Feel free to explain im nuts at this point too i actually gave myself a black eye in may
As for my grandchildren, and I'm sure you'll feel the same---whatever they want to call me is okay with me.
Hi Matt - Thanks for your post and I"m sure there are many other that can relate to you as well. It may very well be too early to know that your current state is going to be the one you are in forever. Perhaps we are all too hard on ourselves after surgery, or a bleed, but no matter how difficult the situation, we simply cannot lose hope. Keep fighting and I know everybody on this thread and on this site is fighting for you too :)
Hi Matt. I don't have much advice but I feel your pain :) For instance, one of the reasons I stopped coming to this site is because I felt there was little understanding and connection. Everyone seems to recover at a faster pace than me. It made me jealous and angry and bitter. That's not fair to other members so I had to step back and learn not to gauge my recovery by the speed or efficiency of others. I tried therapy but then my insurance said no more; not because of a lack in progress but because I reached my max. I can't afford private insurance so I rely on Medicare and Medicaid. I am 3 years post-bleed.
As for Ann Ning Learning How, I keep trying to read her blog but there is a lot going on with that blog and I get so confused by all the words, links and pictures. I just can't take it all in but she's always talking about it and posting about it, maybe you can find hope there where I was not able to LOL.
When I was in therapy, I met a woman who was hemiparetic like I still am. She had an aneurysm rupture during some sort of other surgery. But she is much better off than I am though our deficits were similar and our bleeds in similar areas. She can use her left now and I cannot. She said she took the Kill Bill approach and during any free moment would command movement from her hand. I get headaches when I try it lol but she swears it's what worked for her along with her therapy. I also heard hyperbaric chambers are a crock of crap. I'm unsure of that though. I plan on trying botox as soon as my neurologist starts accepting my insurance again (he's in negotiations). Other than that there's the whole try, try, and try again...and then try some more. Good luck, sir
Hi Matt,
Everyday was a new battle for me mentally and physically. I have to still deal with issueswith my vision which has begun to increase disability along with my communication skills. Outside of this I finally opened up to the domestic abuse and violence I suffered at the hands of my ex-wife and being separated from my kids. My journey is not an easy one unless I choose to make it easy myself. If you’d like to take just IM me. All the best,
B.
I Had A Stroke, Paralyzed My Left Side, Made A Full Recovery. Then Brain Surgery To Remove Avm, Only To Find Out I Had Another Avm And A aneuYsm They Did The Coil And Then Treated The Avm. I feeL Good.
Matt, your feelings are completely understandable. And there is a place for you in my heart.
Indeed, your post “Is there any hope?” moved me, and I hope you will not mind that I mention you by name — along with my feelings of high regard for you — in a long essay about AMVs that I posted today on Facebook. It’s publicly-viewable and currently occupies the top spot in my profile’s Timeline; see:
https://www.facebook.com/peter.allemano
I don’t know if post-hemorrhage sadness ever disappears completely for any of us. Eleven years after my own hemorrhage — and with all the wonderful progress I’ve made — life continues to have aspects that are, simply put, difficult.
But my efforts at rehabilitation are ongoing. I recently went to a new physiatrist for an evaluation. Although he told me what I have already reluctantly concluded myself — that my gait will never be normal again — he nevertheless believes that a new course of physical therapy would be a helpful adjunct to my regular lower-body training sessions with my longtime personal trainer. So he wrote me a prescription and sent me on my way. I have just completed my third week of twice-weekly appointments at Neurosport Physical Therapy:
http://www.neurosportphysicaltherapy.com
Happily, my medical insurance will provide complete coverage till the end of the year. I find this schedule exhausting, but it’s clearly proving helpful.
Soon, I also intend to begin a series of neurofeedback sessions. I had a series of treatments in this modality (among other things) last year, when I went on a “medical tourism” trip to the Whitaker Wellness Institute in Newport Beach, California; see:
http://www.whitakerwellness.com
At last, I’m following up on neurofeedback here in New York. Neurofeedback is not covered by medical insurance, so I’ve had to wait awhile on this.
So long for now, Matt!
