow you guys really make me feel wonderful. And then the replies to all of the short posts I did were all love and compliments. I have gotten so many “good luck” and “that is awesome” posts from people I don’t know. How cool! All this was just what I needed before the scary brain surgery.

The day started out with Miss Judy (a very sweet person at work who does makeup professionally) doing my make up. I’m not normally big on makeup but since I was having pictures taken I figured that I should go all out and do everything. I told Judy that since my hair was going to be wild then she could do anything she wanted with my makeup. We decided to go with Purple Hair first so she based the make up on that (hence the purple around the eyes). Here are some of the pics for that.

(Notice the long blonde hair)

Then Miss Kelly went to work on the coloring. Wow what a great job she did with the colors. She had obviously done this before so I basically let her do what she thought was cool.

(I can tune in radio with this)

And now for the moment I have been excited about for a month or more. YAY PURPLE HAIR!! Purple hair is what started me thinking about changing my life so that I wouldn’t be afraid to try things in life in the future. So when I say “YAY
PURPLE HAIR”, there is more to that statement than just color.

Any of you who know me well, know that I squeal every time something awesome excites me. This look made me squeal. What a beautiful color!

And then they decided to cut my hair shorter for pics and coloring. A lot of people said that I should have shorter hair and that I looked cute.

(I love my friends that make me happy)

Then we decided to add some bright red.

And again we achieved an absolutely beautiful color.

(wow)

(Aaron, my husband, says this is a typical Jeannine pose)

(This is Akeim making me beautiful for all of my friends who are fans of Anime)

Now the real hair cutting started.

One of my best friends Alex really wanted me to have a Mohawk. And the whole party sort of developed from this idea so the only hair style that I guaranteed was a Mohawk.

(This was the first look that shocked me)

And now for the real shaving …

(Here’s a typical Jeannine look eh?)

This next picture is my favorite so far. What's cool about this picture is that I knew Kelly was standing behind me and shaving the final hair off. But what I didn't realize was that she was done, until a half-a-second before this picture was taken.

And we decided that I could go European and have hairy armpits …

(My friends make me happy enough to make me cackle so much that you can see my tonsils)

And now for the “We REALLY love Jeannine” part. My friend Michael was thinking about shaving his head and decided to do it during my party to make me feel better. After him there was a line of people.

First was Akeim who has had hair since I knew him and told me, as he was being shaved, that he really LOVED his hair. Then the sweet Miss Kelly who spent hours on my head and then let me shave her head. Then there was Mark. I even got to shave a little off of the back of Tonya’s head. Wow that’s love.

Michael

Akeim

Kelly

And now the group picture of all the bald people…

As I look back at my first 35 years of my life, this is one of the best days that I have had so far. I am overwhelmed by how wonderful you all are. What a great day. Just making this post and looking through the pictures, I’m smiling so much that my cheeks hurt. When I am knocked out and they cut into my head, I expect that I will be dreaming of purple hair.

More Pictures

OK, a friend posted her pictures of my hair party. She is very good at taking pictures every few minutes, so there are a lot of really great candid shots. There are 3 pages, so keep clicking. Thanks Miss Kristen.
http://www.darkwhispi.net/gallery/June20,2004

I'll post where to send flowers, and such, soon.

J

My computer is not working at the moment and I will post more pictures soon. For now here are a few pictures - http://aaronace.blogs.com/photos/hair_day/myfavoritecolor.html.
I had a blast and I look pretty good with a bald head (or at least not bad).
:)

Pre Op Testing

SO I went to day to get grilled, questioned, and tested.

The first person I saw was a woman who asked me about my medical history, my families medical history, and a basic backround on if I take narcotics, have aids, etc. Then they gave me the generic exam and took my vitals. I then had to sign a bunch of papers saying that I understood there is risk involved. Now, who the hell has brain surgery and is shocked that there is risk? I had to sign something that said in an emergency situation I would allow my neurosurgeon to make any last minute, life saving, decisions (as in if they do not have time to ask Aaron to save my life). Who says no to this question? I even had to sign something that said if I need a blood transfusion then they can give it to me (and save my life). And my question again is - who the hell says "no, don't save my life." So after a few good giggles with that doctor they sent me on to some guy who had me sign more paperwork and more legal stuff. Do I understand my rights as far as them not being able to share my medical info with just anyone. Etc and blah blah blah. Then I went on to someone else who then asked me more medical history questions (the same basic questions as before) and then drew some blood for blood work that they do prior to surgeries. She even said that they would do a "just in case" pregnancy test (can you imagine how that would complicate my life right now?)

