Thaye and family
CyberKnife Patient Support Group

Thaye’s Arterio Venous Malformation
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Hi. I am a 30 yr old AVM survivor. Just as many of you, I was a happy energetic kid. I wasn’t aware there was anything wrong with me until December 1984. That is when my life changed forever.
I was 12 yrs old and just finishing up my 7th grade PE class (we’d been playing basketball). I was on my way to the locker room and out of nowhere I got the most excruciating headache of my life. My head felt like it was going to explode off of my shoulders. My vision blurred, my legs went numb, and down I went. The ambulance was called and I was taken to the ER where my parents were waiting. The doctors there ran a few tests and knew I had hemorrhaged but couldn’t figure out where. They told my parents that if I kept bleeding I would not live through the night. Well, needless to say the bleeding stopped on it’s own (THANK GOD!)

Over the next 2 weeks I underwent test after test after test. Finally it was discovered that I had an AVM of the cervical spine (C3-C8). My parents were informed that my AVM and it’s location were so rare that no one in the United States would touch me with a ten foot pole. They gave us the option of going to Canada or Sweden for treatment. We opted for Canada since it was about a million miles closer.


Once in Canada I met Dr. Alan Fox. And over the next 18 years he would save my life 5 times doing embolizations each time I had a bleed. I bled at age 12, 14, 15, 17, 25, 30. I have several deficits from all the ruptures – all over my body, but my right side is much worse than my left. I wear a brace on my right leg and have very limited use of my right hand – which is really hard because I was right handed most of my life. It’s tricky to try and teach yourself to be left handed.
The last bleed I had was in September, 2002. Dr. Fox reccomended that we do no more embolizations for fear of stroke, paralysis, or death. So many of the main "feeders" to the AVM had been blocked already. He said the risks far outweighed the benefits. I was crushed. I am 30 years old, I have a wonderful husband and a "miracle child" my 4 year old daughter Olivia. I call her my miracle because I was strongly advised not to have children because of my condition. Anyway – I was not willing to accept that nothing more could be done. I was not willing to sit back and let that "thing" control my destiny. I was aware that surgery was never an option for me because my AVM grows complexly in and around my spine. So, the search was on.


My husband spent hours on-line searching for any options that might be available to me. Like an answer to our prayers he learned of Stanford Medical Center and a team of doctors there who specialize in radiotactic surgery (radiation) with a machine called the Cyberknife. They specialize in the most difficult, high risk, asymptomatic AVMs. We immediately called them wondering if I might be a candidate for this treatment. They had us send out my latest tests (MRI, CT Scan, Angiogram, Spinal Tap) for their team to study. Two weeks later they called us back and wanted me to come out to California for treatments.


Upon arriving at Stanford I was taken under the wing of Dr. Steven Chang. I had a whole new battery of tests run for them to program into the "robot" (Cyberknife machine). I had 2 screws put into 2 vertebrae in my cervical spine. They would act as pinpoints for the machine to zoom in on and radiate the AVM. I had 3 treatments and after all was said and done Dr. Chang said he was 80% certain that in 3 yrs my AVM would be gone!!! I have to have an MRI done every 6 mo and sent out to them so they can monitor the changes in the AVM. If after 3 yrs it isn’t completely gone I will go back for another round of treatments to obliterate the rest. It is possible that I may even regain function in areas where I’ve lost it.


I feel so fortunate and so blessed. This is something that has haunted me my whole life. The pain, the disabilities, the uncertainties, the years of physical and occupational therapy, the fighting with the government for 2 years before they finally decided I was indeed eligible for Social Security.
However, after my experience at Stanford, I feel I have been given a new lease on life and that God has kept me around for a reason. My goal/dream now is to start a foundation for people like us with rare spine/brain conditions. I have been featured in my local newspaper twice and am trying really hard to get the word out nationally. Our conditions are so rare and treatment it seems is even rarer in a lot of situations. People need to be educated and funding needs to be put in the right places so we and generations after us won’t have to go through 6 bleeds, doctors who are uneducated about our conditions, misdiagnoses, procedures that are unnecessary, etc, etc, etc.

