Hi, just seeing if anyone has any advice on a bleed within the cerebellum? I had a re bleed in June 2017 and it’s now nearly February 2018… I’m still struggling with balance, vision, walking and internal swaying/wobbling/vibrating/spinning sensation of the inner skeleton as I call it… please has anyone had a bleed here and how long do I have to tolerate this demon. I know all cases are different but some feedback would be much appreciated. Many thanks
M AVM is in my left temporal, and bleed in May 2016. It took me several months to mostly recover. I had gamma knife in November 2016. I still notice a couple things, my balance is not 100%. This is particularly the case with my eyes closed, was not like that before. Like you say everyone is different but one thing that seems mostly consistent is time. Recovery is certainly slow. Take Care, John.
Can anyone advise on a. Cerebellum bleed please? Symptoms experienced, time scale etc. I had gamma knife Jan 2017 and a re bleed June 2017. It’s driving me insane. Please advise. It seems really rare as it’s hard to receive any advice etc. Many
I’m not the patient but the mum. My daughter had a cerebellar AVM rupture in January 2017. Her recovery has been incredibly slow just as her surgeon said it would be. She was basically in a deep coma for a month then an ever lightening fog for three more. Finally spoke at about the 4.5 month mark. She had to have a trach and Gtube but they’re gone now. She’s doing quite well actually, but is incredibly wobbly on her feet. Walks mostly unaided in the house but uses a walker at school. Apart from intense noise sensitivity, eyesight still not perfect and feeling tired and foggy much of the time, she says she’s ok. No headaches. No more nausea thank God because I swear she puked nearly every day between Feb and June. She’s continuing to get better and better and I’m sure you will too. Do you still do physio? We work on core strength and balance. Water therapy 1x a week and regular 1x a week. She’s far from herself but a year ago at this time she was still a 3 on the Glasgow Coma Scale so I’m a happy mother!
The AVM in my Cerebellum ruptured in late 2014 and I still have some of the issues you listed, i.e. being off- balance, vertigo, dizziness, spinning, swaying, short term memory problems, lack of focus (at times), bright & flashing light issues and I cannot tolerate loud noises, i.e. Fast & Furious movies! However, these issues are so much better now, than they were at the on-set of my bleed. It took 3 to 5 months for the brain swelling to subside and it took 5 to 6 months before my Doctors told me that my brain had completely healed. I had Gamma Knife Radiation at 6 months. Things do get better in time, or maybe we just naturally learn how to adjust to our surroundings so that we feel “normal”, or comfortable. You can’t rush the process. After 3 years and 3 months, my AVM is 50% gone an it may take another 3 years for it to be completely gone, but I thank God every day for the progress I have made. P&P ( Prayer & Patience) has been my recipe for healing. I wish you all the best on your AVM journey. Keep us posted on your progress.
Hi Allie, thank you for replying. I do physio once every two weeks. We mainly work on balance and I like to do core work. It’s very slow and I’m quite inpatient. I like to work hard and get the repair fixed. If only it was that straight forward. I would really like to get the inner body movement addressed but it does not seem to want to go… if I can address this, though I think it will leave me when it’s ready. I can then concentrate on one area. How is your young one doing now? Have they come away from assisted help in school or do they still require it? How long approx did it take to overcome the inner sway? I know everyone is so different, it’s just nice to hear people’s stories. Many thanks and sorry for the late reply
Hi Sharon, I’m fortunate that I have not incurred any memory problems. My main problem at the moment which is really getting me down is the inner body constantly moving. Did you encounter this? If so did it stop over time? I’ve had it for 8 months now along with others issues and it’s really wearing me down. It takes all my energy. I really want it to stop, I can then maybe be able to concentrate on fixing. I need my vision to correct to, though I know this this slowly correcting as I can tell. Thank you in advance and I’m sorry for the delayed reply.
Hi Cornishwaves: I have not encountered what you refer to as “inner body constantly moving”. I used to get a lot of “woosh-ing” sounds in my head, in addition to the dizziness that occurs with almost every movement I make. From sitting to standing; from lying down to sitting up; and from sitting up to walking has to all be precisely choreographed so that I’m not too dizzy or spinning too out of control for me to walk safely. Oh how I miss the good old days when I used to just get up and move without thinking about it. Talk to your doctor as soon as you can. Maybe you have an inner ear problem that is causing the sensation. Hang in with us and we will all get through this journey together.
Hello! I had a crani for a ruptured AVM 24+ years ago. The problems you describe sound too familiar! I was very weak, had a wide gait, was unstable on my feet, whoozy in my head, queezy with vomiting, lightheaded/dizzy (especially when lying in bed), and had sensory overload (visual, auditory), among other things. All I can say is that you can’t do anything to speed the healing process. I, too, was impatient. Just keep moving, accepting assistance, and each will improve with your efforts and TIME. Good wishes!
Hi life is good, thank you for your reply. Can I just ask, how long did it take your symptoms approximately to clear up? I know I will be different but it’s near on a year now and I still don’t have my independence. Thank you
As you said it is so difficult to answer your question…every case is different. But, I will attempt to recall!
My unsteady, wide gait improved with daily, out-of-doors walks, supported by my father at first. He would guide me over grass and other surfaces. I would say that I dared walk on my own after maybe six months+/-. By that time, I also felt more confident in my ability to cross residential streets safely. Turning my head from left to right had been difficult due to tightness in my neck and dizziness. I take a daily, 2-3 mile walk on a flat trail almost daily now (yes, I live in the U.S.!). However, I still have trouble walking on gravel, beach sand, or other surfaces. I also feel more wobbly when fatigued or my fibromyalgia is acting up.
Gratefully, my nausea and vomiting eased up over time. I remember eating a perfectly delicious meal, only to suddenly have to… I’d say a couple of months passed when I no longer feared this, but I would still feel queezy at one year, from time-to-time. Oh, and I recall how any food with glucose, lactose, or any other sugar had tasted less than pleasant. I could not enjoy dairy products or even chocolate! That disappeared.
All I can say is that it all takes time. And, for me that was a STRUGGLE! I had to recognize that I would not be returning to life I as it had been. I would not be able to return to nursing…or be as free to socialize or travel. But, with that acceptance, and exploring other sources of enjoyment, I live a fulfilling life.
Keep at it! There will be small, but significant improvements with time. I am here for you. Please do not hesitate to contact me again. Lifeisgood😺
Thank you. I have very similar symptoms to you like the taste. I never mention this as I don’t ever feel it’s a major setback. Of course I want it to return… I really hope that something connects soon so I can start repairing myself. I know this is currently happening at a very slow pace, I call it the behind the scenes repair. I would like some bigger steps forward now as it will be a yr 1st June.
I’m in England and there is very little support here.
You don’t know how wonderful to it is to find that someone else understands the alteration in taste! I always had a difficult time explaining it. But, it is important, affecting your nutritional health.
I understand your impatience with recovery. The most dramatic improvements take place in the first six months, like the doctors said. But, there are little improvements after that…ones you may not notice, until one day you realize the change.
I was so excited to see BEN’S FRIENDS, and to find there was a site for those with AVMs. There was nothing 24 years ago! I found one book in the library, written by a correspondent who was working in Central America when he began to experience signs and symptoms of an AVM. People like you and me (especially with cerebellar AVMs) did not survive. Try not to let depression rob you of the precious energy you need to make a life for yourself. Lifeisgood
Being nearly at the yr Mark I think I have missed the major six months point in recovery. I believe something as serious as a major brain bleed is going to take a bit longer, I do however believe it’s going to happen.
Its looking more like the 2 yr recovery for me ️ It’s just super slow. But quite right there are small improvements. How long till you got your independence back? I think I’m unlucky as to where my bleed was. Things are still improving though, which is a good sign
I seem to be missing my sweet taste buds which being female is a nightmare lol
Good in one way though as I no longer have sugar in tea/coffee lol
Thank you for taking the time to talk to me,
Where abouts was your avm?
What a surprise! I just woke up and here you are! I forgot about the time difference…seven hours, I believe?
I had a cerebellar AVM, like you, right? That is why so many our post-op issues are so similar. I was 39 years old. And, very fortunate that the AVM did not rupture while on vacation (36 hours earlier) and that I received rapid intervention. One of the nuns at my work would call me a “miracle”.
I spent 2 months in the hospital…recovery and rehab. I then spent 6 1/2 months at my parent’s house, finally returning home. By that time, I would walk to the coffee shop a couple of blocks away, sit, drink my tea, and watch other people, wishing I could do all the everyday things they were doing! Little by little, I became more mobile and independent…VERY SLOWLY. Generalized weakness and fatigue means I still have to plan my activities carefully.
That sugar taste bud thing is so interesting to me. I believe it happened because of some kind of trauma to the cranial nerve that serves the portion of the tongue responsible for sweetness…trauma from the edema of the bleed. It improved within the first year sometime.
I certainly wanted to know WHEN I would be “better”. It’s frustrating. I was a very active person. As you are approaching two years post-op, I can feel your frustration. I can tell you this: life will be different. Do not spend time waiting for the time when everything is “better”. Focus on what you CAN do now. Lifeisgood
I know things will get better, I just have to be patient (which is the part I struggle with) lol. I’m still contending with symptom demons… My main ones being my balance, independent walking and my vision plus I have an inner body sway. If these issues would clear up I think I could move forward. I too was an active person and the past year has been so disheartening not being able to be an independent individual. It’s been a yr for me as of June 1st. The bleed was in the cerebellum next to the brain stem. I think it’s an intracerebral bleed. I had stereotactic radio as it’s to deep to remove. It is however shrinking away, which shows the treatment works. Don’t help my current situation though…
I can’t wait for the symptoms to improve coz like I said before I can’t get on with everyday living with the current symptoms as they take all my energy ️
It’s nice to talk to you and comforting to know you had very similar or same symptoms
Lots of love,
Oh, alright, now I understand more. You had stereotactic treatment. And, it will be a year. That is helpful to my understanding. Stereotactics were not available then and would not have helped me anyway! (My AVM had ruptured.). I had not had any signs or symptoms. Our cerebellar AVMs are not technically intracerebral. You may hear them referred to as posterior fossa AVMs. “Intracerebral” refers to the much larger portion of the brain…the two, cerebral hemispheres.
The symptoms you describe are familiar to me, except vision issues. And I know how desperate you are to get on with life. I am glad you understand how all this takes its time.
In the meantime, enjoy the little things in life, don’t be afraid to give your body the sleep it needs, and be grateful that your treatment is working! Wonderful!
I’ll say “Happy Mother’s Day”! (I don’t know if the UK celebrates such a day.). I do not have children, but I consider myself a kind of mum to my 14 year-old kittycat!
Oh, it’s of benefit to me, too! It’s nice to share what was a very “alone” time for me in the past!
I know. It’s just great to see people supporting each other. Makes my weekend!