Our first stop? The opthamologist for a pressure test. People with portwine stains that involve their eyes have an increased risk for glaucoma. So we went to the opthamologist who performed an eye exam, but NOT a pressure test. I did not know this at the time as I had no experience with glaucoma. I made an appointment specifically for a pressure test, so I thought that I would get one. Wrong. In fact, I unknowingly left without a pressure test. I found out several weeks later that the test had not been done because the opthamologist didn't think it necessary in a child this young. How I found this out? I was visiting another doctor who looked over Ben's charts. He stated that Ben still needed a pressure test in addition to the eye exam we already had. I was actually thankful for this first frustrating experience, as it started to open my eyes to the frustration of treating Ben's condition.
After seeing 4 dermatologists/plastic surgeons, who each gave a different answer (very frustrating), we decided to begin laser treatments on Ben's birthmark immediately. At this time we were also told that an MRI to scan for Sturge Weber Syndrome was not needed, as Ben did not exhibit any signs of Sturge Weber nor did his birthmark involve his forehead. This relieved us, and we decided to forgo the procedure. We made our decision to start laser treatment immediately after communicating with other parents via the internet. Somehow, I stumbled on to a couple of websites with great resources in the treatment of portwine stains. These sites also have a superb suppport community of families, parents, and individuals who have "been there". The help, education, and support flowing through these communities is just incredible. If you are a parent or individual struggling with finding answers about a birthmark I highly recommend you check out these sites.
After 7 laser treatments, we decided to get a second opinion for Ben. Ben's care at the hospital where the laser treatments were performed was very good. The staff there is wonderful. However, we were starting to notice some things that concerned us, and where Ben was being treated is not a clinic that specializes in the treatment of vascular malformations. Ben's face was starting to grow faster on the side of his birthmark. We were concerned that there was yet another type of vascular malformation in Ben's face that was causing this growth. We wanted an MRI. This is where Ben's story reaches a plateau of frustration. The doctors did not disagree with my concerns, but they also did not listen. No one thought an MRI was a bad decision, but everyone wanted the other doctor to take care of it.
One doctor's exact words still upset me to this day. His advice went like this: "Could there be another malformation under his birthmark? Yes, but probably not. Would I do anything about it? No. If there were any abnormalities his initial MRI would have shown it." Now, at this point Ben had never had an MRI. The reason for the consult with this doctor was to see if we should be doing one. So, essentially a doctor that had been treating my son for over a year did not bother to read his records, and assumed that Ben had already had an MRI. This is the doctor who initially advised us against an MRI. And that, folks, is the last time we saw that doctor.
After repeated calls to the clinic that was treating Ben at the time, we received no answers to our questions. We felt that this was a sign that we needed to search for care with someone who had more knowledge of vascular malformations. What we didn't know was that this was going to be far more difficult than we thought.
I called numerous numbers of doctors and clinics in the state. I pleaded Ben's case to plastic surgeons, neurologists, geneticists, dermatologists, vascular surgeons, and ENT's. I got on the phone and talked fast, so that no one could interrupt me. I became my son's own telemarketer and salesperson. I had names of doctors on post-it notes and envelopes everywhere. I posted questions on boards and newslists. (The answers there were a tremendous help) As I was going through this process, I started to get nervous about Ben, and I wasn't even sure why. I had a strong conviction that Ben NEEDED this MRI, and he needed it soon. The neurologist said go to the geneticist, the geneticist said there's a 6 month wait, the vascular surgeons said go to the plastic surgeons, and the plastic surgeon's said go to the dermatologists. The dermatologists were happy to see Ben for laser treatments, but they were not the ones that would be ordering any MRI. With the help of several very helpful nurse practitioners who spent their time listening to me, and giving me advice over the phone, we started to see what we had been missing, and what we should be doing. We also realized a very real and frustrating part of this whole experience. There is no one single clinic, hospital, or doctor that treats vascular birthmarks as a whole anywhere near our home.
So now I had the names of doctors. I didn't know what to do with them. I didn't know if they were the right ones. I didn't know anything about them except what kind of medicine they practiced. One day I was visiting the Sturge Weber Foundation website. I was not registered with them, because we were told that Ben did not have SWS. For some reason I registered, and then asked my questions once again in an email to them. I look back now and thank God that I decided to send that registration on that day. He was definitely leading me in that decision. After I registered, I expected an email saying welcome. What I got was far more than I expected. I received a phone call from a representative of the Sturge Weber Foundation who was loaded with information for me. I received names of doctors in our area that came recommended by other patients being treated by them. Ironically, the names they gave me were already on the list of doctors we may or may not go to. I received confirmation that my want of an MRI for Ben was the right decision, and most importantly I was not alone anymore.
From their recommendation, I made an appointment with a new dermatologist. We have started laser treatment with him and are very pleased with not only what he has to say, but with the knowledge he has of Ben's particular kind of birthmark. After just one laser treatment we found out from the dermatologist that Ben's PWS is actually a high flow malformation. So essentially, Ben has possibly been treated incorrectly in the past. If you'd like to know more about the doctor we've chosen for Ben's treatments feel free to send us an email.
Soon after my phone call with the SWF, I called our family doctor to make an appointment. I was now "loaded for bear" with names of doctors and information. I was ready to get this done, and I was not leaving until it happened. While I was on hold at the clinic, I heard a recording that welcomed a new pediatrician to the clinic. I don't know what made me do this, but I hung up the phone and called her office. This turned out to be yet another call that would help lead us down the right path.
On the day of Ben's first appointment with a new pediatrician I walked into the office expecting to have to stomp my feet and throw a tantrum to get what I wanted. What I got was instant action (and it only took a few tears). By the time I left, I had the MRI that I had waited the last 6 months for, and a referral to a geneticist. I also had a new primary physician for Ben. I knew that we would be seeing her from now on within minutes of meeting her. Someone had actually listened to my input!! Better yet, someone was going to be another advocate for Ben!
Two weeks after our appointment we went to Minneapolis Children's Hospital for Ben's MRI. What the MRI showed is the reason I believe I felt so strongly about getting Ben's MRI done SOON. My nervousness about testing him immediately became apparent with the rest of the MRI results. Ben has an arteriovenous fistula (AVF) in the tentorium area of his brain. The MRI also gave us the diagnosis of Sturge Weber Syndrome. The disease that we were told Ben did or could not have! Finally it showed what they thought was an additional vascular malformation in his cheek. This was a lot for us to take in all at once. We are still searching for the correct diagnosis of the vascular malformation in Ben's face. It was something that just had to be put on the back burner while we absorbed and handled his other conditions. After fighting so hard to treat Ben's PWS, we are now embarking on information gathering and treatment for the AVF and Sturge Weber Syndrome.
This is where Ben's story goes on to the next chapter. We had been told repeatedly that Ben did not have SWS. The MRI told us differently. So we started a whole new journey with Ben.
Next - Ben has Sturge Weber Syndrome
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- Ben's Story Page 1 - The Birthmark
- Ben's Story Page 3 - Sturge Weber Syndrome
- Ben's Story Page 4 - The AVF
- Ben's Story Page 5 - Ben Goes To New York
- Ben's Story Page 6 - Parkes Weber?
- Ben's Birthmark Progression
- Ben's Laser Treatments
- What is Sturge Weber?
- What is a Port Wine Stain?
- What is an AVF?
- What is an AVM?
- What is Parkes Weber?
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