Yesterday (05/13/15) I went back to Omaha to have an MRI. The doctor said while it has shrunk some it is still there & he also sees some shadows. I will be going back in August or September for another angiogram & possibly more radiation. I have told everyone I am fine, but I really don't feel fine. I know my friends & family won't understand. I had prayed that it would all be gone by now, I guess that that was just wishful thinking on my part.
I've tried to explain why what may be ahead for scares me & people just tell me how lucky I am & that it could be worse. I know all that & I am incredibly grateful for how things have turned out. It just doesn't mean I am any less scared. I know it sounds weird I was less scared of the unknown before I had the initial angiogram & the radiation, I didn't know what was going to happen or how I was going to feel, but now I do know what all those feelings are.
It helps to talk about it. I just wish there was someone who would put their arm around me & give me a hug & tell me it would be alright.
Sending you a virtual hug. I am new to this and haven't hadn't had my appointment since the discovery of many avm thru my hip buttock and right leg. I can't begin to imagine what this is like for you,scary,frustrating,angry?? And much more. X
Sometimes good things take time, and we need to continue letting the doctor do his/her thing and hang in there so that we can taste the full success later.
And if you prayed that things would be all gone by now, why not continue that
and in the right time may it all be as you hope.
Things got better for me in time, and they also have for others here, and we want to read later that it all also worked out for you.
You hit on one of the biggest challenges, time. These things seem to take forever to get resolved. It just grinds you down. When I first was diagnosed I was full of resolve to beat this thing and to make the most of every day. Now I sometimes feel energized, but too often I feel just drained, and my thing has only been going on for 4 months. I wish I had some good advice, but really nothing I say can make it OK. I guess we all need to just keep going as best as we can. It does help a little to write here.
I can only think what you are going through at the moment. I am still quite new to this, as my right frontal lobe brain AVM was only diagnosed recently (03.04.2015).
I still have to go for an angiogram so they can measure my AVM to determine the best treatment option (if treatable) as mine looked quite big on the scans. My angiogram have been postponed 2 times in 3 weeks due to my medical aid. It is very frustrating as I want to know what will be happening next and get this all over with.
It's also very scary at the same time as I don't know what to expect at all. So I can only start to think how you must feel having gone through this already...
Now you must also know that I have been struggling with epilepsy since early childhood, so this coming now after all this time and me already having kids of own was quite a big shock.
If you have a believe system and I see you do, remember this.... God would not have given you this disorder/problem in your life if He did not think that you would not be able to manage it.
This is something that I live by everyday. This and my kids - age 4 and 6!!
Keep on believing, keep on praying and use your support system (family and friends). I think some are not so lucky to have one at all. Soon you will see that there was a reason behind everything happening the way it did. All at the right time, God's time!
Close your eyes, cross your arms to your shoulders and squeeze tight!! You will get through this again.
We are alone… There I said it. We are so few our illness doesn"t make the news. Our sy,proms vary so much depending on the location of the brain (mines is in left basal ganglia, thalamus)and causes me optical, auditory, balance, focal seizures, and massive headaches. Been to UM, Shands, Boston, Johns, Columbia nd currently at Neuroligical Sciece Institute in Palm Beach. Been dealing with Bobby (my avm) for more than 6 years. Took on a management approach, took on a wait and see approach, was in denial, was scared, wife now has been scared off and left me due to my limitations, seeking disability but don’t want it. The strong get stronger others just don’t… I’m getting tired of fighting myself. Sorry, if this sound negative, it’s just how it’s been affecting me. However I will always have God and my prayers. My knees are bent and I will pray for you as well. I feel we need to get our message out if not for I’d, then for those whom will sadly follow… Brain AVM’s are torturous in nature. Their locations create issues that go beyond a physical category. I think you can see where in the long journey of dealing with an AVM I am in. Do not be quiet about how you feel nor should you permit yourself to be told how to feel. I am sorry to have to count you among us, but since you are know the we know what you are selling with and will listen.
Hi Lori. I’m so sorry that your appointment did not go as well as you had hoped. As I have dealt with my AVM, I too have found that waiting and waiting and the fact that I have no idea how long I will be waiting to be one of my hardest trials. There are things that I can’t wait to be able to do again, and it’s so discouraging sometimes just never knowing if and when I will be able to. It’s really hard to believe that things will be ok some days, but I really think it will be. I have decided that I can’t let this stop me from living my life. I can’t waste my days hoping for better ones, because let’s be honest, AVM or not, life is just full of trials.
