Ben Goes To New York!

Sounds fun doesn't it? It even sounds like the title for a childrens book. Boy do we wish that this decision was that fun and easy. As I write, it is March 2006. I'm gather information in my head, and it's amazing to me that what happens next in Ben's life has only encompassed the last 7 months. It feels like its been much longer than that. Didn't this happen years ago? I'll start where I left off.

Ben came home from his February 2005 embolization just in time to celebrate his 3rd birthday. The side effects of his stroke improved rapidly. He spent about 5 months in physical therapy, and to this day only Mom, Dad, and the neurologist recognize the small amount of residual weakness. Our family was much relieved, and hopeful that the AVF lurking in Ben's brain would give up it's fight and simply fade away.

Let me explain a bit. An AVF is a bit of a miser, at least in Ben's case. It likes to collect new arteries to help it's growth. Sometimes when a doctor embolizes a significant amount of the blood flow to an AVF...it gives up. The lack of blood flow to the fistula (hole) it has created isn't worth it's time. I think of it like a bully. If there's no one to tease...they quit teasing. So, if there's no blood to feed the AVF...it quits trying. This would be our best case scenario with Ben. After his February 2005 embolization, we were told to return in one year for an angiogram. The angiogram would tell us if the AVF had given up, or if it remained. We were supposed to have a year of relief, but Ben had other ideas.

In August of 2005, Ben suffered a prolonged headache. As a result he lost some muscle coordination of his left leg for a couple of days. We were concerned, as were the doctors, that something was going wrong. Because he also has Sturge Weber Syndrome, it was hard to tell if this was a result of the AVF, Sturge Weber, or just residual complications from the stroke. By the end of the week, Ben was back at Minneapolis Children's hospital having an MRI. The MRI showed that the AVF had progressed and was once again open. After Ben's embolization, there was minimal blood flow to the AVF. The procedure had stopped 99% of the blood flow according to the doctors. And at this time, the AVF was made up of 2 abnormal arteries. This new MRI told us a different story. Just six months after embolization, the AVF had not only opened up, it had collected additional blood flow from 6 more arteries. The artery that was initially embolized remained closed and stable. These were brand new arteries that hadn't existed 6 months ago. At the time, we were not aware of this fact. If we had known, we would have been frantic.
Rockefeller Plaza the night before embolization
During our follow up with the neurosurgeon's office, the new vascularization of the AVF was not discussed with us. We were told that this was probably the brain's normal process of rerouting the blood flow after the procedure. We had yet to talk to the doctor himself. We spoke to the nurse practitioner about his results, and were told that the doctor would make his recommendation, if any, shortly. We asked if the MRI showed what happened in February. We wanted to know if any damage was done from the stroke. We were told it was completely normal, and we may never know what exactly happened. Looking back at this conversation is hard. I don't feel we were informed well. I almost felt as though we were either mislead....or that it is policy at this clinic to not discuss certain things until the doctor has had a chance to read the test results. That in itself was misleading, as we traveled to speak to the doctor and later found out he hadn't read the MRI films at all yet. I'll come to that in a bit.

We went home, appeased that things were as normal as they could be in Ben's brain.

Before the headache that started this new rollercoaster, we had been working with an ENT and a genetist to secure an insurance approved consult with two doctors in New York. Dr. Milton Waner and Dr. Alex Berenstein. Together with their collegues, they run a clinic that specializes in vascular anomalies. The purpose of our visit to them would be to address any issues with the birthmark on Ben's face. He has tissue and bone overgrowth in the area, and we were ready to find out what we could do about the malformation in his face. And really, just to get the correct diagnosis. The MRI's had suggested an additional malformation beneath his port wine stain. But this malformation was yet undiagnosed....if in fact it was an additional issue. We received insurance approval for this consult! We were excited to finally have the chance to get some answers.
Just Got Done With My New York Hamburger!
We had yet to hear anything from the neurosurgeon at home, so after almost 2 months we were under the assumption that everything was just fine with Ben's AVF. We felt we were safe, and proceeded to try and get the answers for his face. In October of 2005, we flew to New York for consult with these doctors. Our visit with Dr. Waner went well. We will be tracking his tissue and bone growth yearly. If it becomes problematic, we'll consider our options at that time. At Dr. Berenstein's office we consulted with both Dr. Berenstein and Dr. Molofsky, a neurologist.

