Hello, I am a new member just joined and trying to find my way in my first support group since my AVM brain hemorrhage a year and 4 months ago. The recovery process is still unfolding, since the beginning of my journey. I am looking to connect with other survivors and their journey in recovery from post brain hemorrhage. As I am learning to navigate this site any help would be appreciated.
So glad you found us, KyLady. I'm also forever grateful that the 1st neurologist I saw directed me here. I receive lots of good info and support here. I hope you are helped, too.
Thank You for the welcome. I hope members are patient with new members such as myself. The recovery process has been with very little support. This is a big step for me to reach out.
Welcome KyLady-Happy to have you with us!
I too am a AVM hemorrhage survivor.Mine happened about eight years ago now.
You found the right place-there's a wealth of information available here as well as support and great people.
God Bless & stay strong!
-Denny
Hi KyLady, welcome! though I was fortunate not to have a hemorrhaged AVM (read my story if you wish) connections and support, as you navigate your way through recovery and beyond, is what you'll find here. You'll realize very quickly that there are plenty of others here who have experienced exactly what you are. Take great comfort in knowing you're not alone. There's a community of our AVM brethren, to provide support & insight, answer questions, and share their personal journeys. I'm a recent participant here too. I was amazed, the welcoming and supportive arms there are from everywhere! So fear not, be patient and positive. You're going to be just fine.
Welcome to the site. Perhaps this link will be some assistance…http://www.avmsurvivors.org/page/first-time-user-guide
Welcome KyLady, I am actually 8 yrs post AVM bleed but wanted to let you know that I am still seeing improvement. You don't mention your condition but when I was at your point in recovery I had learned to walk, regained my ability to speak properly and my left arm and hand were working well. Before my bleed and resulting paralysis I was an adult competitive figure skater and while I can skate, I have deficiency in balance and spacial awareness. These are the two areas where I am still seeing improvement but only because I refuse to give up. My point is...never quit trying to improve. I am so thankful that I did not listen to the doctors who said that I may never walk again. Valerie
Welcome KyLady:) I to am from Ky.I live in Lexington .
It’s been an year and 2 months since my bleed.
I was living in London,UK when my aneurysm burst. I had gamma knife in September and I am working on slowly recovering. Some days are good and others not so much. This is a wonderful place for support from others who know what it feels like to go thru this. Feel free to message me whenever:)
Prayers to on your recovery!
Niyani
Welcome KyLady. So happy you found us. We are a variety of survivors and people dealing with their afflictions, but we are a very supportive bunch. Anything you want, just holler!!!
Hi KyLady
Yup, mine hemorrhaged too, had a stroke whilst working out in the gym, total shock, had no idea i had an AVM, never even heard of them until I had my Neurosurgeon explaining my situation to me.
Was paralysed in my left side, was told probably be in a wheelchair, expect the worst by bleed was so acute, hey here i am nearly 4 years later, still amazed ive been through it all, feels like a lifetime ago but I still have minor troubles, speaking, thinking, dexterity in my left hand, numbness in left side(which ive got used to), balance to name a few but things also improve all the time, i could not type on a keyboard at all with my left hand, now im back to using both hands(alot of spelling mistakes) but hey its progress and i know things will get better all the time. I couldnt drive for almost 2 years, now im doing up to 500miles a week. You will progress every day even when your not aware of it. If you wanna catch up, have any questions, just holla.
All the best in your recovery
Phil
Welcome,
I am coming up on my 1st year anniversary of my AVM brain hemorrhage. I am pretty new to this site but it is full of good information. There are a lot of people here that can answer many questions and tell what worked for them.
Good luck.
Thank you for your reply and welcome to this site. It was a wonderful welcome to awake this morning with such open arms.
Hi! It has been 1 year and 4 months since my 2nd brain hemorrhage! The first was in 1988. I am most grateful to be a survivor - hang in there!
Thank You for your welcome, it was wonderful to awake this morning with such open arms. Yesterday was a very overwhelming day for me. As my my year and few months of recovery I lived in self imposed isolation. My previous life was one as a high achiever and a public position in my community.I had managed a life for years with Lyme Disease and high functioning. Like a thief in the night that came to take my life I had no defenses or knowledge that I was in the battle for my life. I was managing to get my feet and legs up under me and a recent new infection from a tick bite on Easter Sunday put my recovery into a whirlwind again. I realized I could not manage this journey alone. My first steps out of isolation was returning to photography that I love. Utilizing a creative approach to reconnect with my authentic self. I look forward to reading your story and others. It is a comfort to take this step forward to know there is this community.
