Hello, all!
I’m relatively new to this website and have never signed up for a forum before, but
I would just like to share with everyone my personal experiences with having a Chiari Malformation, along with my decompression surgery experience. Some of my information may seem a little personal, but hopefully someone will be able to relate and not feel so alone.
These forums helped me tremendously through my journey, between getting confirmation that my symptoms were real and I wasn’t crazy; and also with knowing what to expect with surgery.
I hope this will be able to help you as well.
My name is Kayla, and I’m a 21 year old female.
I was first diagnosed last July (2014) at 20 years old with Chiari Malformation: Type 1.
When I first went to the ER is when my symptoms really started to make themselves known.
Before any of the issues began to show, I had never really gotten headaches before, and if I did get a headache for some reason, it was nothing like the ones I began to experience around that time. They were what I’d call “normal headaches”, one’s that Goody’s Powder or a Redbull could just knock out.
They started out as just jabbing pains in my head; eventually when a headache came on, I would get blurred vision and my ears would start ringing. Nothing too debilitating , really, but it made work much more difficult and miserable.
I finally checked into the ER because they really started to concern me and they were interfering with my job; they did a CT scan to check and make sure my brain wasn’t bleeding- the doctor told me I was lucky I didn’t have an aneurysm or something like that, but they did find the Chiari and some other abnormalities on the brain, but he couldn’t elaborate on those and gave me a referral for a neurosurgeon (which I didn’t end up seeing one for a very long time, but I’ll get to that later.)
Moving forward, a couple of weeks later I had gone back to the ER because suddenly my left arm had started going numb- from the shoulder to the finger tips. Not exactly numb like I couldn’t feel anything, but numb like it was falling asleep- really uncomfortable and quite concerning.
The ER doctor said I have Neuropathy, most likely from the pressure on my spinal cord. He said there was nothing he could do and insisted I see the Neurosurgeon again.
Well, I ended up losing my insurance shortly after that, because Tricare is a pain and discontinues one after their 21st birthday, and I had to stop working because my ability to function properly was steadily declining. But that’s beside the point; anyway… I finally got all of that stuff situated again and got in to my Primary Care Doctor in October. First off, my PCM is completely useless for one, even with the proof he found every excuse he could as to why this can’t be causing me pain.
I also found out in October that I was pregnant. I was so happy, this was going to be my first baby; but honest to god, to this day, I believe the pain and stress caused me to lose it. I miscarried at 2months, which didn’t help anything at all.
So finally, by December, my PCM puts in an order for me to get and MRI to get a better picture of what was going on inside my head.
He, of course, didn’t show me my brain scan pictures or even bother to explain them to me; in fact I didn’t even get the opportunity to look at the discs until I pick up a copy of them to have to bring with me to my first neurosurgery appointment.
And between I think November and April I’ve been given every medication you could probably think of for “migraines”, which of course were bullshit, because I didn’t technically have migraines.
I had been given some things for headaches like Fioricet (which I think is the automatic go-to headache med from the ER), Imitrex, Maxalt, Topomax; tried me on Gabapentin for nerve pain (which made me have violent shaking episides), some “super strong” (as the doctor refered to it) anti-inflammatories, like Ketoprofen, Nabumetone and Indomethacin. They even tried to put me on Prednisone!
Plus a few other meds that were a joke. My PCM still couldn’t comprehend how ibuprofen didn’t help, it is the “miracle drug” after all -.-
None of any of these did a damn thing for me,of course. That’d be too easy.
I finally got my MRI done in December, and it because of more insurance complications I didn’t get my neurosurgery referral until mid-March. They told me their first available appointment wasnt until the end of April and I felt like I had lost all hope. Another whole month of agony to live with!
Between the time of my MRI and finally getting in to see the Neurosurgeon, my pain was so bad I could barely get out of bed. I have anxiety issues as it is and all this pain made it worse, especially going to bed at night; I was terrified to sleep, because I knew what the morning would bring.
