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AVM Survivors Network

My life. My story. My journey. My words


#1

My life. My journey. My story. My words: A reflection on the last three years of my life

To think, it all started, so it seems, with a canoe trip. It’s summer (August?) 2012, and I’m on a canoe trip with some friends from a church group I was a part of. We are in Indiana and are canoeing on a river, having a “gay ol’ time”. I go to stand up, and I fall backwards, hitting my lower back on a rung in the canoe- yes, I can be fairly klutzy;). I didn’t think too much of it, except that it was extremely painful to move at one point. Fast forward a couple of months, and I start having difficulties turning my head to the left without the assistance from my own hand, or without supporting my head on something behind me. I can remember that it was a challenge to drive because of this- I’m extremely fortunate that I never got into an accident. Anyways, I feel, to say the least somewhat “freaked out”. HOWEVER, this is only the beginning. I go to a local doctor’s office, have x-rays ordered and get a steroid shot to see if that will relax my muscles and be “normal” again. Again, this is only the beginning. The x-rays do not show anything, but I do start seeing a chiropractor and a physical therapist to help correct the issue.
Onward and upward. The meds do not help- or if they did, it was too mild to make that big of a difference. Next plan of action is to see a neurologist in the Toledo area. His recommendation? To get an MRI of the brain to see if there is anything “big and bad” going on “upstairs” that would make my neck have the spasms it was having. The conclusion? No obvious reason. However, the results of the MRI indicated a congenital birth defect, a malformed blood vessel (arteriovenous malformation-aka, AVM) that was “not supposed to be there”. This was considered an “incidental finding” and was NOT directly related to the spasms. It was then recommended that I see a neurosurgeon/specialist at the Cleveland Clinic because of where the malformed blood vessel was located. The plan of action, because of the location of the AVM (in the brain stem), was to have Gamma Knife Radiation Surgery at the Cleveland Clinic on January 18th, 2013. To say that I was scared would have been an understatement- you want to radiate my brain? Are you crazy? Because there was really no other option, except to wonder regularly if it would bleed, I agreed to the treatment. I had the treatment done- it was not invasive, so the side effects were supposed to less debilitating, if you will. You could go to work the next day, according to the brochure. Anyways, since it was a treatment to the BRAIN, and the professionals did not, for some reason (wink wink), think that it would be good for swelling to take place, I was put on steroids for two weeks after the procedure. I say this with some sarcasm- I hope that you noticed. Anyway, I take the steroids- the first week I had about as much energy as my now 5 year old elder nephew. Maybe even my 2 year old nephew- who did not exist yet at the time of the procedure- but I digress. The second week of taking the steroids, you wean off of them. This was the beginning of the LOWEST low that I had ever had (hopefully ever) in my life. I ended up quitting my teaching job because I just could not handle the stress of worrying about my job AND worrying about my health- something had to give. Since I am of the firm belief you have NOTHING if you do not have your health, I decided to quit. I don’t know if that makes me “weak” or not, but I just could not handle both. Quite honestly, I was somewhat “burnt out” from teaching by this time, so I felt that it was a sign from the universe that I was meant to do something else with my life- just what that is exactly, is yet/still to be determined. As mentioned above, coming off the steroids was difficult. I don’t remember much of that time, but I do remember the stress that it brought my family. I remember going to church quite a bit, and praying a lot. I also remember being blessed with holy water regularly. I take each day at a time and know that I am lucky that they found this malformation, and that they could do something about it. I also figure that they found this AVM for a reason, and that the reason will come about in due time.
Now, going back to the Gamma Knife, the experts tell you that it takes 1 ½ to 3 years to know if the procedure worked. With Gamma Knife, the belief is that radiation will “fry” the malformed blood vessel and make it go away, never to be seen again. It is used to treat multiple conditions, including AVMs and brain tumors. The day of testing, the patient undergoes a brain MRI, a brain CT scan, and a CT angiogram. The results of these three tests are then used to plan out how/ where the radiation will be focused to “zap” the AVM. It is relatively painless, except for the placement of a “halo” on your head that will be connected to the gamma knife machine. This halo, or helmet, if you will, is attached to a patient’s head with four pins. It’s not the most comfortable thing to wear on your head, but I guess that it is better than having the traditional brain surgery, where they have to open you up. After the treatment is done, I go back yearly for “checkups” to see how the treatment is progressing.

Fast forward three years. It is now January 2016. It has been three years since the Gamma Knife. I spent the weekend before my three year checkup visiting a friend of mine in North Carolina. I feel nervous about the check up, but I thoroughly enjoy hanging out with my friend, her daughter, and her cousin. Now it is January 19th, 2016. I go to the Cleveland Clinic, and have my three year angiogram to see if the Gamma Knife was completely successful. I go in feeling “indifferent” about the whole thing and learn that the AVM is still there. What does this mean? It means, I found out a few days later, that I need to have the treatment again. The date of the second Gamma Knife procedure is eventually set for March 4th, 2016.
March 3, 2016- Yesterday (3/2/16) I met with the doctors who are going to be doing the procedure. They go over the positive outcomes of the procedure, along with potential side effects- It’s kind of like a drug commercial where they tell you that there is this “great” drug that will make you better, however, there are some side effects/ risks. Knowing that this is my best option at this time, I sign the consent.

Anyway, why am I writing this? Because this has been a life changing experience for me. I will NEVER, EVER, EVER be the same person that I was before this all started. I feel like this was a “game changer” for me. I am now a whole hell of a lot emotionally stronger than I ever was before. I feel fearful at times, but I know that this is all happening for a REASON. Tomorrow I go in for the second round of Gamma Knife (GK). I don’t know what the future holds for me at this point, but I know that it is just a part of my life’s journey. If you are reading this, and can spare a prayer or two, I would really appreciate it.


#2

Chester, thanks for sharing your story. I am awaiting my first time Gamma Knife treatment. I am also very scared and feel this has changed my life upside down. You are not alone and I really pray that this treatment will work for you this time. Good luck


#3

Chester, I’m rapidly approaching the three year mark for my gamma knife treatment, so you are not alone. AVMs are a character builder, that’s for sure. :slight_smile:

Any time I find myself wondering ‘why me’ or ‘what if’, I think of others not as fortunate. After all, we’re on the right side of daisies, right? :slight_smile:

I’ll keep you in my thoughts and prayers, and ask you to do the same. God bless!


#4


#5

Hi Tim and Honor- thank you for your responses.
Tim- Yes, we are definitely on the right side of daisies:) I wish you luck with your three year checkup and will keep you in my thoughts/ prayers.
Honor- I wish you luck with your first treatment and will keep you in my thoughts/ prayers. Like Tim said, these AVMs are definitely character builders.


#6

Hi Chester, was just thinking of you. Think it has been around a week since your treatment. Wondering how you are doing/feeling?


#7

Hello Chester: I really want to thank you for sharing something very personal in your journey in life. Bless you! I will keep you in my prayers. Life is full of unique wonderments. V


#8

Hi Vicki- thank you for your support and prayers:). Life is definitely full of unique wonderments! I will pray for you as well.


#9

Hi HonorH- thank you for thinking of me. I am doing well. I may be experiencing some residual effects of the steroids in the form of irritability, but overall I am doing quite well.


#10

What did your Doctor say about how long will it take to see the Gamma Knife outcome. Hope not (3) yrs. I 'm in the same boat waiting. I have (1) yr.& 9 months to wait. I hate the waiting time.