So this was me 7 months before my life turned upside down! I looked totally different!
Pseudo tumor cerebri translated means fake brain tumor, alot of my symptoms were just like a brain tumor patient but thankfully it wasn't a real brain tumor but I do have too much CSF (cerebral spinal fluid) in my brain and all that fluid had to go somewhere so it was pushing up against my optic nerves in my brain causing vision problems and also crazy headaches! Most people are misdiagnosed with migraines, I had actually been to the doctor 10mo. prior to my diagnosis and was told it was migraines. Anyways so the biggest fear with my disease itself is going blind, well sort of this disease like so many other rare diseases are very complicated, but at first the number 1 thing your concerned about is protecting your eyesight.
Believe it or not this was a 08 Ford Escape that was totaled by me and possibly the cause to my life altering disease!
Anyways so this is my story. Thanksgiving 08 I had gone to spend it with my sister and her in laws in Mabank, Tx and the entire time I was there I had a horrible headache, one where I couldn't even think, I was taking Advil/Tylenol like crazy and I slept most of the time. I hadn't planned on it but it was so bad I was scared to make the 11/2hr. drive home by myself so I went ahead and stayed at my sister's in laws. The next afternoon I woke up still with the headache, still taking OTC meds, and still not helping! But I had to go to work Saturday morning so I had no choice but to head back to Frisco. Sometime that day I had talked to my Dad and he had known that I had been having these headaches off and on since my wreck in Sept. 07 and the last couple of months I had a headache that just would not go away with OTC meds and I even had leftover RX pain killers that wouldn't help either, but that day my Dad had said my grandmother had suggested me go to the eye doctor I probably just needed glasses! Brilliant idea...in the end it ended up being the best thing I could've ever done! So I was planning on calling Monday morning and making an appt. but Friday night I didn't sleep because I had developed a pounding in my head (which is typical for PTC patients) that would not stop, I was absolutely miserable. So Saturday while at work I decided I was going to come home and make an appointment with a eye doctor in the Stonebriar Mall and luckily they had an appointment within an hour so I took it! Little did I know November 29, 2008 my life was going to change forever. I went and told the doctor about my headaches, my vision problems, the awful pounding in my head, and how bad this was affecting my life so she did the usual eye exam and I started getting freaked out because she left for awhile and came back in with another doctor and then left with him and then came back and gave me news that left me in tears! Well the good news is you don't need glasses and you have 20/20 vision but the bad news is your optic nerves are very swollen and your at high risk of going blind very soon, at anytime now, and you need to leave here and go straight to the ER because it looks like you have something wrong with your brain! WHAT??? BRAIN??? I came here for my eyes and now something is wrong with my brain, am I going to die today? What's going on with my brain? Ya very scary stuff somehow I made it out of the mall without crying and called my parents and sister...I had sent my Dad a text while still in the hospital so I know he was freaking out already. But the entire ride to the hospital I cried, I didn't know what hospital was the best or the closest, but my Dad told me to go to Texas Health-Plano which was a couple miles away, so I did.
July 2009. Never in a million years would I have thought I would've had brain surgery. You can't tell since I was laying down but literally half of my head was shaved, there was no covering it up so my sister shaved the other half!
The diagnosis! I got there and had to wait way too long, I think my Dad was able to make it there by the time I saw a doctor. Thankfully the eye doctor had written the possible diagnosis on a paper for me to give to the ER doctor and that little piece of paper, the wonderful optometrist, and my grandmother's brilliant idea to go to the eye doctor saved me lots of possible misdiagnosis, many more months of suffering, and possible vision loss. (BTW get your eyes checked yearly, I never did but going yearly could possibly catch PTC if you have it and if you have headaches often then you better make this a priority) So the ER doctor said the first thing he had to do is order labs, start an IV to get my some pain meds, and get a CT of my brain. They gave me dilaudid which is pretty much the strongest pain med they typically give you (like as in stronger than heroin strong) and that stuff is wonderful! I didn't get complete pain relief but it did take the edge off and that helped...really it probably just made me druggy and I felt like it took the edge off but whatever the case was it did more than anything else had so far! So I had the CT and the results came back with my brain looking normal which was what the doctor was looking for, for a PTC diagnosis. Next he told me we need to do a spinal tap aka lumbar puncture to find out if my pressure in my brain was elevated. Ugh I was so scared, good thing I had that dilaudid because I needed it for this. Oh and by this time my Mom, Dad, Sister, Bro. in law, and both my Uncle's and families were in the waiting room, somehow I picked the perfect day because both my uncle's happened to be in the Dallas area with their families. So he did the spinal tap and while the doctor was still doing it he said oh yeah you definitely have pseudo tumor cerebri, he said the thing they measure the pressure with only goes to 50 and fluid was at the top, plus more coming out! At this point that was foreign language to me but 50 is a crazy number, in normal people it's like 8-20, and I've talked to people that has PTC and has never had an opening pressure higher than 30, so 50 is really high. I got instant relief by the way, my brain had never been so happy! At this point I didn't know what was ahead of me, the ER doctor explained it and gave me some print offs and told me that it can be treated with medicine and sometimes surgery. I was still scared but at the same time relieved I didn't have a headache anymore.