I had SO much pressure in my head when I woke up (or got woken up from it, rather) that I would cry and scream.
Towards the end of my waiting time before my surgery my symptoms were crazy. I’d have that unbearable pressure in my head (kind of like, I had wished I could drill a hole in my skull to let it out- I could imagine it steaming like a tea kettle). I would get so light headed when I’d stand up, I’d collapse on whatever was next to me, and I literally couldn’t move or see. My hearing would come and go. I’d see black spots floating around all of the time. I had such terrible muscle weakness and numbness in my arms and legs, sometimes it’d get so painful I couldn’t move (kind of like when you lay on a body part too long and it goes completely dead, then the intense pain you get as the blood is rushing back? Like that). I was constantly nauseous, I threw up at least once a week. It was all so miserable. Every day I woke up, I thought “this is it, this is the day my brain is finally going to burst.”
So, as I mentioned earlier, by the time the Neurosurgery clinic got my referral, I still had a whole month of pain because that was their soonest available- I asked my doctor if this last type of medication didn’t work What we would do and he straight up told me “well hopefully by that time you’ll be seeing the neurosurgeon and you’ll be his problem then.” Great way to show you care about your patients.
And, also, about my not-so-helpful doctor, he refused to try anything else to keep me comfortable in the mean time since what he was giving me didn’t do shit, and told me to my face he was sending me to a neurologist in the mean time because they should be able to help with my pain and keep me somewhat comfortable at least since I had so long to wait to see the neurosurgeon. And the bastard lied and sent me to get a nerve conduction test for carpal tunnel… CARPAL TUNNEL! Of all things. Like, even IF I did have carpal tunnel, why would that be a concern of mine right now with everything else? Ugh. Incompetence. I told you he swore it was anything other than what was clearly shown on my MRI report.
So,just a warning to you all, make sure your PRIMARY doctors has some idea on what he’s dealing with. Do NOT let him try to tell you that you are fine, or that you can’t possibly be in that much pain. Only YOU know how YOU feel; and in my experience, doctors seems to think they know you better than you know you because they went to med school. Yeah, right.
Now, moving onward again to my surgery.
After a very long 3/4 of a year, I finally received a call from the Neurosurgery department to schedule my consultation, and they tell me it’s not for another month. What a hopes and dreams crusher.
Another month of hell, cool, right? I keep mentioning this, I know, but I was just SO disappointed.
So my appointment was just this last Friday: April 24, 2015. It was a very quick consultation- not a very chatty doctor, but he explained what exactly my diagnosis was again.
The hernia was 7mm, I also have a large posterior fossa arachnoid cyst measuring 11cm and a cyst in my right maxillary sinus at about 2cm (Which finally explained the “abnormalities” that the ER doctor couldn’t explain)
My surgeon felt that the cyst was nothing to be concerned about, so he wasn’t going to drain it; the cyst in my sinus wasn’t discussed, but I assume it’s okay since I’ve never had sinus problems.
I disagreed with his opinion on the arachnoid cyst however. I mean, it’s huge, covers the whole backside of my brain and I feel it contributes to the pressure in my head. There’s just no extra space for anything besides the brain in there. But i guess that’s what the surgery does, makes space… and he is the brain specialist, after all. I guess maybe later down the road if the surgery didn’t relieve enough pressure the cyst may be drained, who knows. Not that’d I’d ever ask to have this done again…
The surgeon told me surgery was really my only option; it was that or go to pain management and even then that wasn’t guaranteed to help my symptoms.
He said that my hernia wasn’t the largest he’s seen but it’s up there, and with the symptoms I was having, it was the best way to go.
I left the room from talking with him, crying. My mom was there waiting for me in the waiting room, and I was crying to her, telling her that he wasn’t going to give me anything until I had surgery; I was so scared that I’d have to wait another month or so before finally getting scheduled. I wasn’t upset that I was told I needed surgery, I had already been expecting that outcome, had discussed it with my family and was prepared to accept the option, had it been given to me.
