So at the ER on March 21st they confirmed that I indeed had another seroma and they called my NS and he said for me to go home and call the office on Monday. I really wanted to stay the night in the hospital, I know most people try to stay out of hospitals but I've learned dealing with surgeons you get attention much quicker if your on their list of patients to visit in the morning before surgery or before their office hours. So Monday morning first thing I called and they would see me on Tuesday morning. We went and I was quite disappointed because in the ER they had only done a shunt series and an ultrasound of my stomach but before I left they had asked my NS (or it could've been a NS on call) if I needed a CT and they said no the ultrasound should do. Ya it wasn't they wanted me to go get a CT so I did that and then went home to wait for their call. I didn't get a call until Thursday afternoon. Since my surgeon has never seen a seroma in his patients he wanted to consult with 2 general surgeons on what to do so of coarse that took days. lol. And both surgeons agreed I needed a pig tail drain, so they scheduled me for Monday the 29th to get it placed. (see this was the reason why I wished I would've been in the hospital instead of sent home, if I would've stayed I would've had that drain put in prolly on Tuesday instead of waiting until the following Monday and this whole time I was in severe pain not being able to do anything but lay there)
So my drain, the procedure was alot like a spinal tap as far as pain levels and set up and even the room it was in. A radiologist did it. He numbed me up with lidocain and then inserted the drain. I have me a lil bag that looks like an IV bag and I have to empty it and record the fluid every day.
I'm scheduled to get the drain out tomorrow morning at 9am in my NS office but I don't know if that's going to happen because it was suppose to stop draining and it hasn't. I have drained a total of 2225cc's in 8 days. And just in the last 3hrs I've drained 75cc so we'll see if it comes out.
It really hasn't been bad as far as pain and mobility. The first day I was in a lot of pain so I was worried I was going to be like that all week but that pain went away and it's been rather comfortable. But the bath/shower part OMG...I love baths I'm the type of person that takes atleast 2 baths a day and then I add a shower to wash my hair every other day or every day and they told me my only rule was not to get this wet and to wrap it in just saran wrap to shower. Well I knew from experience with my LP shunt surgeries and having staples in my back that I couldn't get wet that this saran wrap technique wasn't good so I figured I'd have Lee give me sponge baths and just wash my hair at the kitchen sink except on Tuesday morning before my doctors appointment I'd wrap up in saran wrap and take a real shower since I want to be clean to go out in public and if I did get it wet I'd be about to get it out. Well Sunday morning I felt so gross...we had done a couple sponge baths/body wipe downs and washed my hair a couple times but I just needed a shower. So when Lee got home we put some guaze type stuff and taped it where the drain is and then wrapped up in saran wrap and then taped the tops...yeah I was in there for 5 seconds and could feel water seeping thru so I grabbed a towel and held it on my tube area hoping it'd help but it didn't. I took it all off and it was wet. Oops. I don't think the actual drain got wet because the dr. had put a bandage over it so I think it was fine but that bandage did get wet. So bottom line the saran wrap crap don't work and don't listen to your doctors.
Ok so that is it so far...I guess I need to go to sleep for a lil while before I have to get up to head to the doctors office. I'll update after some time.
Tuesday, April 6, 2010
2009....What a year! Part 2
So after my VP shunt placement everything was going good I was in quite alot of pain at times but I was healing. So I was really happy because the CSF build up in my back muscles was being absorbed and going down since my LP shunt was off BUT I developed a bump like that on my stomach. It was at my incision on my stomach about an inch down and a couple inches to the right of my belly button and it got so big it looked like a baby's head sticking out of my stomach. So I called the NS and he scheduled a CT. I was told the tube had migrated up out of my peritoneal cavity and CSF was collecting in that area.
So VP shunt revision and surgery #5 was scheduled for August 14th! Recovery was pretty painful, I've always said that the abdominal part of the shunt surgery is the worst part. I had a headache pretty bad for weeks after this surgery which the NS said it was because the brain doesn't like to be messed with and they keep messing with it. I actually ended up in the ER really late August 18th with chest pains, fever, and the headache and they admitted me in the hospital and I stayed for 2 1/2 days. They never figured out anything but they didn't want me to leave until my fever was gone. When I left I still had my head pain but that's it.
So again everything was going FANTASTIC...I was even released from the Dr. and was going to return to work at the end of September. But once again I ended up back in the OR because that tube had came out AGAIN. This time my NS asked a general surgeon to perform the surgery with his assistance. I had that surgery on October 1, 2009.
I feel like my life was on replay and I couldn't get it off because a month later at the beginning of November my stomach started swelling again and I called my NS and told them it's swelling again. After it came out the 2nd time my dr. stopped having me come in for every lil thing, they know I know my body so all I do is call and they schedule the CT and then the radiologist sends them the report and they call and schedule surgery and we meet in the OR. So anyways I had gone got my Ct and my phone call and met them back in the OR on November 12th. Again the general surgeon did the surgery with my NS but this time they tacked down the tube in my stomach and clamped it on the outside of my peritoneal cavity. They told me usually with shunts they like it free flowing in the peritoneal but for patients like me (which is rare) they will do something else but it has higher risks for bowel obstruction.
This time it seemed different and was soo much better. Back in September my short term disability ran out so I was on Long Term and in order for me to go back to work I had to be 100% better and be able to be 100% released without any restrictions so I knew it would be awhile before I could go back.
