My daughter, Snowflake, was diagnosed on Wednesday, 3 days ago, with a Cerebral AVM. All we know, as of today, is that it is in the lower right portion of her brain, and is not bleeding. I am terrified, but truly counting my blessings. Snowflake is the only one of my five children with poor vision. She began crossing her left eye when she was three, come to think of it. She had 30/50 vision at the start of kindergarten, where she got the first pair of glasses, with the stronger lense in the left eye.
Her headaches first began about 6 months ago, always above the left eye. She had just broken her second pair of glasses, and headaches were attributed to that. Then, she got new glasses, with a stronger prescription, so headaches were attributed to that. (By me...I had only briefly, casually mentioned it to the optometrist) But about two weeks after getting the new glasses, and school being out, her headaches worsened. They became five or six in that month (May), and each time, they got longer in length beginning with 20 minutes, and at the climax, on Thursday June 5, after her softball game that had gone into two extra innings, her headache began immediately upon leaving the game at 9pm, and lasted until 12:30am. A three and a half hour headache!? I wanted so much to take her to the Emergency Room. I am a single mother of five, and Snowflake, is the second oldest. This requires a lot of coordinating.
It was nearing midnight when I talked to Snowflake about the Dr. She said she'd go, but "not right now, because I don't want to move." Soon after, the headache ended. The next day she was symptom free, and I called in the afternoon to schedule an appt. for her. The first available appt. however since I had waited all day to finally call (ugh) was Monday. But we were told to come to the ER if, in the meantime, she had any troubles. The weekend was fine, and we went to the 9:15am appt. on Monday, June 9, 2003. The Dr., Heather Brazzle, who is actually a P.A. but very, very "with it" ordered an MRI. All of Snowflake's motor tests were normal. She had all reflexes, all vision with her glasses, all balance, and so on. So, the MRI was only because the headaches were increasing in intensity and in frequency. And, I thank God that my Dr. didn't just chalk it up to something insignificant and call it a day.
Snowflake is one tough girl. Of my five children, she's the toughest for sure. Although the Dr. had assured us, "no needles, I promise" when we got to the MRI, it had been ordered "with contrast" which meant an IV of dye. It was a miracle that we got the MRI as soon as we did, actually. I live in a very small KS town, and the MRI is a mobile one. It is on a large truck and comes to the hospital here on a monthly basis, if I am not mistaken. Luckily, for us, that date, was the day after her appt. I am considering this a blessing from God. Also, the dye...if they hadn't used the dye, I don't believe they would have seen the blood vessels, and therefore, the cerebral AVM that we were told she had the following morning would have been overlooked. After the MRI, before diagnosis, she played a game of softball and got her first "out" by tagging someone on second base. She was SO proud! I was so proud! And less than 24 hours later she's told that softball isn't something she can do anymore. "One hit in the head..."
I couldn't be more afraid. I remind myself that this is congenital (since birth), and that I am only now finding out about it. I want to protect her and still allow her happiness. Just today, I thought, will this be our last fourth of July together? I can't have thoughts like that! For her sake. Our appt. to see the pediatric neurologist isn't until the 24th. Ugh! So, for ten more days, we sit in waiting, wondering, worried. Then, we will know more about her treatment options, the exact location of the AVM, and it's size, etc. Until then...pray for her, please!?
Update: 16 Jun 2003
I am so frustrated! I hate this WAITING until the 24th. The MRI that was done on the 10th was done at night, and by morning, the Dr. who read the results called my Dr. and left a message about the diagnosis. He said, "AVM", he said "lower right portion." That's ALL I knew. No size. I can't express how frustrating that is. Maybe this is going so slowly because she is not bleeding. I am grateful for that, but I HATE waiting.
The Dr. didn't tell me any medical-terminology location so that I could even TRY to research it on-line. So, this morning, Monday, I called the place where the results were read. And OF COURSE that Dr. who was on call that night, is now on vacation for the rest of the week!! AND, the films were sent back to MY hospital where the MRI was originally done, so since there isn't anyone there (small hosp.) to read those, they won't be able to tell me it's size either. UGH! (I might not be making any sense. I'm just venting.)
