Supermom's B-day

These pictures are not great I know but I wanted to show how Anna and I made Supermom the center of attention at her party and yes I chose to leave faces out for safety reasons. I allow all people to view my page without having to be a follower.

Supermom had a great idea to have her party at Chucky Cheese because most of her friends have kids and an adult party would have the kids super board. I had a thought...how can we make a Mom's party stick out and show her as the birthday girl. I had a dream of a boa...Well what do you know the next day at Michael's I found on. I started to get a leopard print to match some stylin' hells she has. But then I saw the hot pink... Everyone could see her coming from a mile away. Plus I knew the feathers would be hot and she would not be able to keep it on long. But I also needed some help. Supermom told me to contact her bestfriend. Well Anna took my idea and ran with it. She got a hula outfit and crown and music makers and had the Birthday cake coming out with a parade that no one could miss.

I have to tell you as an only child I am bad to just sit back and watch. But everyone here made me feel like I was suppose to be there. Supermom was best friends with my best friend in high school/ boyfriend depending on the day of the week. So I always knew her through Brian. So it is kinda like I have always known her. But with complications with my medical stuff I recently reached out to hopefully find the friendship Brian always wanted us to have. She has been great to understand my limitations I have with my illness. Where many friends were not so understanding. I told her that I guess Brian knew one day I would need that unconditional friendship.

My partner in crime, Anna, I know why she is Supermom's best friend. I felt like I had always known her. I even got to go along and play some games with some of the little girls. It was too sweet when two of the girls sat down to play a game they made a point to scoot over and ask me to sit with them. I guess that meant I was a pretty good play mate.

I ended up falling to sleep as soon as I got home then slept on and off all yesterday. I am still having fatigue issues. I think my energy will come back in time. But it is much better than it was 6 months ago before this last revision. I really enjoyed myself and the adult conversation and the kiddo convos I had. Does it change my mind about wanting kids of my own? No... But I do enjoy my friends kids and they were great.

I do agree with Supermom's 4 year old... Chucky is scary. I think he should be called "Hermin the Vermin" Just my personal opinion

6 months since last surgery

This is a view from my front steps and my red dogwood garden...

I should have posted this Sunday...Because Sunday was 6 months since my last surgery!!! I am super excited because it has been such a confusing time not understanding why the next surgery after next did not help until now it seems. I hope with all the trial and errors I had that many doctors have seen and learned that just because the newest shunt is on the market and suppose to be new and improved. They don't always work for everyone. 11 surgeries in 7 years,18 in all... I do have hard feelings with one doctor in the beginning of the problems because he was suppose to be top of the line and an expert. He was a pediatric neurosurgeon... I sometimes wonder if he was trying to see how much pain I could take. It makes me really ill to think he does these things to children that can't always tell and explain their pain. I have been promised that the things that happened to me would be discussed with him by my current neurosurgeon. When I go over all the mistakes that were made and the things he did I have been often ask why my family and I did not sue. It is simple. In 1983 mistakes were made and I had to have additional surgeries because of it. But was it done on purpose? No. I may or may not have hydrocephalus today if things had happened different. But as I have said before. They happened to me and I know the doctors saved my life. But I feel also once you sue a doctor that doctor will never see you again. With most doctors working together even from state to state. Once you are tagged as a patient that has sued other neurosurgeons are going to be less likely to want to treat you. They may even refuse to see you.

In 2002 I ask for a second opinion. After going to a University I tried to return to my doctor when I was still having problems. The nurse took me back and told me to return to the University. At another time I tried to see another doctor in the practice but was refused then too. I don't know if they thought I was looking to bad mouth the other doctor but I was just needing help. But I was treated like I had an agenda to get the other doctor. Not trying to sound like the bad guy but doctors do cover each others back.

But back to my main topic. I feel so strange to not be having to plan the next surgery. I am so happy and excited but I also feel guilty because I know there are a lot of adults and children on the roller coaster I was on. I am still on it but I think I am nearing a point where I can take a break for a while. I know in time I will most likely have to have another revision because that is just how this condition works.