The scheduling lady that worked for him was awesome. She saw how upset I was and how desperate I was for relief and she said she would do her best to schedule me for as soon as possible.
And let me tell you, she most certainly did!
As I stated earlier, my initial consultation was Friday, April 24th; she scheduled my procedure for the following week, Wednesday, April 29th, and my pre-op Monday, April 27th.
-Just in case you’re interested about what happens at pre-op: when I got to the hospital that I was having the procedure, I first went to patient check in, gave the lady my ID/insurance card and she made copies. They had me sign some paperwork- I don’t remember what they were all for, but I know one was giving the hospital permission to preform the procedure, one was giving them permission to bill my insurance company, one was that I understood and would comply with their no smoking policy, and one was stating that I agreed to have a blood transfusion should I need one for any reason. She also made me an arm band to initial that I would get when I check in the day of surgery.
Then she sent me into another room where I presented my ID, the nurse there verified who I am, and gave me more paperwork to fill out while I waited to be called back in. It consisted mostly of medical history questions- previous surgeries, allergies, heart problems, blood disorders, etc. Then once I was done with that she gave me a cup to pee in, took my vitals, asked me more medical questions and elaborated on what I filled out on the form, listened to my heart and breathing, took two vials of blood, swabbed my nose to check for MRSA, and did an EKG. She also gave me some antiseptic soap that I had to wash my body with the night before and the morning of surgery. Then I was sent to get an X-ray of my chest and I was done. All that was left was to wait Until surgery day.-
She (the surgery scheduler) scheduled my surgery before even getting an authorization from my insurance company. She said she wanted to make sure I had a spot if they approved it and she had no doubt they’d get it pushed through that quickly, but if for some reason they didn’t, she’d just find me a spot the following week.
Thank god for that woman.
And lo and behold, the insurance company approved it that Monday, so I was golden and good to go!
The procedure I was to have was a craniectomy and laminectomy. He removed a piece of my skull and opened up the lining of the brain to insert a mesh of some type (I forgot to ask what type of material it was, with so much going on, but from my research, I’ve read that they usually try to make a natural mesh using scalp tissue so it will be better accepted by the body), he also removed part of the C-1 vertebrate to relieve pressure off of my spinal cord.
I thought I was so prepared for this, but by monday my nervousness was growing. Tuesday I had so much anxiety I was sick all day. I had had surgery before for a cyst removal where I was put under general anesthesia, so I THOUGHT I somewhat knew what to expect. For some reason I thought my pain would be comparable to that and it wouldn’t be too awful… Oh, how wrong I was. As I get into the surgery and recovery, I’m going to be completely honest. No sugar coating, I’d like for you to at least know what to expect, not that one could really prepare for it in anyway.
I don’t remember too much about about my surgery day. I was told to arrive at the surgery department at 8am. We (myself, my mother, my stepfather, and my boyfriend) waited in the surgery waiting room until I was called back- I think like 9 or 9:30. They brought me and my mother back to the holding area where I changed into a hospital gown, had to put on those cute little gripy socks, remove all of my jewelry and pee in a cup. Then a nurse came in to get all of my vitals, and another nurse came in to set my IV and of course ask questions I’ve already answered a million times. Once that was done they let the rest of my family come back. It was only a few minutes until they wheeled me to the pre-op holding area- they let my mother come but everyone else had to go to the surgery waiting area.
While I was in there waiting I met with the nurse who was checking me in, then my surgeon came by to sign some papers and reassure me everything would be fine. Then the anesthesia team came by, asked me a couple questions, then had me sign more papers, and lastly I met what I guess to be the neuromuscular physicians… I honestly don’t remember what he called himself (terrible, I know) but he explained his job was going to be to insert some type of probes under the skin to monitor my nerves while the doctor was operating so he could warn him if he was getting too close.