So today was boring but the doctors got everything out of me that they needed and in less than one week I will be sliced and patched.

And again I say "YAY Brain Surgery!"

Well the doctor called before I even had a chance to go in for my Pre Op appointment today to say that surgery was moved to the 23rd. One day earlier isn't bad and I can get this moving sooner. I guess the doctor has a good golf game on the 24th instead. So now wish me luck one day earlier.
:)
Keep smiling
Neener

Surgery date has been set

Well the surgery will be on June 24th and tomorrow I go for a day of Pre Op testing (whatever that means). It all seems like it's moving very fast and that is good (I think). I'm really looking forward to it and I am, of course, a little scared too. But I am tough and will chalk this whole thing up to what my dad has always called "A Growth Experience." I will have a long recovery (2 months? more?) but I am looking forward to the challenge and especially the end result.

Strangly, my outlook on life has changed. I've spent my whole life doing everthing that everyone else wants out of me. Now I see a few things that I want that I haven't done yet. How hard is it to learn how to belly dance at age 35? Do I need to ask permission from the doctor? Why have I never had blue streaks in my hair? I've never had purple either. Why don't I have any cute little tattoos on stray places on my body? There are a million things that I have wandering through my head. If I do only 3 of the millions of ideas then I will be better off than I was last December (last time I felt normal). And according to my plan of living (pain free) to the ripe old age of 103, I have another 68 years to go. That is a long time and I have a lot to achieve.

YAY Surgery!!!!

It’s been a while since I posted and I’ve (finally) made a decision.

I had a second consultation and the consensus is -- yes, I need surgery. The doctors primary concern is the fact that my breathing (and sometimes heart rate) is affected by this, so the operation should get done fairly soon (probably within three weeks).

We suspected I might need surgery already, because my symptoms have been slowly getting worse. The pain and twitching is harsh but not horrible (yet). Every time I assess my situation (and my day-to-day life), it seems like there are fewer and fewer things I am able to do. I catch myself thinking up excuses about what’s causing the pain. I blame it on working too hard, the rain/barometric pressure, menstrual cycles, looking the wrong way for too long, sitting for too long, standing too long, laying down for too long and a million other things.

A few days ago I woke up to this wonderful feeling of Release and everything felt great for a day (these Releases can last anywhere from 10 minutes to 2 days). The oddest part of this particular Release was that I could breathe. I didn’t realize how much the Chiari was affecting my breathing until I could finally take a deep breath. Then it hit me, I hadn’t had a good, deep breath of air for a couple of months. My breathing had been slowly getting worse, gradually so that I didn’t notice it. Since then I’ve paid more attention to it, and day by day, it’s been getting worse. I just don’t have the ability to fully open my lungs. It feels like there’s a chamber in my lungs somewhere that just won’t open.

We got some feedback about the first doctor I saw (Dr Finizio), and he didn’t have anything wrong with him that I (or anyone I knew) could find. We checked every medical association we could find and everything came back good. I had a friend check to see if he had any lawsuits and that came back clean. I even had someone check on his professional status and found out that he is teaching for the University of North Florida. Our final test for him was to get a second meeting where Aaron and I go in and grill him with a million tough questions. I started out by saying I was sorry that I needed to meet with him for another consultation, but I had a lot of questions. Through this whole thing, I have seen several doctors who considered me “just another appointment” that takes up their time with another medical problem. I was happy to find out this doctor understood our concerns and answered our questions thoroughly. He explained the surgery to Aaron (as if he had never heard anything about Chiari before), just to be sure we were all on the same page. We went through a list of 25 questions or so. Some were simple and some were more complicated (such as – “Do you do anything that is technique specific, that may differ than other Neurosurgeons?”). He took his time, answering in terms we could understand. It was a refreshing experience. The best thing that he said was that he has done the type of surgeries that require removing whole parts of the skull, fixing whatever is needed inside (removing tumors and that sort of thing), and putting the skull back in place. Because of this expertise, he called my surgery a “chip shot” in comparison (wow). The hospital where he works is the Head Trauma Center in Jacksonville (people get flown there when in need of extreme emergency care), so I suppose it makes sense that he has done really complicated head surgeries before. He’s done my surgery more than ten times, all with positive results (no two Chiari’s results are the same).

