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AVM Survivors Network

Skippys story

#1

Hi, I’m Skippy and this is My AVM story :
Had been suffering from intense migraines since the summer months of my 12th year, there were other maladies that were related for sure, but the migraines were a great symbol of my struggle with the AVM also. I had a doctor from about 14 years of age that tried to provide a diagnosis for the migraines, 'til about 29 years of age. The best they had for diagnosis back then was Cat-scan. So for the next 13 years, the doctor kept trying to get a Cat-scan, without any success. The insurance companies would not okay the test for a headache. So the delima continued.
Then Friday just happened to be Christmas of '92, and the onset of a monster migraine, the worst 1 yet. I had the day off from work, had to work Saturday, then off for Sunday. I had just turned 27, I was married to a very young wife (18), and less than a year and a half old daughter. So I had gotten used to hiding my condition, which meant I could not opt out of anything. After all, who ever heard of a migraine killing someone. The migraine continued to get worse, so finally, on Sunday morning, I took 3 Tylenol extra strength at 10:00 am. Then 2 hours later I took 3 Moterin. So, every 2 hours I was taking one or the other in hopes of RELIEF from the PAIN on the left side of my skull. The wife had to work that Sunday evening, and I was with our daughter. Which meant the usual, entertaining, feeding, changing diapers, and putting to bed. That brings us up to the golden half hour. At 9 o’clock I took 1 or the other pain reliever, then put my daughter to bed for the night and was sitting back on the couch by 9:20 pm. Within 10 minutes, I was entering a completely new way of life that I was not ready for, never ready for.
On Sunday December 27th, 1992, at approximately 9:30 pm, I felt a soothing coolness start on the left side of my skull and very quickly spread to my entire skull, neck, and upper shoulders regions. Coolness and the complete LACK of pain and/or discomfort was amazing, relieving. But when I tried to raise the glass of water in my right hand so I could get a drink, and when nothing happened, I became aware that there was an issue, but with what? I decided I would stand, basically to reassure myself that everything was alright. It wasn’t. I stood in place for a couple of minutes, all the while realizing that I couldn’t feel the floor beneath my right foot, I couldn’t feel my right leg at all. Then I fell to my left , into and through the Christmas tree (completely destroyed). I could not deny that I was in distress, and getting worse by the second. So I got myself to a sitting on the floor with my back against the front of the couch with the phone within arms reach. (This happened pre cell phone days) I picked up the receiver of our Princess phone and was looking at the buttons & numbers, but couldn’t figure out what this thing was that I was holding in my hand. Also at the same time, I was seeing a definite set of numbers in the room, I couldn’t tell you if I saw them in my head or in the room. They were just THERE. So I punched the numbers I saw into the phone, and someone answered, they heard a Bear trying to order a pizza. HaHa! He then hands the phone to my wife, she puts it up to her ear, heard 2 seconds of me sounding like a Bear. The next thing I hear, is their receiver bouncing on their floor, 3 times. She was there in a hurry, with a curious look on her face, then I tried to talk. She called 911 then handed me the phone, while she went to get our daughter ready to travel.
At the 1st hospital, the language barrier was immense, and they had no way of knowing anything about my situation. My “family” doctor was there within a half hour, and the medical side of the E.R. kicked into gear. They knew within 2 hours, I would need more aide than they would be able to handle. So while they were preparing me for a transfer, I realized I could actually talk, asked for my family doctor, told him of the past three days, right up to me asking for him. And with the missing information from me, coupled with their knowledge, or lack of, they were still at a loss for a complete diagnosis. After that came the family reunion. Then about 2:30 am I was told of the mass in my brain which caused the bleed and right sided paralysis. Also, the mass was located in the fine motor skills & the speech sections of my brain. But, wait, there’s more. They were unable to tell if the brainstem was infiltrated or not. And now, even more. Due to the location of the bleed and the amount & locations of released blood, some brain damage was probable. All this has taken place in about 6 1/2 hours.
The one thing they told me, was, that they had never had anyone stay awake for the whole event. Before, during, and after. And that I was able to tell them about the bleed due to the drugs they pumped into me, was helpful at the time.
Then, around 6:30 am they sent me off to the learning hospital in Kansas, with a university attached to it. And, upon my arrival, straight into CICU, and for the next 3 days, a medically induced coma. Due to the loose blood in, on, and around the brain. It was at this learning hospital that they learned the extent of my “case”, which was as follows :
Complete paralysis on the right side from head to toe
A brain mass (conical in shape), 4.5 cm outer to .5 cm inner at the brainstem. 4 aneurysms located inside the mass, and 1 more aneurysm ready to break loose and go straight to the heart. And the bleed had caused damage of its own, but left me at pre-newborn status, but improving from the beginning. What was surprising about the whole thing, the Doctors didn’t know how to classify my “case”, or how to treat my “case”. They had begun “shopping” my “case” on my 2nd day at the learning hospital. Their “shopping” area was east of the Mississippi.
So, from December 28, 1992 until mid-February was spent in the learning hospital, then from mid-February to first of April waiting for a response on Doctors search. A learning hospital in the state of Virginia had responded with a suggestion of Gamma Knife, definite hope. The doctors were unable to shrink the mass down to less than 3.5 cm., were able to shrink it down to 3.7 cm. Which meant that an operation was inevitable. The doctors from Virginia also filled me in on the true risks of my “case”.
As well as a brain bleed - with all of its complications and damages. And the AVM was conical from 3.7 cm on the surface of the brain to the surface of the brainstem. There were also 6-9 bleeder that were “glued” off. Finally to the last, overall, biggest hurdle, the aneurysms. Four aneurysms were located in the mass of the AVM, and 1 more aneurysm which was ready to break loose on the way to the heart. The doctors were aware that my chances of making it to the operation time was not in my favor. Now that I had survived a brain bleed and all its challenges, and I had gone through a “procedure” to reduce the size of the AVM. So, I naturally thought it would be straight into the operating room, but, it wasn’t. Why? They thought I should go home and think about it. REALLY! So, 1 month later I was on the table about to go under the knife & skill of the operating crew. 8 1/2 hours later they were able to get and remove all 5 aneurysms and 95% of the AVM. They wouldn’t know for a few weeks, but they reduced the amount of right sided paralysis from 100% down to around 80%. I spent about 2 weeks in the learning hospital in Virginia. Mainly immediate healing from the brain surgery. One of my parents came to Virginia to bring me back to Kansas City area. And from there is another story for another time.
Almost 6 months of days, completely LIFE altering events, was full of roller-coaster ups and downs. 1 brain bleed, 1 medical procedure, 1 brain surgery, 2 visits to pre-newborn land. If I knew how this was going end up ahead of time, I would not miss a moment of it.
If anyone wants to know more about My Story, just ask me.

