UTTERLY CONFUSING

I don't know all the details yet. Not sure if I ever will fully understand it all. Carl's tests came back...normal. He still has a tumor. He still has Acromegaly. But, the Acromegaly isn't active, or isn't affecting him right now. His doctors can't explain it and say this has NEVER happened. Miracle? Possibly. We don't know...yet. SO...no surgery. That's right..NO SURGERY. At least not for now. They will continue to test him. But, the last two times, every single blood test came back...normal. His condition and tumor simply aren't doing anything. He has some appointments in December and again in February. By then, they might know if they need to approach the idea of surgery again. I'm completely baffled - just as baffled as Carl AND all of his doctors. His levels either continue to give false readings or his levels stabilized and his conditions just stopped. Praise God (don't cry, Andi...BE STRONG WOMAN). Wow...wowo. Seriuosly? They aren't doing anything? NOPE, they're just there now.

WHO DO YOU WEAR GREY FOR? Carl Wilson Fundraiser

The night was amazing. For those of you who could make it to the fundraiser, you know exactly what I'm talking about. It was a great night and I want to thank everyone involved.

Carl has a glucose test this morning. He then has to meet with the neurosurgeon in about a week. We will see how that goes. Please continue to pray for him.

BLOOD DRAW

Carl had his blood draw today. He found out he was supposed to fast, so he is fasting tomorrow morning for his glucose test. They rescheduled his neurosurgeon appointment for after Thanksgiving as it takes a week to get the results back. He ended up speaking to his Endocrinologist (wonderful woman). The following is what he found out:

They are going to try medicine to control his Human Growth Hormone (HGH) effects. Doing this will not stop the HGH from increasing. This will be done to buy some time until his next surgery. The surgery will still take place sometime in the near future. Dr. Singhal (his Endocrinologist) says that if neurosurgery does not (basically) get their act in gear and schedule surgery, she will send Carl elsewhere. Some of the concerns they have with the increasing HGH levels - it can cause diabetes, heart conditions/complications, organ damage, etc. When the tumor is finally out, they may still need to perform follow-up work. Some people are perfectly fine after the surgery, some need additional work. They ask all the time if his hands and feet are growing - they are not growing. She is aware of his other symptoms (eye twitching, body hair, fingernails) and says that although they really don't relate too much with his condition, she did note them. It is possible the hair and nails are a result of his currently screwed up testosterone levels. If the tumor goes untreated, it will continue to encroach on other parts of his brain, so they do need to remove it. They want to test the tumor to make sure it's not the kind of tumor that will grow back.

Basically, there are three steps:
1st step - Surgery
2nd step - medicine

GLUCOSE TEST

Carl is getting his glucose test, along with a series of additional tests this morning at the VA. They are continuing to try and find out what is going on with him. The doctors are no further than they were a couple weeks ago. Tomorrow, he meets with his neurosurgeon. I am thinking of joining him.

Although Carl is not any further in receiving an additional diagnosis, he is experiencing additional symptoms. Please pray for this. Carl and I have noticed the amount of his body hair is increasing, his toenails and fingernails are growing at a faster rate, he still has short-term memory issues and some short-temper issues, he is still tired all the time and most recently, his eye has begun twitching again. The reason his eye used to twitch is because the tumor was pressing on his optic nerve. He was instructed to go off his Cabergoline (the purpose of this medicine is to shrink the brain tumor). He has only been off the medicine for a couple weeks, so it seems odd that his eye would begin twitching again this quickly.

DISCUSSION WITH DOCTOR

::scratching head::

This will be ridiculously broken up. I wrote as much down as I could during my conversation with Dr. McKenna, one of Carl’s team of neurosurgeons. The following is what I was told

 Carl is not having surgery next week.
 They believe that Carl could also have a growth hormone releasing hormone (aka GHRH), which is made in the hypothalamus.
 They will repeat imaging on his head in the next three months.
 Carl is in the early stages of Acromegaly.
 The doctors want to nail [it] down before returning to the option of surgery.
 Carl’s headaches could be independent of his tumor/condition.
 The tumor that is by the pituitary may possibly not be a pituitary tumor, though all of Carl’s tests say otherwise. What they see in the scans could be a mucus seal, which can apparently sometimes dissolve.
 They do not believe Carl’s physical symptoms (joint aches, back aches, etc.) will improve with treatment.
 They may be able to start him on specific medicines to help his headaches.
 They could re-explore surgery or attempt gamma knife radiation. There are some concerns with gamma knife radiation: 1. it may not work 2. there could be potential damage to local tissues 3. there could be damage to the optical nerves – though this likely would not happen since the tumor appears to be far enough away from Carl’s optical nerves. Dr. McKenna believes that if they do decide to go back in and try gamma knife radiation, he might just try to operate again as gamma knife radiation is often a last resort.