We had this meeting a week ago, and I have been letting it sink in, and I’m really excited to get this done. I can’t wait to get back to my normal life. I miss going to the movies. I miss being able to lift more than 10 pounds (on a bad day, pouring soda into a glass from a 2 liter bottle can make my arms and upper body go numb in seconds). I miss a lot of things I never knew were important until now. I had a friend ask me recently, “What’s the first thing you’re going to do once you’re healed?” My mind immediately filled with a few million things that I haven’t been able to do, like play with the dog, or make dinner, or clean the house, but the thing I miss the most is being able to make plans. As it is, I never know when I’m going to be able to do anything. I’m in pain a lot of the time, so I have to plan everything by how I feel at that moment, and that’s frustrating.

I’ll let you know as soon as the official date is set (the doc’s people and the insurance co are still “coordinating”).

J

I'm part of an email support group where people email in questions about symptoms and surgery and a million other Chiari related stuff. Because many of these people have just joined, they are uncertain of their futures and not used to the pain yet, a lot of the emails are negative. There are a lot of people who get nervous about the surgery because of complications that others have had and question on whether or not to do it.
I have sent many encouraging emails to people. In the emails I explain that I am in pain all the time and if I have the surgery then I probably wont have pain. If something goes wrong and I do end up with pain for the rest of my life then I am no worse off than right now. I found statistics that said 85% of people a very much better, 13% stay the same (better than getting worse daily) and the other 2% can feel worse but they usually have other problems too (not just the Chiari).
Below is an email from someone who explains the surgery in laymans terms and make it easy to understand. Hope this helps everyone understand a little better.

The main question she replied to was "Why does it hurt so much after surgery?"

The reply was
Okay, but it's gross.

It's painful because your head nerves are sensitive, and they take quite a beating. But you get over it after a while, and you do forget the pain. If you've ever experienced labor, it is a lot like that - you know you had lots of pain but you can't recreate a memory of what the pain felt like. It's just gone. But it did come from somewhere real at the time. Here's where:

During the surgery, your head gets split open. The docs have to cut open your scalp, take apart all the layers of skin, membranes, connective tissue and muscle, and clamp them off to each side to make a nice open place to work on the bone. Your soft tissues do not appreciate this at all. They think of all sorts of things that they will tell you later when you wake up.

Then the docs use fancy versions of basic shop tools -- drills, saws, tile cutters, box cutters, rasps, files, pliers, tweezers, clamps -- to take off a piece of skull about 3.5 cm square. If there's anything more to do under the skull, they have to poke around and nip and tuck the soft tissues that are covering the brain. And they might even have to get out the wood burning set to cauterize the end of each cerebellar tonsil -- that part IS the brain.

Your brain is not happy about being jostled, poked, cut, burned, and and exposed to air. It complains and bleeds and swells. So the docs have to wash it with salt water and chemicals to keep it from getting infected, cauterize blood vessels to keep the blood from getting out and squirting around the room, and they have to give you drugs to keep your brain from swelling itself into tightness or dysfunction.

After all this excavation, they have to do a sewing project to put you all back together. So they get out their needles and vicryl threads, and they sew lots of tiny stitches close together. If you need a bigger fluid-holding pouch in the back of your head, they make one for you out of whatever they like best -- a piece of cow heart membrane or a dead person's skin, or even a goretex patch. Yuck, right?

Some docs prefer to use a piece of the patient (oh why not??), so they extend the cut up the back of your head and reach under the scalp and pull out a piece of pericranium -- fancy word for thin, muscle-y stuff between your scalp and your skull. They make a goodsized patch out of it and sew it onto the spot on the bottom of your head where it meets your neck, right over the hole where the skull piece is missing. Then they sew and sew and sew until all the layers are more or less back where they used to be. And then, for
good measure and because it is fun, they staple the outer layer of skin to itself with a couple dozen or more metal barbs. It looks like a zipper, which is why Chiarians are sometimes called zipperheads.

