Thursday, December 13, 2007
Thursday, December 6, 2007
I saw Dr. Oro on Monday and it ended up being up there on my list of the happiest days of my life! I had my MRI in the morning and my follow-up appointment in the afternoon. Dr. Oro did all of the neurological tests and went over all of the symptoms that I had prior to surgery. I told him that they were all gone and that I was officially "boring". Nothing noteworthy on the medical front at least.
He showed my mom and I my MRI images and it looked rather weird (weird as in odd/unusual, not bad). There's a ton of room now compared to before (but not too much that there's anything to be worried about). He was very pleased with my progress and how well the surgery resulted. I told him that I honestly felt better than I had ever thought was possible. He said that given the extent in the herniation, we'd probably had a little help from the big guy upstairs - I'll take it!
I don't have to go back for any additional follow up appointments. I only need to avoid bungee jumping, sky diving, and roller coasters - no great loss there as I'm not a big fan of heights anyhow. I asked about child birth since I'm hoping that's in my future and there is some debate over whether or not women with Chiari should have natural/cesarean or natural/epidural. He said that my Chiari wasn't a reason to automatically have a c-section so not to let a doctor talk me into it for that reason alone. He also said that as long as the epidural was done correctly, that shouldn't be a problem either.
We all got a little teary-eyed and hugged each other (including Dr. Oro). It's a really amazing thing to find a doctor that truly cares about his patients and shares in their happiness. He asked if he could use my MRI images in his blog on Chiari Times, because there is a lot of debate as to the best surgical methods to use and Dr. Oro's clearly worked for me and was the least invasive method. I offered to help in anyway I could! He gave me an amazing gift and if sharing my experience can help even one person, I'll feel that I've paid that gift forward.
Tuesday, November 27, 2007
Saturday, November 24, 2007
My hair is growing back at record speed and it occurred to me today that I could just get extensions in my boy hair and save myself the trouble of dealing with the super short hair. I might even left Jason do it...frightening I know.
I am 100% normal and I feel so much better than I can ever remember feeling. It's funny that 4 weeks ago I thought I was 100% and I realize now that I maybe felt as good then as I did before surgery. Now I feel WAY better than that and it is truly unbelievable. I really cannot wait to get cleared by Dr. Oro a week from Monday and be able to do anything I want. It's crazy! I never thought I'd be able to do half of the stuff I can do now, and I'm still restricted.
I started decorating for Christmas today and it wasn't until my mom asked me how I was feeling that I even remembered that there was a time when I would have been in excruciating pain doing even the simplest things.
I'm going to bed now since it's 4:30 AM, I might sleep til noon, but I'm enjoying every minute of my life now!!!
Thursday, October 25, 2007
She told me to stop being chicken and start turning my head so my muscles don't spasm. What she failed to consider is that muscle spasms seem normal to me. So I'm going to start moving my neck around more and improve the flexibility.
As of this upcoming Tuesday, I can start lifting 15 pounds - that means I can start loving the puddy properly - YAY!
Monday, October 22, 2007
Sunday, October 21, 2007
I'm thrilled that Chiari got national exposure tonight!!! This is by far the most important thing!!!!
I'm a little disappointed in how much ABC dramatized the severity and symptoms.
I can't blame the Carter family for how they were edited.
I'm disappointed that such emphasis was put on the possibility that Chiari is hereditary. Moms feel bad enough for their kids that have Chiari - this just made them feel that it was their fault that their kids have it. The statistics on passing Chiari along to your kids is 12% if you have it. I look at it this way: I know I have it, I know it's possible that I could pass it on to my kids one day, I'll look out for symptoms and have them tested early.
Most people with Chiari don't die. Yet there was significant emphasis placed on the possibility of death from Chiari by ABC's editing. (I visited the Carter's website and don't believe that it's anything they intentionally emphasized.)
The Chiari Support Group on Yahoo (great site!) is now flooded with people panicked about the possibility of dying from Chiari and of passing it onto their children.
At least the nation has heard about Chiari!
Thursday, October 18, 2007
Monday, October 15, 2007
3:15 PM Update - My sister just left...total time spent with me today? 3 hours and 6 minutes. :) She promises to be back tomorrow.
Sunday, October 14, 2007
The hubby is going back to work tomorrow and my sister is staying with me all week. Does anyone want to take a bet as to how much time she actually spends with me? :)
Let's see...lots of visitors this weekend and lots of food! Thanks for visiting and for all the yummy food everyone!
I took one extended necessary car ride today. I NEEDED a pedicure so my mom and aunt took me to get a pedicure and my eyebrows waxed...then we stopped on the way home to pick out the paving stones for my backyard, then I transferred cars and went with the hubby to Lowes to get a pressure washer.
Then I went to the hubby's softball game (they won!) which is at a park that is 2 miles from my house. So I suppose that was two car rides, but I consider them both necessary for my sanity. I took a nap in between if that makes it better?
I plan on going back to work in 2 weeks. I feel pretty good now - just a little tightness in my neck and I get tired easy. I'll probably work from home a lot at first until I'm used to sitting at my desk for hours on end.
I've noticed that I can smell things better now. It's kinda weird, but I smell the air freshener in my car when I never really used to before and I can still smell the flowers I got from Will's work and his parents. Pre-surgery I would only be able to smell flowers if I held them to my nose. I noticed this in Colorado at Margot's when there were 3 bouquets of flowers in my room at her house. I didn't think much of it though until I got home.
