Update: My Journey with an AVM

Back in early February, we had just had my final consultation with Dr. Krisht at St. Vincent. He wanted me to go in for an EEG to make sure I was not having any seizures. We waited several days, and when we still hadn’t heard anything, we called his office to find out if there was something we needed to do. We found out that the hold up was that since we were considered self-pay, all the doctors were not keen on taking me on as a patient. There was a certain doctor, Dr. Biton, who Dr. Krisht was wanting me to see. Once we told them that we would be willing to pay most or all of the cost up front, we finally got the ball rolling.

February 13th we got the call from Dr. Biton’s office saying that they had an opening for me the next day at 8 am. Stephen already had a doctors appointment scheduled for that day, so my Mom came with me and Ruth to the appointment. When we arrived and walked up to the front desk, the lady told me, “So, I forgot to mention this yesterday, but Dr. Biton’s normal procedure is to also do a 3 day EEG home study, and that is usually around $13,000.” Ummm, kind of an important thing to remember to tell someone, when they were also told that they were going to have to pay the full price up front…. We were a little bit shocked, especially since Dr. Krisht had not mentioned that at all. After we mentioned these things to the lady and asked if that had been requested by Dr. Krisht’s office, she called his office to confirm. We didn’t hear the entire conversation, but it sounded like they were going to do the 20 minute normal EEG today and just see what happened before going further. That made us able to breathe a little easier. 😉

If you’ve never had an EEG before, it takes twice as long to prep your head for all of the electrodes than it does to actually do the EEG. Soon I was hooked up and laying on the bed. Once the test started, I felt like I was doing a pretty good job of relaxing and trying to just be calm and maybe getting close to going to sleep. After the flashing light test and being told about 14 times to “open your eyes” and then “close your eyes”,  I sat up. The person administering the EEG test asked how I was feeling, and I replied that I was actually feeling kinda sleepy. He said, “Well, that’s surprising, because your brain never left the alpha waves the entire time. Your brain waves were so strong I even had to turn the sensitivity down.” Hahaha. Well, I guess that’s my Type A personality for you. The next step was to wait until Dr. Biton could read my EEG and come back for the follow up visit. But as we were checking out, they told us that he had a cancellation and could actually see me for the new patient visit and tell me the results of my EEG. So we sat back down in the waiting room to kill two birds with one stone. Once we were back meeting with Dr. Biton, he was able to tell me that my EEG was normal. But he still wanted to go ahead and do a 3 day EEG home study, because there was still a chance that I could be having seizures, but only at certain times during the day or at longer intervals than 20 minutes. So now I would be coming back on Feburary 28th to get hooked up. I was told that I would be unable to work my day job at my chiropractors office, and would need to stay home. I would also have a video camera on me, in case I did have a seizure. That way they could go back and see what I was doing, and if I had any visible effects from a seizure.

So I’m thinking that I’ll just have a relaxing weekend, spend some good time outside, and just take things easy. Not too hard, right?

When we arrived at Dr. Biton’s office on the 28th, the lady began prepping my scalp for glue. Then she proceeded to turn my weekend into a nightmare. She basically told me that I would be unable to do anything but sit on the couch with the exception of going to the bathroom and going to grab something to eat. No cooking (because the glue holding the electrodes in was flammable), no going outside, I had to sleep with a light on in case the infrared light on the camera went out, etc. I was told I could watch movies and read books.

After glueing around 24 electrodes to my head, they braided my hair into the wires and then gave me a bandana to wear for the next few days. I felt just a little gangster… Also, how fitting was it that the car we pulled up behind coming back home had this license plate??

In short, the next three days were NOT fun. But Monday morning finally came around and at 9 am on the dot, we started taking the electrodes off. Normally, I would have had to go in to let them do it, but they were going to be short staffed that day, so they sent home the glue remover and glue remover shampoo home with us. It has never felt so good to wash my hair.

The top view. There are just as many of these on each side, plus some on my forehead.