Then they wrap up your head with an ace-type bandage, pump you full of pain meds, take out your breathing tube (oh yeah, you have one of those plus some IV needles) and then they tell you something about how well it all went, but you have no idea that they are talking to you.

Later you wake up and everything hurts, even things that are not part of your own particular body, like the bed and the room. You have managed to blend with your surroundings and are at one with the universe. How generous and noble in any other context, right? But in this context it stinks. Everything hurts.

But, fear not -- soon you will do one of three things:
1) die from it all (no, not really)
2) make lots of enemies with your dramatic complaints and tears (pretty good chance of that, I've ...um... heard)
3) or bear with it for a few days and then snap out of it and go on to live a glorious life in much better shape than you were before the surgery.

Okay, there's also a two-and-a-half, which is somewhere in between, and lots of people get stuck there for a while. But eventually most people do go on to choice number 3, and they escape from the world of Chiari. We don't hear much about them because they are living happy lives out there in the world, hardly ever (if ever) visiting wacma and telling us their stories.

So, now you know the whole truth. It is gory and weird, and it is gonna hurt! But you are going to march or dance or be dragged right through it and come out smiling, because that's how the game goes. We'll hold your hand, and we'll listen. We'll probably cry with you during the sad and scary parts, and we will laugh with you during the zany and funny parts. And we'll celebrate when you tell us later that you feel so much better.

I'm a science geek and I think that stuff is really really cool.

Fruity Hair

So, quite a few of my friends have asked me about shaving my head when it's time for my surgery. I have had requests from my photographer friends that they be here for what has turned into "The Grand Shaving Ritual". Since I'll probably never have a mohawk in my life, we will start by shaving my head into the shape of a mohawk, then we'll shape it into spikes with hair gel/glue (maybe colored spikes?) and take pictures. Maybe I will have long spikes and then short spikes and then bald? Who knows, I have pretty long hair, so the stages should be interesting. Pictures will show up here. Stay tuned.

World Arnold Chiari Malformation Association

I sent an email to one of the people at the World Arnold Chiari Malformation Association. I basically asked how to go about getting a second opinion and/or doctor stats and I got this very in depth email ...

General Information Text- By Bernie Meyer (E-mail internautbhm2@comcast.net)

Most of the ACM information we have is posted on our information pages linked to our home page at http://www.pressenter.com/~wacma to include a global list of doctors with ACM experience, a list of possible symptoms at the '97 Survey link and a list of questions to ask your doctor. The USA doctors' list can be found directly at http://www.pressenter.com/~wacma/usdocs.htm.

Many of our members get some relief using our ACM symptom alleviation methods posted at http://www.pressenter.com/~wacma/bhm-list.htm The methods are not instantaneous so give them some time to reduce symptom intensity. These methods are important with or without decompression (see below). Try these before opting for surgery. If a syrinx (spinal cyst) is present, surgery may be the only option. The decompression surgery typically reduces the size of the syrinx or eliminates it completely. I highly recommend the symptom
alleviation methods and practice them routinely.

The following doctors are considered the top ACM experts in the USA based on member feedback and publications: Drs. Batzdorf (CA), Oro (MO), Menezes (IA), Frim (IL), Heffez (IL), Weingart (MD- Johns Hopkins), Milhorat & Bolognese (Brooklyn, NY) , Carson (MD- Johns Hopkins), Epstein (NY), and Ellenbogen (WA). Note: The last three doctors are pediatric neurosurgeons but they do treat adults on some occasions.

Most of the doctors referenced above will review your MRI's sometimes at no charge. Call the offices and ask. The TN's are listed on the doctors list referenced above. Decompression is the surgical procedure of making more room for the descended cerebellar tonsils that are now in the brain stem area. It involves making an incision in the back of the neck, enlarging the hole (foramen magnum) where the brain stem passes into the skull and in some cases removing a small part of the C1 and C2 vertebrae. The latter part of the procedure requires opening the dura, the membrane surrounding the spine. It needs to be patched with a graft from the patient or from other sources such as a synthetic fiber membrane.

Not every decompression is completely successful for many reasons. Scar tissue formation is suspect in many cases.

The cerebellar tonsils are not put back in place in the decompression operation. Therefore neck stress/strain reduction/elimination will always be important.