Peter
Congrats on more therapy! It seems often hard to get more once your past the initial acute period, i guess thats insurance policy but what is neurofeedback and how does it work? I think ive heard it mentioned somewhere
Thats exactly how it was for me, most posts on this site either made me feel jealous or were about surgery and i had no advice becuz i was comatose during my first craniotomy and my avm wasembolized rather than removed and i disagree about hyperbaric being a crock but i can understand why some would think that because theyre promised a miracle and dont get it but there are legitimate studies, theres just only so much it can do, i just think my embolization is rendering it ineffective or i have necrosis of the brain which it cannot help with but im still happy i came here becuz its showed me a whole different variation of therapy thats proving to be much better than traditional therapy i sometimes am left teeth chattering, shaking uncontrollably after a workout and i scream in pain during but i love it cuz its wat i need, they went too easy on me in pt
Hi Matt!
Never lose hope. I have survived 4 strokes and I can really understand what you are going through. I have received the last rights more than once but thank God I am ok, there are still many things I have to struggle with but I’m an optimistic and have a lot to be grateful for. Today in church I prayed for you. If you want add me as a friend and we can talk through the webpage’s mail. I will be there to help you in any way I can.
Visualization and NLP really helped me, I am catholic so I always include God in all my issues; use whatever you believe in. I will keep you in my prayers and if you want to contact me please do so, I would love to be there for you.
God bless you
Hi Matt, It is almost 12 years since my rupture and craniotomy. I was given the same old story that I would not improve past 2 years after my surgery… I can tell you that it’s not true. I continue to improve to this day… Everyone IS different and although I am not where I was when my rupture and craniotomy happened, I know that I will continue to improve as long as I push myself 
Just hang in there!!! Keep on trying and keep on pushing yourself to believe in yourself
Dear Matt,
What you’ve written about insurance coverage for PT is generally true. Indeed, at a certain point in time, post-brain-surgery, I too was refused further coverage. My physiatrist at Rusk Institute told me, however, that I could conceivably wait a few years and eventually get approval again, under a new diagnosis.
LOL: I wound up waiting a decade to try to get back into PT! Why so long? I felt content in the meantime with the work I was doing in my regular appointments with a personal trainer. These are not covered by insurance, but if I plan my budget carefully then I can afford them — because I pay in advance for a series of 20 sessions and thereby receive a discounted rate.
This year, my employer switched to a different insurance carrier — with an altogether new plan — and so having undergone PT before is not even an issue for me now. In addition, it turns out that the new plan is unusually generous in the realm of PT. My new physiatrist’s prescription was for 2 – 3 weeks because (I presume) he figured that was all for which I’d be able to get coverage. But after the secretary at the clinic received a response to the paper work she submitted on my behalf, she reported to me — in astonishment — that my insurance carrier had approved “unlimited visits” through the end of the year. I am a very fortunate bloke indeed!
In response to your question about neurofeedback, the Whitaker Wellness Institute’s Web site provides an introductory overview here:
http://www.whitakerwellness.com/therapies/neurofeedback/
I undertook a course of neurofeedback on my “medical tourism” trip last year for whatever help it might provide me in general brain health. It is expensive: $120/session at Whitaker . . . but much higher here in New York. Fortunately, I was finally able to find a certified technician here charging only $5 more/session. In addition to the treatment sessions, neurofeedback patients typically undergo, at various stages of treatment, a quantitative electroencephalograph (QEEG) evaluation that helps determine exactly what kind of treatment is appropriate. My technician in California has a great sense of humor, and you might get a chuckle out of this snapshot of us, as I’m being prepared for a QEEG:
https://www.facebook.com/photo.php?fbid=10201598495157493&l=9ca8efe2f8
Though it doesn’t say so on the Web site, some severely disabled people apparently can be helped via neurofeedback. One of my fellow neurofeedback patients was a teenage girl in a wheel chair who’d been badly smashed up in a car crash.
In closing, Matt, let me tell you that I feel deeply impressed by your openness in this forum and your ability to convey your thoughts and feelings to us — with a degree of insight and clarity that is often absent in folks twice your age! Your essay “Is there any hope?” is exquisite. I consider it to be a privilege to be allowed to know about your anguish as well as your hope.
Peter
Hi Matt, I really hope you find the strength to stay positive, Reading your story moved me and I really hope more than anything that you make progress on your recovery, Wishing you health and happiness, Take care !.