On New Years Lee had to work and we had moved back in May and we still hadn't unpacked all the way and we were planning on moving again in May so I decided I wanted to stay up all night organizing our boxes and cleaning our apartment. Oh and my sister n law was coming so I needed to clean up the guest room. But physically I did alot and we agreed that if I was able to do that without the tube coming out then it wasn't coming out and I could start building my strength back up to go to work. We started planning on me going back at the beginning of Feb. and I was starting to work out and get physically active.
I had some problems getting back to work, things with the company wasn't quite how I was promised but they did find me something but I had to be interviewed for it. So I interviewed and I got it and I had to take a drug test before I could begin. I had taken my drug test on a Friday and that Sunday guess where I ended up...the ER!
It was Feb. 21st and I had been having intense stomach pains since Friday evening to where I could barely move and my stomach was swelling so I had just known that it was out BUT IT WASN'T!!! The CT in the ER definitely showed a fluid build up but the tube was in place. They wanted to admit me in the hospital that night because they weren't sure if I had an infection inside of me.
I was admitted and the next day my NS came in and ordered my stomach to be drained to see if there was an infection. They drained 150cc off and within 8hrs it was back swollen. The next day they did an ultrasound on my liver because my liver levels are high but my liver came out fine. So the next day they came in and said there was no infection but they are afraid my tube had gotten a hole/tear in it from all the messing around with it and so they were going to go back in and see what was going on.
So surgery #8...well at the time we thought it was good news because the tube didn't need to be replaced but I had developed a seroma from all the abdominal surgeries so they cleaned it out and tightened up my stomach muscles and area. Here's a link to what a seroma is... http://en.wikipedia.org/wiki/Seroma
So I healed really quick from this surgery and felt really great but as always I feel like it never goes great for very long so I ended up back in the ER on March 21...yup a month later. So since this is kind of present time I'm going to continue on the next post.
So VP shunt revision and surgery #5 was scheduled for August 14th! Recovery was pretty painful, I've always said that the abdominal part of the shunt surgery is the worst part. I had a headache pretty bad for weeks after this surgery which the NS said it was because the brain doesn't like to be messed with and they keep messing with it. I actually ended up in the ER really late August 18th with chest pains, fever, and the headache and they admitted me in the hospital and I stayed for 2 1/2 days. They never figured out anything but they didn't want me to leave until my fever was gone. When I left I still had my head pain but that's it.
So again everything was going FANTASTIC...I was even released from the Dr. and was going to return to work at the end of September. But once again I ended up back in the OR because that tube had came out AGAIN. This time my NS asked a general surgeon to perform the surgery with his assistance. I had that surgery on October 1, 2009.
I feel like my life was on replay and I couldn't get it off because a month later at the beginning of November my stomach started swelling again and I called my NS and told them it's swelling again. After it came out the 2nd time my dr. stopped having me come in for every lil thing, they know I know my body so all I do is call and they schedule the CT and then the radiologist sends them the report and they call and schedule surgery and we meet in the OR. So anyways I had gone got my Ct and my phone call and met them back in the OR on November 12th. Again the general surgeon did the surgery with my NS but this time they tacked down the tube in my stomach and clamped it on the outside of my peritoneal cavity. They told me usually with shunts they like it free flowing in the peritoneal but for patients like me (which is rare) they will do something else but it has higher risks for bowel obstruction.
This time it seemed different and was soo much better. Back in September my short term disability ran out so I was on Long Term and in order for me to go back to work I had to be 100% better and be able to be 100% released without any restrictions so I knew it would be awhile before I could go back.
On New Years Lee had to work and we had moved back in May and we still hadn't unpacked all the way and we were planning on moving again in May so I decided I wanted to stay up all night organizing our boxes and cleaning our apartment. Oh and my sister n law was coming so I needed to clean up the guest room. But physically I did alot and we agreed that if I was able to do that without the tube coming out then it wasn't coming out and I could start building my strength back up to go to work. We started planning on me going back at the beginning of Feb. and I was starting to work out and get physically active.
I had some problems getting back to work, things with the company wasn't quite how I was promised but they did find me something but I had to be interviewed for it. So I interviewed and I got it and I had to take a drug test before I could begin. I had taken my drug test on a Friday and that Sunday guess where I ended up...the ER!
It was Feb. 21st and I had been having intense stomach pains since Friday evening to where I could barely move and my stomach was swelling so I had just known that it was out BUT IT WASN'T!!! The CT in the ER definitely showed a fluid build up but the tube was in place. They wanted to admit me in the hospital that night because they weren't sure if I had an infection inside of me.
I was admitted and the next day my NS came in and ordered my stomach to be drained to see if there was an infection. They drained 150cc off and within 8hrs it was back swollen. The next day they did an ultrasound on my liver because my liver levels are high but my liver came out fine. So the next day they came in and said there was no infection but they are afraid my tube had gotten a hole/tear in it from all the messing around with it and so they were going to go back in and see what was going on.
So surgery #8...well at the time we thought it was good news because the tube didn't need to be replaced but I had developed a seroma from all the abdominal surgeries so they cleaned it out and tightened up my stomach muscles and area. Here's a link to what a seroma is... http://en.wikipedia.org/wiki/Seroma
So I healed really quick from this surgery and felt really great but as always I feel like it never goes great for very long so I ended up back in the ER on March 21...yup a month later. So since this is kind of present time I'm going to continue on the next post.
