Diagnosed T-4 Spinal AVM
25 March 2000
Hi! My name is Kari Anderson. I am 29 and have a spinal avm. I believe I have types 2 and 4. I want to thank everyone for all of your narratives on this support page. It has been such a blessing to have found support here. I was diagnosed with the spinal avm in May of 98 and found this support page in November of 99. You are all an inspiration to me. I hope that by posting my story I can be of some support to you also. So here is my story. It actually began when I was a junior in high school. . .in 1988. I would not have thought that until just a year or so ago, but now with the information I have. . .I now know that this is where my story begins.
Spring 1988
Spring 1988It was a typical spring day outside, sun
shining and absolutely gorgeous. Our physical education class
decided to take a walk outside which was much better than being
cooped up in that school gym on such a nice day. We were at the end
of our walk, just about a block from the school and BAM it hit out
of nowhere! I thought I was being struck by lightning or something.
Was I dying, I wondered! The pain was a burning pain as if someone
had turned on a torch on the inside of my body. It shot upwards
thru my right side. I fell to the ground. As I fell I was screaming
out uncontrollably in pain. It was so bad that for a second or so I
felt as if I were outside of my body and I could hear myself
screaming. It was absolutely horrible! Then it was gone.
Talk about embarassing! Everyone was standing over me in shock. The school did not call an ambulance but called my parents. The pain was gone, yet I was visibly shaken and was having a difficult time catching my breath. My mother came right away and took me straight to the doctor. I saw a doctor I didn't particulary like, but he was the only one available. He checked me over and can you believe what he told me. . .he told me I had a bad case of gas and sent me home! I was completely freaked out! We asked the other doctors and they had no explanation for it either.
The next few years I lived in absolute fear that that same pain would reappear out of nowhere! To this day it amazes me that I continued to be involved in all the activities I was. It seems that the fear would have completely controlled me. . . It did take it's toll though. By the end of my senior year I began having anxiety attacks. Not knowing what they were, I began to think I was losing my mind. However, once I learned what was happening I was able to calm myself down to the point where they did not escalate. I went on to go to college, receive my bachelor's of social work degree in 1993,and begin my job as an in-home family counselor (which I still do to this day). As more years passed, I began to think the pain would never return.
February 1998
In February I was feeling as if I were going to pass
out all the time. I finally went to the doctor and was diagnosed
with ITP..low platelets in my blood. I was put on steroids and that
corrected the problem. I was off work for much of that month. They
almost hospitalized me,but then agreed to let me just stay with my
parents until I was back on track. Moving back in with parents for
three weeks and not being able to drive, drove me a little buggy!
My parents are wonderful, but it is sure hard staying with them
once you have been on your own. Well, that problem was corrected by
the end of Feb and I felt like I was home free again. . .yeah
right! It had all only just begun!
March 1998
It was a Friday evening and I had decided to stay
home. I was just sitting on the couch watching television and
noticed that the lower half of my left leg felt weird. The only way
I could describe it to anyone, was that it was half numb. I decided
to ignore it. Saturday morning I woke up and the half numb feeling
had climbed to my hip. I was beginning to become a little concerned
and called my parents about it. We decided to wait and see if
anything changed and check it out on Monday. Well, Saturday night I
woke up to a horrible burning pain in my right side which wrapped
around to my back. It was awful. . .even taking my breath away. Not
wanting to call an ambulance for fear of embarrasment, I called the
hospital doctor on call. By now the burning was still there, but is
was dying down. The doctor seemed put off that I had even called,
telling me that I was just having a bad muscle spasm and that I
would be fine.
Sunday morning I woke up to the half numb feeling all the way up to under my left breast on my left side. Monday my dad drove me through a snowstorm to the doctor. My doctor thought I had a pinched nerve and recommended that I see a chiropractor. So, I did, for the first time in my life. I was in even more pain after two weeks of that. The chiropractor then told me he couldn't help me...that he thought I may have M.S. Then it was back to my regular doctor.
April 1998
Dr. Van Gorp, my family doctor, sends me to a
neurologist in Ames, Iowa. I am so thankful for both of them! Dr.
Ajax, the neurologist thought I may also have M.S. Dr. Van Gorp
didn't seem to think so. Anyway, Dr. Ajax ordered an MRI and a
spinal tap. I never made it to the spinal tap..thank God! The AVM
was detected on the MRI and Dr. Ajax told me I either needed to go
to Iowa City or Mayo for a definite diagnosis! AVM was a foreign
word to me and my family!
May 1998
Off to Mayo I went. Another MRI and a wonderful (HA
HA) angiogram were done! I was diagnosed a T-4 spinal AVM. I was
told the worst thing that could happen to me was that I may become
paralyzed from just under my chest down. That was comforting! My
neurosurgeon there recommended that I not have surgery since I was
walking just fine and that I needed to have a yearly MRI. I was
sent home.