We were scheduled to go back to hear the results of the EEG on March 13th. But before that, we had our second opinion visit with UAMS. Long story short, that visit did not go well. The doctor we talked to seemed to feel like we were trying to rush into taking care of the AVM, (which we weren’t) and then proceeded to act like it was inevitable that I would come out of the surgery paralyzed on my right side or unable to speak. (Both of these are legitimate concerns, but the way this doctor was talking, it was like a 90% chance, instead of the 5-10% that it actually is) He used the same example of “If it was my daughter” that Dr. Krisht did, except he said that he wouldn’t touch it with a 10 foot pole. His recommendation was to wait until something bad happened, and then to take care of it. He also mentioned that early in his career, he had an AVM surgery go wrong, and he would never forget it. He did give us a few things to think about, but we left the visit with an overall bad taste in our mouth. We did not like the idea of waiting until something major happened, and then having to go fix that damage. He also told me that if I was asking him, there was no way I would ever have a natural birth again, it would be a c-section all the way, and close monitoring the whole pregnancy. The UAMS doctor did mentioned that doing a functional MRI would be a good idea, because that would tell them where exactly my speech and motion was located in my brain, and if they had been relocated because of the AVM. Since I am left-handed, it’s possible that I have speech in both sides of the brain. Now we were ready to go back to meet with Dr. Krisht to ask him a few more questions, and go from there.

Before our follow up visit with Dr. Biton about my 3 day EEG, we met up with a childhood friend of my mom’s, because the lady’s husband had an AVM and used Dr. Krisht to remove it. Over the course of our visit, we learned that they thought the world of Dr. Krisht, and that there had been an instance where a different patient had gone to see him for a brain related issue and he recommended not doing anything with it. She then went to UAMS for a second opinion and they started treatment. The surgery went south and they called in Dr. Krisht to fix it. This showed us that he does know his limitations, so the fact that he feels confident that he can safely remove my AVM seems legitimate. Plus, if UAMS calls in Dr. Krisht to fix their problems, I think we will be in good hands.

Next up, our visit with Dr. Biton. He told us that there was no seizure activity at all, and furthermore, there was not even a sign of there being an AVM on my EEG. That means that my AVM doesn’t cause any alterations in brain activity, and this was actually surprising to him. He did tell us that he would strongly suggest taking care of this “ticking time bomb”, as he called it. He recommended having a second opinion, and doing a lot of research. We told him that we had already done most of that, and when we told him we were leaning towards using Dr. Krisht, he said we would be in good hands.

Now we felt a lot better about our decision to remove the AVM and use Dr. Krisht for the whole process. We did want to meet with Dr. Krisht again, one more time, to ask him a few questions that came up during our UAMS visit and some questions that Dr. Biton recommended that we ask. Stephen called Dr. Krisht’s office to make an appointment for me, and found out that the earliest I could get in would be April 24th. This would be a little over a month away. Slightly frustrating, but not much we could do about it.

As the COVID-19 virus started to spread and things here in the US began to shut down, we wondered if my appointment would be cancelled. The date kept getting closer without us getting a call, so we were cautiously optimistic. Then this Monday, April 20th, we received a call from his office saying that they had cancelled my appointment because they weren’t seeing anyone in the office right now. They would put me on the reschedule list, and once the virus was over, they would send me a letter with my new appointment date. So who knows when the virus will be “over”, and we don’t know how long they’ve been cancelling appointments, and how long the reschedule list is. We are just so thankful that my AVM wasn’t an emergency situation, and that we have plenty of time, as far as the doctors know. We are just praying that this will all be over soon, and that we can start treatment as soon as possible so that we can get this all behind us.

We have had so many people checking in on us, helping us out in various ways, and sending up lots of prayers. We are SO thankful for all of you, and it means a lot to us. Thank you so much!!


Liked this post? You may also enjoy:

The Scariest Day of My Life: Being Diagnosted with an AVM
Ruth’s Birth Story
The Love Letters


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