Make sure future MRI's are done in dynamic (CINE) mode. It is the normal MRI except they use special software to monitor the spinal fluid flow. This is done via a small electronic clip/ band put one of your fingers or via EKG clips in conjunction with the MRI. Some ACM's interfere with spinal fluid flow and that is the reason for this test. Make sure you get a copy of the MRI for sending/bringing to other doctors. Ditto for your previous MRI's and get copies of the reports that were made along with them. These are rightfully
yours. A full spinal MRI would also be helpful if a syrinx is probable based on symptoms. There are pictures of MRI's on the anatomy link to out Onsite Info pages http://www.pressenter.com/~wacma/anatomy.htm ). If a syrinx (spinal cyst) is found, then decompression surgery may be the only option. Syrinxs typically will disappear or be greatly reduced in size after decompression since the spinal fluid will return to normal.

Some ACM experts prescribe the diuretic, Diamox, for ACM symptom relief. Some of our members get relief from it, some do not. Supposedly the Diamox reduces the amount of spinal fluid that is formed thereby reducing the pressure on the ACM. Make sure you review the side effects.

In general, we do not recommend chiropractic treatment for ACM's. The practitioners are not experienced and typically adjustments increase the compression on the ACM.

Recent data show that any type of herniation can cause symptoms either because the ACM is wider than normal or the cerebellum is compacted. Have your doctors review the recent paper by Dr. Milhorat et al. Dr. Milhorat (Brooklyn, NY) is one of the top neurosurgeons in this field. The reference is :
http://www.pressenter.com/~wacma/milhorat.doc

An ACM can be inherited. Typically a review of your family's neurological history should reveal if that is a possibility. The typical triggers for acquired ACM formation are: whiplash especially from car accidents, head trauma from a fall or blow to the head, improperly administered epidurals/spinals especially during child birth, or difficult birth delivery as in forceps delivery where the child's head is traumatized and an ACM forms.

Bernie Meyer, diagnosed in '89, WACMA staff, Not decompressed , age 59, married 29 yrs, wife Judy, three kids, ages- 23, 26, 28, symptoms of tinnitus and minor balance are stable

Here are pictures I took while in the doctor's office. The MRI and vertabrae pictures have information on my Chiari problems and the operation I will have done (hopefully soon).