September 1998
Back to Mayo again to have a 6 month MRI just to make
sure nothing more was happening...and I was sent home again with
the same recommendations. For the next year and 3 months I was home
free!!!!!!!!!!!!!!!!! In fact, I even began to ignore that there
was even anything wrong with me. I had bought a house and was
helping with the remodeling projects from tearing off siding to
picking up old shingles from reroofing the roof. No big
deal!!!!!!!!
December 1999
Home free I guess I was not! It was our children's
Christmas program at church. I was helping with the program. The
adult choir had one piece to sing ... Silent Night. I was up in
front with them singing away and boom. . .that burning pain spurted
out in the right side of my chest. It took my breath away. I
quickly exited. Then I realized I had better get someone's
attention because I now knew enough to know I may be having a
bleed. I caught pastor's eye and he came off. I had been trying to
get my parent's attention but they were busy singing away and
hadn't seen me exit. I told pastor what I had as he was new to our
church. He called the ambulance. They were there almost immediately
and by then the pain had receded. I just kept thinking. . .Thank
you God I still have my legs!
I was taken to our local hospital where the nurse tried diagnosing me with a pulled nerve. Yeah, a pulled nerve. . .boy did I want to pull a nerve of hers! A new female doctor was there and was wonderful. She listened to me and did a neurological eval to make sure I still wasn't bleeding. She then ordered an MRI ASAP in Iowa City. Well, ASAP to Iowa City was February 1.
February 2000
I was fine after the pain left that night in December.
It just gave me more of a scare! I had decided to go to Iowa CIty
for a second opinion. That didn't do me much good either. I was
told I didn't need to be seen unless I couldn't walk or lost bowel
or bladder control. Oh what a nice thought to leave me with! He
didn't even do an MRI. Since Christmas my reflexes in my right leg
have been spastic to say the least! My right leg also locks up on
me when I am upset, excited, nervous,or it is really cold
outside.
March 2000
I met my guardian angel in person! I had found this
site and found Jennifer Lynn! She and I have been corresponding since
December and I cannot put into words how much it has meant to me. I
finally have someone who has what I have and understands. My
parents, family and friends have been the best, but nothing can
compare to having someone who knows exactly what this is like.
Thank you Jennifer! Also, thanks to all of you who have shared your
stories. They are such a source of support and inspiration! God
Bless all of you! I will keep you updated as I now have an
appointment with Jen's neurosurgeon April, 10. If you have read her
update you already know all of this, but I can't help but share!
Take care and God Bless!
Update 13 Apr 2000
Hi everyone! Just want to update you on my trip to Bloomington, Illinois to see Jennifer Lynn's neurosurgeon, Dr. Kattner. It was GREAT! I was welcomed, and finally felt as though someone is listening to me and willing to work with me on this thing! Jen was wonderful too, as my mother and I stayed with her.
The scoop is that I have finally found a doctor who actually seems to care and want to be proactive with this thing! He isn't pushing surgery, nor do I want surgery unless absolutely necessary! It is just that he is so helpful, and he is going to take my case to be reviewed by top doctors! What a relief....FINALLY! I also was told that I should be seen at least once every two months by a neurologist from back here to monitor my reflexes etc to detect any changes. I also will start some physical therapy to build up my weak leg! I am finally receiving some answers!!!!!!!!!!
I had an MRI and it was good news. No clots were detected, and an angiogram was not recommended at this time.I learned that my spinal AVM is a type two and shouldn't grow any bigger. It is an inch and a half long and takes up two thirds the width of my spinal cord. From what information Dr. Kattner has, I have only a 1 to 3% chance of a bleed per year. He did say it is difficult to tell exactly, as this is so rare.
The only thing that really upset me was the news when I asked whether or not I will be able to have children. I was told that if I get pregnant I would increase my risk of hemorrage to 50%. That really bothers me.......I want to have at least one child someday. I worry that I will never experience that miracle. Who knows what the future may hold though! I am keeping all of my options open! I can't complain........... I have a wonderful life...and I still have my legs!!!!!!!!!!
I will be heading back to Bloomington in August for another check up. Thank you once again, as all of you have been more than wonderful. Thanks to all of you who have written and lended me support! I am so BLESSED! Know that I am here too, if you ever need to talk! Until the next update....take care and God Bless!
Update August 2001
Update August 2001 Well, I know it has been quite awhile since I have updated this page. I do apologize to all who have attempted to email me at the old email address and have had their emails returned. I am doing fine health-wise and in every aspect of my life right now. I guess I began to get back into the mode of just living life and not thinking about my AVM. I continue work at my job doing family counseling and love every minute of it.
One big change in my life that is the most wonderful blessing....is Ted. The previous pic in my narrative was of me and my brother at his wedding. I had been in an on again off again relationship with a guy from my hometown for years which was not a good relationship. He couldn't commit to anything. I ended that relationship a year ago this month. The very next month I met Ted. He is a year older than I am (31) never married and has no kids. Amazingly, we have only lived about 15 miles apart for years. He is the most wonderful man I could ever ask for. Of course, I was scared about telling him about my AVM, especially since I wanted to be honest about it from the get go. I told him about my condition on the second date. He doesn't care. He loves me. He knows about all the possibilities about paralysis, etc. that could happen in the future. We want kids and I know that may not be a good idea with all of the risks involved. We have discussed other ways...adoption, surrogate mother etc that might work. I just know that I am so blessed!!!! He took me to Hawaii in March of 2001. I am loving life and living each moment as a treasured gift and blessing.