Then the anesthesiologist’s assistant came back and put a hair net on me, and brought me “happy juice”, as she called it- she could tell I was freaking out majorly. My mom asked her what it was and she said it was the liquid equivalent of xanax. I remember her putting it into my IV, then honestly that’s the last thing I remember until waking up after everything was all done. I don’t even remember saying bye to my mom before they wheeled me off to OR; I was out before they even gave me anaesthesia lol. But that was just fine by me.
Now as for after surgery… oh boy, I’ve never never, ever felt pain like this.
My surgery took about 1.5 to 2 hours.
But I’ll start with the waking up in PACU.
When I woke up there was a nurse beside me on her little computer and she began asking me questions, like my name and my birthday- I guess to make sure I was coherent. She asked me if I was nauseous and/or in pain. I told her I was in pain (I mean, obviously), but not nauseous- just extremely thirsty. She said she gave me some dilauded and also brought me a small cup of ice since I couldn’t have water yet. Once I finished that she brought me a bigger cup of ice to suck on since I was able to keep the other ice down. I sat in the PACU for about 45 minutes until they were sure I wasn’t going to vomit then moved me to my room. I remember the ride to the room was unpleasant because the guy rolling me down the hall was going a little too fast and every bump hurt. He even asked me if the bumps hurt… I’m like “well duh, I just had my head cut open and it’s being bounced on a pillow…” lol
But I finally got to my room: which let me take a moment here to comment on my room: it was incredible. It was huge. Every nurse that walked in told me I got the nicest room in the entire hospital- which at first I figured they tell that to everyone to make them feel better, but nope, I literally got the nicest room in the hospital
hospital. One of the nurses was telling me about it, it was their VIP room which they usually use for if an employee has a surgery there, but at random times they’ll decide to pick a patient to stay in there, and I was the lucky one! I felt special; I partly think it had a little something to do with the surgery I had and the fact that I was the youngest patient they had that day.
It was huge, it had a large bathroom, a flat screen tv, 2 chairs and a love seat the pulled out into a bed. It looked like a hotel room and It made me feel a lot more comfortable about staying the next couple of nights because I had never stayed over night in a hospital before and was pretty scared about it.
Okay, enough about that, so after I got in my room, of course the first thing I did was ask if my family was going to be coming in. The nurse told me the doctor had already spoken with them about how well the surgery had gone, and by the time they got me all hooked up to the machines and situated my family would be up to see me.
They hooked me up to a new IV bag, put a heart rate monitor on my finger and put those calf massager things on my legs to prevent blood clots.
I was still in a lot of pain (go figure), so the nurse gave me a shot of morphine, but after about 5 minutes it still hadn’t worked so she gave me another one.
-For some reason they didn’t put me on the morphine drip, not exactly sure why- but I was able to get morphine injections once every two hours.
Well that second one got me pretty nauseous, and I ended up throwing up (which was uunbelievably painful) so then they decided to give me my next morphine injection with nausea medicine. Well the morphine helped somewhat but my neck muscles were still super tense and I couldn’t move my head/neck at all, so the nurse gave the doctor a call who ordered a one time dose of valium for the muscle spasms, which helped tremendously.
I was finally able to drink some water, so the doctor decided that he wanted me to start on oral medication and they started giving me percocet instead of the morphine.
I was in immense pain that day and couldn’t get any sleep (which everyone that I’d talked to that had had surgery before all said that the first day they pretty much did nothing but sleep because of the strong pain meds and anesthesia still in their system), but not me. I was up all day and most of the night, I think I maybe got 4 hours off and on. At one point, early in the night, I guess I had finally dozed off, but I was woken up with such intense pain I Starting crying out, it was so bad. I finally called in the nurse and ahe decided to put me back on the morphine since it was fast acting. It helped relieve the majority of pain but still couldn’t sleep. She came in to give it to me every two hours, but I was still so desperate for sleep, I begged her for something to put me out. She said the only thing she could really guve me was benadryl and hope that would help make me sleepy, but it did also help the itching from the morphine.
