Hydro Angels over Texas

by Wendy Rigby / KENS 5
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kens5.com
Posted on November 24, 2010 at 2:29 PM

Updated yesterday at 4:46 PM
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•Hydro Angels Over Texas
•Dr. David Jimenez, UTHSC pediatric neurosurgeon
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SAN ANTONIO -- Neurosurgeons at University Hospital are helping a baby with an extraordinary problem. His head is more than twice its normal size due to hydrocephalus.

11-month-old Klaus is from West Texas. His untreated hydrocephalus has created a terrible problem. Cerebrospinal fluid has swelled his head 131% above normal size. Doctors in El Paso were unable, and in some cases unwilling, to help.

His family turned to University Hospital and pediatric neurosurgeon Dr. David Jimenez, chairman of the department of neurosurgery at the University of Texas Health Science center, for help.

“It’s like nothing that I’ve seen before,” Jimenez stated.

Doctors rushed baby Klaus to the operating room where they put in a drain to slowly relieve the deadly pressure.

“This is something that probably is going to take weeks, maybe over a month, maybe longer until we get to the point that we’re comfortable enough to put in a permanent shunt,” Jimenez explained.

The child’s father, Klaus, Sr. and his mother, Beatrice, are praying for a miracle for Klaus, who may end up blind, deaf, disfigured or disabled. He faces a long road to recovery and extensive surgery. For the first time, though, the family has hope.

“What I can tell about my son is he’s a great fighter,” Klaus, Sr. said. “He’s a warrior.”

“He’s stable,” Jimenez said. “He’s doing much better. Ever since he arrived in the hospital a week ago, he’s now moving more. He’s more interactive. My hope is that he’s going to be as normal as we can possibly get him.”

“You never give up on a baby’s brain,” he added. “Never.”

Baby Klaus’ head is already nearly a foot smaller. For his parent, who were told he wouldn’t live long after birth, just getting to this point is a relief.

Happy Birthday Granny!!!!

I should have posted this yesterday. But with my Thanksgiving post I wanted to give my Granny a post of her own.

Ever since I was a little girl I thought Thanksgiving was always Granny's birthday. But November 25th is her birthday. She was 82 yesterday.

My Grammy is my mom's mom. She is the only grandmother I have left. She has always been my spunky grandma not your traditional grandmother.

She was married had 4 kids. Never learned to drive. So she has always had to depend to someone to drive her places.

I can remember growing up how upset she would get not being able to find someone to take her places. It continues today. She has a daughter that lives with her but will upset her and not take her places.

My mamaw got her drivers license after her husband died at 53. Granny should have got her license when her husband died.

Happy ThanksGiving part 2

I originally had a blog pot for today to post this morning but it posted last night. Sop I felt like telling you how my family prepare dinner.

My family does not believe in my mom having to slave in the kitchen for 3 days getting ready for everyone else to eat and leave her with a mountain of dirty dishes.

My family prepares everything together so one person isn't exhausted trying to do everything by their self. There has been some years some of us would be sick and everything would be left on that one person and you can really tell a difference. You are about too tired to eat then you still have to clean up the dishes.

So I went to my parent's house yesterday to help prepare some things for today. Momma and Daddy already had a system going. Momma was washing hugh pans for mixing up dressing and Daddy was chopping celery and onions for the dressing. On the stove was the cream of chicken and butter melting.

All I could do at first was sit down then the pans were brought to me with onions,celery,bread crumbs, seasonings.

I had a big spoon to mix with. Daddy pup on some rubber gloves. Momma had buttered 4 pans for the dressing.

So momma started breaking bread and then the celery and onions as I'm mixing. Then add the seasonings and the hot mixture. I stir it and mix until I start getting a cramp in my hand and the dressing cools down.

Daddy then takes over and mixes it. With the gloves on he can be very clean and pick up handfuls of dressing leveling it out and making it perfect.

They both help to do the cooking dishes along so there won't be dinner dishes and the pots and pans that were cooked in. They also precooked the sweet potato casserole.

Daddy lets momma sleep in and gets up early and puts on the turkeys. So when momma gets up she will put a pan of dressing in the oven if daddy hasn't already. The only thinks left to do is fix some peas. They also fixed creamed corn last night. It will just need to be warmed up.