Sunday, April 4, 2010
2009...What a year!
Okay so next my neurologist referred me to a neurosurgeon in Plano which at first I was very excited about because I looked him up and he was in D Magazine's top doctors in the DFW area and had been on their list for like 5years or so. For those of you that don't know those doctors are on that list because they are nominated by all the other doctors in the area.
So my first appointment he said my ventricles were too small (which they usually are in IH patients) so he couldn't put in a VP shunt (a shunt that is placed in your brain and a tube runs down your body into your stomach and drains spinal fluid CSF) but that he would put in a LP shunt (one that is placed in my spine and a tube runs around into my stomach, same concept just different areas) and he wanted to do it the next week.
I remember my first appointment very well it was on a Tuesday and after that appointment I had plans to go hang out with Lee for the first time, it was 1/20/09. At that time me and Lee had been talking on myspace, AIM, and text messaging for about 10 days. I felt like I knew everything about him at this point. And to be honest I already thought I was in love with him. (which I was) We hung out for hours, just talking it was awesome. We weren't going to see each other again until the weekend because I was suppose to go to a funeral 6hrs a way but I was in too much pain and it was unsafe for me to travel so on Thursday I went back to his apartment. It was kind of neat...we already knew we were going to be together forever because we were talking about how when we kissed it was going to be "our last first kiss"...sure enough we kissed for the first time that day and it in fact was our last first kiss!!! Let's see what happened next...he was going to help his aunt move in Arlington on Friday and then go to Rangers Fan Fest on Saturday and I was going to meet him back at his place Saturday night to hang out with his best friend and his gf. Well this was my last weekend to be able to do anything for awhile since my shunt surgery was Monday so late Friday night I headed to Arlington to spend the night with him at his aunts house, and his aunt was the first family I met well besides his sister. Oh I forgot a funny part...we went to high school together. We both graduated from Whitney High school him in 02 and me in 04 and we had some mutual friends but we never talked or anything in high school. And what led us to talking was while I was at home bored being sick I was spending alot of time on myspace and i was adding alot of people from high school that I barely knew and I ran across Lee and I saw that he was a manager at a Kroger in Dallas and I wanted to know more since my company works with his company. Ok so back to Arlington...that night we were talking and we decided that we were officially bf/gf...I don't know how adults do this kind of thing but that's how we did it...actually it was kind of a..."so we can change our myspace status" haha that's funny, that's so today's times. You know talking about mine and Lee's story is the best part of this blog, we have an amazing love story, or atleast I think. So Saturday morning we woke up and went to the Rangers fanfest in like 30degree weather, got Josh Hamilton's signature and then left. Okay now to fast forward to the really sweet part...we were at his apartment late Saturday night and we were talking about our feelings and how it was crazy how strongly we feel about each other and how in sync we already were. And he asked me, "do you think it's possible to love somebody already this fast?" and I said, "yes, I've been wondering that all day myself"...then he said "I LOVE YOU"...and of coarse I said it back!!!! Awww...makes me want to cry talking about it. My life has been crazy horrible upside down and everything else but God brought me Lee, he knew I was going to need him and it sounds crazy but I would rather be sick and have Lee than to be healthy and not have him. He is my world and has been since Jan. 20th!
Ok so onward we go with the boring, scary, ugly medical part. You know this is kind of therapeutic...writing this, I doubt very many people if any will actually read this but it helps me I think.
So my very first surgery EVER besides oral surgeries was 1/26/09...all my family gathered @ Baylor in Plano and my Mom had came to stay with me to that week to take care of me. I was really scared mainly because one of my uncle's has had bad experience with anesthesia and my sister gets nauseous with it and I didn't know how general anesthesia would treat me. Well I did all my pre-op stuff, the Drs came and got me and I was out before reaching the OR. All they gave me was the nice lil cocktail and I was sedated. I woke up and oh I hurt bad, and I was so swollen from all the gas they had pumped inside of me. And the first thing I thought about while my parents are standing beside me was LEE, I wanted to see him, so I had my dad call him and ask him to come. I kind of felt bad because Lee works nights and he sleeps during the day but at that point I didn't care I just needed him, not no one else. I think at this point my Dad knew that he was the one, well between that and my family went thru my texts while in surgery and saw that we were already saying "I love you". So this surgery was suppose to be only a one night stay but I had a complication because the valve was talking out too much CSF causing me to have a spinal headache! I stayed two nights and then they let me go home and said if it's not better by Friday then they would schedule another surgery the following Monday morning.
Yup you guessed it...2/2/09 I was back in the OR to have my 2nd revision to replace my valve with a high pressure valve. Oh and my mom had to go back to Waco to work and so my options were to go to my Dad's after surgery or for Lee to take care of me. Bless his heart, he's the sweetest man on earth and he took me to the hospital and stayed with me all evening at the hospital and then took me home and took care of me. Really it was alot easier this way since he worked nights but for a bf of not even 2 weeks yet, it was true love. That surgery went good, recovery was a lil rough because I got bronchitis. Oh and here is the story of what Lee did to win over my grandmother's heart...on his birthday 2/5/09, which was kind of a milestone it was his 25th birthday he got off work at 8am drove 45min in traffic to my apt. picked me up and then drove me to the ER to spend his birthday there. Between the risk of pneumonia and blood clots my Dr. said I needed to get to the ER and I told him he could take me and drop me off and my dad could come and take me home. (I had been single and was used to doing things like that on my own so it was really no big deal for me) But he looked at me and said, "I haven't left your side yet and I'm not going to now!" Yup won my Meme's heart over! Oh it was bronchitis but we had a blood clot scare because one of my blood tests came back high in something that is usually high when you have blood clots, but they did CT's and I was fine, got sent home with an inhaler and antibiotics. Oh I love Lee, he has been my best friend since the day we saw each other.
