Surgery is a go...

Today Mom & I revisited the Neurosurgeon to review the results of the spinal tap procedure described in my last post. The Doc recommended that Mom have the shunt surgery and after reassuring her that as far as brain surgery goes, this surgery is minor. Then he proceeded to tell us of all the possible risks, no matter how remote.

We do have to get “cardiac clearance” before we can proceed with surgery; so I have contacted a cardiologist and will be moving forward with this testing next week. If all goes well, the shunt surgery should take place the first week in June.

Mom continues to be surprised that there is anything wrong with her, and that it could be serious enough to require "brain surgery". She is terrified of someone "messing around with her brain". She asked what would happen if she refused the surgery, and I explained that she would slip into an "Alzheimer's fog" and be in a nursing home sooner rather than later. And that if someone had an Alzheimer's diagnosis, they would be thrilled to have this type of treatment option available to them that might offer some hope of independent living again. She claims that she doesn't "feel sick"; but the days just slip by without her awareness, and while I try to provide examples of the symptoms of the condition, she is unable to comprehend that she is actually exhibiting the behaviors I describe.

I am hopeful that the surgery actually does relieve her symptoms and she is able to continue to live independently. My greatest fear is that the NPH symptoms will be relieved only for Alzheimer’s symptoms to arise in their place.

For now, I will focus on the positive that the surgery is proceeding and there is a glimmer of hope that she will have some memory restoration, not to mention greater balance control; which for a nearly 80 year old woman is also very important.

This is Spinal Tap

I took Mom to consult with the Neuro Surgeon and, not surprisingly, he recommended that she have another Spinal Tap called a "large volume lumbar puncture" before proceeding with shunt surgery.

This test will remove approx. 40mL of spinal fluid (a bunch), which will hopefully result in near immediate symptom relief. The Doctor stated that she should show the most improvement during the first day or two following the procedure; therefore, we will spend a lot of time together over that period so I can observe her actions. We will then meet with the Surgeon again to review the results of this test and determine if he will proceed with the shunt surgery.

Mom expressed extreme fear and concern about the surgery and the Doctor spoke with her to attempt to alleviate her fears, describing the surgery in fair detail. She seemed moderately pacified, but I suspect she will forget his explanation and her fears will increase again. Upon leaving the appointment, she said "That's the most I've ever had explained about what's going on with me"; which is not true, her Neurologist and myself have explained on numerous occasions what is happening, what to expect and viewed her MRI pictures vs those of someone without NPH. Sadly, she forgets these conversations.

She does seem appreciative that I am taking care of her, and ensuring that she is getting the treatment she needs. But, she doesn't like the treatment that is being recommended. While no one looks forward to brain surgery, the potential to regain increased quality of life is worth the risks, because without the surgery her prognosis is grim.

I am looking forward to scheduling this test as soon as possible since she becomes more fragile by the day. Here's hoping the next update will hold good news about the outcome of the "large volume lumbar puncture" test.

A Gift from Strangers

Reposted from the Science and Society section of ABCNews.com
March 27, 2009 6:03 PM

They began to show up after the Challenger disaster. In 1988, during NASA's first shuttle flight after the accident, a bouquet of roses was delivered to Mission Control in Houston. Seven red ones, plus one white.

There was a note attached -- best wishes and a safe flight from Mark and Terry Shelton and their daughter MacKenzie -- but it didn't say who they were or where they lived. After a bit of hesitation, controllers put the roses in a vase on top of the flight director's control console, a bit of color amid readout screens and flight plan booklets.

Milt Heflin, a veteran flight director, was touched and intrigued. "Frankly, people didn't send things like that to mission control," says NASA's James Hartsfield. Heflin called the florists who had delivered them. They were at first reluctant to give out personal information.

It turned out the Sheltons were just an American family, like yours or mine, from the Dallas suburbs. Mark Shelton, a computer engineer, had been a space buff since childhood. His wife Terry is in the clothing business. MacKenzie, a toddler in 1988, is now 23 and studying to be a special-education teacher.