Neurology

Today was my first neurologist appointment.
I had something sent to me in the mail that said I had an appointment at 11:15 and then I was sent another paper that said I had an appt at 3:30. They had different doctors names on them so I assumed that there were two different appointments. I was told by my regular doctor that they were going to give me an MRI so I assumed that’s what was happening today. The memory of the first MRI was REALLY stressing me out. On the way there I had to pass an accident on the Matthews Bridge. For those of you that are not in Jacksonville (FL) the Mathews Bridge is very narrow with only two lanes and no room for an accident (more stress). But luckily I am smart enough to leave extra early so I got to the hospital with a couple of minutes to spare. I got lost in the hospital (more stress) and ended up being late to the appointment by a few minutes (not bad considering the accident).
When I get there, there is no nurse at the desk that I need to sign in at for 50 minutes but the desk across the waiting room says she will be there soon. After she shows up she says that my appt at 11:15 was moved to 3:30. I told her that I only rcvd these two pieces of paper and nothing stating that the 11:15 appt was cancelled. She then shows an expression of remorse and says that I should have been called (some poor nurse just on the screw-up end of the stick). She offered to call the doctor to see if he could see me earlier than 3:30 (he was at a clinic in a different part of the hospital). I asked how soon I needed to take the Zantax (to relax and have less pain) for the MRI and she looked at me confused. She then said that this was just a consultation. Hmmm I’m not sure if that was good or bad but it lessened my stress level. But the other problem with this non-communication is that I don’t have my list of questions that I need to ask with me.
So I entertained myself with text messaging Aaron and friends and then got into the examination room at 1:15. Since I recently took up photography I took a bunch of artistic pictures with my camera phone. Cool pics.
Around 2 or so the doctor came in. His first question freaked me out. He asked “So why are you here?” and my first thought was EEEKK!! What the hell does he know!?!?! So I told him “for the Chiari malformation” and he clarified his question by asking what led me to finding out about the Chiari. (Whew!)
First I had to explain to him what “rolling my neck” means. I wasn’t willing to show him by doing it (last time caused all this crap to start) so I showed him by putting my hands gently on his head and rolling his head in the same motion that I did the night all this twitch stuff started. I’m explaining to him what I’ve explained a million times before. I mention that the freak-out-twitch sessions usually started by my breathing being cut off for a second or two. He started to ask about the breathing part a lot. This is odd because I’ve never been able to get any doctor to care that my breathing has been cut off by this in the past. He asked if I ever had shortness of breath and I told him yes (more often lately) and I told him that I yawn a lot when I lift my arms in the air. Lifting my arms in the air releases the pressure back there and I am then able to take deep breaths (I can’t take really deep breaths without my arms in the air). Apparently there is part of the brain (back there) that affects the breathing and it is probably getting pushed on by the Cerebellur Tonsils also, causing my breathing problems. Before, when I couldn’t get a doctor to care that I had breathing problems I just assumed that the muscles in my back were so cramped that they were constricting my lungs somehow. Good to know I’m not crazy and that this really is causing breathing problems.
He then said that the breathing thing really worried him and he thinks surgery is the best (I expected this). We then discussed the risks of the surgery.
Infection, Bleeding and Brain Fluid Leakage.
The infection is possible with all surgeries, I suppose, and as long as I take good vitamins and do lots of Reiki all will be good. (I’m a real positive thinking type of person)
The bleeding is caused when they are done and seal things up. They wipe up as much as they can but sometimes it still continues to bleed. If I have problems with that they will go back in and remove the clot. (not too big of a deal)
The leaking of the brain fluid is rare and he says it hasn’t happened to him yet (and my first thought here was YAY he’s done this surgery before!!). I guess they have some way of sealing the fluid in but sometimes a pinhole leak can happen and they can then go fix it.
I’m sure if he screws up something there are more complications that can happen, but he seems to be on the ball. My inner thoughts are somewhere along the line of “good to know”.
So I tell him that I need to think about it and discuss this with my Husband and family. I imagine he has to talk people into surgery so he goes into The Benefits of the Surgery. It was as if he was trying to convince me that this is a good idea. I told him that I have a lot of faith in medical science and I would like to do the surgery. He then got more relaxed and we started to discuss what’s involved.
Once I decide to go and get it done, it will be about 3+ weeks to run tests and get me prepped. Afterwards it will be about 2 months before I’m back to normal. He says that I won’t be bed ridden but I will be doing a lot of not-much. I have a friend that has an aunt who just went through this surgery (another spinal freak – how odd). She had an infection (urinary) so she was in the hospital for about a week and was walking around the hospital just a couple of days after surgery. Again my thoughts are “good to know”.
He took my MRI scans and put them up on that lit thing (that they use to view X-rays). He showed me clearly where the problem was and pointed out the part that’s interrupting my breathing. The parts that are hanging down are easy to spot but the other part I never would have noticed unless he pointed it out. And after that I asked if I could take pictures of the MRI with my camera phone (I have a really good camera on my phone). So I will have those cool pics to post and share soon.
So now I need to go get the second opinion and I have a friend that has suggested The Mayo Clinic. I hear they are awesome doctors (who write the books on how to do this surgery) but I don’t know if my insurance covers health care there. But the world famous Mayo Clinic is right here in Jacksonville so I guess it would be foolish not to at least check it out.
And if I decide to go back to this first guy I still need to have another “consultation” so I can bring my list of questions. I got a lot answered but my list probably has questions I forgot about.

And now I have to tell work about this so they can prepare for my leave of absence. And it has nothing to do with if they will let me go and it has nothing to do with if I will still have my job – that is definitely not the case. My job loves me dearly and will support me no matter what. My current boss is the best corporate boss that I have ever had (which I discuss daily with my coworkers). He has true concern for my well being and personally wants the best for me. Luckily they are about to hire an additional manager so it should be easy to train someone to do what I do temporarily. I now need to check on a disability leave. Ugh. More stress.

I will post pics soon ...

Well since I can't really do anything too active and it makes me feel better to walk I've taken up Photography for entertainment. On the top left is a link to my pictures.