Wednesday, October 10, 2007
The flight home was uneventful - the titanium plate with 32 staples did NOT set off the metal detector - I was a little disappointed.
I did not use a wheelchair, thus walking the Denver Airport from curb to gate B25. Hubby upgraded our seats so that we sat in the first row...totally smooth!!!
I got home and caught up with everything, which is what got me in trouble.
If you call/text and I don't answer, I promise I don't hate you...I'll get back to you ASAP and I really appreciate you thinking of me!
Tuesday, October 9, 2007
Monday, October 8, 2007
This photo was taken today, a week after the bruise was first made by the nurse. This is from drawing blood for the pre-op blood work. I have NEVER bruised from having blood drawn. (And that's happened a LOT as evidenced by the scar from where scar tissue was removed - lower center).
This is a photo of my left wrist/hand where my original IV was until the nurse pretty much blew it out Wednesday night. The big dark freckle is actually the scab from where the needle was. The whole back of my hand is still sore and there is a slight lump where my once functioning vein lived happily.
This is the back of my head on Saturday the 6th. It was compared to the photo on the 4th after the hubby said "Wait a minute..." after checking the back of my head for me. Everything matched up, false alarm. :)
This one was taken today...yes my hair really is as nasty as it looks...currently sporting the mickey mouse ears hairstyle. Ridiculous, but keeps the hair off my face and neck. It's a test image for the official EASY button/Staples photo I will take before the staples come out on Friday. I have a sick sense of humor, I know. :)
Thanks to the hubby's excellent blogging - with timelines! - there's not a whole lot for me to add. Thank you bunny!
Today I woke up feeling pretty "normal". I got up and read on the couch until the hubby woke up, then took a bath which is my second favorite thing, next to Margot washing my hair (which I hope she does tonight - pretty please?). I got dressed in my now custom Sharpie shirt (a little off the back so my staples don't catch), put my contacts in, and plopped back on the couch.
And now, I present to you, my head...more specifically, the back of my head. (Please note how quickly my hair is growing back.) If these pictures give you the heebie jeebies, I'm sorry - I've had several requests for them though and I think they're kinda cool...there are 32 staples by the way...I'm a little sad that there weren't 33 :(
This was taken on the 4th about 48 hours after surgery...Dr. Oro was very pleased with how it looked. This is right after he removed the bandage. I wish you could see my hair style - it was literally pulled into a ponytail on the top of my head that fell to the left side. The rubber band? The bottom of a rubber glove. Styled by my favorite nurse the whole time I was in the hospital...I just can't remember her name because it was something unique and I was still groggy from anesthesia. She is a traveling nurse from NY and we talked about how pleasantly different people are in CO compared to our home states.
I'm having trouble uploading the rest of the photos to Blogger right now...I'll try again later.
Sunday, October 7, 2007
That's about all she wrote for this time around. She isn't quite up to getting on here and typing yet, so please be patient! :)
Friday, October 5, 2007
Hopefully she will be feeling up to blogging tomorrow. Talk to you all soon.
Thursday, October 4, 2007
I arrived at the hospital a little after 8 this morning, and Jenn was resting in bed. She wasn't feeling that well. I noticed that her IV needle had moved from her left hand to her right arm, which was really bugging her. The doctor came in, and he was asking how she was feeling. She had gotten pretty sick last night after I left. The doc pretty much nailed it as to why she was getting sick. She was taking Percocet for pain (and my mom would tell me later that pretty much everyone gets sick from that). So, they switched her to Vicodin and that seemed to do the trick. They made Jenn order breakfast so she would have some food before she took the Vicodin. They wanted to leave the IV needle in just in case she needed the Phenigin for her stomach. Jenn was not happy about this. This was compounded by the fact that had she been switched to Vicodin yesterday, she probably would have been out today! Hence the medicine mix up, get it?? :)
About 10 AM, Jenn got out of bed and she walked up and down the hall. This made her feel better almost instantly. She ended up sitting down and walking around most of the day. She was able to even walk out into the waiting room the entourage has gotten to know so well. The doctor came in and visited with her briefly, but said she couldn't take out the IV needle until 5 or 6. Also, he didn't mention any time line as to when she will be able to be discharged from the hospital. Jenn was not very happy about having to leave the needle in.
While the doctor was in, they removed the bandage exposing her stapled head. It didn't look as bad as I thought it would. I have a picture, but I will not be posting it until I get the go ahead from the patient.
At about 4:45 PM, Jenn's day was made: the nurse removed the IV needle from her arm. That was about the happiest I have seen Jenn since her surgery!
I went and got Burger King for Jenn for dinner, which she was happy about. The hospital food for the patients is not as good as in the cafeteria for some reason. She ended up eating most of the chicken fries I got for her.
At about 6:30 PM, Jenn wanted to get back in to bed so she could see the television. By this time, she was extremely bored and really wanted to get out of the hospital. Shortly after getting to bed, Jenn went to sleep, and I ended up leaving the hospital at about 8:15 PM.
I am glad people all of you are satisfied with my blogging. I strive to upkeep Jenn's high standards when it comes to blogging. Hopefully Jenn will be able to make an entry tomorrow night. I am pretty certain that she will be getting out of the hospital tomorrow.
