... I'm Kristen, and I'm a blog-a-holic. I guess that's a good place to start. I'm 27, have a Chairi Malformation, IBS, Fibromyalgia and I want to be a mommy.... sometimes I have a lot to say, sometimes, I have nothing. This is one of those a lot times...
So, I'll start at the beginning.
From the time I was about 18 or so, (1999/2000) I always had some stellar and amazing headaches. I didn't know how to explain them, but I tried like hell to doctors.
My PCP at the time, still my pediatrician, had no interest in what I was saying. She told me that the amazing pain I was feeling were migraines, stress headaches, tension headaches, and at one point, told me to come off birthcontrol, because I may be having a stoke. Shocked that I felt healthy and awesome, and was being told I may be having a stroke, and noticing that she REALLY couldn't care less about my health and wellbeing, and just seemed to ask more and more questions about my "recreational drug use"... I opted to switch doctors.
The next PCP was really no better. She "sorta" listened. From the 1st day I walked into her office, I told her everything. Headaches, pain, feeling like I was going to pass out or fall over... again... I was told "tension and stress" headaches, and given an Rx for muscle relaxers, and occasionally vicodin / percocet. She DID send me for 1 Xray and 1 Spine MRI because I had pain in my back and hips. That was in July 2004. I only remember because my MRI was the same day as my mom's wedding. All that the MRI told her was that my hips were a little misaligned and I have mild scoliosis. I didn't understand why she wanted to look at my back and spine when it was my HEAD that hurt... but what ever. Needless to say, when she stopped listening, and just kept feeding me pills, I opted to look elsewhere, again, BUT I did make sure to get brand new 12 month Rx's for muscle relaxers and percocets.
So in early 2005 I decided to take my medical records and go to my current PCP, who might I add, is awesome. I told her everything, from the start, just like every other doctor. She put me on Imitrex for my migraines, and Flexeril for the pain that was getting worse and worse in my neck/shoulders. It worked for a little while. I tried to eliminate stress, and she didn't think it was a stroke. Score.
In about Mid-2006 I started getting really sick and losing weight at an alarming rate. I lost like, 15lbs in a weeks time. It was BAD. I couldn't keep any food in my system... and ended up having a really dear friend go with me to the hospital, where I was "admitted" (I was only there for a few hours) and given fluids because I was dehydrated. I told my doctor everything, and she immediately referred me to a Gastroenterologist. (Finally! A doctor who listens!) After a barrage of tests I don't care to ever go thru again... we determined I didn't have Crohn's disease, or colitis... IBS it is. I refused meds, but after a few more years, gave in and now Dicyclomine helps. A LOT.
so... time went on, and I tried to get on with life. In July 2006 the boy and I decided to start trying to have a family... but didn't have much luck...
More time passed, and I still had these ... what I dubbed "mini headaches" once in a while. Now, don't let mini fool you. They weren't. Let me help you understand what I was feeling (and still occasionally feel). [Put your hands on your head... over your ears, so that your fingers are on the back of your head, where the little ridge is. Ok... you found the ridge. Good. Now what I feel is this: imagine someone... a giant even, putting their hands there, digging them into your scalp straight to the bone, and them PEELING the back of your head off and up over the top of your head. That's probably the best way to describe them. My mini headaches were later changed to "Chiari headaches".]
... in July 2007 I explained to my PCP that the "mini headaches" were getting worse and more frequent... that I was having them anywhere from 10-40 times a day, and they'd last a few seconds to a minute. She said she STILL didn't think it was a stroke, probably just tension headaches, but sent me for a brain MRI to be safe. I went in mid-July and had the Brain MRI done... and since I never heard back from the doctors office, I figured all was good.