My MRI reports and scans

Well I just got my copies of the first MRI and they are really cool. It clearly shows my brain leaking out of the back. I have sent an email to someone I trust (my aunt Joany) to try and figure out if I can copy these pictures somehow without destroying them. When I went to the hospital to get "copies", thier copier wasn't working, so they gave me the originals. If I screw up the only copies in existence that would be very uncool.
So hopefully, I will find a way to post them but maybe not. If I can't get them copied before my next appointment, I will try to ask the doctor (a real Neurologist finally) if I can get a copy of a few of the pictures.
Thurday, I go to see an actual neurologist and hopefully I can get more info on everything involved.
Oddly I've been waiting so long for the pain-causing MRI that I'm actually looking forward to going to get it done. I really want to get this stuff moving. I'm sick of parts of my life being on hold. Even just talking to the neurologist will give me some ideas as to when or if my life will ever get back to normal with no pain. The not knowing anything is worse than the pain that I can ignore.
I'll post more after Thursday.
love Neener

The latest news about my back ...

OK
So now after the VERY long wait, I have an appointment for the second MRI in a week and a half. Oh how I can’t wait for that torture again!!!
It took the doctors and insurance over two months to get their shit together and arrange for me to get the second MRI. Now the Neurologist will look at my second MRI and someday make an appointment to speak with me. This will be cool since I haven’t been able to talk to anyone but my regular doctor yet (and even she is a nurse practitioner). I’m trying really hard not to be whiny, but this crap started in mid January and the ability to speak to someone who has done more than research the internet will be REALLY cool. I love my doctor (nurse practitioner I suppose) but she doesn’t know specifics of things such as, which types of exercise is OK for me or which ones can do permanent damage. I was a pretty active person before all this and she gave me very low risk exercises that don’t do much. My muscles (mainly in my back and shoulders) are cramped up all the time and not exercising them at all has really made my muscles feel weak and tired. As much as I want the neurologist to take his time in diagnosing what’s best for me, I really want to get these decisions on my future health moving. So far he hasn’t done anything but look at the referral note that my doctor sent him. That basically told him how far the cerebellar tonsils stick out – he hasn’t even seen my first MRI pictures. He needs copies of the first MRI pictures when I go in. Maybe I can scan them and post them so we can all see Neener’s brain. How cool is that.
As far as the painful MRI, my sister Jennifer had a GREAT idea – she suggested that I ask the doctor for one Valium pill (or something similar) so that I can hopefully get out of there with only a little twitching. The last time sent me into one of those freak-out attacks that shuts everything down bit by bit.
Luckily I hadn’t had one of those attacks in a long time (not since the last MRI I think). And in general I’m still the same. I hurt all the time, some days are bad (normally not) but it’s all basically something I can handle. The doctors and insurance are now fighting over which pain medicine I should be taking. They wanted to give me something that the Insurance company doesn’t want to pay for (Vioxx I think) so we have to go through a trial period of a few to see how they work first. The first one they gave me was Nabumetone and that did a lot less than the Tylenol Arthritis so I went back to Tylenol and am waiting for the next suggestion from the doctors/insurance. Hopefully the cheaper versions of the “real” medicine will do well too. My only problem is that I’m not sure if the kind-of pain I’m complaining about is fixable with medicine. The Tylenol Arthritis now takes care of the pain that is associated with the weak and weary muscles and joints. What I want to go away is the pain that “just doesn’t feel right”. It’s more a constant twitch that happens to make my muscles cramp up – the twitch is kind-of like when you hit your elbow hard and your arm is numb/painful. Except with this, it's less, but it never really goes away. It just goes up and down in intensity. And it’s mostly on my back and neck but I’m learning how interesting the spinal cord is when I get stray pains in other parts of my body. I can get an odd tingle/pain anywhere from my third toe to somewhere on my stomach simply by turning my neck the wrong way. If I wasn’t such a science geek then none of this would seem very cool to me but the spinal cords just affects everything.
But in the end I am doing well and am going through this quite well. If I ever have even the slightest problem with anything Aaron is always there to help. He truly is wonderful and extremely helpful too.
Love to everyone and I will post more when exciting things happen.
Jeannine

Background Story ...

I'm going to kind-of back date some of my story so that everyone who has a vague idea of my problems will get the info on what's happening (or what's happened so far).

This is something I wrote in an email to a friend (on February 9th) and it explains how all this garbage started. It was before I knew what this was so the info is a little out dated ...