When we cut the turkey we will fix some dinners before we eat so our friends that would not have dinner will have their dinner as warm as we can keep it.

My granny sometimes comes to eat with us if her Brother is not coming to eat with her. Then she also likes to cook in case my aunt Karen and her sons come out.

This year granny is feeling really bad and fatigued. So while mixing up our dressing. We made her a pan. Oh and my mom and Granny likes this really really nasty bean salad. So momma made her some of the bean salad.

I tell you the bean salad is bad, I can't stand the smell of vinegar no less the smell. Bean salad has wax beans, sugar and vinegar. I think that's the mixture. I don't know why it don't make your teeth fall out!

I hope everyone has a happy and safe Thanksgiving. I am thankful for each and every everyone of my family and friends. I'm even thankful for the people I'm not connected with today for one reason or another because its experiences in life that make appreciate the true meaning of friends and family. No one and nothing can break our bond. I love you all and I'm thinking of you today.

Happy Thanksgiving

I hope everyone is home having a nice Thanksgiving dinner today. It use to always be my parents, my mamaw and me that spent the holidays together. But Mamaw died 3 days before I started being hospitalized for complications in 2002.

My parents and I had debated for several weeks to even have dinner today or not. They were not going to eat without me. I was not eating anything besides soups.

But I am getting away with eating small meals. So we will be having Thanksgiving dinner today.

We also take some meals to a few elderly that don't have family or there family don't live near. One man we always took a meal to passed a way this year. Its sad knowing he is no longer with us but I'm thankful today he is with God.

I'm remembering some of the things I did this year to give or to help others. It makes me feel good when I can help someone.

I am thankful for all I have and all the good that has happened. I am thankful for the family members that have stuck with me through my illness. I am very very thankful for my friends because its much easier for you to walk away and live your own life. It takes a big person to hang in for all surgeries I've had.

I have a surgery date

After three weeks of being turned upside down and inside out, having many useless test I have a surgery date. I actually came out of this appointment with some answers that I really did not know was an issue.

My systems just like in the past is shortness of breath, pain in abdomen that gets worse after activity and bloating. What do you think when you think of bloating? Gas! He said most likely the adhesion were pulling on my intestines causing a bowel obstruction. ( Hmm... wonder if that's why I gained 8 pounds eating nothing but soup and slim fast?)I had felt so energetic before this now I'm back to feeling tired and fatigued. I guess my body can't cleanse the toxins (to put it in a nice way) out of my body.

He told me if I only had pain alone they most often don't do surgery because doing surgery does cause more adhesion. Even with it being liproscopic (sp?) It does reduce the scar tissue but any surgery causes scaring.

There is a chance since I have had admissions clipped twice before I may have to be opened up for surgery. Oh then there is all the VP revisions I've had that cause the scar tissues in the first place. Well not the revisions but I think the distal floating around for 23 years is what they think did it. The Dr left me room to grow and left the distal a bit long. Well... I stopped growing in the 8th grade...LOL I'm only 5'1' That is just a thought. but surgery started them for sure.

So my surgery date is December 10th,2010. I found out 2 days before Thanksgiving. I have been so worried that I was going to get as sick as I was in 2002. I was passing out and having to be put in the hospital being told I had everything under the sun. I was getting so scared.

I'm not looking forward to surgery so soon after my shunt revision but my head rushes are getting less and I'm so ready to get back to doing somethings.

WNC Brain Tumor Support Group

I told everyone about my meeting I thought I would link you to the site so you would have easy access for anyone in need of this group or their help. Click on the link and it will take you directly to their site. WNC Brain Tumor support Group

WNC Brain Tumor Support Group

I have been research this group online for several years. When I started having complications with my hydrocephalus I wondered to myself if this group would be a good place for me since I had a brain tumor in 1983 and developed hydrocephalus as a complication after surgery.

I contacted George the president and been attempting to make it to the meeting for nearly a year now. We had got to know each other through email and facebook.

The group was very very warm and welcoming. I got to discuss my hydro and what it was. I learned about other cancers.

The speaker Thursday was consulting about vision issues. Which I have had and had several surgeries to fix most of mine. She showed many different types of visions that were unable to be corrected. These put a bit of fear it me but also reminded me how lucky I am and have been.