Okay so I started recovering slowly but surely and everything medical was going great, the shunt had made the headaches go away now it was time to heal, build my energy/strength back up and head back to work. So now we'll get back to the fun stuff...me and Lee. Oh I love talking bout these special moments! So on 2/13 we decided to take a trip to Whitney and we were going to meet each other's grandparents and his parents. Honestly I probably wouldn't of taken him to my aunt and uncle's house yet but we had already been talking about getting married in October and moving in together in April after his lease ran up so I figured we should go by there too! It was a great visit, everyone loved everyone! So it went so good that on our way home something stuck with us that my grandfather said, "he said if you love each other why wait." So on Valentine's day we decided we were going to get married like soon...real soon, sounds crazy since we hadn't been together a month yet but we loved each other so much and we couldn't wait to start our lives together. And a bonus to this was we were going to be married before we ever moved in together and we know most people don't care about that anymore but out of respect for family we wanted to do it that way. So on March 13th we said our vows and made a lifelong commitment to each other, one that I know we will keep. Oh and I also went back to work that week.
So we were married, happy, starting our lives together and KAAAA..BOOOOOOM!!! I ended up back in the OR on 3/19/09 due to CSF leaking into my muscles and the valve had came out of my spinal cord a lil bit. SURGERY NUMBER 3...within 3 months!!! So we thought that surgery went good but it didn't, I still had the leak and CSF was making a huge Grapefruit size ball sticking out of my back and it was very painful but I just learned to deal with it and I went back to work in May.
After about a month of working I decided I couldn't do this, it was too painful and my performance was still not where it needed to be because I was still sick I guess you'd say. So we decided we had enough with that surgeon and started looking for another one because he said the only way he could fix it was to drill a hole in my bone, cut my muscles around my spine, and put glue all in it to try to seal the leak. Ya not going for that so I hunted with all my free time which wasn't much because I was working for a new doctor. It was hard because I found out quick other neurosurgeon's don't want to mess with other surgeon's work. I have a few theories of why but for once I'll keep them to myself. I was turned away by some of the best surgeon's in Dallas because I had multiple surgeries. But I finally found one...he was kind of hidden away in Richardson in a semi small hospital for Dallas. He was also in D Magazine's top dr list for many many years even more than the other doctor but he was also named TExas Super Doctor I believe twice and from what I understand that is even bigger of an honor cuz they only name one dr to that...don't quote me cuz I could be wrong and I don't feel like looking it up. So we visited with him and he said my other dr. was right that his crazy idea was an option, or we could take the lp shunt out let it heal and then place it again but that would take awhile and not guaranteed...or we could put in a VP shunt!!!! O yeah...that was our choice...that's what I wanted to begin with but the other dr. said my ventricles were too small and I didn't know alot at the time about neurosurgeon's but just because one can't do it or says he can't doesn't mean another one can't. And this surgeon doesn't VP shunts weekly and the other one never does, but again I was misinformed I thought shunts weren't done that often. Oh for all my IHer's I have read somewhere that shunts are the 2nd procedure done the most for neurosurgeon's on adults, it's the number one procedure in babies. So get opinions, get lots of them because one isn't enough when it's your brain were talking about, or your spine. I was dumb and just took my neurologist's referral as if it was my only choice, and it's not.
Okay so on July 13th 2009...I had BRAIN SURGERY! It was scary but we knew we were doing the right thing. Lee took a vacation that week to make things easier on the both of us. I stayed 2 nights in the hospital and then came home. Everything appeared to have gone great and recovery for this was surprisingly easier than the LP shunt surgery. Oh but the sad part was that week my sister came over and shaved the rest of my hair off. So I was bald! Honestly thought it was kind of nice and easy, the worst part was being called "sir".
Okay so I'm going to pick up later where I left off...if anyone is actually reading this....I haven't gone into much detail yet but just know thru out this all I am so happy, I had my days where I cried but for the most part and still to this day me and Lee spend our days laughing and smiling!
So my first appointment he said my ventricles were too small (which they usually are in IH patients) so he couldn't put in a VP shunt (a shunt that is placed in your brain and a tube runs down your body into your stomach and drains spinal fluid CSF) but that he would put in a LP shunt (one that is placed in my spine and a tube runs around into my stomach, same concept just different areas) and he wanted to do it the next week.