One out of every 500 children are born with hydrocephalus. Many more develop it after an infection like meningitis. Also a concussion can cause hydrocephalus, and not right off it can result after a time from the concussion. More and more are learning about hydrocephalus effecting our elderly which is caused normal pressure hydrocephalus. It was so hard learning about this condition because just because one thing works for one person does not mean it works for all people with hydrocephalus.

I still have some recovery to work on. Headaches and fatigue but I am thankful to be alive and able to tell my story.

Happy Memorial Day!!!

I'm so glad there was a race on today to take my Dad's mind off the holiday. He is always torn because he believes in our freedom and served his country to come back and be talked down to and people he grew up knowing just outcast him. But he was drafted. There was no choice in the matter. My Dad had his orders to be deployed and in training he was testing gear in a gas tank and had a faulty mask. He nearly died and was out for several days as they detoxed his body... Funny thing but not too funny they use real mustard gas in training to build up tolerance to the chemicals. This probably saved Daddy's life as he was chosen to be an E.O.D. (dismantling bombs). My Mamaw told me the crazy security checks they did on him and interviewed many people through the community.

A few years ago I was talking with a man that had interred the Air force with a buddy. The thinking they had was to join before they were drafted and they could chose where they would be placed. Some thirty years later the 2 ran into each other. When they signed up they were in a room together where they were told last names A-g or h go left the others go right. The 2 were split up. The man I was talking to entered the Air force like planned. The other man when sat down in the room without his buddy was told there was too many for the Air force entry and they would be going into the Navy.

The flag shown above is in my parents front yard. Daddy wanted it for himself but also to honor our military that keep us safe each night in our beds. I know this is a day to honor our troops but if is also a day to remember the scars left behind. Not all can be seen by the eye sometimes you can only feel the hurt feeling of a young boy coming back from war not understanding why he was outcast.

Bringing a fimilar face to hydrocephalus

Hydrocephalus is diagnosed daily in our elderly. As their body's decrease in the amount of calcium and their bodies change sometimes the brain over compensates for these changes and makes more spinal fluid causing systems much like those in Parkinson's and Alzheimer's. Several years back Reverend Billy Graham was diagnosed with Parkinson's as his gate got worse and tremors made it harder to do normal daily things. He was accepting his condition when a brain scan revealed what is called normal pressure hydrocephalus. Which at the time I am sure Rev. Graham did not think anything could help his deterioration condition. But with the new diagnosis a shunt cold greatly improve his condition. He has had 2 revisions to date but it has been reported his quality of life has greatly improved.

The story of the first shunt

http://www.mindhacks.com/blog/2007/04/john_holter_brain_e.html

Breaking News!!!

Just to give everyone a bit of back ground if you don't know me already. I'm 34 live alone, well with fur babies since 1996. I bought my home when I was 20. Moved in. I was so excited. I got to place all my furniture,I chose which cabinet was for what. But even after all that time and all of my own choosing. I still go to the cabinet with the glasses to get a plate. I have switched the glasses with the plates and still do it. Someone tell me do my glasses have a magnet that draws me to them or are they really not glasses but something trying to confuse my brain.


Important stuff: The lady came that cleans my house came today. She is more like my therapist... She is truly a big help because I am still working on fatigue issues since it has not been quite 6 months since my last surgery. I have to tell you too she does not get paid enough. But out of the goodness of her heart she agreed to help me. I had not seen her in 2 weeks so I had a lot of therapy. I remember a time not long ago when researching hydrocephalus consumed my every moment. But now I still try to stay up on the latest but I actually have trivial issues to talk to her about. Things that I would not even give a second thought to because that kind of stuff didn't matter. Because my main issue was wondering is this thing I had no name for was some cancer trying to kill me.



I have to say my friends gave me the time I needed to take care of myself and understood that I went for months without talking and sometimes I would send a message and most times I just did not want to burden everyone with my own pain. It was my pain and I had to deal with it alone. I felt like if I was ask how I was and I told the truth it would burden their heart when they have their own family stuff to deal with. I ask everyone to be patient and just keep me in their thoughts and they did. Recently we have been picking up the pieces like nothing ever happened. Except maybe a few baby additions or speaking of S. K. A house a hubby and a new job. Thanks to you all for being patient with me.