Then, the 1st week of August was MISERABLE. I ended up in the hospital... it was August 2nd or 3rd... I went to the ER because I thought I was dying. LEGIT dying. I REALLY thought everyone was wrong and I was having a stroke. I was laying on a bed in a dark ER room, crying. my head felt like the back of it was going to explode any second. I was throwing up, and I felt like My whole body was revolting against me. My hands and arms were week, and I felt uncoordinated. The ER nurse said she thought it was a severe Tension Headache, gave me a few percocets and muscle relaxers and left the room. An ER doctor then came in and asked me if I'd talked to my PCP. I said no, why? He said that there was something "abnormal" in my brain MRI, but that they couldn't discuss it, and they had called my PCP and I had to go in 1st thing tomorrow, they were holding a space.
AWESOME. I'm dying. I'm NOT having a stroke, but Something is obviously wrong. they just told me.... So I went home, took the pills and crashed for the night.
The next morning, bright and early, I went to my PCP's office... terrified. She brought me in and asked how I'd been... ha. really? So we started talking, and she tried her best to explain my MRI to me. She said she'd never dealt with this before, so she was learning with me. This was how she explained it to me:
"You have something called a Chiari Malformation. Picture your head is an apartment. Your skull is the walls and the floor. Where your spine comes into your head is like the plumbing coming up to the apartment, and your brain is sitting on the floor. Now... what's happening is that your brain is, well, it's too big for the apartment and is being pushed out of the hole where your plumbing is. That's what is causing your headaches. it doesnt go away, or get better, but it can get worse, possibly causing paralysis."
Funny explaination, but it said a lot to me. She referred me to a neurologist. I promptly went home and googled the shit out of Chiari Malformation.
I also called work, and went out on Short Term Disability. I was god-smacked, and I wanted time to deal with things as I learned.
I saw the Neurologist in Mid-August 2007. He was FANTASTIC, and is still, hands down, one of my favorite doctors. I see him about every 6months still. We went over everything, and he wanted me to see a Neurosurgeon to discuss surgery. *gulp* So I scheduled an appointment the 1st week of September for a Brain MRI, Full Spine MRI with and with out contract, and a Dynamic Flow study (to see how my cervical spinal fluid is moving), and to see the NS.
the NS told me that I did indeed have Chiari, but he wanted to try meds to see if I felt better, and referred me back to my Neurologist... then he took a 6 month sabatical, and I had NO ONE to go back to. ha. asshat.
Back at the Neurologist, we tried a bunch of different meds... Finally landing on Topamax, Baclofen, and Vicodin to control the migraines, body pain, and muscle pain. as well as Fiorecet for when my head hurt more and the Imitrex didn't help. I gave up a bit, and went back to work in December 2007.
In January 2008 I had a Mirena IUD put in since all the meds were NOT good with pregnancies (Topamax can cause Neural Tube defects)... and I was sure that the past 4 years of Percocet, Vicodin and Muscle Relaxers wasnt the best either... The dreams of being a mom were bent and dented, but not crushed totally.
the boy and I planned our wedding, then moved it to June 21st 2008, because, well, 1-we love eachother, and 2-we didnt know what the future held. I became his wife, and it was the most beautiful day, ever. It was also the 1st day in a long time that I didn't 'hurt' and that I didn't get a headache... until later after the wedding. but still!!
I kept going back to the Neurologist every 2 months... and was eventually referred to a Rheumatist for the pain that was also getting worse all over my body. I was diagnosed with Fibromyalgia, and my Rheumy was determined that the Chari was
exacerbating the condition. He stated that he really thought surgery would help, but that it wasn't up to him... but he'd call my Neurosurgeon and talk to him.
August 2008 I had secondary MRI's done for follow up, and then I went BACK to the Neurosurgeon. The Boy went with me. We were excited and hopeful because we really, really though that this would be the appointment that Surgery was discussed. We took the T in (Thank goddess for Boston's transportation system, gets you EVERYWHERE) and got to the appointment early. We sat in the waiting room for FOREVER (seriously, OVER an HOUR) then we were placed in an exam room, where we sat for forever AND a day. The Surgical Assistant came in and talked to me. We went over EVERYTHING, and he discussed surgery. I couldn't believe it. I'd been waiting and waiting for help. He went to get the Neurosurgeon, and then BAM.... seriously, BAM, the Surgeon walked in and said "NOPE. Your symptoms aren't caused by the Chiari. I recommend that you see a Neurologist and a Rheumatist and go from there". I was SHOCKED. I looked him dead in the face and said "I don't want to be brash, but my NEUROLOGIST and RHEUMY referred me to YOU. and you're refusing to help me? Are you Kidding? I want a 2nd opinion, I think you're wrong". He said OK, walked out, came back, the Assistant handed me a business card, and then left. NO words said. I sat there, looking at the boy in disbelief. We left. I never went back.