I like to think living a good life and doing good things is the reason I have been so blessed.

Something that I realized in the group no one has a neurosurgeon here in Asheville. They were all in Wake Forest, winston Salem or Duke.

Right now I have my parents to help me but they are getting older and they are the only family I have. I've never been able to drive to Charlotte even before the 9 years of complications.

I did it one time with not so good of an out come for a boyfriend. I have never had very good endurance even before I knew about the hydro.

So something I need to look into is how do I get to doctor appointment 3 hours away.

What are abdoninal adhesions?

Abdominal adhesions are bands of tissue that form between abdominal tissues and organs. Normally, internal tissues and organs have slippery surfaces, which allow them to shift easily as the body moves. Adhesions cause tissues and organs to stick together.

Abdominal surgery is the most frequent cause of abdominal adhesions. Almost everyone who undergoes abdominal surgery develops adhesions; however, the risk is greater after operations on the lower abdomen and pelvis, including bowel and gynecological surgeries. Adhesions can become larger and tighter as time passes, causing problems years after surgery.

Surgery-induced causes of abdominal adhesions include

•tissue incisions, especially those involving internal organs
•the handling of internal organs
•the drying out of internal organs and tissues
•contact of internal tissues with foreign materials, such as gauze, surgical gloves, and stitches
•blood or blood clots that were not rinsed out during surgery
A less common cause of abdominal adhesions is inflammation from sources not related to surgery, including

•appendicitis—in particular, appendix rupture
•radiation treatment for cancer
•gynecological infections
•abdominal infections
Rarely, abdominal adhesions form without apparent cause.

Not really feeling good about Dr apt.

So I met my new general surgeon today. She got my CT results. Everything was normal as I figured.

I told her my systems and about my pain. How I was having trouble breathing. I also told her about how it happened in 2002.

The thing about scar tissue it can't be seen on a CT or MRI. So she was going off what I told her. She wanted to see the surgery report from 2002 when I had that surgery. She found a surgery a week before but not that one. Until she can see where I had the surgery before and understand a bit better about what happened back then. I have to wait.

The Dr that did surgery on me then assist her so I'm hoping he will be able to explain to her how bad things got back then.

I had adhesions restricting my diaphragm and causing me problems breathing to the point I was passing out.

The other thing if adhesions are not causing any kind of an obstruction well I'm not so sure she wants to worry with them.

Honestly drs can't see pain and well the patients just hurting have to stand in line. Looks like I will be playing the waiting game.

Getting ready for my doctors appointment

I'm so glad this appointment is today. I feel like things are hanging out of my abdomen when I try to stand. Walking causes sharp pains that feel like rubber bands.

I take several things with me to the doctor each time I go to save time and just to keep from repeating myself all the time.

I keep several files on my computer of my daily medicines with medicine allergies. With having 19 surgeries I also have a list of my surgeries with the dates. I will often write down notes to ask or talk to my doctor about. Especially if its one of those doctors that wants to walk in sit down 30 seconds and leave. It puts you under pressure so you can't think what you need to ask and talk about.

I have found taking the list of surgeries with the dates is a really big benefit. There is no possible way a doctor can read through 20 or 30 years of medical records.

Often when people explain past surgeries they leave out important details that the doctor needs to know. With an outline the doctor can look at the date of the surgery or surgery in the past and read the detail.

So often many forget that they are not the only patient the doctor has and you are not their BFF. You can not give enough information or just totally give the wrong information. Especially if you have had a lot you may cross information in explaining to the doctor.

When you take a list of your medicines its so nice not having to try to remember everything and the dose. Plus the small space they provide for medicine is a joke when it comes to my medicine.

Not a day too soon

Tomorrow is my Drs appointment with the new general surgeon I have been referred to she is in practice with the Dr that did my 2 adhesion surgeries before.

In 2002 I was in and out of the hospital and ER for several weeks before they finally took my mom's word that I had adhesions.

After being unreal test even being put in a semi coma for a week. I was having such bad breathing problems then I would pass out. I know now that was from scar tissue around my diaphragm.

I went to a local church that was having a craft sale yesterday and apparently walking around the basement for that few minutes was too much. I started feeling sharp pains walking around the room. Now today I feel like my insides are hanging out and have sharp pains just laying in bed.

