Wednesday, May 16, 2007


and Answers

I have been besieged by questions in the past 24 hours. Here are a few answers that I know, and even a few that I don't!

1. The surgery is set for the 4th of June at 7:30 in the morning.
There are a few pre-surgery tests that will need to be done at Tampa General, but I don't have times or dates for those yet.

Although I was still having a difficult time grasping the idea of celebrating on a Sunday and surgery on a Monday, Steven was warming up to the idea of surgery this coming Monday. A final decision was easy, however, as the necessary pre-surgery tests just couldn't be arranged.

So Monday, June 4th it is.

2. Several have asked why the doctors let the cyst get this large, and why we didn't pursue surgery last February. The answer is tangled in this crazy web of VHL.

The best I understand, and believe me when I tell you that it has taken me two years of sleepless nights and lots of discussion with doctors to accept this idea, these surgery decisions are based more on the VHL diagnosis than the presence of the tumors. Because Steven's tumors are caused by faulty genetics, he will be plagued by multiple tumors during the course of his life. That fact, when considered along with the size of the cyst, associated symptoms, and the ability of the brain to handle only a limited number of surgeries, is the major factor in deciding to go ahead with brain surgery.

Deciding on when to remove a hemangioblastoma in a VHL patient is a balance, and we are just learning this balancing act with Steven.

Be patient with my desire to cure him!

(And of course, I think back to the first visit with Dr v, when I calmly but persistently insisted that the brain stem tumor must be "zapped", and I cringe!)

3. I have no answers for why Steven is relatively symptom free. While dizziness is his best friend right now, Steven really has only stumbled three times that I know of.

4. I failed to ask specific questions about the surgery, much to the chagrin of Dale. I assume that things will be pretty much the same as last time, with the surgery lasting around 4 hours and Steven spending a day and night in the ICU, just for observation. I am also assuming that he will be in the hospital for about 4 days.

5. The neurological risks with this surgery are relatively small.


Relative, of course, is the key word, because the
neurological risks involved include bleeding into the brain tissue, a blot clot in the brain, or death.

Still, this is a low risk in the world of brain surgery.

And I have no idea what 5% means. I'm assuming it means that if 100 such surgeries were performed, the horrible results only happen 5 times.

There are just some questions that I'm still not willing to ask in front of my sweet boy.

6. Other risks involved include pneumonia, blood clots in the legs, and urinary tract infections. These issues happen with a bit more frequency. However, Steven's age and excellent health should prevent these problems.

7. Dr v mentioned another risk. He inspected the old scar and told Steven that he would "unzip the zipper." Dr. v then mentioned the risk of complications with healing because of using the same incision. These complications include a longer healing time, risk of infection at the incision, possibility of leakage of cerebral spinal fluid from improper healing, and resulting meningitis.

8. Steven, however, has such great faith in Dr. v, and I think that makes a world of difference. He has a peace and acceptance with this surgery.

A peace and acceptance that really is beyond his eighteen years.

9. Steven wants a tattoo.

A "badge of courage".

(A small one, of course!)


Renee said...

I was going to suggest Miami Ink. They are requesting people now for thier show. I would like to go with him! :-) I'll even get a tatto with him.

I'm glad to hear he is confident in the doctor. That makes things some what easier.

diary of a genetic defect said...

Speaking as one who has just had to be the family, my thoughts and prayers are with you all. If my old duffer of a dad can make a full recovery Steven looks like he'll be better than normal in no time.
So here you go again. Keep us posted.

tongue in cheek said...

I will pray for healing for Steven.

Faith hope and trust.

Heather said...

I am constantly praying for Steven and your family. I really admire his courage.

I think it would be awesome if he was on Miami Ink! You will definitely have to keep us updated on that!


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