I called my mom that night to tell her what happened. She's an MRI tech, and she knows all about the Chiari and symptoms from Scanning patients. She tells me that she JUST scanned a woman with Chiari, who has a specialist in Boston who performed her surgery and her life has improved so much it's like night and day. My mom got her email address and was holding on to it. Hmmm... So I emailed her. Christine is her name. She's awesome.
Christine told me her story, and gave me Dr. Craig vanHorne's information. I called him, and I had my 1st appointment with him on September 11th 2008. My little sister went with me. Dr. vanHorne went over my MRI's, and all my information (they even sent me all the medical paperwork to fill out and bring with me, since it's easier on the patient that way!). Then, it happened. He looked at me and said he thinks I'm a great candidate for surgery, and the goal would be to signicantly reduce my headaches (there was no guarantee they'd ever "go away") and improve my quality of life. And he said he could do it any time... this month even.
We opted to wait until after the holidays, and schedule for January (besides, then my Short Term disability would reset)
The months from September to January DRAGGED. The cold months were excrutiating. My head, my whole body... just, pain. Halloween passed, then Thanksgiving, my birthday, Christmas and then New Years. None of which I could really celebrate or drink on because my meds didn't mix well with the alcohol. ... the 1st week of January I went in for pretesting with one of my friends, and I had to sign my surgical paperwork.... and on it... very clearly, it said:
"surgical complications include blindness, paralysis and less percentages, death"
The doctor was VERY quick to let me know there were NO recorded cases of this, but it had to be there. Then again, my biggest concern was how much of my head were they going to shave. But I knew that the benefits FAR outweighed the dangers. I was being temp. paralyzed now... and I was losing my hearing.. and I was miserable. What did I REALLY have to lose?
The weekend before my surgery we had a big "party" ... that was actually very emotional and surreal. That night, I realized I was having brain surgery... and that these people, my friends and family, were here to "see me off" just incase. I didn't cry... at least, not infront of anyone. My sister did that for me. I cried when I got home. I was scared, but excited.
Tuesday, January 13th 2009, at 5am I woke up....
we had to be at St. Elizabeth's in Brighton MA at 6:30. My mom and her wife drove us.
I got registered and everything... and after the "battle" to find a vein to give me my IV in, I was ready for surgery. My surgery started at 9am, Suboccipital Crainotomy, C1 Lamenectomy, Brainstem Decompression and a Duraplasty. (they removed a piece of my skull and part of my C1, then opened up the covering of my brain to make room for everything, and sewed in a patch to close it all up and make everything "fit better")
It was supposed to be about 3-4 hours. I woke up in Neuro-ICU at 5pm. I was doing great, but I had some complications. my surgery took just over 7hours, and according to my doctor, was the hardest surgery he'd had in years. They got everything done, but, in the back of my head they ran into an issue. See... in infants there are "sinuses" of blood that feed the brain. As the baby grows and grows, the sinuses close up.... Mine never did. They ran into a massive blood fest back there and had to take a TON of time fixing that. But it's all good... it also explained why when I had headaches I could feel my pulse. There was extra goodness back that. (I'm determined that the sinuses not closing up fed my brain and made it too big for my head. ha.)
I was in the hospital for 6 days. I came home on Monday, January 19th. (Sunday the 18th was my dad's birthday, and I felt terrible I was in the hospital for it!) My healing went incredibly well, and I was ahead of the game the whole time. The next day, post surgery, I was already sitting up and eating (even after being up all night throwing up from the Ambien and the Percocet on an empty tummy). The doctors had no idea how I was sitting up, I shouldn't have been according to them. My answer... I couldn't see the TV. ha.