I remember my first appointment very well it was on a Tuesday and after that appointment I had plans to go hang out with Lee for the first time, it was 1/20/09. At that time me and Lee had been talking on myspace, AIM, and text messaging for about 10 days. I felt like I knew everything about him at this point. And to be honest I already thought I was in love with him. (which I was) We hung out for hours, just talking it was awesome. We weren't going to see each other again until the weekend because I was suppose to go to a funeral 6hrs a way but I was in too much pain and it was unsafe for me to travel so on Thursday I went back to his apartment. It was kind of neat...we already knew we were going to be together forever because we were talking about how when we kissed it was going to be "our last first kiss"...sure enough we kissed for the first time that day and it in fact was our last first kiss!!! Let's see what happened next...he was going to help his aunt move in Arlington on Friday and then go to Rangers Fan Fest on Saturday and I was going to meet him back at his place Saturday night to hang out with his best friend and his gf. Well this was my last weekend to be able to do anything for awhile since my shunt surgery was Monday so late Friday night I headed to Arlington to spend the night with him at his aunts house, and his aunt was the first family I met well besides his sister. Oh I forgot a funny part...we went to high school together. We both graduated from Whitney High school him in 02 and me in 04 and we had some mutual friends but we never talked or anything in high school. And what led us to talking was while I was at home bored being sick I was spending alot of time on myspace and i was adding alot of people from high school that I barely knew and I ran across Lee and I saw that he was a manager at a Kroger in Dallas and I wanted to know more since my company works with his company. Ok so back to Arlington...that night we were talking and we decided that we were officially bf/gf...I don't know how adults do this kind of thing but that's how we did it...actually it was kind of a..."so we can change our myspace status" haha that's funny, that's so today's times. You know talking about mine and Lee's story is the best part of this blog, we have an amazing love story, or atleast I think. So Saturday morning we woke up and went to the Rangers fanfest in like 30degree weather, got Josh Hamilton's signature and then left. Okay now to fast forward to the really sweet part...we were at his apartment late Saturday night and we were talking about our feelings and how it was crazy how strongly we feel about each other and how in sync we already were. And he asked me, "do you think it's possible to love somebody already this fast?" and I said, "yes, I've been wondering that all day myself"...then he said "I LOVE YOU"...and of coarse I said it back!!!! Awww...makes me want to cry talking about it. My life has been crazy horrible upside down and everything else but God brought me Lee, he knew I was going to need him and it sounds crazy but I would rather be sick and have Lee than to be healthy and not have him. He is my world and has been since Jan. 20th!
Ok so onward we go with the boring, scary, ugly medical part. You know this is kind of therapeutic...writing this, I doubt very many people if any will actually read this but it helps me I think.
So my very first surgery EVER besides oral surgeries was 1/26/09...all my family gathered @ Baylor in Plano and my Mom had came to stay with me to that week to take care of me. I was really scared mainly because one of my uncle's has had bad experience with anesthesia and my sister gets nauseous with it and I didn't know how general anesthesia would treat me. Well I did all my pre-op stuff, the Drs came and got me and I was out before reaching the OR. All they gave me was the nice lil cocktail and I was sedated. I woke up and oh I hurt bad, and I was so swollen from all the gas they had pumped inside of me. And the first thing I thought about while my parents are standing beside me was LEE, I wanted to see him, so I had my dad call him and ask him to come. I kind of felt bad because Lee works nights and he sleeps during the day but at that point I didn't care I just needed him, not no one else. I think at this point my Dad knew that he was the one, well between that and my family went thru my texts while in surgery and saw that we were already saying "I love you". So this surgery was suppose to be only a one night stay but I had a complication because the valve was talking out too much CSF causing me to have a spinal headache! I stayed two nights and then they let me go home and said if it's not better by Friday then they would schedule another surgery the following Monday morning.
Yup you guessed it...2/2/09 I was back in the OR to have my 2nd revision to replace my valve with a high pressure valve. Oh and my mom had to go back to Waco to work and so my options were to go to my Dad's after surgery or for Lee to take care of me. Bless his heart, he's the sweetest man on earth and he took me to the hospital and stayed with me all evening at the hospital and then took me home and took care of me. Really it was alot easier this way since he worked nights but for a bf of not even 2 weeks yet, it was true love. That surgery went good, recovery was a lil rough because I got bronchitis. Oh and here is the story of what Lee did to win over my grandmother's heart...on his birthday 2/5/09, which was kind of a milestone it was his 25th birthday he got off work at 8am drove 45min in traffic to my apt. picked me up and then drove me to the ER to spend his birthday there. Between the risk of pneumonia and blood clots my Dr. said I needed to get to the ER and I told him he could take me and drop me off and my dad could come and take me home. (I had been single and was used to doing things like that on my own so it was really no big deal for me) But he looked at me and said, "I haven't left your side yet and I'm not going to now!" Yup won my Meme's heart over! Oh it was bronchitis but we had a blood clot scare because one of my blood tests came back high in something that is usually high when you have blood clots, but they did CT's and I was fine, got sent home with an inhaler and antibiotics. Oh I love Lee, he has been my best friend since the day we saw each other.
Okay so I started recovering slowly but surely and everything medical was going great, the shunt had made the headaches go away now it was time to heal, build my energy/strength back up and head back to work. So now we'll get back to the fun stuff...me and Lee. Oh I love talking bout these special moments! So on 2/13 we decided to take a trip to Whitney and we were going to meet each other's grandparents and his parents. Honestly I probably wouldn't of taken him to my aunt and uncle's house yet but we had already been talking about getting married in October and moving in together in April after his lease ran up so I figured we should go by there too! It was a great visit, everyone loved everyone! So it went so good that on our way home something stuck with us that my grandfather said, "he said if you love each other why wait." So on Valentine's day we decided we were going to get married like soon...real soon, sounds crazy since we hadn't been together a month yet but we loved each other so much and we couldn't wait to start our lives together. And a bonus to this was we were going to be married before we ever moved in together and we know most people don't care about that anymore but out of respect for family we wanted to do it that way. So on March 13th we said our vows and made a lifelong commitment to each other, one that I know we will keep. Oh and I also went back to work that week.
