What I’ve Been Up To …
No, I haven’t been hiding, I wish the answer were as simple as that!
I have been wanting to update everyone, but didn’t know how in depth I wanted to go so here it is…
Back a few months ago I had sinus surgery and they removed BONE that was blocking one sinus cavity and partially blocking another. We had hoped that the surgery would rid me of the near constant headaches that had plagued me for as long as I can remember and in one way it did, I could definitely tell a difference, but I still had headaches, not so much sinus headaches, but in the back right side of my head, where a previous MRI had revealed a supposed venous angioma (tangle of blood vessels and lymph nodes, supposedly harmless). Everyone kept saying, there is NO WAY you can feel that, and I said well I feel SOMETHING. Then out of nowhere the headaches got worse and I started having partial focal seizures, so they sent me to the Neurologist. All this while going to school online and helping coach my daughters Basketball team I might add lol. He sent me to get an EEG and another MRI just to check on the angioma make sure it hadn’t grown or anything.
Initially the GP got the reports and it showed nothing had changed and the EEG was normal. I hate this hospital and don’t trust them so on a hunch I took my MRI (not just the reports the actual MRI) to my Neuro visit. After reading the reports he was just going to up my antiseizure medication and follow up with me until we found the right dose but I asked that he review my MRI and he took it and left the room. He was gone about ten minutes and I basically gathered my things and planned my route home, I didn’t really think he would find anything different by this point, it was just for my peace of mind. I was quite floored when he came back in and said ‘Thats not a Venous Angioma, thats an AVM, and I need to refer you to a Neurosurgeon as soon as possible’ I could almost feel the floor drop out from under me. Neurosurgeon??? My Dad died of a Brain Anyerism so it really scared me when he said Neurosurgeon, but by the time I left his office I had composed myself and in the two hours it took me to drive home it really was ok. I came to terms with it, I decided to do all the research I could and be ready for whatever the Neurosurgeon recommended.
As of now I have not had my appointment with the Neurosurgeon, on top of everything else there are complications with my insurance and finding a Neurosurgeon who takes it etc etc etc … At least now I can say I have thoroughly done my research. I have three options, and if given the choice I am going with the crainiotomy as that is the only proven way to be completely free of it and if I am not free of it I will worry over every little headache. My mom is freaking about it, because she says its not the anyerism that killed Dad its the surgery, but I have to go with what I think is best.
I understand the risks involved, and yes I am a bit nervous, my loved ones don’t really seem to see this procedure as life threatening (except my mom) but I know it is, the chance may be low but it is still there, and I think I am ok with that. I mean what choice do I have but to have faith that everything will work out as it should?
Til next time gang, peace, health, and happiness!
~Jo
Hi Jo,
Well look at you, you have a website, you are a great mom and very intelligent. Well you impress the ass off of me anyway.
Just my thoughts on this matter are; the crainotomy is the quickest solution to ridding yourself of the AVM and any possibility of developing an aneurism. I had an aneurism, it bleed and I was in a coma for six weeks. I say go for the crainotomy and get your life back on track. I know you have read my blog, I really hope it inspires you to battle on. But remember what I said at the end of it; “recovery is not instant”, it will take time and it will take a lot out of you so try to be strong. The main thing to remember in all of this is; it is your body, your life, so do what you think is right and don’t take second best. You have done your research and weighed up the options. Hey whatever your choice I will be here to offer my support and if you need anything else please tell me.
What has it been? two weeks or so since we virtually met, I am not sure because I am so overdosed on anti epilepsy drugs that my memory is short. It is tough and it may get tougher but you are tough as well.
God Bless you Jo.
Liam. xx
Hello,
What a beautiful way to celebrate the love, life and memories of your father. I can see what an exceptional
man he was - after all, he had you.
Always remember that he will always live on through you and your children and keeping his memories alive
through what you say to your children, even this wonderful posting is a way to keep him alive in your heart.
Thank you for sharing.
Jenny
Hi Jo,
I haven’t been to FT in ages, and just came to check out your website tonight. Your news was like a kick in the head (no pun intended) to me, I can’t imagine what YOU feel like. Since this was written in March, I’m wondering if you followed thru with this decision, and if so, when the surgery is.(was?) If you’ve already had it, I’m sorry I wasn’t around to offer a little moral support, and help in any way I can…which wouldn’t be much, I know.
I HOPE it’s not scheduled for now, to take away your entire summer…although I’m sure it would probably be best for timing. Anyway, I’d love to hear from you…I hope you’re doing better that you were in the last few entries I just read. Take care…my thoughts and prayers are with you….Bonnie
Dear Jo,I stumbled across your videos on you tube when I was looking up Bipolar Disorder.I am amazed at all we have in common!I have BPD and also an AVM in the right side of my brain.The doctor discovered my AVM after the birth of my first child at age 16.Excruciating headaches led to my first CAT scan.The conclusion to that was,the thing was too deep in my brain to do surgery.I’m 40 now.My headaches seem to be a mixture of migrain,CLUSTER,and tension.They last 30-40 minutes,and usually happen in the middle of the night.They go on for about two months,nightly,and sometimes in the morning when I wake up.They are becoming less frequent as I get older.I had 5 children.My oldest son,Bryan,commited suicide when he was 18.He had also been diagnosed with BPD.I’ve been through custody battles too.Anyway,when I saw your video on pain and guilt,it made the tears roll.I’ve been trying to explain to my daughters,10&12,and their dad[whom I am divorced from,but live with to raise the girls together]why I don’t want to go out most of the time.I did get my oldest daughter to listen to the video this morning.Thank you so much for doing these videos.I’m just getting started on reading your stuff,I just wanted you to know that I appreciate the time you take in hope of helping others.I’ve had a very rough life myself,and would be glad to share it with ya if you want to hear it.I do hope to hear from you soon,Bonnie Williams
Once again Jo, thanks for this forum where people can support each other.
Bonnie Williams, I would like to talk with you about your experiences with Bipolar also. Please contact me @winsomealexander@yahoo.com. Thanks, and I pray you have a good day today.:)
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