Wednesday, October 3, 2007
8:15 AM - We arrived at the hospital to visit. Of course, Jenn points out that we are 15 minutes late. She said she was not feeling very well and asked us to leave. She ended up getting sick and they gave her Phenigin to relieve her nausea. So, since this stuff puts her to sleep, there's no sense in sticking around, so we head off to Starbuck's and Margot's house.
11:25 AM - We arrived back at the hospital and she was sitting up in a chair. She had also walked up and down the hallway a couple of times. She really wants her catheter removed. A call is in to the doctor to get it removed.
12:45 PM - Jenn ordered her first meal, which consisted of a grilled cheese sandwich and pudding. While waiting for her meal, Jenn got nauseous again. The nurse gave her more medicine to settle her stomach.
1:15 PM - Jenn ate her meal with no problem. After she finished she got back in bed to take a nap so we decided to leave her alone.
2:15 PM - I went in to check on her and she was sound asleep so I decided to let her be and headed to the waiting room.
4:00 PM - I went back into the room again and she was awake, but she was still in bed. The nurse came in and informed us that she was officially a "floor patient" which means she is not hooked up to any more machines. However, she is still in the ICU. The reason is because there are no beds for her to move to. Jenn was okay with this, however, because she is ensured of having her own room until being moved. There are three other patients that are awaiting a regular room. We are unsure about when she will be leaving the hospital.
5:30 PM - Jenn orders her dinner (mac & cheese and ice cream) and Margot and I are sitting there with Jenn. She seems to enjoy Margot's company more than anyone. Perhaps this is because the three of us talk about regular things as if we weren't even in the hospital. Also, she knows that we will be staying with them once she leaves the hospital so she wants to be nice to her hosts. Jenn was tired after eating dinner, so the entourage goes to dinner at BJ's (yes, there is a BJ's here in CO).
7:50 PM - We arrive back at the hospital to see Jenn one last time for the day. Jenn's mom was anxious to see Jenn, so right at 8 we went in to see her. Jenn was awake, but she wasn't in that great of a mood. Jenn's mom stayed in for about 5 minutes then left to let Jenn's aunt come see her. She just wanted to say good night to her, then she sent Mom back in. Mom said goodbye to her, and then about 5 minutes after Mom left, I decided to leave and let Jenn rest (which seemed perfectly fine with).
Hopefully Jenn will be feeling even better tomorrow and will walk around more. She needs to walk around because it will help in her healing.
Also, I want to thank all of you for all of your concern and prayers. Jenn will really appreciate it (once she actually gets to see it!)
Tuesday, October 2, 2007
5:15 AM - Jenn and her entourage (as she calls us) arrive at the hospital.
5:35 AM - Jenn taken into the preop area.
7:15 AM - We meet with the surgery team to go over everything before the surgery.
7:25 AM - Jenn is given her "happy drugs", we hug her and she is wheeled off into the OR. (Jenn would later tells us that us hugging her was the last thing she recalled prior to the surgery).
8:15 AM - Call from Claude (RN) to inform us that the surgery is officially underway.
10:15 AM - No word from the OR since the call from Claude. He had told us that we would be updated every hour. We hope that this is a sign that everything is going well.
10:45 AM - Claude just called us. The surgery will take longer than expected. There is additional bone that needs to be removed, which the doctor told may be the case. However, the nurse said she is doing very well.
12:15 PM - Four hours in and Jenn is still in surgery. We have not heard anything since the last update. As far as we know, the surgery is still going well.
12:30 PM - Just heard from the OR again. They are closing up the wound and she should be sent to recovery in about 30 minutes or so. The surgery went really well. We should be meeting with the doctor shortly.
1:30 PM - Met with Dr. Oro. He said the surgery went well, and he was very satisfied with the results. The surgery took longer than expected because the brain herniated down to cervical 3, which is rare. Also, cervical 1 was fused to the skull bone (which the doctor had suspected). So, he cut away some of the skull and cut away cervical 1, and shaved down cervical 2 and 3, leaving plenty of room for the brain. He stated that the left tonsil of the cerebellum than the right, which is normal. Because of the herniation, there was a cyst on the left tonsil because of all of the pressure and rubbing that was going on in there. Also, they did end up installing a titanium plate. Now that we know Jenn is safe, the entourage is off to get some lunch while Jenn is in recovery. Hopefully we will get to see her in about an hour.
2:00 PM - We finished with lunch and decided to take some of our stuff back to the car. This is not a short trip. Jenn's mom and aunt had to go to the bathroom, and while Jenn's uncle and I were waiting, we ran into a gentleman from Texas whose wife had the same procedure done by Dr. Oro in March. He said he really liked Dr. Oro, and that a lot of the things that bothered her prior to the surgery went away. It was really nice to hear that, and quite a relief.
2:30 PM - We get to the waiting room of the ICU. We are told that Jenn will be in recovery for about 10 more minutes, then the nurse will need to spend about 15 minutes with her after that. So, we had a seat in the waiting room.
3:15 PM - The nurse came in to see us. She said it took longer to get her up there than she thought, but she was ready to see us. She was very groggy, but she was doing good. She said her shoulders hurt more than anything. All she wanted was ice chips and to be left alone. She did mention that technically her "tonsils" were removed, and wanted to make sure that made it in the blog. Yup, our Jenn is just fine. :) We decided to leave Jenn alone for awhile and let her rest.