I’m sending you a virtual hug, good vibes, and you are in my prayers. I really hope that things will be ok for everyone here suffering from an AVM. Keep seeking out support from others on here. If you have a close friend or family member, don’t be afraid to let your guard down and vent to them. I depend on my husband and my best friend a lot to just listen some days. I can’t begin to tell you how much seeing a therapist has helped me to deal with my emotions through this. There are people out there willing to help.
Keep having hope and praying for the best! We can beat this monster!!
Hi Lori, I just read through the replies and I hope you are boosted a little knowing that your venting here has helped others dealing with their own fear. I pray for strength for you and please post here as needed. Hopefully you will find the writing cathartic but as humans, there are times when it's so helpful to say me too.
Lori, we too are new here, 2-1/2 months our granddaughter had a bleed, her AVM is on her brain stem, and I would do ANYTHING to trade places with her!! I too want all this to go away and let her enjoy all the fun of growing up to be a beautiful woman. I pray a lot, the tears are still with me, but lessening some. We have to stay positive, there could be a new break through any day for a new cure. My prayer list will include you as well, this site has been very supportive to me. HUGS!! God Bless you all!!
Virtual hugs girl! I agree with "awesome possum" post below. Gotta stay strong as frustrating as it may be. Fear knocked on the door, Faith answered, Nobody was there.
Hope is the only antidote to fear.
Vent anytime you need, that's what we are here for !
God Bless & good luck on your journey ;)
Hi there i too went through this thing twice and the 2nd time is scarier in a way cos you know what to expect. And im with you it is disappointing to have to go through it twice but its a means to an end and my avm is gone now. Dont get down keep your chin up. Its amazing how quickly that 2 years go. And it is smaller now than it was when you started.
It is tough Lori, i have had two Gamma Knife proceedures and it is difficult. The second one was not as bad but i do notice a difference. Try to take it easy after while you heal, i am almost a yr out from my last Gamma Knife and still recovering but i do feel much better. It will take time but be strong and you can ask me any questions if you have any. Good luck Lori.
Totally understand!! I'm soooo blessed to be alive and for the most part healthy. My initial bleed caused a seizure disorder and I rarely have headaches.I'm on a ton of medication and just feel exhausted. I just had my third gamma knife which I hope and pray is the last one!! Praying for peace of mind. What helps me the most is knowing that God is in control and thanking him each day for the blessings I do have!! =) Vent away, it's good to do that occasionally!! I also joke and wonder how much radiation can one brain take???? LOL...I actually don't want anyone to answer that either...;)
I feel like this from time to time. I feel so good for days at a time, then boom, drained, tired, so sleepy.... I guess when I feel good I am over doing it but I can't help it. Makes me feel better when I am energetic enough to get out and enjoy life. Then I am not dwelling on the waiting and wondering of how things will turn out in the end. I am excitedly waiting for my angio in late August/ early September to see the progress. It truly is hard waiting. I can feel you there. Everytime I "forget" about it I have one of those tired and worn out days, or an awful headache. Just reminds me it is still there. A lady at my church had a hemorrhagic stroke this week. Unsure what caused it. She is the mother of one of my high school classmates. It was a left side bleed. So she is paralyzed on her right side. She is in ICU in Macon, Ga. Prayers for her would be appreciated. Hugs Lori.
I had to have a second gamma knife 3 years after my first one. I actually thought the second one was easier since I knew what to expect. I really didn't want to do it again but I was young enough that my family couldn't do without me. It was more important to be there for them in the future than for me to get out of an unpleasant procedure. That second gamma knife was in 1993. Although I was left with some deficits I lead a very normal life. You can do this. If it was someone you loved very much and they needed to go through this again you would want them to. My recovery from the second gamma knife was quicker and easier than the first time. It's okay to be scared. I bet we were all scared when this happened to us. You're just having feelings that are normal in the circumstances. All of us here will support you. :)
Thank you all for the support. It means a great deal to me.
While I am scared of what is ahead of me, I will go through with it. I have 4 beautiful grand-babies that I need to be here for. I have been through to much already to not go forward with this.
In 2006 Gastric Bypass 2007 Kidney Cancer
2008 Blood Clots
2009 Hysterectomy
2010 Back Surgery
2012 TIA
AVM--Brain Surgery
Sciatica
I also suffer from leg cramps which the doctors have no reason for it to be happening, they just give me drugs & tell me to deal with it. I have also been seeing a chiropractor to deal with some one my back & neck pain issues. I have been told I should try to get on disability. But I am not disabled, just in pain the majority of the time.
Again thank you for all of your kind words. I definitely feel better today.