This was me in Bryan, Tx, April 08 working in a Wal-Mart, I miss my career but I know there's a reason for everything and one day it'll all unfold!
The following couple of months...Well I ended up with a spinal headache from the spinal tap at the ER thanks to their poor education on aftercare, which by the way is seriously the worst headache you will ever experience, if you think I'm kidding then go get a spinal tap and have them drain all your CSF off your brain and see how you feel! Yeah you can't move, pretty much you are laying in bed for 3-7 days, you can't lift your head, you cry every time you have to go to the bathroom, you have to eat laying down, and you can't shower...well you can but I think I usually go like 3 days w/o a shower when I have spinal headaches! (I've had quite a few now) Oh and I missed the important part when you have a spinal headache if you lay down the pain goes away or gets a little better! Anyways so the next couple of months my life consisted of appointments with MRI machines, neurologists, opthamologists, neurosurgeons, and getting spinal taps! By January 1st I was on short term disability because my job said it was either this or be in jeopardy of losing it. Which totally sucked because I loved my job and I was good at it, I had attempted college to become a chef when I was fresh out of high school but I quit because I didn't really like school. I stayed working at David's, become a manager, actually loved it and if you want to knock it go ahead, I'm sure some of you from high school probably made fun of me because I was still working at David's years after high school but it was because of my experience at David's that got me a job making more money than most of my college graduate friends, oh and a company car...all at the age of 21. Yes I was very proud of my job and my accomplishments, and I was very proud of my company! Oh and for the record I'm still technically an employee, just out on long term disability-w/o pay...bit of advice GET LONG TERM DISABILITY, I was 21, who needs LTD at 21???...so I thought...get it...if you don't have it usually you can sign up at enrollment time so my advice, GET IT ASAP! Anyways I'll get off my soap box...I started taking Diamox-the devil drug as I call it, and lasix and it didn't help and it made me sick, I ended up having 3 spinal taps in 6weeks with little to no improvement so it was time for surgery!
July 09, Bald is Beautiful...Right? It sure didn't feel that way!
My shunt isn't this big still some of that was swelling but it still sticks out of my head but since I have hair now it's not visible.I'm not going to keep going on and on about PTC and go into as much detail about the surgeries. I wanted to go into detail on the diagnosis because I don't think everyone realizes how serious headaches can be. Yes this is a rare disease and HOPEFULLY none of my friends ever get diagnosed but you never know. And if you go and read about PTC you will probably read that its common in overweight/obese women...yes I am overweight now but my weight was a result of multiple surgeries and inactivity, at the time of diagnosis I weighed 130 and was a size 6, I THINK I read somewhere that a size 12 is the average size of the American woman so I was by far not OBESE. So the point I'm trying to make just because you are overweight and have headaches doesn't mean you have PTC, and just because your a man, a size 1 woman, or even a kid that doesn't mean you CAN'T have PTC. I have talked to many different people with PTC of all shapes, sizes, ages, male, female, etc. Okay I'll get off my soap box AGAIN.
X-Ray of my skull with my VP Shunt.
I know this might be gross but this was the pigtail drain that I had to have in my stomach for 12 days! And it still didn't work and required me to have yet another surgery!