So we were married, happy, starting our lives together and KAAAA..BOOOOOOM!!! I ended up back in the OR on 3/19/09 due to CSF leaking into my muscles and the valve had came out of my spinal cord a lil bit. SURGERY NUMBER 3...within 3 months!!! So we thought that surgery went good but it didn't, I still had the leak and CSF was making a huge Grapefruit size ball sticking out of my back and it was very painful but I just learned to deal with it and I went back to work in May.
After about a month of working I decided I couldn't do this, it was too painful and my performance was still not where it needed to be because I was still sick I guess you'd say. So we decided we had enough with that surgeon and started looking for another one because he said the only way he could fix it was to drill a hole in my bone, cut my muscles around my spine, and put glue all in it to try to seal the leak. Ya not going for that so I hunted with all my free time which wasn't much because I was working for a new doctor. It was hard because I found out quick other neurosurgeon's don't want to mess with other surgeon's work. I have a few theories of why but for once I'll keep them to myself. I was turned away by some of the best surgeon's in Dallas because I had multiple surgeries. But I finally found one...he was kind of hidden away in Richardson in a semi small hospital for Dallas. He was also in D Magazine's top dr list for many many years even more than the other doctor but he was also named TExas Super Doctor I believe twice and from what I understand that is even bigger of an honor cuz they only name one dr to that...don't quote me cuz I could be wrong and I don't feel like looking it up. So we visited with him and he said my other dr. was right that his crazy idea was an option, or we could take the lp shunt out let it heal and then place it again but that would take awhile and not guaranteed...or we could put in a VP shunt!!!! O yeah...that was our choice...that's what I wanted to begin with but the other dr. said my ventricles were too small and I didn't know alot at the time about neurosurgeon's but just because one can't do it or says he can't doesn't mean another one can't. And this surgeon doesn't VP shunts weekly and the other one never does, but again I was misinformed I thought shunts weren't done that often. Oh for all my IHer's I have read somewhere that shunts are the 2nd procedure done the most for neurosurgeon's on adults, it's the number one procedure in babies. So get opinions, get lots of them because one isn't enough when it's your brain were talking about, or your spine. I was dumb and just took my neurologist's referral as if it was my only choice, and it's not.
Okay so on July 13th 2009...I had BRAIN SURGERY! It was scary but we knew we were doing the right thing. Lee took a vacation that week to make things easier on the both of us. I stayed 2 nights in the hospital and then came home. Everything appeared to have gone great and recovery for this was surprisingly easier than the LP shunt surgery. Oh but the sad part was that week my sister came over and shaved the rest of my hair off. So I was bald! Honestly thought it was kind of nice and easy, the worst part was being called "sir".
Okay so I'm going to pick up later where I left off...if anyone is actually reading this....I haven't gone into much detail yet but just know thru out this all I am so happy, I had my days where I cried but for the most part and still to this day me and Lee spend our days laughing and smiling!
The start of it all...(pre surgery & pre Lee)
So I've never really thought about making a blog because that is what I have facebook for, to keep everyone updated. But then after reading a couple fellow IHer's blogs and seeing how typing kind of helps me I figured why not...I'm not writing this for anyone really to read except me, and if anyone does than great! (And I kind of feel sorry for them for baring with my grammar, poor sentence usage, and my habit to go on and on about things!)
So let's start at September 07...I was barely 21 and had just been promoted to a sales rep. and had to move to Bryan/College Station but I had to start there immediately so I was staying in a hotel some and then commuting the other days which was kind of rough cuz round trip it was about 5hours. It was my 2nd week there and I had to be there early so I left my house in Whitney around 4am and as I was driving out of Hearne it was crazy foggy and I was only going about 50 in 65 zone and this car in front of me changes lanes real quick and I didn't know why well I found out as I was hitting a big road maintainer...it looked like a tractor to me. I flipped my 4mo. old 2008 Ford Escape 2 1/2 times, landed upside down, and then slide a while down the highway. Once it stopped I was scared to death cuz I had just seen a movie where a father/son wrecked and they were alive but then they got hit by another car afterwards and it killed the dad...so even though I was still alive then I thought that a car was going to hit me. Crazy I know! But then I heard people getting out of there cars coming to help me and I stuck my hand out my car window to signal hey get me out of here, so people helped me crawl out of my car. Oh I'm making this long...I'll try to shorten it up. lol. So the ambulance took me to B/CS and I got alot of CT's done and pain meds and by the time my parents got there we knew I was OK at the time and I was released. We went to get whatever we could save out of my car at the wrecking yard and take pictures. I was really sore the next day but I just woke up very sore, bumps/bruises, and a burn mark from my seatbelt. Oh BTW state trooper and EMT's say my side curtain air bags are wait saved my life...when I bought that car that was something new to me but lil did I know those would end up saving my life.