I was HEAVILY medicated. Toradyl, Percocet, Morphine, Valium, plus I was still on my Topamax. oh.. and an Anti-nausea med, and I was on Keflex antibiotics. I spent the 1st night and the 2nd day in ICU, then day 3 I was moved to my own room. It was private too, I was shocked. By the 4th day, I was antsy. I got to stand, and walk! (I pissed off the physical therapist sent to help me... when we were walking, I told her how to do her job. Where to stand so that I didn't trip over my wires and tubes... and then, when she said "WOW, You're doing a good job" I responded with "Well, I've been walking since I was 2, I should be good". She never came back...) ANY time I could, I walked. When my sister came, when the Boy came... I walked. and walked. and walked. And I knew where the key to the Ice Cream was. ha.
Day 5 all my wires and tubes were out. I could get up to pee, and, I GOT TO TAKE A SHOWER! GOD THAT ROCKED! It was the 1st time I really got to see what my head looked like. I used my camera phone as a mirror. That was also the BEST shower of my life.
The whole time I was in the hospital, there wasn't a day that went by when the boy wasn't there. My sister was there ALL the time. I'm shocked she still had a job after! My mom, My dad, my brother, my friends... they all came to see me and check on me. I fell asleep a lot, but drugs do that!
Monday I was released. In a way I was sad... the nurses were so awesome, and I really enjoyed being taken care of!!! but I was happy to go home to my husband, ferrets, and home. We hit CVS on the way home, and I filled my meds. I walked around for about 45minutes in the store, and I was so proud of myself... Until I got home and I was in massive pain!!! ALL the drugs in my system had worn off.
I was on Percocet for 2 months, Valium for 20 days, and I had Baclofen and Vicodin for back up. I didn't think it was going to be enough. My heat pack and Ice pack were my best friends.
Coming home was very... humbling. I couldn't get out of bed the 1st week. I thought my head was falling off because the muscles were soo weak. Mr. Hubby had to pick me up like an infant. Craddling my head while I held onto it, and craddling my back to sit me up. Once I was up, I was fine, but it was GETTING to a sitting position that was tough.
I honestly thought that I'd be "good as new" after 4-6 weeks. I was wrong. at the 4 week mark I still couldn't turn my head. I was referred to a Physical Therapist in mid February... and I was happy to go. 2 times a week I went and she was AWESOME. I was cleared to drive the end of March... and that was the MOST amazing feeling.
On March 5th, after coming off ALL my medications (except the Dicyclomine for my tummy) I had the IUD taken out, and I was told that we're cleared to try to get pregnant... and that my healing was going awesome.
April brought my return to work and going down to once a week for PT.
Now we're approaching June, being in my 5th month of recovery/success and my 1 year wedding anniversary.
I'm still healing. It's going to be a while, but I have full motion back in my neck, I'm getting stronger and stronger by the day (Stronger than I was BEFORE surgery!) and healthier (I can walk now with out being in pain!) plus... my fibro symptoms have gotten better as well.
My incision is still hating me. There are spots that... leak, now and then... but I'm on Keflex antibiotics now, and they think it'll be fine soon. Just a little pocket of fluids, no spinal fluid leaks.
I seriously can't believe how much better I feel. I'm like a whole new person.... but there is still a long road ahead of me. Surgery isn't a 100% fix. It took me YEARS to be diagnose, it will take many more months to recover, and there is a chance that the symptoms can return, and I may need additional surgeries later in life. But I still wouldn't change anything for all the money in the world. I feel better now than I've felt in about 10 years.
I feel 110% better.... but I only feel about 95% myself at this moment. I can't even think about how crappy I felt before... it's amazing.
So far, my life's been one hell of a journey. Now the main focus in our lives is continuing to heal, and having a family. ..
that's what I'll be mainly talking about here... Healing, my Chiari... and trying to make a baby.
Stay tuned... It could get interesting.