4:40 PM - Margot arrived at the hospital and her and I hung out with Jenn for awhile. Jenn seemed to be doing better and she was a little more talkative. The first time we saw her she really didn't want to talk. She was allowed to lay on her side, which made her feel more comfortable. Also, she was given Sprite by the nurse. Margot and I decided to have fun to see what we could do to change her vital signs on the monitor. She was quite amused by our little game. Another sign that Jenn is already on the road to recovery. Jenn told us that she would rather us not come back after dinner, so we left her at about 5:20.
Hope you all enjoyed the update. I will let you know tomorrow how she is doing.
My mom wants to meet us downstairs at 5:10 AM...which means we need to leave the room at exactly 5:00 AM or we'll be "late".
I was ready 10 minutes early. So I felt compelled to say "hi". I'm mildly nervous, but mostly excited...kinda like Christmas...I can't wait to see what's going to happen!
Gotta go now...I have a feeling there will be a bunch of photos taken to document the fun. I consider it blog material...actually I'll probably make a book o' surgery.
TTFN - Ta ta for now!
Monday, October 1, 2007
When I met with the nurse this morning she asked if I was anxious. Actually, what she asked was, "You've got to be pretty anxious about the surgery, right?" Quick thinking Jenn said "Yes, a little". I figured that if I said no, she'd send me off to the psych ward for an evaluation.
Seriously, I think I'm the least worried about the surgery than anyone else. I'm looking forward to seeing how I feel post-op and what changes for the positive. Really, I promise. :)
We landed in Denver about 2:30 PM and Margot picked us up. We went back to the Hart's beautiful house and started cooking dinner while Will tried to get Rockies tickets for that night. Margot made her mom's chili (with a little improvisation) and left me with the task of making cornbread from scratch. All turned out edible and quite tasty and then we headed off for the stadium.
Totally scored with free parking in a semi-residential area and took the random photo found here.
We then hiked all the way around the stadium getting our tickets from Will Call and then to our seats in far left field. It was a good game and the Rockies won against the D-backs - YAY!
We went "home" to the Harts and went to bed.
Slept in ridiculously late. Margot (aka Rachel Ray in training) made us delicious caramel apple cider and baked banana nut cranberry bread - also very tasty. The Hart's had various commitments, so the hubby and I headed off in the Mini Cooper to explore Highlands Ranch aka find all of the nearest Starbucks!
About 3:00 Margot returned home and then drove us to take photos for our Christmas Cards (planning ahead - besides, this way I can address them all while I'm sitting at home). After our photo shoot we went to Aaron's work and had caricatures drawn of us...neither couple looks remotely close to what we actually look like, but they were free and good for a laugh. (He actually works at a retirement resort and they were having some sort of event for staff and residents.)
We had tri-tip, strawberry spinach salad, and garlic bread for dinner with another couple. The girl had just had eye surgery, so Aaron's prayer before the meal went something like this: "Dear Lord, we pray for Jamie as she recovers from eye surgery and also for Jenn as she has brain surgery on Tuesday." We couldn't help but laugh at how pathetic and depressing that was. Margot made Apple Cobbler for desert which was tasty even though she disagreed and promised that she'd make it again for all of us next weekend. Oh Darn!
Most important thing to note thus far: Margot is an excellent cook!!! I highly recommend staying with a friend that can cook pre- and post-op!!!
We played a game of Sorry! and went to bed.
Starbucks and then off to the hospital for my appointment at 10:00. They did all of the lab work and I met with a nurse for all of the pre-op questions and we were out of there at 10:30!! Seriously LOVE The Medical Center of Aurora!
Went to Target to get slipper socks and a comb. Yes, I selected the bunny slippers and the cow jumping over the moon. :) Got Margot's must read book "Twilight" from Barnes & Noble and then met Margot for lunch at Heidi's Brooklyn Deli (meatball sandwich on wheat bread = VERY tasty!).
Went back to the Hart's packed up the necessities for the next few days (staying at the hotel right across the freeway from the hospital tonight - Will's going to stay here until I'm out of the hospital/when my mom/aunt/uncle leave). Back to Starbucks and then to Dr. Oro's office for my 2:00 appointment. He went over the MRI and surgery with us (again for me, first time for the hubby). Decided that he wanted a CT scan for his road map tomorrow and asked his poor scheduler, Shelly, to get one done before my surgery. It was then 3:00 and my surgery is at 7:30 AM tomorrow. Like the trooper she is, Shelly calls the radiology department and listens to them LAUGH at her. Then they make an appointment for 4:00 - how cool is that?!
I'm kinda excited that I had the CT scan. Since June 29th, I've had, 4 MRIs, an EKG, AND a CT scan. If I had to pick one, I'd go with the CT scan - it's quick and quiet.
Dinner at Chili's with the Harts and my mom and aunt. Margot has been referring to it as "The Last Supper" which I find much more humorous than "my last meal" as I've been calling it. Queso and Cajun Chicken Pasta = YUM! Leftovers go to Margot for lunch tomorrow.
Now we're sitting in the Holiday Inn and I'm trying to get sleepy so that I go to sleep soon. I've got to be at the hospital at 5:30 tomorrow morning. Ugh, that's early!!!
