Bitter Sweet....1st embolization June 3rd

General
1

My large, deep AVM located in my right occipital lobe, with deep feeders is finally going to be treated and I find myself more scared than I have ever been. The reality for me is, a permanent hemianopia in both eyes, among other things. The journey ahead seems long...I always thought I was ready for this moment and now I find myself questioning and second guessing everything.

So, while I am happy to finally be treated after six long years of waiting and gaining more deficits and loosing my quality of life, I am also scared of what my world is going to be like after treatment. I'm scared that I'll never be able to sketch or paint the same, that working on pointillism pieces may be a thing of the past....and dating, as a single mother who is legally blind becomes even more difficult (as if I've been super successful prior to this) lol.

If anyone has any advice, that would be helpful. You know things I could do to prepare for my three day stay. Is there any major side effects that I should be aware of beyond the most common complaint of headache?

My treatment is as follows:

6-8 embolization's, gamma knife

Thanks in advance for your help guys! This site has been very helpful to me so far.

~Mica

2

I am sending many comforting hugs your way. I hope that your treatment goes well for you.

3

I feel like I am going thru nothing compared to u. I have my first and hopefully only embolisation next thurs to treat a small avm that bled in November which required a 9 day hospital stay where I had a ct scan and angiogram. My advice for hospital stay is take some home comforts. I have a fave pillow, and get some of ur fave drinks…im addicted to Ribena cartons. I always like to have some nice smellys also and I found wet wipes very handy. E-books for me have been amazing especially when you dnt really feel like doin anything but want to keep ur mind busy. Ive listened to nearly all the Roal Dahl books and now I’m on the Harry Potters. Good luck with everything and it seems you have been strong for so long. You need to keep it up.xxxxx

4

Prayer sent up for a successful embolization.

5

Wish u a good Embolisation !

6

Mica
Good luck! Your head will hurt and ask for those ice gel packs and they cant reuse them so save them and bring them home to reuse
Also I found frozen fruit pops weee great
Just take it easy drink lots or water and coconut water to flush the iodine and other stuff out of your system
Good luck
ANgela

7

Stay strong, you can do this! I know it seems like a long journey ahead of you with no guarantees but God will see you through it. We are all here for you :) XOXOXOXO

8

I've had 3 embolizations and each one was completely unique - one was just no big deal at all, I was up and out and home the same day, no side effects, no headaches, it was as if they had done nothing to me at all (other than my thigh felt like someone had punched it repeatedly and I had a massive bruise).

The next embolization was very rough on me (but that's rare). I ended up with a spectacular bruise on the thigh.

The third embolization was rocky but not a disaster like the second one was - because one of the blood vessels they were spitting glue into was very near the scalp as well as a nerve, I ended up with a very very sore scalp and my hair fell out in a patch near where the blood vessel ran under the skin. I was put on gabapentin because my scalp really hurt. Once I was on gabapentin, everything was fine.

I think embolization reactions depend a lot on where the blood vessels are that they're working with and how they react to being blocked off.
Most people seem to sail through embolizations with no problem or just minor complaints - the way I did with my first one. For a three day stay, I recommend books or books on tape in case you don't feel like concentrating enough to read, an iPad so you can watch something other than the junk on t.v. - have someone smuggle you in a favorite food or drink, and earplugs in case you end up in a shared room with a noisy neighbor.

Sending good thoughts your way! Let us know how your embolizations go.

9

I too, have a left hemionopsia from my AVM resection and craniotomy. I'm not gonna lie....it's very difficult to live with. I have suffered many hemorrhages too over the years, and learned to walk over and over again. For 38 years, the AVM was inoperable, then came the time where my condition was grave. Decades later, and two proton beam treatments, thee malformation leaked creating a blood clot on my brain stem. I know how to get well and relearn things after a massive hemorrhage. I don't yet know how to live, and live well, after a craniotomy and with this hemionopsia. It was nothing but a miracle that the embolization, and surgery the following day, saved my life, but it is a different life. Since my first hemorrhage, at age 15, I have always cherished each day I have. I had a different life, a better one, because of it. Yes, dating was a challenge. There were things I couldn't do and couldn't always keep up. I looked well, as if nothing happened, I just had no balance...not the worst of things. The eyesight thing is the worst of things. A challenge to every thing I do- not going to lie. You can learn to live with it. For me, I can certainly no longer drive, and being a passenger isn't too fun either! I dropped the words when reading at the end of the line. Tracking was an issue, but that went away. Still, reading isn't a pleasure anymore. I bump into things, people, walls, etc. and basically look a little tipsy all the time. The hardest part is eating and not knocking things off the table. Good luck to you. You will be so glad to get rid of the headaches and life threat. You never know, it may go your way and along that way, you'll find Prince Charming! It took me forever, it seemed, but was worth the wait! Best to you, Susan