So tomorrow we will see what the Doc has to say. Please cross your fingers.

The good, the bad and the ugly

Ill let you decide which is which. Believe it or not my daily headaches are not as bad these days. I'm still having issues with getting out of cars and having head rushes when I stand up but they may not be as bad.

But what is driving me nuts is constantly hurting in my abdomen and being bloated. What do you automatically think its the distal of the VP causing adhesions. Well, kinda right. The VP caused adhesions. But the VP is gone. It seems the adhesions are back for the third time.

Monday I see a general surgeon about the pain. I have had lab work and a CT already to rule out other things so hopefully I won't have to do a bunch more test before I get this taken care of.

I was getting energetic and feeling like exercising again. Sometimes its like you take 2 forward and 3 back. But at least its me and not someone else.

At one time I had said I hoped I had been blogging or even known about blogging back in 2002 when this first started with the last 9 years of complications but in a way I'm getting to talk about it now because the things I'm going through now are just like then. Only then I didn't understand the systems.

I tried swimming Wednesday I had not been since I had the bad spell hurting. I planned to just float around and kick in the water. I had no idea that little movement would pull on my abdomen so much and I could not even move enough to stay warm. I was miserable. So probably won't be trying swimming or floating anymore anytime soon.

CT

For the past several days I have been taking it easy not even doing swimming or the treadmill to keep my pain in my abdomen to a minimum. Today I was scheduled for a CT and actually feeling not so bad. The car ride that really hurt me the other day didn't make me feel like I was dieing.

My back oddly did hurt a bit in the car. Then I got to the place where I had the CT. I had to drink a drink and wait an hour. That sitting was fairly uncomfortable. I felt the pulling and tightness in my back still. This is not a regular back pain its like strain from inside. I wondered if it was the adhesions.

After an hour and a half they took me back for the CT. It did not take that long. But twisting up and down on that CT table must have really bothered something.

I've got the pain back, my stomach is bloated and I'm short of breath. ~sigh~

I really had hopes of getting established with the general surgeon I have an appointment with coming up soon. I thought get established let her follow the progress of the adhesions and rule out other stuff then I will have a Dr that is familiar with my condition and past and not have to rush into the ER and take any Dr on call. I'm really trying to avoid that.

Who knew?

I had surgery and start getting my energy back. I start swimming slowly and start the treadmill. I also start having sleep overs with my niece.

Who would have thought slowly getting my energy back would wake up these adhesions in my abdomen. But I have been so inactive for so many months I assume they just had time to grow and attach to my organs once again.

I have a video of my very first adhesion surgery it was incredible how my stomach,intestines,gall bladder and diaphragm were all connected by scar tissue.

I had suffered from pain for 20 years from that pain when it got so bad it started making it hard to breath. I know now the scar tissue around my diaphragm was restricting my breathing.

It got so bad I was living on protein shakes because that is all I could eat without major pain. I really wish I knew about blogging back then.

At this time it was 2 or more years before I would ever hear I had a condition. Rather read on my discharge papers diagnosis hydrocephalus.

I have my Dr. Appointment in just a few hours. I would hope she could do surgery but I'm really thinking she will help me to get into a general surgeon.

I can't believe just months after brain surgery I'm looking at another surgery. I know I can lay around and nurse this and the pain will go away but I would like to get back to my life.

I have done some research and found where they can use a mesh film that desolves in 7 days after surgery. When most scar tissue forms. I have read that you have to be opened up to do this though.

BUT! Talking with a friend she has had 6 surgeries for endometrois sp? And she told me she had it without being opened completely.

How close are you?

For years its been spooky how my mom and I feel each others physical pain. Even when we were working and not see each other for several days. She has tried hiding pain when I would come in complaining of pain to find out she was hurt.

I have been an emotional wreck since I lost the young child in my life. My best friend has been my shoulder to lean on through all this.

Yesterday I really tried hard not to speak every other word about her. When my BFF to me she felt like crying for no reason. Nothing at all was wrong. I told her I had felt like a ball of nerves all day. Then we realized she could be feeling my pain.

I do this with friends I get very close to I felt her getting nervous at a party she had recently.