"I thought it would be nice to remind them the public is out there, and they care," said Mark Shelton in a phone interview. "It's a dangerous job the astronauts have, and so many people are responsible for their lives, and they take it very seriously."

The flowers have kept coming, one bouquet during every shuttle flight. There will always be as many colored roses as there are astronauts on the mission (most shuttles carry seven), plus one white one. Heflin asked why. In memory of the astronauts who gave their lives, said the Sheltons.

This month's mission, STS-119, flown by the shuttle Discovery, was the hundredth since the Sheltons began their quiet tradition, and NASA invited them down to Houston for a ceremony of appreciation.

"I think it means so much because we never asked for it," said Heflin. "We never expected it. We believe it truly represents the sentiment of a large part of the public, as well as a very personal gesture."

(Photo: the bouquet for STS-114 in 2005, the first flight after the Columbia accident. Courtesy NASA.)

Diagnosis Confirmed - it's NPH

I took Mom to the Neurologist today to review the results of the cisternogram testing last week.

The testing, along with the results of the earlier MRI and neuropsychological testing confirmed a diagnosis of Normal Pressure Hydrocephalus.

We will now interview for a competent Neurosurgeon with experience treating this condition and move forward with planning for surgery.

An interesting developement was that Mom's primary care physican discovered that Mom had a Brain MRI in 2003, so we will be getting copies of that test to compare with the more recent MRI testing to see if there was any spinal fluid accumulating in her ventricles at that time. This test would have been closer to the time of her fall in Mexico that I remember being the onset of these problems. The films should be ready for me to pick up next week.

I will also be giving Mom B12 injections for the next 6-7 months. You can say that she is less than thrilled with this news. But I've done this before and feel confident we will have no trouble with the administration. Now ensuring that she takes her other prescription medications as prescribed is another matter.

Mom continues to be confused by the entire process, and I have to continually remind her of the simplest tasks. I pray that we can schedule the surgery in the next few months so the healing can begin.

Radioactive Isotopes

Today Mom had a radionuclide cisternogram which is a fancy way of saying that she had a spinal tap where they injected radioactive isotopes into her spinal fluid then took some pictures to monitor how those isotopes travel through her spinal fluid and brain.

The wonderful radiologist in nuclear medicine, Roy, explained to me that the isotopes will travel through the spinal fluid and the the pictures they are taking will document where those isotopes end up; if the spinal fluid is circulating as it should or if it's leaking or pooling in placing in places it shouldn't.

Roy took two series of pictures today and we go back three more times over the next three days to see how those isotopes disperse over time.

I'll be calling the Neurologist to schedule an appointment to get the results of this testing for next week.

Until then...Mom still doesn't understand what all the fuss is about.
Says she feels fine.

Testing 1, 2, 3, and 4

Testing has been scheduled to determine if Mom actually has NPH (Normal Pressure Hydrocephelus), and if she is a good candidate to have a shunt surgically inserted into her brain to have the excess spinal fluid drained.

On Wednesday, Mom will undergo a Lumbar puncture (spinal tap):

This involves removing a large amount of spinal fluid. The CSF will be tested for abnormalities, but a significant "side effect" of this test is that the "symptoms" of the NPH may be temporarily lifted after the procedure. If this occurs, it is assumed that Mom would likely be a good candidate for having a shunt surgically implanted in her brain to drain excess CSF on a long term basis.

Then on Thursday, Friday, and Saturday, she will have a Radionuclide cisternogram.

Essentially, radioactive dye is injected into the CSF in the spine and several hours later pictures are taken to determine how the dye has traveled through the nervous system. This test is repeated over a three day period. As with the above mentioned spinal tap, there should be some symptom relief upon completion of these tests in addition to the actual results of the dye distribution. As I learn more about the differences in what they look for each day, I will update this post.

Continued prayers are appreciated as Mom embarks on this week of difficult and likely painful testing. She is still surprised that she needs all this "medical stuff", as she claims to feel fine. I have emphasized to her the seriousness of the condition, but I fear that since she doesn't "feel sick", she fails to comprehend the gravity of the situation.

Normal Pressure Hydrocephalus

Some of you are aware of the memory problems my Mom has been having.