Thanks to everyone for the prayers, happy thoughts, comments and text messages. Will (aka the hubby) should be on here nightly with updates until I'm back to blogging.
Wednesday, September 26, 2007
I'd like to thank everyone for their concern, good wishes, and prayers! Apparently I know more people than I thought I did and you all seem to be genuinely concerned about me - who knew?! :)
The most common question that I'm answering these days is whether or not I'm getting scared/nervous/etc. As I explained to the hubby, this is sort of like our wedding - anti-climatic - allow me to explain...
I'm a planner and despite the somewhat apparent messiness of my car/house/office, I'm organized and a list maker. I planned every last detail of our wedding, so the actual day felt somewhat anti-climatic because I knew exactly what was going to happen and how everything was going to look. Don't get me wrong, it was wonderful and one of the best days of my life, but there weren't really any surprises (other than a wax incident during the ceremony and the best man's speech - not even a late cake delivery stressed me out).
I've planned every detail of the trip - and then created a 3 page itinerary for my entire family and close friends including ALL of the pertinent details. Everything is planned out (including meals, snacks, and entertainment). So again, it's anti-climatic. But that's okay...I don't think surprise are a good thing when it comes to brain surgery :)
Oh and thanks to everyone that has loaned me books and DVDs!! I can't wait!
Sunday, September 23, 2007
If you have any suggestions for things to do post-op that don't involve lifting anything over 10 pounds, reaching, or straining your neck...please offer!
Monday, September 17, 2007
I was writing out an itinerary for my upcoming trip to Denver (2 weeks to go!) and mentioned that I was being VERY OCD about the whole thing.
You're allowed to be OCD when you hear spinal fluid gushing around.
I found this really funny...Apparently this grosses many people out...it just seems normal to me. :)
Two more weeks and I'll get to experience a whole new normal!
Saturday, September 15, 2007
Wednesday, September 12, 2007
Wednesday, September 5, 2007
Tuesday, August 21, 2007
At the appointment we met with the nurse practitioner who went over my medical history with me and then translated everything into medical language for the doctor. He came in and asked a few more questions, did some basic neurological "tests", and then went over next steps. He wanted MRIs of my thoracic and lumbar spine, as well as a x-ray of my entire spine since I have scoliosis. He wanted to do everything immediately since I was in town. Keep in mind that it's after 11:00 by this time and I have a 5:15 flight home.
Since they were squeezing us in at the Imaging Center we had to wait an hour, for the hour long MRI. Mind you this is all happening during lunch time and everyone is still very pleasant and helpful. I finish the MRI (which I think has to be the world's LOUDEST MRI machine - it was my third MRI in 2 months so I consider myself qualified to make that statement) and they have arranged to do the x-rays on site, rather than send me to yet another center for the x-ray of my entire spine in one shot (at the facility I was at, they had to do it in 2 shots). After that they uploaded everything onto their network and we headed back to Dr. Oro's office for my unscheduled follow-up appointment. We waited 15 - 20 minutes and then met with the doctor. While we waited we talked to a lady from Kansas that was there for her second surgery because her first doctor didn't do the first one correctly. She showed me her scar and it was impossible to see despite the fact that her hair was cut very short. YAY!
Dr. Oro was VERY thorough and explained everything in layman's terms and answered all of our questions. While sitting there, I decided that I was definitely having my surgery at TCTC! My mom agreed, and it's not very often that we agree with each other without some level of debate. We scheduled the surgery for OCTOBER 2ND. Shelly went over EVERYTHING with me on the spot with instructions on what I needed to do before I arrived back there for surgery, along with ALL of the paperwork and forms I would need. As we were leaving we met the office manager who grew up in Southern CA just minutes away from where I grew up and still live.
We left Dr. Oro's office at 3:15 and made it to the airport exactly in time to return our rental car, eat a quick meal at the Taco Bell by security, go to the restroom and arrive at the gate 5 minutes before boarding. How cool is that? Everything just sort of fell into place and seemed right.
The absolute clincher is that my wonderful friend Margot and her husband Aaron live in Highlands Ranch about 15 minutes away from TCTC. They have generously offered to allow me/us to stay with them before and after my surgery and for my follow-up visit 8 weeks post-op. They are a lot of fun and excellent hosts and made me feel at home, away from home.
I've cancelled my other appointments in CA and have had zero second thoughts. I'm actually kind of excited to have the surgery and see how my quality of life will improve!
Not sure if anyone is interested in the surgery details...if you are, let me know and I will email them to you. Dr. Oro is now using a titanium plate as part of the procedure...I think it's kinda cool that I'll be a "metal head"! :)
Some additional details:
-I have at least a 31mm herniation putting me in the top tier (of course, I go all out when I do anything!)
-I may have a slight syrinx, but he is not concerned with it.
-Dr. Oro was unable to conclude that my Chiari caused my MIA period, but he was also unable to rule it out...
Friday, August 17, 2007
Now that I know what causes my symptoms, I've been experimenting to see what makes them worse or better. The longest I can sit/stand is about 4 hours and then I need to do the exact opposite. If I walk too much, bend over too much, lift too much, or pretty much do anything but constantly change my position and activities, I'm uncomfortable. It's like my body has ADD. Trust me, I don't do a whole lot. I go to work and sit on my butt all day, come home and walk my little dog, then rotate between my computer and lounging on the couch or in bed. On weekends, I do laundry and pick stuff up and put it away. It's a slow process because too much of any one thing and I'd be miserable. When I've done too much I take some ibuprofen.
