Wait and See
Tuesday January 15, 2008 | 7 comments
Today we met with my neurosurgeon, Dr. Duke Samson. Nathan took off work and drove us to the hospital because I am a big chicken when it comes to navigating city traffic. Not only did Nathan drive, but he also came in handy when I needed help hauling around my 55 radiology films.
The hospital is located downtown on what I would call a “hospital row” because there are three or four major hospitals located on the same strip of land. At least one of them is a county hospital. Until today I didn’t really know that a county hospital was different from any other hospital, but now I do. The thing that tipped me off was an abundance of people out front, smoking and hollering, in their hospital gowns.
We also came across a striking paradox—a McDonald’s, built into one of the hospitals, was filled with a multitude of various healthcare professionals, happily munching on big macs and sipping large sodas. That was definitely a sight to see.
But I digress. We arrived early and waited an hour before a nurse whisked us away into secret doctor’s chambers. Once there, we had the privilege of chatting with a neurosurgeon-in-training, Dr. Samson’s assistant. He asked me to look at his nose while simultaneously tracking the number of fingers he held up to either side of my field of vision. I am proud to say I did quite well. I think I am becoming quite an expert at these neurological evaluations. I am especially good at the knee-jerk action.
After this, we waited some more for Dr. Samson. He finally came in, wearing fleece and sneakers. He was older than I expected, and a little grandfatherly, which I really liked. A top expert in his field, he started by giving us a detailed explanation of AVM’s and then he laid out a treatment plan of sorts. And here is where it starts to get a bit complicated.
On the one hand, since AVM’s occur in about 4 people in a million, there isn’t a lot of research on this. What we know is this—the risk of having an AVM bleed is about 1-4%, but it does go up with age. The risks I would incur as a result of surgery to remove an AVM are about 20-25% at this point which basically means it is unjustifiable and unwise. In other words, if I had surgery (I’d need at least four), I would end up in a worse condition than I am in now (partial loss of visual field is a given).
On the other hand, an AVM is an AVM and has to be closely monitored because it can rupture and bleed. This means that while surgery would not be beneficial at this point in time, I have to see my doctor at least twice a year for follow up and have to have an emergency plan of action in case of a severe headache or neurological changes or seizures, or whatever.
I am not sure how I feel about all of this at the moment. To say this is not what I expected would be an understatement the size of our galaxy and then some. Neither alternative seems appealing. I am thankful I will not be having surgery because losing chunks of my visual field doesn’t seem like much fun. However, having to be closely monitored by physicians from now on seems a bit confining to my somewhat free-spirited ways.
The doctor ordered more tests, of course, this time to determine whether or not I have any aneurysms in/around the AVM. We have to meet with him in the near future to discuss this, so, in a sense, we are back to square one, just have to wait and see.
One thing stood out especially from our conversation with the doctor and it’s a picture I’d like to leave you with—an AVM is not just a bunch of malformed arteries and veins, it basically means that part of my brain never developed. It also means that I’ve been beating my husband in Scrabble all these years in a foreign language and with an underdeveloped brain. Imagine me at full capacity.
{ Speak Your Mind }
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I love your sense of humor Olga…it’s what keeps you and Nathan sane I am sure. We are praying for you and think of you often. I’m sure it’s a bit frustrating to have the wait and watch diagnosis. I like you would just want it fixed by golly! But, you are in His grace and I am so glad you have such a wonderful husband to support you. Blessings ot you today. May you feel peace and contentment in your present circumstances.
Thank you for the update…we are praying with you guys for peace and the right decision. I am sure we will get together soon and talk more as well. see you soon!
Hi,
I found your blog recently when doing a search for avms..Also in Dallas-was diagnosed with an avm and it bled soon after Thanksgiving-was in hospital for 20 plus days. Coincidentally I saw Dr. Samson after that. Am awaiting more tests and angiogram etc before I know my options. Feel free to write me if you need to talk. Take care and be strong.
SK: Thanks so much for getting in touch with me, I will definitely want to chat with you about your experience.
Hi, I too just found your blog through my google alerts on AVM’s. I am 42 and just had the craniotomy to remove my AVM on Oct. 23, 2007 in Los Angles at UCLA Westwood hospital.
I am doing very well now. I am feeling back to normal pretty much even though I am still on anti seizure medication at least until April.
The surgery went smoothly and I have not had any loss or complications.
If I can help at all I would love to. This whole experience has been seriously profound and I would love to tell you everything I learned.
Modern medicine is fantastic.
Olga-I’m sorry you’re back to square one again. That must be frustrating. I hope you have a good time with your parents and can put this out of your thoughts at least for a little bit.
lol I love the way you ended that Olga. It’s great to have a sense of humor at times like these. Remember that Jesus died so this would not be your burden and so that you can be healed. I will continue to pray for you.