Now, we have to step back a bit before I go on. Remember that we were in this office to discuss Ben's face, or so we thought. Dr. Berenstein walked into the room with several other people, hung Ben's films up, introduced himself and said hi to Ben....the usual. He then sat down and said, well...the AVF is open again. This is when we found out that the AVF was open and collecting the additional arteries that I mentioned earlier. Two months after his MRI, and no word from the doctor that was following the results. We were upset, and surprised. Dr .Berernstein was probably wondering why we weren't concerned about the AVF. We didn't know about it! Our entire trip had just taken on a whole new story. As we were flying home from that trip, my husband looked at me and asked "What if we hadn't gone? When would we have found out?"

Ironically, when we returned home from our consult in New York, there was a letter from the local doctor that had been following Ben's case. He had finally had a chance to look over Ben's MRI films and report, and recommended that Ben undergo an angiogram to assess what was going on. We had already set things in motion for treatment in New York though, and realized that this is what we should have done in the first place. Being spoken to directly and honestly with the consult in New York was
Ben's Home Away From Home in New York
St. Lukes Roosevelt Hospital
such a great relief for us. Additionally, treatment there would require Ben to only have to undergo anesthesia one time as compared to three times locally. Locally, Ben has to be scheduled for the MRI, the angiogram, and the embolization on different occasions. With Dr. Berenstein all three are done at one time.

Dr. Berenstein scheduled embolization for December 5th, 2005. We agreed, and went home to start the insurance process. This time Ben's embolization would be done with glue, rather than coils. In an AVF, the glue is the preferred method of embolization. We were not aware of this, and were angry at ourselves for letting Ben undergo the first embolization. It's possible that the coil embolization actually had a part in the regrowth of Ben AVF. Evidently it can be a common side effect of coil embolizations in an AVF. We will probably never know.

We were scared. The last time Ben had an embolization there were complications. We did not want to put Ben through this possibility again. We did know, however, that if there was a doctor that should be doing the procedure it was Dr. Berenstein and his collegues. Dr. Berenstein is a pioneer in the field of interventional radiology, and is one of the few doctors in the country that makes the treatment of AVM's his specialty. People travel from all over the world to be treated at his clinic....and now so would we.

It seemed we had barely returned home, and we were off again for embolization. We got to the hospital early in the morning on the day of treatment. Benjamin, sound asleep. Mom and Dad, quietly panicked. Before we knew it, it was time to bring Ben back and hand him over to the care of the doctors. It was Dad's turn to go with Ben for this part, and I was relieved. I honestly don't think I could have held it together. As it turned out, Daddy couldn't either. It should have been easier this time, but as it was, it turned out to be harder. We knew too much.

And then the waiting began. This embolization would be far more delicate than the last one. The coils used in the last embolization are blocking the easiest access to the AVF. The doctors would have to find a way around it through smaller arteries. Their hope was that it would take them about 3 hours. In the end, it ended up taking 6 1/2 hours. They were able to successfully block 2 arteries. The remaining arteries were too small for the catheter. Once again, walking into the room and finding Ben there waiting for us was all it took to make everything okay. Now we would just wait for him to wake up and really be okay. We didn't expect any neurological problems, but the chance is there as we knew well already. Ben did develop a chemical inbalance this time, he suffered from a low sodium level for a few days. This doubled our hospital stay, and caused a few tense moments for us, but beyond that things went very well. Ten days after embolization we all walked out of the hospital together. It was a beautiful thing!

While we were in New York, there were some people at home doing some fantastic things for Ben. As a direct result of their efforts, two local organizations donated $1000 each to Ben to help with his travel and medical expenses. Huge thanks to the Grandy Lions and the Braham Moose Lodge!! Several others have helped out generously with our expenses. We are very grateful for all that you've done!

Almost as soon as we returned home, we were planning the next embolization. Insurance, time off from work, pre op appointments, shopping for airfare, and everything else that goes with it was almost instantly in the works. Ben is next scheduled for embolization on June 1, 2006. Will it be easier this time? I'm not sure that this part is ever going to get easier, but at least we know that we're going to the right place to get it done.

Some friends of ours have planned a benefit for Ben to help with the expenses of his medical care. If you are local, and would like to join us for a night of fun, please do. Ben's "party" will be held on Saturday, April 22nd at Sidelines Sports Grill in Cambridge. Email me if you have any questions about this event.

Next - Parkes Weber Too?

Home
Ben's Story Page 1 - The Birthmark
Ben's Story Page 2 - Finding the right Doctors
Ben's Story Page 3 - Sturge Weber Syndrome
Ben's Story Page 4 - The AVF
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 AVM?
What is an AVF?
What is Parkes Weber?
Links
Email us
Our Family Blog
Ben and Daddy
Hanging Out and Eating Grapes
Aunt Tanya Came to New York With Me Too!!