10

I will be thinking of you & praying, I had two embolization's back in 2010, they went well with a good recovery, however the hope was that they would take care of the AVM, they did not and the next step for me was surgery, which caused a brain bleed, I am 5 years post surgery and have no physical handicaps, I still have to work daily on working memory issues, I have central vision, however there has been no improvements in my peripheral vision on the left.. I wish you the best outcome for your procedures. I have learned to work around most of these issues, have faith and stay strong , sincerely, miss daisey

11

Thank you so much for sharing your experience with me. The unknown is scary, but reading your experience is helpful. I will definitely be brining ear plugs (didn’t even think about that lol) and also good foods…Food always makes me feel better. Lol

I will definitely follow up and let you guys know how things go.

Have a beautiful Holiday weekend!

~Mica

12

Praying all goes well.

13

So many emotions come up for me as I read your post, as I remember far too clearly the fear I felt before mine. As I write this post, I feel my throat constricting and tears well up in my eyes, I say to you, know that my heart is with you and I'm sending you warm embraces to hold you through your journey ahead.

In my opinion, our minds are so powerful that our thoughts that run through our heads can make us absolutely crazy, terrified and paralyse us with such fear that we lose sense of what is. Take it day by day until then. If you have questions, consult the doctors until your questions are all satisfied. From what I've learned with my own experience, they feed you with the necessary information and will give you more information upon request. In my case, the less I know, the better, and I'm grateful with that decision.

I remember quite clearly having absolutely no control over the situation and/or outcome. I remember quite clearly at that moment letting go of all control and surrendering to the Divine and uttering the words in my head "I give myself up to you as my life and all outcomes are now in your control. I no longer resist. My life is in your hands" and being at such peace.

As for the procedure, I remember absolutely nothing. As for the result, I remember waking up and yes feeling really bad headaches, excruciating pain when I would try to sit up in bed as I'd had a bleed and from what I was told, some residue had built up in my spinal fluid. Over the next week it had cleared up and I felt fine. My faculties were all in tact and recovery was quick, out of hospital after three weeks as I was 4 months pregnant at that time.

Today, my daughter is 11 and the light of our lives, I'm fully recovered and awaiting an MRI that will most probably be followed with the very last consult with my neurosurgeon.

Unfortunately, no one can give you any guarantees with what will be. Case by case, everyone is different in so many ways. It is what it is and in my opinion, the way we embrace what is at this very moment, is the very best way anyone can approach and get through these difficult procedures.

I look forward to reading your posts again after the procedure is done!

Much love to you,

Angelica

14

Thank you so much Miss Daisy for your encouraging words. I’m glad you recovered well and learned to work around some of your deficits. I hope to do the same.

~Mica

15

Though difficult for you, thank you for sharing. Your experience let’s me know that things a second what unpredictable but one can overcome whatever obstacles or set backs comes up. I’m mentally preparing myself and the words of encouragement are helpful.

Thank you
~Mica

16

Thank you so much Helena! Xo

17

Good luck to you. Hope everything goes well and safe

18

Musemica, I understand your fear. My first AVM ruptured when i was 20 and i had my first Gamma Knife at 21. It took a long time for me to recover and i have suffered from seizures ever since. I take medication to control them and when i was finally getting better the AVM didn’t fully heal and ruptured again. I have since had an Onyx embolization and another Gamma knife this past July. I am still recovering as well and have had some set backs since then. It is a tough road but know that there are many of us who know exactly how you feel mentally and emotionally. I understand on the dating as well. Anytime women hear of my condition i can tell it scares them or when i have a seizure and it makes it a lonely existence sometimes. The best advice i can give is to focus on your health and recovery. I know how scary it can be and the road ahead. I will pray for you and if you have any questions or just want someone to talk to and ease your mind feel free to contact me anytime. Good luck Musemica and hope to hear how you are doing.