What am I in store for? I need help

My name is Nick and I am 18yrs old. I recently got diagnosed with an avm in my right parietal lobe at about 3.5cm and a grade 2 speltzer scale. Just 2 days ago i had an angiogram done and am set to go in for embolization in june 15th and brain surgery on the 17 of june 2011. The neurosurgeon gave me info on the procedure but it is not the same as hearing from people who have been or who are going through what im going to be going through. I am so scared of what might happen. I am a professional golfer and am so physically active everyday! Im scared that i could lose the most important part of my life which is my golf. I have no idea of whats ahead of me in life but golf is my everything and i cant imagine living without it. so my question to everyone is can you guys tell me what its going to be like for me and share your stories with me. it would mean so much to me if you guys can help me become better informed and more prepared for the long and tough road ahead. thank you

Welcome to a group full of friendship, knowledge and support Nick:)

I am glad you found us so soon!

My avm is also in the right parietal lobe, in the middle of the motor strip, large > 6cm with multiple feeders (4). You are velcome to read my story, but bear in mind that each avm is unique and also the outcome of each treatment.


Having said that, it is always good to get a second opinion and to do some research before deciding what is the best option in your case.

If you have any questions or feel like sharing your thoughts, I am always here for a chat.

Positive thoughts from Hanne xxx

Hi Nick. I didn't have these procedures done but, I do know what it's like having to give up something you love to do. My activity was different than what yours is. I was a martial artist at the time and I worked out 6 days a week (2 to 4hrs a day). My doctors told me that just by me doing that, could cause mine to rupture. I still did it for quite a while, until my doctors "put there foot down" on me (so to say). It's been many years later, and I still miss it.
Unless you are having some problems - I would think that there is a good chance that you may not have to give up golfing. I personaly, find it a waist of time to speculate and dwell on things that may never happen (just my thoughts).

Ben

Nick,

Just read your blog and understand your apprehension. 40 years ago I had no time to contemplate anything..It was crude back then but it was do or die. "You might check out my story-

http://mysite.verizon.net/~vze255shFear Not, My Son-It's been a wild ride.

Keep in touch, my friend,

Rob

Hi Nick

I had 2 embolizations done back in 2007. Like you I was super scared both times. I was suppose to have 4 done but they decided 2 was enough. At that time I was 24 (barley) and my son was about to turn 3 yrs old. The embolization was ok, not something you want to do by choice. But it was ok, I was awake for the whole thing both times and after wards the worst parts where the bad headaches I had and pain in my leg. You can also go onto my page and read about my avm journey. Feel free to ask anything. I will share everything with you! Best of luck keep us posted

Hi Nick,

It's perfectly normal and expected to be scared about what is happening to you. I am now 3 months post embolization and craniotomy. I feel great but am still healing. It just takes time. I'm a dancer and after the 1st hemorrhage (4 mos ago) I haven't been able to do anything that will increase my blood pressure or any activity that causes physical strain/pressure to my head. My MD's say I should be able to get back to dancing slowly in about 3 more months, it feels like an eternity. If you'd like to read my posts it will explain to you more about what I've experienced. If you have any questions message me, I'm happy to try and help. Keep your head up, best wishes to you.

Welcome Nick. Like Hanne said, every AVM is different as each every patient. My AVM was in my right parietal and occipital lobes. I had a major bleed so my story is not like yours. My physical strength was totally gone after the month in a coma and the rehab. was the hardest thing I’ve ever done. That shouldn’t be the case with you at all. I think the fact that you are so physically active and healthy will help you immensely. Ask your surgeon what, if any, deficits are possible and if they expect any at all. It could be that your AVM is in a good place and relatively easy to resect. You will probably be very tired for quite a while after your surgery. That’s a pretty common side effect. My hope is that you’ll be back on the links in short time and are able to resume your love of the game! Good luck and let us know how you’re doing.

wow! thank you guys sooo much!! After reading through your stories I feel blessed to only be going through what I am. It must take so much strength to go what you guys have gone through and you guys are a real inspiration for me to beat AVM! and get back to my dream thank you!

how funny we meet. my husbands avm is in his rt temporal lobe and we are scheduled for his first of 3 embos on june 14 at u.n.m. we have already spent a month in neuroscience i.c.u beause he had an anneurysm and a stroke. after his anneurysm was clipped he got pneumonia and meningitous from the surgery. hes been home since march 3rd and hes doing great. getting stronger everyday. from my experience, everything that happen with neuro stuff happens fast. when things get bad they get bad fast, but when they get better it happens fast too. its going to be a process. it is absolutely vital that you stay as positive as you can. do not let this consume you. YOU CAN BEAT THIS! i dont know how spiritual you are, but one thing that helps me alot is to pray. i dont have a religon, and i dont need one, i talk to god everyday and it works for me. every morning i ask god to send me and my husband our gaurdian angels to protect us physically and mentally. then i ask for the strenght, the courage, the knowledge, and the patients to get through just today. try to take one day at a time, because when you have an a.v.m, you will notice that things change on a daily basis. i will keep you in my prayers and see you on the other side of the beast lol. keep your chin up, you are young and strong and you will make it through this… feel free to talk to me, i would love to help u.

well, nick; there were a lot of things that were as important as “golf” is to you in my life, but I tell the Lord has ways of helping us prioritize and re-learn what we think is important, not that Golf won’t be for you, but your greatest fear won’t be losing your shot, you will be blessed with gifts you did not know you even had. They may be patience, love and compassion for others, steadiness, strength to handle anything, desire not only to look for help, but give that help away, ability to see life through the eyes that you were destined to see them through. I struggle everday with my AVM. But I can honestly say I have been refined in little areas of my life. While I wish more than anything this deal would just end, I can’t ignore the little changes that have helped me. But I will tell you one thing, you find your life is not all about you, but more about helping others. I wish you the best, but know even the worst may be the best. Good luck.

Hi Nick, What a handsome boy. Have faith stay strong and all will go well. Are you going to the Spetzler group? My son was operated on when he was 8. Our bodies are resiliant, and you will heal fast. A grade 2 is better then a grade 3,and 4. My son’s was a grade 3, and he also had a bleed and he is perfectly fine. A straight A student his was deep in the frontal lobe to the parietal lobe. I prayed every night from the day of the bleed until surgery 2 months later. I did so because I loved my son so much and I knew that I needed God more then I ever needed God. I will pray for you as well. God bless. Know that you will golf again real soon after surgery, my son was sailing 6 months after surgery and that was because the only restriction was non-contact sports for 6 months. Golf would be the perfect sport to go back too. In my thoughts

YOU WILL BE FINE. YOU ARE YOUNG THAT’S A PLUS. GET A GOOD SURGON.

Hi Nick. It is okay to be scared…I would be worried about you if you weren’t! Just a reminder there are 3067 survivors on this site! We all went thru this ordeal and came out the other side! I will be praying for you!!!

Hi Nick,

Welcome to the site.

I'm not a 'brainer', I'm a 'spiner', so I can't offer anything as far as what you might expect from your embo and surgery. But I hope all will go very well for you with your procedures and that you'll be letting us know how they went and how you're doing.

Hang in there, and I think if I were you, I'd make plans to play golf the week after the surgery. :-)

Tori