I haven't been to the chiropractor in almost a month. Because I've been taking it easy, my mid and lower back haven't really hurt and when they start to, I can usually crack it a little myself since I'm now fairly loose.
Sneezing and coughing give me the piercing headache/head rush. I want to go to the gym or the lake or finish my new house, but I know that if I do I will surely get a miserable headache and end up in bed. As it is, I've had 2 "8" headaches (on a scale of 1-10) in the last few weeks. I've been lucky in that they both started coming on at the end of the day and I was able to take ibuprofen and lay down right when they started.
I've also been drinking more caffeine which is supposed decrease the number of headaches. In retrospect I did have many more severe headaches when I gave up soda/caffeine in the past. It's not the best thing for me, but it's better than getting the headache and taking more ibuprofen.
In a nutshell, I'm in survival/make as comfortable as possible mode right now. I'm anxious to see what all three doctors have to say.
Friday, August 10, 2007
The nice part is that if I looked out of the corner of my eye to the right I could see out a window. The bad part is that doing that made my head hurt and it was quite warm in the room.
After the test started, I was laying there listening to the MRI noise when I closed my eyes and felt like I was spinning. (This has happened a few times when I've laid on my back before but I'm not sure if there is a connection.) I opened my eyes and started taking deep breaths, careful not to move my head. I resisted the urge to wave my hand to alert the technician that I was having a panic attack/about to pass out. It was scary, but it passed. The MRI lasted an hour. About half way through they shot me up with some contrast dye. Very uneventful.
I was a bit surprised when I got to go pick up the MRI images virtually immediately from the hospital. Keep in mind that at St. Jude they wouldn't let me pick up the order for the MRI without seeing the doctor and at Pomona Valley I could see inside my head right away. Very cool! I'm just not sure what it's supposed to look like. I guess I'll find out on the 20th!
Sunday, August 5, 2007
Note to the husband, mother, and auntie: I'm sorry that I was crabby at the lake. In addition to the pain, I was extremely frustrated that I couldn't do something that only 2 years ago was something that I could do with mild discomfort. To suddenly feel hindered and helpless is something that I hope you never have to experience. I love you all for putting up with me. If nothing else, this weekend convinced me that I want to have the surgery.
Tuesday, July 31, 2007
Monday, July 30, 2007
Thursday, July 26, 2007
Tuesday, July 24, 2007
Why the delay you ask? Because I have to pick up a CD of the films from the hospital and bring it with me to the appointment and I didn't want to risk not being able to get them in time for the only other available appointment on the 13th. Since this isn't life or death, I'm low on the appointment priority. They have to leave openings for the really serious neurological people.
I'm going to call and make an appointment with UCLA. The doctor there is on the medical advisory board for ASAP (found that out in the info I got yesterday) so I might as well get his opinion while I wait to hear from Colorado.
Monday, July 23, 2007
I also received an info packet in the mail from ASAP that includes a TON of good info. (Why they can't just post it on their website, I don't know, but that annoys me.) The info is good and I'm going to read through it thoroughly when I'm done here. They have a Medical Advisory Board that will refer you to specialists in your area. (Again, why not on the website?) I will (of course) be looking into the specialists that are local.
I mailed my MRI CD off to The Chiari Treatment Center in Colorado today and will wait to call them next Wednesday if I don't hear from them before then.
I went to the chiropractor after work and he adjusted everything below my neck and massaged my neck to relieve some of the tension. My neck is still really tight, but NOTHING like it was before I started seeing him three months ago. I realized that my smaller neck (as a result of relaxing some of the muscle spasms) is what is causing MANY people to ask if I'm losing weight. That works for me! :)
Saturday, July 21, 2007
I answered some questions over the phone and they asked me to mail them the CD with my MRI films. I'm making a copy of it this weekend and mailing it to them on Monday along with a list of my symptoms.
Once they receive it the doctor reviews everything and then they'll call me to schedule an appointment if they deem me worthy of their time. (I feel like I'm applying to college or something).
Keep your fingers crossed!
Oh and I'm still waiting the approval from my insurance for the brain MRI. The neurosurgeon didn't submit medical records indicating the need for the second MRI - having taken a medical billing class I understand why this is necessary - most people (including insurance billers) don't. They submit them (they have to mail them which is really lame), the insurance company has an RN, and maybe even a doctor, review them and then they grant their approval. Again, it's like I'm applying to college or something.
Monday, July 16, 2007
This makes me happy...not only have I seen Dr. Oro's name all over the Yahoo Support Group site, but their website was very informative and user friendly. Dr. Oro is one of the BEST neurosurgeons in the US specializing in Chiari and they are located in Colorado. Now that would initially seem like it's far far away, but I have a friend that lives in Highlands Ranch, CO which is only about a half hour away from Aurora. How happy am I? Even better? They have an EMAIL ADDRESS to schedule an appointment and ask questions AND they accept my insurance. THIS IS SERIOUSLY THE BEST THING I'VE FOUND!!!!