We've been having a variety of tests done over the last few months and are finally getting some answers....hopefully.

I spent (most) of today at the Neurologist with Mom. The good news is....Mom MAY not have Alzheimer's. (YEA)

But it appears she does have Normal Pressure Hydrocephalus. In short that means she has a build up of spinal fluid in her brain that shouldn't be there and may be causing her memory problems (along with dizziness, unsteadiness & general poor motor coordination).

We need to do some more testing, but there's a possibility that surgery could be done to drain the fluid which MIGHT relieve the symptoms...or at least keep them from getting worse. However, as with all surgery of the brain, there are definitely risks of complications, and it might not help. I'm just hoping she qualifies and is one of the patients that it DOES help.

Please keep us in your prayers.

The Way To A Happy New Year

To leave the old with a burst of song;
To recall the right and forgive the wrong;
To forget the things that bind you fast;
To the vain regrets of the year that’s past;
To have the strength to let go your hold
Of the not worthwhile of the days grown old;
To dare go forth with a purpose true,
To the unknown task of the year that’s new;
To help your brother along the road,
To assist with his work and lift his load;
To add your gift to the world’s good cheer,
Is to have and to give a Happy New Year.

~Robert Brewster Beattie

Merry CHRISTmas!

One of our family traditions during the Christmas Season has been to visit Santa Claus.
MJM writes his letter to Santa when we visit "Santa's Village", then we visit Santa and have a photograph taken. With the 10th photograph taken this year, we decided to take a look back. MJM has come a long way in his understanding of Santa and the Christmas Story. He's proud that there really was "another" Luke before that Skywalker character...and he told a pretty inspiring story too. ;)

The story of Christmas comes from the Bible. Here is the way it is told by Saint Luke:

And she brought forth her first born son, and wrapped him in swaddling clothes, and laid him in a manger; because there was no room for them in the inn.

And there were in the same country shepherds abiding in the field, keeping watch over their flock by night. And lo, the angel of the Lord came upon them, and the glory of the Lord shone around about them; and they were sore afraid. And the angel said unto them,

"Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people. For unto to you is born this day in the city of David a Savior, which is Christ the Lord. And this shall be a sign unto you; ye shall find the babe wrapped in swaddling clothes, lying in a manger."

Merry Christmas and a Happy New Year!!!!

Great Grandma V

Her soul left us this evening, but we really lost her several years ago to the insidious mind stealing disease known as Alzheimers.

Grandma V was one of the most special people I have ever known. She & Grandpa V welcomed me into the family with open arms & loving hearts 18 years ago. I always felt as welcome in their home as if I had grown up there.

I could give a recounting of her life, but I'd rather state simply that not only was she the foundation of a family, she was a beloved member of her community. I'm told that even the Hospice staff at the Nursing Home cried when she passed. I can only hope to pass on the lessons she quietly inspired to my son. Certainly that would be a legacy she would be proud to see endure.

While I am saddened we have lost such a fine woman, I am grateful that Grandma V has been freed from the body that failed her to be reunited with her Savior and husband of 60+ years. I know she is joyful to have reached her eternal home, and will have a large meal waiting for us when we arrive there.

"I'm Spending Christmas With Jesus This Year"

I see the countless trees around the world below With tiny lights like Heaven's stars reflecting on the snow The sight is so spectacular, please wipe away that tear, For I'm spending Christmas with Jesus Christ this year.

I hear the many Christmas songs that people hold so dear But they can't compare with the Christmas choir up here I have no words to tell you, the joy their voices bring For it's beyond description to hear the angels sing I know how much you miss me, I see the pain inside your heart But I'm not so far away, we really aren't apart.

Please love and keep each other, as my Father said to do For I can't count the blessings of love He has for you I can't tell you of the splendor, nor the peace in this place Can you imagine Christmas with our Savior face to face?

I'll ask Him to light your spirit as I tell him of your love Then pray for one another as you lift your eyes above. So, please let your hearts be joyful, and let your spirit sing For I'm spending Christmas in Heaven, and I'm walking with the King.