Ok so fast forward 4 months...I had been having horrible migraines since my wreck so in January 08 I went to the doctor and I told him about my wreck and said I was concerned maybe there was damage done to my head. He kind of blew off the wreck and said I had migraines and gave me steroids and topamax. I completed the steroids but after 2-3weeks on the topamax I stopped it because it was making me sick and I was always upset to my stomach. So after that I just learned to deal with the headaches and some days were better than others.
So in May 08 I was approached by my manager and was told there was a position in Dallas open and asked if I wanted it because it would be a great career move in order to get promoted. So of coarse I said YES! At the time I had just gotten out of a 3year relationship and I was 100% focused on my career, nothing else! So off to Dallas I go...
I moved to Frisco in July 08 and couldn't wait to get to work and hopefully get a promotion. Ya I was far from it...I felt horrible everyday and it showed in my work performance which hurt even more because work was the only reason I had moved and to be failing at it was heart breaking. I just kept dealing with the pain taking over the counter pain meds as much as the lil label says you can.
So the holidays are here and I decided I would join my sister an hour and a half away from me with her in laws for Thanksgiving. It was my oldest nephews first Thanksgiving and I wanted to be there with them. So I went and I felt so bad my head felt like I had a lil guy inside of my head pounding to come out. I spent half the day in one of her in laws bedrooms sleeping. I wasn't planning on spending the night but it was so bad I was scared I'd wreck if I tried to drive. At this point my eyes were getting blurry too but I woke up and drove home Friday afternoon.
So this is when the fun begins! So my dad was telling my grandmother about my headaches and vision and luckily she's the smart one and said I should go to the eye dr. I probably just needed glasses. Well Friday night I didn't sleep at all and I had to go to work a couple of hours on Saturday so I made an appointment at an eye doctor inside the mall. I went and I had never been to the eye dr. before but I found out I do in fact still have 20/20 vision but they told me to leave immediately and go straight to the ER because something was wrong with my brain!!! I didn't know where a hospital was and I was scared to death. They didn't really explain or tell me anything. I called my parents/sister and they were on their way to meet me and somehow both of my uncles and their families were in Dallas so they headed there as well. Oh and unlike my many fellow IHers I didn't suspect anything wrong with me besides needing a simple pair of glasses.
Ok so first things first they had to do a CT to rule out a brain tumor. Thankfully it was normal so the 2nd step was to do a spinal tap aka lumbar puncture and find out my pressure in my brain. Again this was all foreign to me...I guess I had prolly heard of spinal fluid before but it wasn't an everyday thing to me. So I had my LP and it wasn't that bad, I was terrified before but it just really wasn't that bad. Immediately after sticking the needle in he was able to confirm I had pseudotumor cerebri aka intracranial hypertension. My opening pressure was 50, which really it was higher than 50 but the thing only measures to 50. Which is crazy because some doctors have told me normal is 8-12 but I've also heard all the way up to 18-20 is normal...which it really didn't matter because mine was sky high!
So on Monday I scheduled my appointment with my neurologist and at my first appointment he put me on Diamox aka the devil pill. It was horrible...it made me nauseous all day long every day plus my hands/feet were tingly/prickly and it made my Dr. Peppers taste like crap. Oh and like a week later he added lasix to my mix!
So 3 weeks later my head was right back to where I started. So back to getting another lumbar puncture which by the way was scheduled for Christmas Eve 08 and I was stuck in bed all day Christmas Eve and Day. This was only the beginning of this awful disease turning my world upside down! This time my pressure was i believe 38. Which was crazy because I was on meds that was suppose to lower my pressure. So my doctor said we'd hope it goes away but if the pressure doesn't lower and the side affects from the meds doesn't go away then we'd talk about a shunt.
Okay so at this point I had been suggested to go on short term disability at work because I was missing so much work and when I was there I was so sick I couldn't perform to standard. Oh and I almost forgot but my wreck is more than likely the cause...there's no way to know for sure but my MRI's show massive brain trauma and brain trauma can cause IH and my wreck is the only thing crazy that's ever happened to my head. So i'm sticking with the wreck story rather if it's right or not since there's no way to know...and it helps me get thru things considering I could've easily died in that car but didn't.
So it's Jan 09 and 3 weeks after my last LP my headaches were back and I couldn't take it any longer so they scheduled another LP. (which atleast they were on time, 3 weeks apart again) I was hoping and praying for a good number but then again I didn't care because if it was high then we could head to a neurosurgeon and get a shunt and get back to living...or so I thought! So you guessed it the number was high...it was 30! On to the surgeon I go...(this is where a lil bit of the fun begins)
So let's start at September 07...I was barely 21 and had just been promoted to a sales rep. and had to move to Bryan/College Station but I had to start there immediately so I was staying in a hotel some and then commuting the other days which was kind of rough cuz round trip it was about 5hours. It was my 2nd week there and I had to be there early so I left my house in Whitney around 4am and as I was driving out of Hearne it was crazy foggy and I was only going about 50 in 65 zone and this car in front of me changes lanes real quick and I didn't know why well I found out as I was hitting a big road maintainer...it looked like a tractor to me. I flipped my 4mo. old 2008 Ford Escape 2 1/2 times, landed upside down, and then slide a while down the highway. Once it stopped I was scared to death cuz I had just seen a movie where a father/son wrecked and they were alive but then they got hit by another car afterwards and it killed the dad...so even though I was still alive then I thought that a car was going to hit me. Crazy I know! But then I heard people getting out of there cars coming to help me and I stuck my hand out my car window to signal hey get me out of here, so people helped me crawl out of my car. Oh I'm making this long...I'll try to shorten it up. lol. So the ambulance took me to B/CS and I got alot of CT's done and pain meds and by the time my parents got there we knew I was OK at the time and I was released. We went to get whatever we could save out of my car at the wrecking yard and take pictures. I was really sore the next day but I just woke up very sore, bumps/bruises, and a burn mark from my seatbelt. Oh BTW state trooper and EMT's say my side curtain air bags are wait saved my life...when I bought that car that was something new to me but lil did I know those would end up saving my life.