Sunday, July 15, 2007
I was the first appointment of the day and yet I waited about 30 minutes before the doctor came in. He's a young doctor and new to their practice. He came in, did an evaluation, and then asked if I'd brought anyone with me. Up until that point it hadn't even occurred to me TO bring someone with me. My husband was at work as was the rest of my family. I was certain he wasn't going to recommend surgery and even if he had...I'm the one person in my family that can handle blood, guts, and medical stuff.
He took me back to his office and showed me my MRI film. Let's just say it looks a little more significant than the report made it out to be. He recommended surgery. Since I hadn't really thought this was the route I'd be heading down, I didn't feel accurately prepared. I asked the questions that popped into my head.
Next steps include an MRI of my head (the original MRI was just of my cervical spine). Based on my later research, I'm also asking for an MRI of my entire spine. This is to give us a baseline so that we can monitor closely post-op. I also want it to see what parts of my brain have been affected already (this will give me confidence that my symptoms have been all in my head - literally!) After the MRI, he's prepared to do surgery.
I left the appointment and faced the biggest challenge thus far - tell my husband and family that I need to have brain surgery. I debated over who to call first. I picked the husband and called to tell him at work. He had a lot of questions, some that I could answer, some that I went home to research. Then I called my mom and did the same - she wanted me to take everything to the chiropractor immediately. So I did. (How happy was I that I was on vacation and that the chiropractor takes walk-ins?)
The chiropractor asked a lot of good questions - Is the surgery really necessary? Is it really necessary right now? What happens if I don't have surgery? Again I went home to do more research. That was just a week ago, but it feels like a lifetime.
I stumbled across The Chiari Institute in New York's website with all of the informative videos - that answered a LOT of questions. It made me comfortable with the fact that I should have surgery in the near future before I develop some of the more severe symptoms. My history indicates that I will keep getting more severe symptoms as time progresses and the younger you are, the better you handle and recover from surgery. In looking at the success of the surgeries, it looks like the move advanced your symptoms, the less likely they are reversed by surgery.
Now I'm just waiting for approval by my insurance for the brain MRI (this is taking much longer than the first time - I don't think it's my insurance, but the doctor's office that is delaying this process - I need to start hounding them to get the ball rolling).
Once I get the MRI results back, it will be time to interview neurosurgeons and get additional opinions on whether or not I need the surgery. Through my research I seem lucky to have a NS that wants me to have the surgery without trying prolonging the inevitable. My challenge is that he is young and thus less experienced. Few doctors are experienced in Chiari, so this doesn't automatically disqualify him. I just want to find someone familiar with Chiari and have them evaluate me.
It seems that the big hubs for experienced Chiari surgeons are at The Chiari Institute in NY, in the mid-west, or at the Mayo Clinic in Arizona. I'm obviously willing to travel to get the best care, but because I'll be in recovery for so long after surgery, travel will add an additional expense and stress that I'd like to avoid if I can. The top neurosurgeon at UCLA Medical Center in Santa Monica, CA has a subspecialty in Chiari! That was a great find! Additionally, I have a friend who's father is a retired orthopedic surgeon that referred me to one of his neurosurgeon friends at UCI Medical Center that has experience with pediatric cases Chiari. After I get the brain MRI, I'll make appointments with both the UCLA and UCI neurosurgeons and see what their evaluations are.
Wish me luck!
Sunday, July 8, 2007
More on the amenorrhea - both times resulted when I stopped taking birth control pills. The first time was shortly after we were married and I had determined that my migraines coincided with a specific week in the pack of pills (Ortho-Tricyclen). I stopped taking them to see what would happen to my migraines. I stopped the pills, the migraines were greatly reduced in both quantity and severity, but I also stopped menstruating. I went to the gynecologist and told her what I'd experienced. She did blood work and everything looked normal. She gave me progestin to see if I'd have a withdrawal period, I did and started taking Yasmin which she assured me was a lower more consistent dose that wouldn't cause more migraines. Period returned and after about 6 months, so did the migraines.
This continued until I'd had enough. The husband and I decided that while we weren't going to try getting pregnant, I'd stop taking the pills and we would just see what happened. My period was normal for about 6 months and then stopped. That was in November of 2006.
When I had gone to the doctor the first time for amenorrhea she had mentioned that my weight gain was most likely the cause of it. When it happened the second time, I was sure that my weight was to blame and promised myself to start doing something about it in the new year.
January 3, 2007 - I walked into 24 Hour Fitness and signed up for a membership with 5 personal training sessions to get me started. I was committed for all of January and February and was starting to see results when I noticed that my back and neck were starting to hurt constantly in early March. While at my company's sales conference in mid-March I wore a name tag around my neck for 5 days straight. I carried my cell phone, chapstick, pen, and a few papers inside of the name badge holder. My neck was in extreme pain for about a week after I returned, which I blamed on the name badge holder and the amount of time spent in the plane flying from coast to coast.
I waited for it to get better, but by the beginning of April it still hurt. I went to see my doctor about the neck and back pain with the hope of getting a breast reduction which I believed to be the cause of my chronic pain. For the second time in my life I wanted to punch a doctor. He said that it was stress related and not a result of my chest size. He said that I could have the reduction and still have the same type of pain because of stress. He prescribed muscle relaxers and pain medication and ordered x-rays "just to make sure".