Update: Aug. 13, 2003

Well here’s the latest folks…
As many who’ve corresponded with me know, these past few weeks have been quite a trying time for me & my family.

I have been experiencing some rather unusual spells where my body gets tingly and hot, my vision blurrs and I see stars, and I have mild to moderate head/neck/back pain that won’t go away even after the spell is done. After speaking to many of you I was satisfied that these symptoms were of a serious enough nature that I should contact my Neurosurgeon. I did, and his thoughts were 1. trace bleeding from my AVM 2. Swelling of the spinal cord from Cyberknife stereotactic radiosurgery that I had done this past May 3. My AVM may be starting to shrink, and as it does, new blood flow is opened up into areas of my body where it previously wasn’t. Needless to say, he ordered an MRI which I had done yesterday (on my birthday – what a nice surprise ha-ha). I live in Michigan and my Neurosurgeon in California, so it may be a few days until the films are in his hands to evaluate. I’m very anxious to hear his diagnosis. The waiting is sooooooooo hard.

Also, as many of you might already know, my 51 year old Dad has been presenting signs/symptoms of some sort of blockage in the brain. Thankfully he has made a doctors appointment scheduled for next week. I hope and pray the right tests are done to determine the cause of his symptoms, as my family is now led to believe AVM’s/Aneurysms quite possibly do run in families.

Furthering our belief that AVM’s/Aneurysms run in our family, this past Friday a male relative age 52 on my Father’s side of the family dropped dead of a major stroke at the base of his brain. No warning signs, no symptoms, just dead.

I realize this isn’t a very uplifting update, but myself and my entire family are quite uneasy right now and need lots of support.

I will update again when I find out the results of my MRI and when we learn what is going on with my Dad. Please keep us in your thoughts and prayers, and as always, feel free to e-mail me anytime with anything you might want to talk about or share. I love you guys – thanks for always being there.

Update: Aug. 15, 2003

Hi Everyone. I got my MRI results back today (the interpretation of the local radiologists). First of all, I had thought my AVM was C3-C8. Apparently there is not a C-8, so actually my AVM is C3-T1. His findings were that there is a difference. In the region of C-5&6 there appears to be possible blood & ischemia. These were NOT the results I was hoping for. However, like I said, this was the interpretation of the local radiologists. I signed a medical release today & the films will be sent to Stanford for my Neurologist to view. His findings will be of more significance to me, as he knows my history & exactly what he’s looking for. Nevertheless, this was a kick in the butt for me. I’m trying very hard to stay optomistic, but todays news is making it a little harder.

I’ll update again when I hear from my Neurosurgeon & also when I find anything out about my Dad.

Thanks again for all of your support, kind words, prayers, and love.

Love you guys !!

Update: Aug. 19, 2003

Hi Everyone! I have some great news to share. I spoke with my neurosurgeon at Stanford earlier this evening, and his interpretations of my MRI films were so completely different than the radiologist here (Thank God!)

There is NO BLOOD, & NO SIGNS OF ISCHEMIA !! He said he sees some swelling – which is NORMAL. I knew that if I did experience the swelling that it could produce "bleed like" symptoms, however, after the radiologist here told me that my AVM had bled and I showed signs of spinal stroke, I naturally feared the worst about the symptoms I was having.

Anyway, I still feel crummy, but now I know why. Actually, it’s a good thing. This sounds strange, but is completely true: in order for the AVM to shrink and eventually obliterate, it first needs to enlarge to some extent (hence the swelling). I am told that this is how this process works. So I am now pretty excited – this means that the treatment is starting to work!!