But I will tell you I have had 10 surgeries, so many CT's, MRI's, Xrays that I can't count, alot of scars...my stomach is butchered, a seroma, had my stomach drained along with a pig tail drain for 12days, physical therapy, probably 100+ appointments to specialists, so many needle sticks for IV's and blood that I ended up needing a port surgically placed, 3 spinal taps, now possible fatty liver disease...still in diagnosing stages, so far 6 nerve blocks, next week I'm scheduled for some radio frequency thing that will deaden my nerves for 9mo. or more and 2 more surgeries scheduled before the year is over. Oh and for those that are interested the surgeries were LP shunt placement, 2 revisions, VP shunt placement, 5 revisions, and 1 port placement. And the sad thing is I might not be over with surgeries, shunts are not the most promising medical device but it is what keeps me functioning and allows me to do the little bit I do, do. Oh but probably the hardest part of all of this is saying good bye to my old self and my old life. I am married now so of coarse it's a little bit different in a good way thanks to being married but then again with that comes the part of seeing so many people our age starting families and considering my situation it's not possible, especially considering I can't hold my 6mo. old nephew without being in pain, so much pain that I end up bedridden for days after visiting my sister. It crushes my heart but what more can I do, I've done all the surgeries, gone to all the doctors, and now I'm getting pain management care, so hopefully in the end the pain will go away.
Our SUPER casual wedding at the Hill County Courthouse with just family and like 2 friends!
Oh but the VERY VERY VERY BEST PART about all this, probably eh...MOST DEFINITELY the only good thing about all this is LEE PETERSON! He is my very best friend and my everything! We fell in love via myspace, text, and AOL Instant messenger, which would've never happened if I wouldn't of been on short term disability and been bored outta my mind. (FYI we did go to high school together in a small town so we did know of each other but just never talked) We finally saw each other the week before my first surgery and their was an instant connection. Needless to say we married 7weeks later on March 13th! I can't imagine my life without him, he is the most wonderful, caring husband ever! I KNOW it will last forever, we've been through too much stuff already that has proved our dedication and love to one another! Hopefully one day we will make our dream of having a family come true, I will be healthy, and we can live a semi normal life. We have laughed though more than you could ever imagine under these circumstances, he keeps me positive when I'm losing hope. I know God has a plan for us though and one day we'll look back on this and be proud of how strong and positive we were!
Our matching "313" aka March 13 aka our anniversary tattoo...he'll never have an excuse to forget now!
SO. The reasoning for this post was to tell you that I've been sick this week therefore not cooking. I do have pics of one thing I do plan on posting today but when I started the post for it I decided to make a separate post explaining my illness therefore the lack of posting. Ideally I would love to post Monday-Friday, but being sick it's not always possible. And the only reason I started posting is because I'm in so much pain from my nerve block today I can't sleep, so I might as well be as productive as I can be sitting in a chair!
This is probably the most recent picture of me taken in July. Me, my sister, and my nephew Caleb!
Anyways I hope you all understand and still continue to check my blog because I do have weeks that I cook like crazy and I hope to get ahead on my picture taking that even if I do get sick for a week I still have plenty of stuff to post. And I also hope that if you read this and you have frequent headaches you realize it's not normal, or if you have been diagnosed with migraines and the meds don't help you seek for more answers, or if you have a friend/family that complains about headaches all the time you suggest reading this. Like I said I know it's rare but I've learned you have to be your own advocate and you know your body better than anyone else and if your current doctor isn't doing anything find another. And yes the only for sure way to get a diagnosis or to rule it out is a spinal tap/lumbar puncture but it's really not as bad as it seems and if your that scared then ask for sedation, I wasn't sedated for any of mine but I have a friend that was sedated for all of hers, right here in the DFW area. To me it's stupid but I've actually read on a support group of someone refusing to get a spinal tap, Hello you can't get a diagnosis w/o it and w/o a diagnosis a doctor probably isn't going to treat you for it and if they happen to then I really doubt your insurance company is going to pay for the treatment without a proper diagnosis...some people are so stupid! Also if you can't handle a spinal tap then don't even think about getting pregnant! Sorry that was my rant...I know an epidural isn't quite the same but it's basically the same! Anyways I've managed to rant, get on my soap box, probably bore you out of your mind but I've got it all of my chest now! :) Good night...I think I'll try to sleep now!
My handsome husband! Poor guy is so used to waiting rooms he now makes himself comfortable. haha. Don't worry he really doesn't get this comfy, the place had like 20min. left on lunch break and we had to wait and since no one was there he got comfy!
Also please go check out Intracranial Hyptertension Research Foundation, it's the only place in the world doing research for the disease. If you happen to be a patient please go and register with them, it's free and they need all the patients they can get for research! And if you can any donation to the foundation would be appreciated, there are alot of wonderful people suffering with this disease, alot even worse than me that could REALLY use a cure! If you donate check with you or your spouses employer and see if they have a donation match program, alot of companies do they just don't advertise too much about it, or if it's a small company then your employer might just match donations if you ask!