When I got the results of the x-rays and saw that something was in fact abnormal and that an MRI was suggested, I called the doctor's office to have them schedule the MRI. They refused to do so unless I came into the office first. The first time I saw the doctor I had to wait almost 2 hours before he saw me. I told that to the receptionist and asked if they could just order the MRI since there was nothing they could do without that. She again refused, I vaguely recall yelling at her and hanging up on her (having worked in customer service for my entire working career this is definitely out of character for me).
In frustration, I called my mom who suggested that I go to her chiropractor who had helped her with her neck problems. I called and made the appointment for that Saturday (how cool is that?!). I handed the doctor the x-ray report and waited for what he would say. He explained the report and then explained what my treatment should entail. He said that I should consider a breast reduction and I literally burst into tears (also out of character for me - I am not a crier).
In addition to the treatment with him, he recommended a new primary doctor for me in Chino Hills who I promptly went to see. Her office was amazing and gave me referrals for an MRI and for an orthopedic surgeon on the very first visit.
Regular visits to the chiropractor led to great improvement. From my shoulders down I had very little pain compared to what I had a few months prior. My neck was still very tight and at the very top it felt like something was "in there" - an odd pressure that just wouldn't release.
Due to vacations and work, I wasn't able to schedule my MRI until the end of June. My doctor's office called me 2 days later and told me that I had Chiari Malformation Type 1. They were referring me to a neurosurgeon and asked that I come to their office to pick up the referral and report. This was July 3, 2007 and thankfully I was on vacation for the remainder of the week. I picked up the info and went home to schedule the appointment with the neurosurgeon and began researching Chiari.
Saturday, July 7, 2007
Those of you that know me know that I never like to settle for being "average" or "normal". Since birth, I was coached and taught to be the best at everything that I did. The result? 4.0 GPA in high school, 3.0 in college (graduating in 4 years while working full time the entire time). I got engaged within months of graduating college, married the following year, we bought our first house within 6 months of marriage and our second home 2 years after that. I'd say that classifies me as an overachiever with a slight case of OCD.
Unfortunately, I also overachieve on the medical side of things. Before I was born, my mom and dad were told that I'd have water on the brain. I was so scrunched up into my mom's ribcage that I had a rib mark in my head when I was born via c-section. The doctors at Children's Hospital in LA checked me out and dubbed me "normal". I wish they'd have been right.
All was "normal" until the summer after I turned 10. I developed appendicitis but no one seemed to know what was wrong with me. By the time the doctors figured it out, it had ruptured and gangrene had begun to set in. In a nutshell, I almost died, and when I finally pulled through and was being released from the hospital, the surgeon actually said to me "you didn't say that it hurt as bad as it did". I was 10. I apparently have a high tolerance for pain. The surgeon is lucky I didn't punch him.
In junior high everyone gets screened for scoliosis in PE. I (of course) got one of the little letters to my mom recommending that I go to a physician for further screening and diagnosis. I had x-rays. My curvature was borderline...meaning I was just off the hook for requiring a brace or further treatment.
About that time, puberty hit and I began getting headaches/migraines, morning nausea and nosebleeds. My mom gets migraines so that much seemed to be explained. No one ever figured out the nausea. And the nosebleeds were infrequent enough that it was difficult to find any correlation. I spent a lot of time laying down and reading - it was just more comfortable. Occasionally when I would get up off of the couch, I'd experience dizziness or vertigo and sometimes a ringing in my ears. I was really skinny and ate like crazy. My menstrual cycle was irregular - ranging from 5-8 weeks in between periods or more. Severe cramping and heavy bleeding, often accompanied by headaches/migraines.
In high school, it was more of the same. I was more active (Colorguard and Dance) and would have difficulty finding my balance in pirouettes. I was never a great dancer, but I got by. My sophomore year, I was practicing for a parade and slipped coming out of a turn and partially tore my ACL. I had an MRI on my knee, but nothing further.
College - morning nausea subsided somewhat (that or I learned to manage it better). Headaches/migraines worsened when I began taking Ortho-Tricyclen. Nosebleeds continued periodically. Typically my nose would bleed, then I'd have a second nosebleed within 24-48 hours, then I wouldn't have another for 2-3 months. I developed a fear of heights working in retail and climbing ladders. In retrospect it may stem from the fear of falling as I've lost my balance on a ladder enough times to have been scared. I began gaining weight - I attribute the gain to working and going to school full time and pretty much living on fast food. I got promoted to a desk job and gained even more weight. Sitting for most of the day caused my back to hurt - which I attributed to scoliosis. I saw a doctor for neck and shoulder pain and he said that it was stress related. I suggested that perhaps it was related to my chest size (I was roughly 5'6" 140 lbs and a 36D). He said that it was most likely stress. Feeling like it was all in my head, I went on with my life.
To summarize the symptoms through college:
-headaches/migraines (those that make my head feel like it is going to explode - my entire head hurts but the primary pain spot is in my forehead behind my left eye. The only relief is to take 600mg+ of ibuprofen and sleep it off - usually by burying my head in a pillow).
-high tolerance of pain
-signs of neurological/spinal problems at birth
-dizziness/vertigo/ringing in ears
-irregular menstrual cycles when not on medication
This is just my story of my experience with Chiari. Until I was diagnosed, I'd never heard of it, and I just want more people to be aware of it. I'm not a doctor, so don't quote me on any of this stuff - k? If you are looking for information about Chiari Malformation, a lot of the more informative posts are the older ones.