Ok so fast forward 4 months...I had been having horrible migraines since my wreck so in January 08 I went to the doctor and I told him about my wreck and said I was concerned maybe there was damage done to my head. He kind of blew off the wreck and said I had migraines and gave me steroids and topamax. I completed the steroids but after 2-3weeks on the topamax I stopped it because it was making me sick and I was always upset to my stomach. So after that I just learned to deal with the headaches and some days were better than others.
So in May 08 I was approached by my manager and was told there was a position in Dallas open and asked if I wanted it because it would be a great career move in order to get promoted. So of coarse I said YES! At the time I had just gotten out of a 3year relationship and I was 100% focused on my career, nothing else! So off to Dallas I go...
I moved to Frisco in July 08 and couldn't wait to get to work and hopefully get a promotion. Ya I was far from it...I felt horrible everyday and it showed in my work performance which hurt even more because work was the only reason I had moved and to be failing at it was heart breaking. I just kept dealing with the pain taking over the counter pain meds as much as the lil label says you can.
So the holidays are here and I decided I would join my sister an hour and a half away from me with her in laws for Thanksgiving. It was my oldest nephews first Thanksgiving and I wanted to be there with them. So I went and I felt so bad my head felt like I had a lil guy inside of my head pounding to come out. I spent half the day in one of her in laws bedrooms sleeping. I wasn't planning on spending the night but it was so bad I was scared I'd wreck if I tried to drive. At this point my eyes were getting blurry too but I woke up and drove home Friday afternoon.
So this is when the fun begins! So my dad was telling my grandmother about my headaches and vision and luckily she's the smart one and said I should go to the eye dr. I probably just needed glasses. Well Friday night I didn't sleep at all and I had to go to work a couple of hours on Saturday so I made an appointment at an eye doctor inside the mall. I went and I had never been to the eye dr. before but I found out I do in fact still have 20/20 vision but they told me to leave immediately and go straight to the ER because something was wrong with my brain!!! I didn't know where a hospital was and I was scared to death. They didn't really explain or tell me anything. I called my parents/sister and they were on their way to meet me and somehow both of my uncles and their families were in Dallas so they headed there as well. Oh and unlike my many fellow IHers I didn't suspect anything wrong with me besides needing a simple pair of glasses.
Ok so first things first they had to do a CT to rule out a brain tumor. Thankfully it was normal so the 2nd step was to do a spinal tap aka lumbar puncture and find out my pressure in my brain. Again this was all foreign to me...I guess I had prolly heard of spinal fluid before but it wasn't an everyday thing to me. So I had my LP and it wasn't that bad, I was terrified before but it just really wasn't that bad. Immediately after sticking the needle in he was able to confirm I had pseudotumor cerebri aka intracranial hypertension. My opening pressure was 50, which really it was higher than 50 but the thing only measures to 50. Which is crazy because some doctors have told me normal is 8-12 but I've also heard all the way up to 18-20 is normal...which it really didn't matter because mine was sky high!
So on Monday I scheduled my appointment with my neurologist and at my first appointment he put me on Diamox aka the devil pill. It was horrible...it made me nauseous all day long every day plus my hands/feet were tingly/prickly and it made my Dr. Peppers taste like crap. Oh and like a week later he added lasix to my mix!
So 3 weeks later my head was right back to where I started. So back to getting another lumbar puncture which by the way was scheduled for Christmas Eve 08 and I was stuck in bed all day Christmas Eve and Day. This was only the beginning of this awful disease turning my world upside down! This time my pressure was i believe 38. Which was crazy because I was on meds that was suppose to lower my pressure. So my doctor said we'd hope it goes away but if the pressure doesn't lower and the side affects from the meds doesn't go away then we'd talk about a shunt.
Okay so at this point I had been suggested to go on short term disability at work because I was missing so much work and when I was there I was so sick I couldn't perform to standard. Oh and I almost forgot but my wreck is more than likely the cause...there's no way to know for sure but my MRI's show massive brain trauma and brain trauma can cause IH and my wreck is the only thing crazy that's ever happened to my head. So i'm sticking with the wreck story rather if it's right or not since there's no way to know...and it helps me get thru things considering I could've easily died in that car but didn't.
So it's Jan 09 and 3 weeks after my last LP my headaches were back and I couldn't take it any longer so they scheduled another LP. (which atleast they were on time, 3 weeks apart again) I was hoping and praying for a good number but then again I didn't care because if it was high then we could head to a neurosurgeon and get a shunt and get back to living...or so I thought! So you guessed it the number was high...it was 30! On to the surgeon I go...(this is where a lil bit of the fun begins)
Subscribe to:
Posts (Atom)