My neurosurgeons advice to me was to contact my family doctor and find a medication that will help to ease the discomforts, and just ride it out the best I can. He didn’t feel that the swelling had reached a point as of yet where it warranted steroids – thank goodness. Hopefully it won’t reach that point. Furthermore, he just said to call him immediately if things got any worse. So, I guess I’ll feel crummy with a smile on my face for as long as it takes if it means that my treatments are working and I will eventually be RID of this damn thing.

Again, thank you soooooooo much for all of you support, kind words, love and prayers. You guys are great, and a HUGE source of comfort to me.

My Dad goes to the doctor tomorrow regarding the problems he’s been having. Please keep him in your prayers as well. I’ll update again when I have some news about him.

Update: Aug. 27, 2003

Hello Everyone. Well, here is the latest on my Father. He went to our family doctor last week for some disturbing symptoms he’s been presenting for quite a long time. Our doctor ordered a cerebral angiogram. Upon arriving for his angiogram, the doctor in charge of performing it told my Dad that he was very suspicious that there in fact was "something" there and that an angiogram is invasive and might disrupt "something". His advice was for my Dad to instead have an MRA. So, he had the MRA last week Friday, and we got the results back yesterday that everything looked normal. I should be overjoyed right? I don’t want to be borrowing trouble, but so many of you guys that I’ve spoken to have told me that you had MRI & MRA’s done that also came back "normal", but later, upon having an angiogram, learned that in fact things were NOT normal.

My Dad has an appointment this Friday for a stress test.

I want to be happy and optomistic, but with his symptoms, there has got to be something going on somewhere that isn’t right!!! You don’t hear your heartbeat in your ears constantly, or have your eyeball bulge out of the socket, or have a constant dull headache, or have no ambition for the things you used to enjoy, or have dizzy spells, or look as white as a sheet, or sweat profusely for no apparent reason, or put sleep as your #1 priority, or have the need to take a blood pressure med & 2 water pill meds if everything is "NORMAL"!!!!!

NOW WHAT!?!? That is what I am sitting here thinking. What if his stress test is "normal" too?

Am I just supposed to sit here and watch him ever so slowly deteriorate because everything looks "normal"?

Like I said, I don’t want to borrow trouble, but in my heart of hearts I believe things are NOT "normal". I don’t want to see my Dad drop dead at 51 because…………….oops, we don’t know how this could have happened, everything looked so "normal"……………….

HELP!!!!!!!!!!!!!!!!!!

As far as my recent problems, I have been perscribed a great pain reliever that helps immensely when I have those frightening "bleed like" spells due to the swelling in my AVM from my Cyberknife treatments. My Neurosurgeon even said I could return to physical and occupational therapy as long as I start out slow. He doesn’t think it will irritate anything. That’s good news for me. I’ve missed therapy, believe it or not. 🙂

Update: Sept. 9, 2003

I have some exciting news to share with everyone!!!

As anyone who has read my narrative, "I was a happy energetic kid", knows, my goals for the future are to bring awareness, education, funding, research, development, and treatment options for the fight against AVM/Aneurysm, and other rare brain & spine disorders.

Recently I was contacted by a local reporter, Susan Shaw, of WOODTV8, here in Michigan. She would like to do a story on my life with AVM, my goals for the future, and my Cyberknife treatments at Stanford. She previously interviewed my neurosurgeon from Stanford, Dr. Steven Chang, back in 2001.

I am SO excited about this opportunity! I knew if I kept working hard enough, I would eventually get my foot in the door somewhere to begin the crusade against these silent, debilitating, deadly killers! I hope this is just the beginning!!

The interview will be at the end of Sept or early Oct, and I don’t know as of yet when it will air. I will give you more details when I know.

I was just so excited that I had to share this with all of you!!

Thanks always for your prayers, love, and support!! This "family" is a HUGE reason why I feel so strongly about this cause.


Please feel free to contact me with questions/comments: rsytdy@altelco.net

"I’d love as much input as I can get."

 

To read articles regarding my CyberKnife treatment please click on the links below: