I had a really bad day yesterday. I woke up with a headache and the throbbing pain in my left eye again. Of course, my leg weakness has been a constant. The toughest thing that I am dealing with is the way that no one around me understands what I am going through on the inside but physically and mentally. My husband and two best friends mimic and exaggerate the way that I walk. I know they love me and just don't understand, so it is difficult for me to vent to them and receiving the right support. My only symptom that even allows anyone to know that I am not the same old Susan are my legs. It is so frustrating and disheartening to know that no one in my life, before this site, has ever heard of this condition and can't help in the healing process. Just wondering how everyone deals with the newness of it all.
I felt the exact same way! I found reading books helped! No One bothers with you when your nose is in a book! The fact that my leg was paralyzed killed me! I was winning marathons the year before the rupture! Another suggestion is this is truely the time to develop new interests and hobbies If a friend or family will indulge you--that is the tricky part! Well good luck, I know talk is cheap, but these are some ideas that helped me
Susan, I too have leg weakness, are you on seizure meds? This helped me emmensley! I know how you feel, it seems no one understands but that is why places like this are awesome. So do you have a Cav. Malformation or an AVM? Mine was 3.1CM when it was finally removed emergently, I had suffered migraines, leg weakness off an on for 3 yrs, then all of a sudden I was having worse weakness, to the point I could not walk then had surgery the next day after sufferring a seizure and increased weakness to not being able to walk. I really hope you can have it removed. How long have u suffered leg weakness and symptoms. I hope u feel better, hang in there, it takes time and patience. You can msg me anytime, I also am able to vent on Cavernous Malformation Community on Facebook, it's a closed group and only people suffering from the illness can join-no outsiders so it's pretty safe... Hope to see you there! Heidi
Hi Susan. A lot of member say that practicing Yoga has really helped them!
I will certainly have to try yoga. Thanks for the tip. I am hoping to get back into the gym soon. Yoga,I may could do some the the stretches now.
I am not on seizure meds. I went to my neurosurgeon for my first visit on November 11. He first thought it was an AVM from my CT Scan. After my MRI, he said that it was a small bleed from a CM. I have suffered from headaches my whole life and thought anyone who said that they never had headaches were just blessed. I do not think that I have had a seizure at this point, though my husband says that I zone out more than usual. I go back in 8 weeks, January 13th, for him to do another MRI, and we will decide from there. He said that my symptoms are from the blood reabsorbing and should be gone in the 8 week time frame. I didn't start having any other symptoms until after the bleed and the leg weakness is the only symptom that has progressively gotten worse over the last few weeks. I work in a large school and walk long distances which seem to make it worse. Thanksgiving break was a blessing to rest. I am new to the board and will have to learn how to message. Thank you so much for allowing me to vent and give advice to me. This is so new to me.
Thank you, Nicole. I too am a runner and often wonder if that is what caused the bleed. I had just run 3 miles that morning when it happen a few hours later. Thanks for the suggestions.
Hi Susan. I just sent you a friend request. We are only 1% of the population...do not expect to meet a lot of people who know know what you have!
Hey hey..I know how u feel...i experienced the same before and now even after my surgery too..ok I have no weakness in arms or legs but i have to deal with a few other problems now and even the psychic deficits like anxiety and anger..but no one seems to understand how it is to wake up every morning and to feel completely different as usual...i shall not always think about my issues thats what i ve been told..but how can i forget about them..when i get reminded every second - in everything i do or want to do..how can u forget that u can´t see or hear properly....!! Sorry that this was my first brain AVM and my first craniotomy and sorry that i don´t know what to expect or how to deal with that....!I know they want only my best..but i think noone who hasn´t been there can understand what we are going through.
Oh,no! I thought that if I had surgery the symptoms would vanish. I am so sorry to hear that you continue to have problems. We for sure cannot forget these issues when they are a challenge to us everyday. Thank goodness we have this website to find others that can be understanding and know how we are feeling on the inside. We can always vent to each other. Sending the best of wishes to you:)
Surgery doesn't necessarily take care of the symptoms, sometimes it can make it worse. (Not to scare you, but...) My deficits are a result of the bleed not the surgery. I have a visual field cut on the left side, both eyes. Vertigo, anxiety, unsteadiness when walking, problems with visual spatial info., etc. Again, all from the bleed. Depending on where exactly your CM is the surgeons could remove it and you could be back to "normal", as you were before you even know about this nastiness! It's too early to tell now. You have to see what the doctors suggest.
He discussed both options with me and suggested that if I were his wife, he would recommend waiting to see if another bleed occurs. I am totally fine with that if another bleed doesn't happen. I just don't want to look back with any regrets down the road. He did emphasize that surgery could cause seizures and stroke. That was enough for me to agree to wait and see. Family members keep wanting me to seek a second opinion just to make sure so there will be no "if only I had" feelings" in the future.