COLD

Carl is doing all right. He's developing a cold, which is a little concerning. He's been congested and is still experiencing drainage, which I'm not sure is good. The other day, he noticed bright red blood coming out. Carl blew it off. Hopefully, it is nothing big.

I'll probably call the doctor to find out.

INFORMATION ABOUT CARL'S SURGERY

Carl's surgery, still set for November 4, 2009, will be similar to the first operation. The surgeons will again go through Carl's nose. They feel the tumor is located:
*very close or on the carotid artery
*behind the pituitary gland
*on the backside a small bone that sits in the pituitary gland, known as the hypophyseal fossa

A hypophyseal fossa is located in a depression in the body of the sphenoid bone. Located anteriorly to the hypophyseal fossa is the tuberculum sellae. The body of sphenoid bone contains the sella turcica, which houses the pituitary gland. The turberculum sellae is in the sphenoid bone.

So, around the pituitary gland is the sella turcica in the sphenoid bone.

The reason for the time lapse in Carl's surgery is because the surgeons are waiting on two tools to come in that they need for the surgery. The surgeon will chisel away at the bone behind Carl's pituitary gland by using an ultrasonic vibrating tool to "vibrate" parts of the bone away so they can get to the tumor. The other tool can go around corners, like an extension piece.

The surgery is taking place at the IU Medical Center.

http://upload.wikimedia.org/wikipedia/commons/6/66/Illu_cranial_bones2.jpg
http://upload.wikimedia.org/wikipedia/commons/0/03/Gray145.png
http://upload.wikimedia.org/wikipedia/commons/6/62/Gray192.png
http://gardenof-eden.com/arc_of2.jpg

THERE IS HOPE: Raise Brain Tumor Awareness

Visit http://apps.facebook.com/causes/365760 for more information!

CARL'S SECOND OPERATION

Carl is scheduled for his second surgery on November 4, 2009 at 9:00 am. The surgery will be performed at the Indiana University Hospital, which is just next to the Richard L. Roudebush VA Medical Center.

We do not yet know what type of surgery it is, whether it is through the nose again, the side, top or back of his head.

We will keep you updated. Please continue to keep Carl in your thoughts and prayers.

Thursday Neurosurgery Appointment...

...didn't happen. They kept telling him Thursday. The appointment is actually Friday morning. I'm going to call later and see if anyone has any information on the date of his surgery.

Carl's been feeling all right. His temperature is a little low...96.7 last time he checked. He is still getting tired easily. But, he is stable and feeling okay.

Surgery Update

We got a call today. Carl IS going to have surgery. We don't have a date yet and should find out by tomorrow or Thursday. He will have a Steltz Navigation where they will take an MRI of his head the day before. Then, they will upload it or put the MRI into the navigation system. From there, they will be able to "map" their way through his head. As far as what TYPE of surgery it is, we do not know that yet, either.

Monday's Blood Draw

Carl had his blood draw yesterday. During the blood draw, they tested his blood oxygen levels, which was new. They've never done that before so we are not sure why.

Carl has an appointment with his Neurosurgeon this Thursday at 8:00 am.

He is not allowed to lift over ten pounds, blow his nose, suck through a straw or sneeze for the rest of this month. Doing so could damage a membrane. We are watching his body temperature, too, for potential meningitis. So far, he is feeling well.

Carl had blood tests this morning. They were regular blood tests to check his levels. We are still waiting to hear back from the surgeon.

Be thankful to God - I know He has something good in this.

Carl's Medical Update Blog

Thanks for looking. This is where we will send constant updates regarding Carl's progression, tests and upcoming second operation. You can always contact me with any additional questions.

Please continue to pray. We are thankful for God's grace.

Andi