I'm starting my 4th week of back problems that the doctors can (I guess) do nothing for. A little over 3 weeks ago I came home from a party with back pain - no big deal - I thought I just twisted something so I figured it would go away.

A week later we were watching a movie at home and I was trying to roll my neck to work out whatever the problem was - and one thing I've learned from this whole thing is NEVER ROLL YOUR NECK WHEN YOU HAVE BACK PAIN!!!! So I rolled my neck to the left and got a twinge of pain shooting through my jaw - In my mind I assumed this was where it needed to be worked out so I rolled my neck in the same direction but a little farther (stupid). My neck felt like it was floating in pressurized deep water and then the sharp shooting pains started in waves stemming from my neck. First it went through my jaw like before but much more painful, then one of the waves went through my neck and cut off my breathing for a second or two, and the waves kept shooting through my body until my whole body was frozen - I tried to move, jump up or anything but couldn't for 2 or 3 minutes (panic!!). So when my body finally did move I shot out of the chair and tried to shake off all the weirdness. After talking it out with Aaron and after my body calmed down a few minutes later I decided that I didn't need the ER and that I would get checked out by a doctor next week. The next day I took a muscle relaxer and slept for a very long time and woke up with no pain at all - I assumed problem was solved. (And I'm lazy so I didn't call the doctor since the problem was "fixed".)

So a week later we were watching a movie at home again and I don't remember rolling my neck but I must have looked in a wrong direction because it happened again. This time I was able to get up fast before my body shut down again but I could feel the sharp pains and could only breath short breaths (caused by panic). So I go to the doctors the next day and they do bloodwork that comes out normal and take xrays that I've heard nothing about yet. The doctor tells me to go to the emergency room the next time. So that night I go to the emergency room because it happens again - the emergency room doctors (after 4 hours) do nothing but prescribe a few Vicoprofen and suggets an MRI (which they probably wouldn't do if I didn't tell them that my whole side of my dad's family has had back surgeries). At this time I have actual back pain to go along with it - my looking radius that I could move was only about 2 inches in either direction (up, down left, right).

Ok so that was then.

Since then I have gotten back the X-ray that says my neck curves in the wrong direction. The MRI (which was very painful and caused another freak-out session) revealed the Chiari 1 malformation. There is also some degenerative athritis which is causing a lot of my pain. The neurologist (who I still have not been able to sit down and talk with) wants to send me for another MRI (oh joy!) to get more pictures of my head so that he can see how this is affecting the rest of my brain.
For those of you who haven't gotten too much info, a Chiari 1 malformation is some sort of defect that doesn't show up in people until they are adults (average age is between 35 - 40). The cerebellum has "tonsils" that hang down (called cerebellar tonsils) and mine are hanging down in the hole in my skull that my spinal cord goes through. This causes them to press down on my spinal cord and set off all sorts of strange body reactions.

The doctor gave me Tylenol Arthritis and that has unexpectedly fixed a lot of the pain. The only thing that bugs me now is the actual spinal cord part of this. I now can have no pain and turn my head in a specific direction and my arm will twitch or if I put my neck/head in a certain direction it will make me feel nauseous. It's kind-of interesting to see which parts of my body are affected by that part of the spinal cord. The freak-out sessions I was having at first now don't happen - or if they start to happen I can recognize it and walk slowly around the house and take slow deep breaths to ward it off. When my body does go into twitch mode Aaron can touch the front of my neck and feel the twitch that goes from the base of my skull through to the front of my neck. It feels very creepy to have your body do things all on it's own.

Well, I will write more later.

Thanks to everyone for showing me SOOO much love. I never realized how loved I am until now. I get daily messages and emails from a lot of friends and family.

Thank you all so much!
Neener

World Arnold Chiari Malformation Association

"Staffed by volunteers, the World Arnold Chiari Malformation Association is committed to providing support, current information, and understanding to those affected by the Arnold Chiari malformation and syringomyelia."

Head Pic

This is the best picture I've found that shows what's wrong with my brain (some of you have seen this already). It's earned me the lovely nickname, "Leaky Brains".

OK...
So I'm kind-of lazy.
But I promise I'll put up some info in a few minutes...

Mr. Petey

Welcome

Hi. I'm creating this to keep everyone informed of everything going on with me and my leaky brains.