Our trip to Little Rock went good. The weather was nice going up there and coming back.
Aurora had an MRI/MRA done early yesterday morning. They gave her anesthesia. She did pretty well. When she woke up she was complaining about having a really bad headache. (Pretty much a “hangover” from the laughing gas they gave her) But after the headache was gone she was fine.
The radiology report stated that the AVM was actually a hemangioma (here we go again!). The doctor examined Aurora and asked me a ton of questions about it. (How has it changed? Is it bigger than when she was younger?) He said that he thought that the radiologist misread the MRI and that it actually is an AVM based on the fact that is has changed size and color, the tissue on that side of her back is considerably larger than the other side, and the appearance of a blood vessel at the skin. The blood vessel showed up about a year or two ago.
The AVM is not in her spinal cord and that is the only one that was found. PRAISE GOD!!
The doctor wants us to come back for the Vascular Anomalies Clinic that they have (I think) once a month. He wants the Orthopedist and Radiologist to examine Aurora and then I will know more about treatment options. Right now, surgery is what was recommended with embolization treatments before hand to reduce blood loss during the surgery.
So, we’re going back to Little Rock. Not sure when yet or how many more times. I’ll let ya’ll know when I find out more.
One more step in the journey… What a relief to know it is not affecting her spinal cord. Gulp. I’m sure you need some time now to get your head around her having the embolization and surgery. Not fun for a child. How far is Little Rock from where you live? Were you happy with the care that she got at that hospital? I’m glad it went well.
How frustrating is it when you hear “hemangioma”??? It always makes me nervous. I was in the ER once (long story) with my lip split completely in half, blood all over me (and my cute shoes too!) and also shooting out of my face like a bad murder movie… Anyway… when I first arrived I asked if he was familiar with AVM’s and he said something about “oh ya, I’ve seen these types of hemangiomas.” At that point I was too scared to really do anything, but his misuse of the terms did nothing to ease my concerns. Luckily he did a great job patching me up and was able to stop the bleeding. My PCP later told me I was lucky that doc had been in the ER and that he did a great job while I “scared the bejeezus” out of the entire nursing staff! Just keeping them on their toes!
It should prove beneficial to go to that monthly Vascular Anomaly clinic. Who is the doctor that heads that up now? I think it used to be Waner before he went to New York. Regardless, make sure you go prepared, keep a journal of questions ready to ask, don’t be afraid to be pushy, and of course use this group to research and gather up all the info you can before you see them. It will make that first visit and consult with the clinic that much more beneficial.
Glad that it seems you guys are moving in the right direction!!!
Dr. Buckmiller is the director of the Vascular Anomaly team. Her bio says that she trained under Dr. Warner. The journal is a great idea Shalon. It kills me how I have a million questions and then when we see the doctor my mind goes blank and an hour later I remember all the questions I had.
Little Rock is about 4 hours from where we live. We live in West Monroe, LA. So, it’s not too bad. It’s not a trip I would like to make all the time though. Other than the few small towns, nothing but trees and cotton fields as far as the eye can see between here and there. (BORING!!)
The next trip I plan to go a day early so that we can go to the zoo and do some sight seeing.
Thanks for all the encouragement. I’ll keep ya’ll posted.
Just keeping them on their toes!