But I still don’t feel like myself. Its become very depressing. I was a very active person, with the memory of an elephant (only way I can put it ) I joined this site because I need to know if what I’m feeling is normal. I still have some visual disruptions (seeing shadows that aren’t there, disorientation while walking if the ground level changes (like ramps or small hills). Huge memory gaps, loss of memory. Sometimes I forget where I am or don’t recognize my surrounding, even if I’ve been there a million times. Forgetting school events for my daughter. What seems to be like dyslexia. When I speak words are sometime out of order. My weight gain is depressing because I’m not as active as I once was… I get tired easily and have migraines if I push myself to be more active. My skin problems because I can no longer take my Birth Control since my stroke. Waiting and waiting for my hair to grow ( I had long hair before we shaved my head prior to the procedure)… It just seems like I’m drowning in how different my life has become since the discovery of my AVM. I didn’t feel bad before my procedure and I thought I wouldn’t feel bad after it either. Especially since they were taking out a part that I supposedly wasn’t using anyway! I don’t know whats right to be feeling post-surgical this long after my surgery. Am I going to be like this for the rest of my life? Will it fade over time and I’ll return to my normal self? I don’t know…
Please do not feel alone and use all of us as a sounding board.
I am 11 years post radiosurgery and I still have days and months like what you are describing!! I was a very active person and almost all of the things you are talking about still happen to me on a regular basis!!
My AVM is regrowing now and I am looking at going through everything all over again.
The best thing for me has been to keep my stress level down and try not to let things upset me like they used to.
I know that some people get fairly back to normal but I am not one of them. I did for a while and thought I could conquer the world again but then I started having problems again.
Please know that we are all here for you!! This site is the best thing that happened to me and let me know that I was not alone and that I am not going through all of this alone.
I am so sorry to hear that your AVM is growing back… that is so scary to hear. I hope that the doctors will be able to help you and with advances in medicine today hopefully you will have fewer, if no, side effects this time around. I’m sad/ relieved to hear that you have similar symptoms even now… Sad that I possibly look forward to the same things decades from now but relieved that I’m not imagining whats happening to me. Its been a lot of trauma for a TIA and brain surgery 3 months apart and sometimes I wonder that I’m looking at every little abnormality too closely… Doctors have been unable to explain some of my side effects. Like muscle twitching, migraines, shadows in my vision, ect… It just made me feel… I don’t know, not quite like I was making things up because I know I’m not but I wasn’t sure what was real and what wasn’t. Thank you so much for your reassurance, you don’t know how much it means to me!
Please do not feel like you are alone. I experience everything that you describe (minus the migraines) on a daily basis. I’m just a year post bleed/craini. I try to explain the seeing shadow thing to people and they look at me like I have 3 heads! Memory, or lack therof, is a huge issue for me as well. I don’t know what’s right to feel either, but we’re feeling it so it must be something. Don’t know if we’re ever going to be like we were before, I sometimes doubt it. But I’ve said this to myself over and over…I think we just have to get used to a new “normal”. It’s easy to feel depressed, it’s something I’m just now struggling with for the first time. I think it’s important to have people to talk to that can understand and that’s why this site is so great. Someone here has been or is exactly where you are right now and can share their experience and offer some advice. Don’t get discouraged, if you’re feeling depressed, talk to your doctor right away and get some help. There’s no shame in taking medication if it’s something you need. Lord knows there’s lots to be depressed about sometimes. But there’s also a whole lot to be thankful for. Don’t lose sight of those things either!
Please do not let the Dr’s make you feel crazy, I know I did for a long time until I found this site and when so many of us have the same post rupture symptoms, it cannot be coincidence!! I felt so alone and that every symptom that the Dr’s said could not be AVM related or surgical related was in my head!!
I now know that I am not crazy and not alone. I wish I could give you hope that soon you will be back to normal but I cannot. You will level off and resume feeling more normal but do expect to have some of this that lingers for a long time and may never go away.
I know that sounds horrible but you will find new ways to cope and new ways of doing things that makeyou feel more normal.
I still twist my words around and some days feel so out of place and of course still have the horrible migraines some times but for the most part all of my memory and my sacred intelligence has returned!!
I am one of those smart people that when I had trouble with slow recall - just about went crazy. To this day I have some trouble with that but now I just tell everyone “I’m brain dead today” and go on until I can think of it and then I say “the light bulb just went on” and tell them what I was thinking of earlier. (I still feel that it is a pain and makes me feel bad but you have to find your own way through the fog that never quite seems to lift)
I just keep the faith and I have advised all of my Dr’s that they will not be touching me again right now.
After my ruptures 11 years ago, the Dr’s told me that I would never be able to have children because the stress would be too much on my body and I always risked another rupture. Well, I showed them. As an older Mom, I have son that will be 5 years old this September and he is perfect and I made it!!
They wanted me to abort because they did not think I would survive the pregnancy. (Granted - I had alot of problems and had to quit working and quit my second attempt at finishing college and have spinal taps every month to look for blood and lay around alot) It was all worth it.
It took 28 years for this mass to grow the first time and I am going to give my son everything and hope that I can watch him graduate before I have to have anything done with it again. I know that will be pushing my luck but it is worth it.
I am deathly afraid that if they go in now that I will not be as normal as I am now and I am not willing to risk it.
I started a home bookstore to keep my stress level down and do something that I truely love and also be the mom I want to be to my son. I love my son and I love to read and collect books and now I do both every day and do not worry about what is next with my head!!
Anytime you need to talk, please email me ■■■■■■■■■■■■■■■■■■■■■■■
I am always up late working on books so it does not take time away from my son.
Candace, I’m five years post op from my crani and I can relate to many, MANY of the issues you describe. I don’t have the visual “shadow” issues that you have but I do have disturbances in my visual field occasionally (like “floaters”, I guess you could say). I have gotten over the utter exhaustion I felt after the crani (it did take me almost two years, but I also had a baby within that time frame so…it’s hard to say if it was the crani or the pregnancy/new baby!). I never became as active as I was prior to the discovery of the AVM, so weight issues tend to remain a constant thorn in my side…particularly now that I found that I have three more AVMs that need to be dealt with (fortunately, none of which are in my brain this time!). I’ve been on an anti-depressant since the crani and have found that it helps (I only know this because I’ve tried to wean myself from them a few times…stupid, yes, but…and I found that the numbing effects of the anti-depressant were actually helpful!).
I really wish I could tell you that you will return to your prior self 100% with time…but I honestly think after going through such a life altering experience none of us will ever be the exact same again. Just know that you aren’t alone in your feelings!