Wow,I Thank You for your welcome and sharing. It was so nice to wake up to such open arms. I think we may have a lot in common. Being a competitive figure skater I understand in my own way. My previous life a very high achiever,very competitive in the public arena of being the first female to serve in a position in my community as an appointed leader to revitalize a community. I was determined and disciplined to accomplish many goals. I was lucky that I had no major paralysis. My bleed was on my occipital lobe and was deeper than first thought. My Doctor can't medically explain why I am not blind. I have visual processing issues. Motion is difficult for me to visually process. Every nerve ending in my body felt exposed. I have difficulty with spacial awareness. I have refused to give up on recovery, I think my mistake in the first year journey was to isolate myself and push people away. My Independance was fierce in unhealthy ways. Being vulnerable and fragile was not a condition that I was comfortable with. I had to realize that the fighter was a survivor and that was a powerful awakening. My first steps out of isolation was to return to my authentic self and creative passion as I am sure you did with skating. Mine being photography, That resulted in a tick bite in my first outing in nature even with protective layers. I had been infected with Lyme Disease at age 29 and managed well. Now a new infection has been a new storm with such complex recovery. The neurological impact is a set back. I found myself here as a way to manage to keep myself focused I can continue to recover and get through another storm but this time,not strong enought to do it alone. Thank You for sharing your story and welcome.
Thank You for your kind welcome. All the welcomes have helped my day to start off positive and not feel alone and isolated for the first time in a long time.
Phil,
Thank You for your reply and welcome. Your story is amazing. My bleed was on my occipital lobe, my family was told if I did survive that I would most likely be blind. I am lucky because my vision is only affected in the visual processing center and not the optic nerve. My memory was very much impacted. I still have no point of reference of what was the last day or event of myself that I remember up to the point of my hemorrhage. My speech was affected but has greatly improved. My long term memory intact but the previous year of my life was erased. My career before was in serving in a public position, public speaking, grant writing,public infrastructure planning,tourism development. As well as a part-time feature newspaper reporter for assignments on the community.
Loosing the skill of organizing my thoughts and words as well as my independence was life altering. I am one year and 4 months and still unable to drive. My goal that I put on the top of my list is to manage to learn how to drive again.
It gives me hope to know you accomplished after two years and now up to 500 miles a week. I started about 3 months ago a personal online journal to help with organizing my thoughts and keep a timeline for memory. I am glad to know your success.....
Ramon,
Thank you for your reply and welcome. It has been a great comfort to me to receive such positive embrace from this community. Around the anniversary of my one year, I was just starting to feel like I was present to the hours that I was awake. Each day has gotten better to be present in each moment.
Hello KyLady, you have come to the right place. I am fairly new here myself, but have read amazing stories and get inspired by them all the time. Mine happened 10 years ago out of the blue. I was very active in sports, playing and coaching, and them BANG, it all went away. Like most, had no idea I had an AVM, had never heard of such a beast, but it let me know real quick. I couldn’t drive for the first two years but now I hop in my truck and go where I want. Mine is inoperable at the time, maybe one day they will come up with something. I did do the radiotherapy route, and they told me it would shrink and die within a year. Now every year I go back to get an MRI they say, well sometimes it takes a while longer. I’m thinking 9 years longer? Anyways, I have bad days and then I have worse days, I have come to like the bad days. A lot of memory loss, instability, headaches, my left side is a bit weaker than my right, which is good because I am right handed, but I try not to let it get me down. I’m not the type to sugar things down so, there will be days that you just don’t think you can take it any longer. YOU CAN!!! Trust me, I have had many of those days. But I try to stay active. I have to use crutches to walk, but I’m walking. I help coach a girls high school softball team,I mow my yard, wash dishes and clothes, and try to keep the house clean. I still can’t go back to work, on disability, hate it, but there are bills that need to be paid and my wife’s salary is not enough to get it done. So I am a house husband and try to keep the chores around here done so she doesn’t have to worry about that. I am glad my kids are grown. One is in college, she got a scholarship for softball so that helped out a lot, and the other is married and he and his wife gave my wife the perfect Mother’s Day gift. They will be having a baby sometime in January. They are already trying to figure out what to call me, they came up with mee-mee for my wife and pee-pee for me. NAH, I DON’T think so. Anyways, I thank The Lord each day that at least I am looking at the right side of the grass and if the sun is shining I get to see my shadow. It will get better as time passes. Faster for some than others, but it will get better. Have a great day, and when you go outside look for a shadow on the top side of the grass. It lets you know that you are still alive, and that in itself is a blessing.
The possible grandpa name for you made me lol. Yay for you for staying active and encouraging new members. May God continue to bless you abundantly.