So, back to the waiting game. I called the neurologist's office to see if perhaps we could bump up the appt. They just said I could call everyday to see if there was a cancellation, but otherwise, there was nothing they could do. HOWEVER...the ONLY good news (if I can call it that) was that I re-called my Dr. who gave me the news...and asked about the medical terminology. What she told me was right, front. Today she said, the other Dr's exact words were, "Right, parieto-occipital region". So, OK! Something to research. I can't just sit here idle, you know?! It's crazy! At least now I can look up treatment options or similar cases or something.
But, again, until the 24th, I really won't know ANYTHING since these things are so different with everyone. No case will be exactly like hers. I guess that makes her kind of like a snowflake...no two are ever exactly alike. I'd rather think of her as a snowflake than keep looking at her with this pitty look and thinking, AVM, AVM, AVM. Her name is Snowflake! Not AVM Victim. Snowflake it is.
Update: 17 Jun 2003
We've cut out the middle man after a tough day yesterday. We are not going to wait until the 24th to see a neurologist, when he will just send us to a neurosurgeon anyhow. We scheduled an appt. at Kansas City's, Children's Mercy Hospital to have a consult. there with a neurosurgeon. He will read the MRI results himself and give us a more definitive answer.
Yesterday, I took the MRI results to a second radiologist, who said, nope...not an AV Malformation, although that's a possibility...but I would lean more toward a less serious condition, called Venous Angioma. We shall see. It is in the right, periatal-occipital region and we were happy to learn that the nidus is only 8mm x 9mm! That's the good news! The bad news is, I think this radiologist is a flake, but who I am to judge.
I think I'll leave the real diagnosis to the neuro-surgeon tomorrow. I hope it isn't as serious as we'd thought, but I don't want to go there with an everything is super mentality and then it can only go downhill from there. I've prepared myself for this to be an AVM, and that's what I'm telling myself until someone skilled tells me different. Pray for us tomorrow. It may be that I have REALLY great news tomorrow after all!!!
Update: 19 Jun 2003
Snowflake had an appt. yesterday at KC Children's Hospital (Children's Mercy) where she saw Dr. John Grant, a vascular brain surgeon who's "area of expertise" is AVM. He does not believe Snowflake has an AVM but is certain by the MRI that it is NOT a venous angioma. She has a cerebral angiogram scheduled for Monday, June 23 at 9am.
Dr. Grant believes Snowflake might have had a stroke or seizure in utero, and then, suffered a heat stroke on June 5, after her game went way longer than normal. He believes that small bleed was the cause of the headache that prompted us to get the MRI. She doesn't suffer from seizures, which surprised the Dr., he said, "considering the location" he was surprised she doesn't have seizures...but if it is NOT AVM, and she has no seizures, etc. they will simply schedule MRI's every six months for two years to monitor the area, which he said is actually 1 x 1 x 2.5cm. Much different than what the radiologist said, at 8 x 9mm. Anyway, he did say that if it is AVM, his recommendation is to have it removed through open surgery. He has done open surgery for AVM removal on children her age, younger, grandparents he said. Too many to count...again stressing this is his emphasis. I feel very comfortable with his abilities. I am going to research both him, and the angiogram proceedure now.
I look forward to updating everyone on Tuesday after we have a difinitive yes or no on the AVM. Also, after returning home from the hosp. yesterday, we got the sad news that Snowflake's step brother who was born to her father and step-mother a month ago died yesterday of Trisomy 13 (Patau's syndrome). It was difficult to call her father and update him on Snowflake's situation knowing they just lost their little Kobe. Pray for them, and for us. I'll talk to you Tuesday.
Oh, and the Dr. said perhaps Snowflake had sclerosis. (don't know how to spell that.) and I think he meant that that is what caused the malformation in utero. I feel like such an idiot in front of a brain surgeon! But, I did know what I was talking about when I asked about area of the brain, size, treatment options, etc. Hope to have good news soon!