Fur Babies

I'm so excited I checked my blog to see I've had 200 visits and I've just had my blog up a few days. Anyone that wants to add yourself as a follower please feel free to do so.I have noticed several from my hydrocephalus support boards. So I feel good to know that this blog is more than just my personal diary.

I want to show off my babies. I'm one of those single type people so I have fur babies as Supermom calls them. I'll discuss the single life another day.

This is a rare sight. Pepper does not like for people to know he likes to snuggle with the kitty.

This is Ginger pretending like she is camera shy. She will be 5 this year. Don't tell her she does not think she is a cat. She thinks she is a Poo-dog like Pepper. Pepper thinks he is a 2 year old little boy.

This is Pepper. He is now 11 years old. I've had him since he was just a little bit. He's got his ball in his mouth. You can loose a finger trying to get one of his favorite toys. So I don't recommend trying.

I am so glad I got pictures of my flowers before the rain and it's suppose to frost tonight.

I got to tell the truth. I was looking for a good excuse to post some more pictures of my flowers. I still am working on adding more hydrocephalus sites and my coupon sites. I've only got 2 followers but I'm excited to here from friends going to use my links.

What I want from this blog

I've been playing with my blog page for a few days now wondering what it is I want to use it for. #1. and I think most important I want a way for my friends with hydrocephalus have an easy way to find links to information. Plus I want a way to stay in contact with them and how they are doing. #2. I love to show off my flowers. I have gardened since I was a teen but never kept a history of my flowers and ideas. #3. I am a coupon addict. When gas prices went up grocery prices went up. But gas prices are below that dreaded $5 mark. But grocery prices did not go down. So I have my coupon sites here to. I'm a second generation couponer. I can remember being super board as a little girl while my mom went through her coupons. But now we have coupons online and I updated our filing. Which is still a work in progress. We are even setting up a room just for couponing and the storage of our coupons.

Look what rain can do

This is the creek where it washed Debree into my uncles fence. The water has been a good ways up in the hay field.

Just went down to my aunts house to see how bad the creek flooded last night. We had fire trucks enter from the Madison side and drove down to my house. In 2004 the creek came out of it's banks for the first time in over 20 years. Many times it has touched the bridge but not over flowed.

Here you can see a tree still lodged under the bridge. Most of the trees had been removed when we got down there. Usually the culvert it 2.5 to 3 feet from the top of the water. And you can wade across and even see the bottom.

Here you can see the edge of my aunts house. After the creek flooded there basement my uncle had the creek near their house widened so hopefully it would not enter the house again. It didn't but you can see debre where the water has been.

Coming back toward our house the road it started to undermine and break off. My Dad has placed some cones to mark the weak places to hopefully keep cars from driving near the weak spots.

Thanks Supermom

So sorry my first post was so exciting. But this is who I am and my medical issues have made me part of the person I am today. I have talked over doing a blog for a while with Supermom because I would like to share my gardening pictures and hydrocephalus links with friends and I have tons of other stuff on my mind too. While I was playing around with it this morning. Supermom must have seen smoke coming from my computer. I was attempting to place pictures and got it all crazy. I am so proud of my page. Supermom named it for me and helped me get it set up. Now I just got to get it going...Thank you Supermom

I have hydro, hydro doesn't have me

When I was 8 years old I had a brain tumor and did not receive the right medicine to keep the swelling down from the surgery. For 9 days my neurosurgeon was gone researching my tumor in Washington D.C. It was the first aystrocytomia at Mission hospital. After 9 days my neurosurgeon came in and was upset to see I was deterating. I would respond at times but would fall back to what I call a sleep state. Plus both my eyes had crossed and I had lost the ability to walk. That day I was rushed into surgery where another surgeon placed a shunt. Which was suppose to take the swelling down and be the cure to my issues with the swelling. We were never told if we needed any kind of after care for the shunt. This was in 1983. The next 6 months I learned to walk and had radiation for the tumor that had been left around my brain stem. I also had 3 surgeries to straighten my eyes. After 2 years of care under my neurosurgeon he released me when I had no reoccurring of the tumor. When released my mom ask if or when the shunt needed to be removed. At that time we were told the shunt did not need to be removed and most likely did not work any longer.