Life is great right now. I know that this could change any moment sending me into the fear and need for strength to deal with whatever may come my way. That is just it...no one ever knows...not even those who have never had any medical problems. Ted and I talk about this as I know intellectually that something may happen to him someday...an accident, some illness... Life is a gift and I am going to live it that way. Don't get me wrong...the anxiety creeps up and gets me sometimes. I even sometimes feel guilty because I am not having to struggle with some of what all of you are going thru. That day may come. I just thank God for each day that I have.
Thanks for all of your stories. I know this site was a Godsend for me and it is comforting to know we aren't alone in living with AVM's. My new email address is tedsgirl2000@hotmail.com if any of you wish to contact me. My thoughts and prayers continue to be with all of you!!!!!
Take care and God Bless!!
Update September 2001
This has been quite a month. First of all, Ted asked me to marry him on September 1. I am so happy. Such joy and happiness and then the whole world changed on Sept 11. My thoughts and prayers are for all of us. This crazy world....but good lives on!
I did get to see Jennifer Lynn a couple of weeks ago as she was in Iowa with her boyfriend. It was good catching up with her. The trip may have been too hard on her though, as upon returning home she had a bleed and ended up in the hospital for 3 days. Please say a prayer for her! She is home now and will be heading to Chicago Monday Oct 22, 2001 to see about a new technique to alleviate the constant pain she lives with daily. Jen, I do pray this works for you....and maybe it is something that will help others.
Guess that is all of the update I have for now. I attached a new pic, an engagement proof of me and Ted. Our wedding date is set for March 2, 2002.
GOD BLESS ONE AND ALL!!!
Update: 13 Jun 2002
Hello everyone....well we did it! Ted and I got married March 2, 2002!! Married life is WONDERFUL!!! I couldn't be happier! There was a snowstorm that day but it still turned out great! Other changes occurred around that time also....I had a job change a month before the wedding. Due to budget cuts in the Department of Human Services referrals to the agency I was working for became very slow. So, they cut all full time employees to part time. There was an ad for an associate position in a school system close by and I decided it was a wonderful opportunity to get into the school system. I started there and put some of my counseling skills to work also... helping out some children who had some difficulty with anger. I loved it and so I decided that I want my education degree so I can teach. I just started back to school last month and should be done within a year and a half. That is as long as my health holds up!
I cannot complain about anything. Ted and I want children yet we want some time together before we approach that part of our lives. I can't help but worry and be bothered wondering if I should take the risk of having them but I want at least one that is biologically ours. I feel selfish and sometimes feel guilty because I know that this is nothing as far as what many of you are dealing with. If any of you do have any advice about this I would be interested in hearing it. I was told by my doctor that I would have a 50% chance of a hemorrhage if I do get pregnant. At the time I wasn't serious with anyone so I didn't ask anymore questions. I don't know, but it bothers me.
Well, I think that is all I have for now. Please know that even though I cannot respond to all of the wonderful updates and new narratives that come thru...that you are all in my thoughts and prayers!!!!!!!!!!
God Bless!
Update: 04 Sep 2003
First of all I want to send out an overdue "THANK YOU" to all of you who responded to my question about pregnancy. Ted and I have decided that we are not going to pursue my getting pregnant due to the risks. We saw a doctor in December of 2002 who recommended against it. He also was very pushy about my having the embolization procedure done. Ted and I left that appt feeling like they wanted me for a guinea pig. I called Dr. Kattner and voiced my concern about this situation, as he had recommended I go there for an opinion. I actually didn't get to see who Kattner wanted me to see because that doctor had an emergency. Ted and I had already made our decision to not become pregnant so we didn't make another appt.
This summer we went back to Dr. Kattner for my yearly check. Everything is the same. Nothing has changed on my MRI. We also met with a new neuroradiologist there and were very impressed. He explained our options and the risks. He wasn't pushy, however, and acknowledged that the decision was ours. Ted and I really like him, and when and if I have to have embolization and cyber knife treatment...that is where we will go.
Life is good. I am still in school full time and will have my teaching degree in May of 2004. Ted and I will seriously pursue having a family at that time also through surrogacy and adoption options.
Hope this finds all of you blessed by God's peace. Our thoughts and prayers are with you always.
Update: 22 March 2006
Wow! How time flies! This update finds me doing very well. I still continue to thank God every day that I don't have any complications from my avm. Currently my condition remains the same. I have not had any treatment. Thankfully my avm doesn't grow.
My husband and I decided to not risk pregnancy and have been blessed with the most beautiful little girl through adoption. She is our joy!
I continue to teach, but being a mom is the BEST! I know that life could change any minute, but boy do I treasure the time I have.
My thoughts and prayers continue to be with all of you. God Bless!
Discussion, comments, or questions: Kari Anderson Ricke
© Copyright 2002 Kari Anderson
Ricke
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