Update: 24 Jun 2003
TODAY (June 23) was the day we'd waited for. Her angiogram went fine, and although she had a severe headache afterward, and was unable to eat for a while because she couldn't hold anything down, the actual procedure went fine. The radiologists' (cheif radiologist at Children's Mercy) preliminary findings are that Snowflake DOES NOT HAVE AVM!!!!!!!!!!!!!! He believes that he will need more time to go over these results with Dr. Grant, the neurosurgeon, before calling it "venous angioma" or something else. His exact words were that it is only a venous malformation and does not involve the artery, and will not require surgery. It may not require any treatment at all. Her headaches, may in fact, be migraines, atypical ones, but migraines, nonetheless.
One more appt. with the neurosurgeon is all we have left so that HE can tell us what his official of these tests are. He was in surgery all day, and couldn't come to see us. Brain surgeons. :)
Well, THANK YOU SOOOOO MUCH for your prayers. I believe, Snowflake's were answered and by her own faith, she will be fine! Thanks to you all! And, I will update to give you a "final word" on her situation, even though again....my little snowflake DOES NOT HAVE AVM!!!!!!!!!!!! I will continue to pray, as will our family, for those of you who are not in our situation...and who will be dealing with worse news. God Bless you all.
Update: 06 Jul 2003
Snowflake has NO malformation of ANY kind!!! The brain surgeon was surprised. There is no malformation of the arteries OR veins. Whatever it is that shows up on the MRI is "white matter", and is unrelated to any blood flow problems. I asked Dr. Grant what it is then, and he is stumped. I will get another opinion, but he said that Snowflake is a migraine sufferer, and will need to be treated for that...with children's Advil. Other than that, she is as normal as any other child!
I believe strongly in my Heavenly Father, and I know that this is a blessing that is unmistakably His work! To go from "AVM", possible brain surgery, to more likely a "venous angioma"...less significant, to possibly sclerosis, to just migraines and NO malformation WHATSOEVER!!! is unheard of. I am relieved, and overjoyed! I do know that if she gets the headaches that last for hours, I won't hesitate to have another MRI with contrast done, and have the Dr. compare the two and note any changes...better! or worse.
I thought you would all like to know that Snowflake is going to be JUST FINE! All of next week is the softball tournament, and Snowflake is the pitcher. She may have to play a triple header on Saturday. This heat is nearing 105 degrees lately. I feel terrible for these girls. We bring ice, frozen rags, visors, sun block, sunglasses, and bottles of water to every game! There will be NOOOO heat stroke or anything like that happening if I can help it. This was such a scary, scary thing, and it all started on the softball field. I know you guys understand. I am...Snowflake is...one of the luckiest children I have ever met. Thanks so much everyone!
I expect no further appts or changes, but I will certainly let you know should there be any! And by the way, this was a GREAT fourth of July, and I know I'll have countless more 4th of July's with ALL of my great children. I hate that I went through something that made me doubt the lifespan of my child. Is there any greater pain? And is there any greater joy in knowing that I will get to see that smile on her face everyday for as long as I am on this earth!? Nah. That's the best thing in the world!
Update: 05 Nov 2003
Due to some increasing migraines, I took Snowflake in to have a follow up MRI, and the results were "negative". I asked the Dr. to be more specific and was told that Snowflake's "area of concern or abnormality" is now classified as an asymptomatic angioma. Her migraines may or may not be related at all to the area that is this unidentified white/grey matter. Her angioma has NOT changed at all since June...it's no larger or smaller. So, this was great news!!
Snowflake is doing great! I just thought although we don't have an AVM that I would update the family, as so many people felt a connection to Snowflake and might have her in their thoughts still. I feel sometimes like I don't deserve to read the stories that still come through email as Snowflake's story turned out to be a false diagnosis. However, I felt the scares and value her so much, that I thought I would still update. I wish all the stories could turn out as ours had. Thanks so much to everyone.!
We continue to see the miracles that come through prayers!