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University of West Georgia Disclaimer
23 October 2007
Praise God for his blessings and getting me through this all the prays from friends and family carried me through this and I have come out on top.
I don't know where to start there is so much maybe first I will just run down the issues I was having headaches, headaches, headaches. If I did not have a headache I had this kind of dull foggy bruised feeling to my head. I always had neck pain, jaw pain, pain in my right ear, shoulder pain, numbness and tingling in my neck, and every night tingling in my feet, blurry vision in one eye,dizziness, my sleep was awful these things just continue to pop up, go away and get worse as time went on. I went to all different doctors over the years to try to get rid of all these different things. Somethings worked for awhile but no one could ever find out what was up or fix anything for good.
Now on to how we found my AVM. One day I had enough I called the chiropractor and said I have to get into see you my neck is numb and tingly and I can't take it anymore. He saw me right away and started thinking I might have MS. He sent me for a MRI. During the MRI the tech. comes in and says do you have neck pain on your right side I said yes and she walks out. I knew something was up at that point. The AVM was seen on the films and I was sent to my first neurologist scared to death because who the heck knows what an AVM is. He was very cool about everything and said yes I had an AVM but none of my issues went along with an AVM and I needed to go to another neurologist that dealt with AVMs. So off we went to the university of Illinois in Chicago. Scared to death my husband and I met with an awesome doctor. He confirmed the AVM and added Chiari Malformation which at this point he explained both things and said lets do another MRI with and without contrast and an angiogram and get a really good picture of what you have and what to do. The report came back no Chiari but the AVM was there on the right side of my brain about the size of a quarter.
What to do about an AVM The doctor told us it should be removed it would be an easy removal because of the location. First they would super glue the main vein going into the AVM then the next day they would go in and remove the AVM.
We needed to go home and decide when we would have this done because the best way to fix it was to remove it. This doctor put us at complete ease and we felt good about fixing my head. The only thing is there is so little known about AVMs that he could not say if removing it would help with all the issues I was having. He just knew removing it would keep me alive. talk about freaking out brain surgery did not sound like a fun thing to do.
Oct 2007: surgery is done, complete removal of my AVM and all my issues are gone. I am not saying things were easy but I will write again with other details The day they super glued that vein, my head felt awesome My head had never felt better There was no pain or dull ache in my head. It was a very strange feeling to have a clear head. As of today I am doing great It has been about six weeks since my surgery and all my issues are gone I am having some memory issues. But I have never slept better. I believe my body is making up for all those sleepless nights. I am going to write again to share more about the actual surgery and recovery but for now I must stop I pray this helps anyone who reads it.
There really is not a lot of info out there so anything that I can share I will.
Addendum: 28 October 2007
Well first I had half dozen blood tests done which was bad because I am awful with needles. Three days before my surgery The hospital realized that they did not have all the blood tests needed for surgery so off to the hospital again I went They did get me right in and out so that was nice. The first part of surgery was scheduled for early on a Monday The embolization which is done through an angiogram had to be done early so I could recover completely before Tuesdays surgery I was put completely under and sent to ICU I mostly slept the day away. I had pain relief from either Tyenol 3,morphine or vicodin I beleive I had all three at different times
I wanted to eat but the food was not good. I went for a cat scan in the middle of the night so they could have a picture to work off of during surgery on Tues. Early Tues. Morning I went to surgery I was put under right away. I was told about all of the tubes that I would have but they put them all in while I was under. I had one in my arm,one in my chest,one in my head and a breathing tube. I don't remember how long my husband said I was gone for surgery It took me a long time to come around and when I came around I wanted more pain relieve. They gave me anti seizure meds they do this for all brain surgery patients But I had a reaction to it I freaked out because the reaction I had effected my hearing I had no bass everything was in treble with a strange sound at the end of every sound. This reaction lasted for about a day.
My head didn't really hurt my neck and scalp hurt and the staples were very uncomfortable In ICU they come in a check on you every hour they ask you your name,where you are and the date.On to Wed. I had to have another angiogram to make sure everything was complete this was terrible because they taped my head down to the table mind you I had 44 staples in the back of my head this was very uncomfortable but I may it through. I was then transferred out of ICU but was still really out of it. I did have some horrible headaches when I would wake up these were the worse headaches I have ever had in my life to the point that I could not move until they passed Icepacks help a whole lot. These headaches would only happen when I woke up and moved to fast.
Let me touch on this blood thinner shot they give after this surgery These shots are given in your stomach and hurt worse then any other shot you will ever have if and when they give the shot make sure they give it really fast. When all the tubes are removed it does not hurt.
I could not drive for three weeks untill after the staples were taken out they said I could drive if I felt up too it but I didn't for about another week and half. When I came home I slept a lot bending down was not good I would get a head rush really bad I also would get these times where I was on the outside looking in and my hearing would freak out. I really started feeling like myself about the fifth week after surgery. My hair was falling out in bunches not only does surgery cause this but the anti seizure meds casue this and the angiogram dye causes this so there will be hair loss but mine has already started to come back I don't believe it will come back completely on the back of my head but at least I am alive.
I know this is long but I wanted to touch on things I didn't know before this all happened. One last thing during surgery they used a halo brace to hold my head still this was screwd to my head and did leave a scar on my forehead and in the back of my head. I have found out that most of the pain after surgery is muscle pain and will go away. My short term memory has not come back completely I don't remember things like I use to and sometimes I have to really think hard to recall facts. Ok I think I shared what I wanted to. Just after you have this done sleep and rest and you will come out great.
Update: 11 September 2009
Hello
I just had a praise to share it is two years today 9/11/09 since I had my AVM removed with complete success.
I just want to send encouragement to everyone out there. Embrace what you have been given all the good, bad and ugly and together we will make it through.
God BlessDiscussion, comments, or questions: Mari-lyn Lobinsky
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