Why Is Antar's Spinal Fluid Leak Such A Big Deal?

I have been so stressed that it is affecting my communication. It frustrates me because when I am stressed I need people to understand me more than ever. Especially the people closest to me. But it isn't just one person so I know that I am the common factor. 

I decided it would be good to explain more about why this appointment for Antar is such a big deal. 

The first time we traveled for medical care was in February 2001. That was our first time in Minnesota. We didn't travel much so there was an element of fun. We had never seen so much snow. That was our introduction to the Mayo Clinic. They were like a miracle for Antar. We were there for a week and we went home. 

Antar has a rare condition that doesn't really have a name. Some say it is a variant of Klippel Trenaunay Weber syndrome but we have also been told that it doesn't meet the criteria because of how extensive his condition is. 

He has all of the normal veins and arteries and lymph vessels that everyone else has. And all over his body they have formed "malformations". The malformations are made of a combination of these vessels. Think of 3 strings of christmas lights tangled together, or 3 chains tied in a knot. But then change them to hoses. They are soft hoses. The theory is that he was born with all of these malformations of hoses(vessels). When he was born they were like deflated balloons. 

We all form little clots. It is normal. For most of us they just flow through and don't cause any damage. For Antar they can get stuck and cause the hoses to fill. Then the deflated vessels fill up with blood and lymphatic fluid. They get bigger and bigger. They take up space meant for other things. The other things are muscles, nerves, everything that we have in our bodies. That is painful for him.

The first inflated one was found when he was 2 years old. The doctor removed it from his neck. He was tired as a child and no one knew why. As a teenager he began playing sports and more malformations popped up on the outside of his body. He didn't know that it was even worse on the inside. He wore a knee brace. There was one on the bottom of his foot. He would push on it and try to flatten it. Compression does help. 

We moved to Minnesota so he could get care all the time at the Mayo Clinic in 2003. 

In 2004 we discovered that one of the malformations was connected to his colon and exchanging fluid there. It was causing him to have fevers. The doctors did a colonoscopy and were able to cauterize the opening. He was able to get better. 

This is not his complete medical history. I give you that example because it helps me explain what is happening now. He has been struggling with these spinal headaches since 2011. Sometimes they get really bad. The doctors think he has a spinal fluid leak but he doesn't meet the normal criteria so they get confused. He would improve after they would remove fluid for testing. That made no sense. He has been hospitalized twice. This past year nothing has made it better. We are living in Arizona. He goes to the Mayo Clinic. No doctor here knows what to do. They sent a referral to Minnesota and they said that they couldn't help. The leak is so bad that his brain is sagging into his spinal column. He needs relief.

I had a theory that the same thing was happening in his spinal column now that had been happening in his colon before. That the spinal fluid was leaking into a malformation. That is why they couldn't find the leak. 

One of his neurologists here said that there are 2 doctors in the country who can help him. One is in North Carolina and one is in California. Antar carefully gathered all of his relevant records and images and sent them to this doctor in California. The doctor called and spoke to us. 

He said that the spinal fluid was leaking into one of the malformations. We need to come to California for him to run tests and fix it. There is a procedure with a 70% success rate. There is a surgery with a 99% success rate. He will not know which will need to be done until we get there. We hope he doesn't need the surgery because with all of the malformations, Antar is very high risk for surgery. Especially that deep into his body. 

So, we agreed to make an appointment with no money to pay for travel expenses. They made the appointment too fast and we rescheduled so we could have more time to prepare. I started a gofundme. I made the hotel reservations. I talked to the insurance to make sure everything medical is covered. 

We leave in 5 days. 

I am terrified. 

And I have hope. 

We still don't have as much money as we need for food, gas, hotel, parking.... But we are going. We are going to just trust and surrender. 

I have a plan so that if he dies I know who to call so that I am not stranded in California by myself. 

But I really and truly hope that this procedure will be successful and he will be feeling much better before we leave California. I hope he will be well enough to walk the dogs again. I hope that he will be well enough to enjoy playing with his grandchildren again. I hope that he will be well enough to work on his car again. 

That is why we take crazy risks. Because the potential outcome is worth the risk.

Please let me know if you have any questions.