In the 8Th grade I was put in the hospital with very bad headaches. A spinal tap helped the pain but the only thing done with the shunt was a shunt gram. I was determined to have a viral meningitis.

In 1995 I was thought to have a bad gallbladder but in surgery scar tissue was found and had to be removed to get to the gallbladder. I did have gallbladder problems but the pain was caused from scar tissue.

2002 3 days after my grandmother died I was having pain once again similar to the pain I had in 1995. I was taken to the ER several times from the pain and it got to the point I was passing out from not being able to breath. The surgeon came in that had removed the scar tissue before and agreed to do surgery to see if the problem was scar tissue again. In surgery he saw the cause was the distal tube was causing the adhesion. He called in the neurosurgeon that placed the shunt in 1983 and they decided it was not working. ( I was lying down on the OR table when they were watching it and I know now that laying down slows the drain of the shunt and most likely would keep it from draining) It was then clipped and removed from my abdomen.

The next day I had a huge knot form where the incision was. I was scared it was infection. That evening I saw a neurosurgeon on call and he drained the incision and it was not infection, just spinal fluid. The shunt was free flowing into my abdomen.The next day I had emergency surgery to try to piece the tubing of the distal. After this surgery it was still free flowing into my abdomen. I saw the neurosurgeon again, he was not sure of what to do. We discussed my options and since I was told the shunt did not work any longer. I agreed to removing the shunt. I did not think I had any other options. The morning of the surgery to remove the shunt system the neurosurgeon came in to discuss that he was uncomfortable doing the surgery and it was very likely I could have excessive bleeding and could die from this surgery. My parent's then ask for another doctor's opinion. We were sent to a University. The neurosurgeon told us the neurosurgeon in Asheville was right but it was totally safe to take the shunt out. When he took the old shunt out he placed a manual device to drain fluid to be taken out the next day. 4 days later after watching the manual drain. It was determined that I was dependent on a shunt. I was then told I needed a shunt back in.

After the surgery to place a new type shunt that was a programmable. I had to be rushed back to the ER 4 hours away for them to reprogram the shunt. I had 8 months or so of driving back and forth to the ER ever 3 weeks to have the shunt reprogrammed and to be returned home and told nothing was wrong. I kept getting weaker and the pain was getting worse, each trip was harder than the last. My parents then told the neurosurgeon we needed a doctor closer to home. Really we just wanted another doctor because when I ask to see another doctor in the office I was ask what the problem was. So we found another neurosurgeon 3 hours away in South Carolina. Another doctor same story.

After 14 months of playing with the program I came in and he started in telling me there was nothing more he could do for me to go back to the University. I was crying as I left, my mom was walking out with me. I had been asking for a long time what I was going on with me and had done research on shunts but really did not know what to look for. I was looking at my discharge papers, which my mom usually does for me, but under diagnosis I saw the word hydrocephalus. I ask my mom if she knew what it was but she had not ever heard the word. But that is all we needed a word. That was my diagnosis. That week we found the hydroassoc.org on line and things started to look more positive. My mom contacted them and helped us find a doctor. My current neurosurgeon says my case is difficult but he is still trying. He tested the shunt the university had placed. I was amazed that there was a test that could tell if the shunt was even working. I had never had another doctor do anything but press on it, do an adjustment and insist it was working fine. The next few days he had me in surgery. When taken out and tested it was found to have 3 defects. It would not keep a program. He replaced it with the same type of VP shunt but tested to make sure this one was draining correctly.

I have still been having issues with the programmable shunt having constant headaches. May of 2007 I had the VP switched to a VA to see if the VP had not been draining right. Then June 2007 I had an anti-syphon device put in to help regulate the flow. When working normally a shunt will open or dump when you sit up and the anti-syphon slows it to release to a trickle. Finally after 6 years I am starting to live again. I am now unable to work and still going to pain management. I still have headaches but it is a lot better than where I have been. I have Dr M. and his P.A.'s Julie and Lisa to thank for letting me live.

November 24,2008 still having problems with headaches and after confirming the shunt was working we discussed the option of a non-programmable shunt. Our theory is that I had a non-programmable shunt for 19 years with no issues. Maybe I just can't adjust to the newer type shunts. I've been on a long road but I'm glad it happened to me and not someone else.