By the next day I still hadn’t eaten anything, I couldn’t even keep water down, I was throwing up so much, and let me tell you, vomiting is definitely not something you want to do.
The pain on the second day was 10 times worse than the first, I couldn’t stop crying out in pain. I didn’t think it could get any worse.
I couldn’t move, I couldn’t sleep, I couldn’t do anything.
They tried to send me home that day if I wanted to, and even though I did because I was sick of that hospital bed and having nurses coming in all throughout the night waking me up, I declined. They agreed until they could control my pain better, until I stopped vomiting and until I could eat real food and keep it down.
They finally decided the morphine was what was making me sick and went back to the pills; the continued to give me nausea medication every 6 hours too, just to make sure I wouldn’t vomit again.
I also had asked for another dose of the Valium for my neck tension, they said that since the doctor had only ordered a single dose they ccouldn’t, but would call to see if the could get approval. My surgeon’s assistant ended up coming in and speaking with me personally and I asked for more plus some to take home. She agreed and also said she’d have the doctor change the type of muscle relaxers he was going to discharge me with to the Valium instead since it helped so much.
They also decided to remove my catheter that day, which meant I actually had to get up to go pee. I put it off for as long as I could, but the nurse told me if I didn’t go soon they were going to have to re-insert it, and that would be very uncomfortable.
So I got up to pee.
Let me tell you, that was the most painful thing I’d done yet. Moving in bed was difficult enough, but oh my god, getting out of bed… I was so weak, my legs didn’t want to hold my body up, my head weighed a million poubds pounds and I thought my neck would snap. I screamed with every movement.
The nurse brought the little bedside toilet over so I didn’t have to go so far.
But every time after that, getting up to pee got easier.
By Friday things had gotten noticeably better; I was able to eat some fruit and keep it down, able to get up and walk around a little bit and hold my head up for the most part.
The pain had subsided just enough the pain meds were actually starting to somewhat help now.
I was able to get up on my own to go to the bathroom. I even managed to be able to sit in the shower and wash myself (not my hair of course)
They asked if I was ready to go home yet and I told them that I believed I was.
I was discharged from the hospital about 2pm.
They sent me home with Percocet for pain, Valium for muscle spasms and Phenergan for nausea. (I think the doctor made a mistake with the pain meds however. He sent me with 60, directions to take 1 to 2 every 4 hours. I still have to take 2 because one isn’t enough, and I take them literally every 4 hpurs, even throughout the night- meaning he gave me enough for 6 days. I have to call about that, there’s no way I’ll be pain free in that short amount of time.)
I’m now five days post-op and still in excruciating pain. Sleeping is absolutely impossible. There is no such thing as a comfortable position.
I was finally able to wash my hair yesterday, with help of course, and that was a very difficult and awkward task. Just be careful to avoid the incision site and make sure its thoroughly dry and re-bandaged afterward.
My appointment for suture removal is in two weeks, and hopefully they will tell me all is healing well.
Just be careful with eeverything you do- you don’t realize just how much you use your neck muscles for everything.
Eating and brushing your teeth is very difficult; it’s very hard to open your mouth. Also you can feel the pulling of the neck muscles when you chew.
I know this will be a very slow, painful process, but I’m hoping the worst is over!
My Neurosurgeon was Dr. Eric Gabriel and my hospital was St.Vincent’s Healthcare (Riverside) in Jacksonville, Florida.
The nursing staff was absolutely amazing. So patient and sweet and attentive, and did everything in their power to make me as comfortable as possible.
Sorry all of this was so long, but I really wanted to try to outline my entire process and experience in hopes it can help at least one person who’s looking for answers to at least know what expect, and though it may sound scary, help them to be as prepared as possible.
Good luck to all, and if you have any questions, please feel free to ask!
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