#2

Wow, you have been through an incredible lot! How fortunate you had parents willing to help. Welcome to the survivors club :slight_smile:

#3

Skippy, you’ve really been through the wringer, haven’t you? One of the things I love about our communities is that people can tell their stories and get genuine empathy and understanding without pity. We get it, even if we haven’t experienced everything that you have.
Thanks for telling your story and stay strong, Skippy.
Seenie from Moderator Support.

#4

Wow Skippy, thanks so much for sharing! I’m always interested in what people experience when they had their bleed (I have a few very strong memories from the beginning, but was in a coma for most of mine) Your strength and story is an inspiration. Kia Kaha as we say here in NZ :slight_smile:

#5

Hello. My name is Aly. I am scheduled for emobolization on 8/30/16 and craintomy on 8/31/16 at St Luke’s hospital on the plaza in kansas city. I originally went to Kansas University hospital and was so dissatisfied with the coordination of care I ended admitting myself out (agianist medical advice), so I didn’t get a chance to do the angiogram at Kansas University (KU).
I’m born and raised in Kansas City. I read story and would like to know your thoughts and experiences at KU? I keep getting mixed messages that they are great and then not so great. But one thing clear was none of them had an avm.
I’m a nervous wreck trying to choose the best hospital in my area making sure I get a great surgeon. I had confidence with my surgeon at St Luke’s until a friend of mine is recently trying to convince me to go back to KU agian to get another opinion, 1 day before my surgery!
I get headaches and a part of me is ready to get this over with and the other part is being scared.
I am so confused and praying that I’m making the right decision with St Luke’s hospital?! On top of it all the AVM created an aneurysms pocket next to it which radiation is now high risk for ruptures!

#6

Precious/Aly, posting to get Skippy’s opinion on Kansas City hospitals is a good idea, but there’s a chance a lot of members won’t see your questions. You should probably post a new topic to get more responses.

Just go back one page in your browser, and you should see “+New Topic” near the top of the page. Click on it, and give the topic a title that will attract the attention of folks from Kansas, and then copy and paste your post into that topic. I’m sure you will hear from some of your fellow members.

Seenie

#7

Hello Aly. Sounds to me that young already had a second opinion. I would say - stay the course.