I went home and made Owen lunch and tried to find something I could eat without spilling it out of my mouth (nothing worked) and after suddenly tasting blood and realizing I had bit my cheek I gave up on trying to eat despite being hungry. (perhaps I have stumbled on a new and very painful dieting plan).
At noon I picked up Catherine from school and headed to her appointment with a pediatric opthamologist. Trent met us there. Owen was so excited to see his Daddy there it was really funny to watch.
The past week has been interesting as you try not to worry and try not to think about negative outcomes. I read everything I could find online about iris lesions the first day and then it was just waiting. Quickly you realize that you cannot spend all your time thinking and worrying and yet getting your brain to shut off is not always the easiest thing. So I did what I have always done when I need to shut my brain down. I played the piano. Nothing else (not even sleeping) can make me turn off my brain and completely focus on something else. I probably have played the piano for 20 hours this past week. Every old song I ever learned and at least 20 or 30 songs I had never played before. The harder the better because it literally filled my brain with tasks and crowded out the worry. I could play for an hour or two every night and then when I was exhausted (you don't realize how many back and arm muscles the piano requires until you play a lot) I would head to bed and at least for a while my brain was filled with classical music and not the "what if" game.
I took my chart that I found online and slowly we were able to check off the rows.
Is It Benign or Malignant?
| ||
These clinical characteristics differentiate benign from malignant anterior segment tumors.1
| ||
Features Associated with Lesions
| More Likely Benign | More Likely Malignant |
Elevation
| Flat or slightly elevated | Nodular |
Number
| More than one | Solitary |
| Laterality | Bilateral | Unilateral |
| Size | < 3mm | > 3mm |
| Growth | No | Yes |
| Vascularization | No | Yes |
| Ectropion uvea | No | Yes |
| Iris infiltration | No | Yes |
| Pupillary distortion | No | Yes |
| Cataract | No | Yes |
| Sentinel vessels | No | Yes |
| Glaucoma | No |
Yes
|
Here is what we do know. The cysts causing the lesions are growing inside the iris (not behind the iris and pushing up). This makes them rare and tricky to see. If they were behind the Iris we could have gotten a pretty good look at them today but with pigmentation on both sides you have to be able to see "inside" them to know if they are filled with clear liquid (meaning a benign cyst) or if they are solid (meaning a tumor) and the only way to figure that out is through a very powerful ultrasound.
The doctor informed us that he was only aware of 2 such ultrasound machines in the greater DFW area and warned us that there would likely be a wait of 1-2 months before we could be seen. He gave us the number to call and we were on our way.
As soon as I got home I started the phone calls. First, you talk to the main operator at the Texas Southwest medical center, then to the opthamology, then to the opthamology oncology dept, always having to explain what you need done. Finally, I think I have reached the right person. Yes, they do the ultrasounds, yes, that doctor is here. She asks what is the patients name and date of birth. I reply. She says, "so this is for a child?" I answer yes. She says, "We don't see pediatric cases." Ummmmmm -- but you are the only one around with the right technology. "Yes, well we don't do children." Ummmmmm, but we have been referred to the doctor. So I start trying to broker a deal. "How about if I send you her records to look at?" She replies, no.
"Can I leave a message for the doctor?" She replies, no.
"So, why is he listed online as a pediatric opthamology oncologist?" She says, well he will see pediatric cases at one of our extension offices 2 days a month. You can make an appointment with him by calling the children's hospital not here at his office.
"Ok, but is the ultrasound at the extension office?" No.
"Alright, so I can see him, and he will do just what I had done today and then refer me to get an ultrasound?" Yes.
"So he has to refer me to see him even though I have just done this type of appointment and can send you my medical records." Yes.
"Are you sure, I cannot leave a message for him? or email him? because this kind of seems ridiculous. I don't want to add in steps, I want to get an ultrasound." Yes, I understand but we don't see pediatric cases here.
This circular conversation continued for a while with her finally (and reluctantly) telling me that she will mention it to him on Monday and I can call her back on Tuesday and then maybe he will consider letting a pediatric case come there. I ask again if I can send her our medical records so that he can know what kind of case he is dealing with. She says no, she has it written on a sticky note. She won't even take my phone number."
I hang up and put that info in a pile and call our doctor. I explain their response and ask more specifically what type of ultrasound we are looking for so I can start searching for a new place that is more . . . responsive.
I can't seem to find one in Dallas, so I quit looking there and move on to Houston where I am more familiar with the hospitals anyway. First I call Texas Childrens.
"Hi, I am needing to make an appointment for my daughter to have an anterior segment ultrasound biomicroscopy to differentiate if the 2 iris lesions in her left eye are solid or cystic." I get transferred up the ranks and finally talk to someone who actually knows what I am talking about. They inform me that the only place they are aware of that has this machine is Baylor College of Medicine's Eye institute. I call them. Yes, they do this ultrasound. Yes, they see children. And if I am fax over all our medical records they will then call me back to make an appointment.
I call back our doctor's office, fill out a medical release, fax it to them, and the secretary there says that the medical records office person won't be in until Tuesday and then she'll do it.
I have now been on the phone for hours. I have done the best I can and now must wait.
Then, the phone rings. It is our doctor's office. The doctor today had heard about our experience and was distressed by it. He started making calls. He found another place with the ultrasound machine. And he went ahead and scheduled us an appointment there this Tuesday.
Wow. This is why it is so hard to get anything done-- because you need someone to actually listen to you. I am so glad my doctor went to bat for us (as I think he should have) but I am saddened that he had to. I think I will mail this blog post to the first doctor I tried. This is what I fear so strongly about socialized medicine -- layer upon layer of people who won't listen to you. Layer upon layer of paperwork and added referrals and unnecessary appointments. All to build up the machine. The layers don't add efficiency, they never have. They add additional opportunities for redundancy, additional opportunities for billing, and waste time, resources, and early treatment options. I am for simplicity. I think everyone should be required to have insurance (just like we are required to have car insurance). I think it should be bought and sold on the marketplace and not be tied to your employer (like car insurance). I'm all for deductibles because it makes you think before just going to an appointment. It makes you ask is this necessary? It makes you want to be informed because you will pay for each thing until you reach your deductible. I think the individual should be making the choices.
Sorry for the soapbox, I'll shut up . . . for now.
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