True , getting heart rate up (in moderation) and breath healthy really helps to recover little bit faster, and noticeable
Hi Matt,
I understand how difficult the situation you find yourself in must be. My A.V.M. was in my spinal cord which of course is a different set of circumstances. I would like you to do your very best at the start of each day to firstly appreciate and be thankful for the things that you are able to do.
Embrace the things in you life which bring you a healthy happiness. Set specific realistic goals for your self and meet those goals. Challenge yourself and when you succeed celebrate your accomplishments. If your not a person of faith I might suggest you investigate the possibility of becoming involved with a church. I'm sorry your dealing with all of this, it doesn't seem fair I realize. Matt, show everyone that you have the strength and will to improve a little bit each day.
Best of Luck!
-Ken
Matt, you have received a lot of comments, really good ones too. I will add my experience. It sounds like your physical function was hit harder than your cognitive function. We are in the same boat, you and I, in that sense. When I had my hemorrhage, my whole right side was gone. It is frustrating. It can be VERY frustrating. I did cry a lot. And I encourage to cry when you feel like crying. I encourage you to scream when you feel like screaming. And when that is done, think of the wonderful things you still DO have. For one you are alive. Cognitively you are aware. Those are two really huge things in the grand scheme of things. I learned to not look at life in terms of what I can't do or can't do anymore, but to look at it in terms of what I CAN do and what progress, as little as may be, I made. For example,at first I was diagnosed with aphasia (having a hard time thinking of words, to make it short and simple). In speech therapy they would ask me to list all the animals I could think of, and I could barely get past three. When I got to 5, I celebrated it. I celebrated it like I just won the world championship. When I got to 7, I celebrated it again. Basically, celebrate all your accomplishments even if they might seem small to an outsider; because for us, those are BIG accomplishments. Also, I will tell you one thing that my physical therapist told me once when I asked him when I would move my ankle: he said "its not moving now, but keep on trying, every day, try to move it, and maybe some day it will move". Basically, there is such a thing as Neuroplasticity. "For example, if one hemisphere of the brain is damaged, the intact hemisphere may take over some of its functions. The brain compensates for damage in effect by reorganizing and forming new connections between intact neurons. In order to reconnect, the neurons need to be stimulated through activity." And that is why you cannot, and must not give up. There is such a thing as neuroplasticity, but you have to stimulate it by trying to do the things that you cannot do. Try to move your arms every day. It is hard, yes, but try. Try to speak every day, It is hard, but try. I did just that, I tried to move my ankle. Even though it did not come back completely, there is now a little movement! So neuroplasticity is a real thing! But you cannot give up! Matt, what happened to us, what happened to you, is a challenge that we must face and win. We can only win if we never give up! You ARE going to get better. That is a fact. How much better? I don't know. Nobody knows. But as your brain heals and neuroplasticity kicks in, you will notice progress. Cheer up Matt! and do your exercises at home! If you don't have exercises to do, ask the therapists who treated you to give you a home program for strength and spasticity. All the best! Feel free to reach out!
Thanks any ideas for cardio or core exercises that i can do being so limited in mobility, i really only have my right arm right now
I too felt this same way 3 years after gamma-knife treatment because I was so sure it would fully obliterate my AVM. I am now 13 years out. Hang in there, things can still improve for you. I remember a neuro exam 6 years later where the docs were impressed with small improvements.
Stroke of Insight is a good book, I read that one too.
I just had my surgery 2 weeks ago. The time has flown by I thought it was just 4 days ago. I can walk with a walker. I haven’t had a bowel movement in about 10 days though and I’m terrified of having to get some kind of colonic surgery. Has anyone heard of this? My first doc appointment is on the 3rd. I’m so glad to reading these similar stories. I am only 21 years old and a newly wed. I am constantly in pain yet getting better eberyday. I am feeling very Woah is me here lately. It’s so hard.
Kala,
I wouldn't worry too much about the bathroom stuff - one of the side effects of opiates is constipation, and I mean serious constipation. It's pretty common after major surgery because they tend to give you pain meds on demand (for a very good reason!). Chances are good they'll watch you closely and do something a lot less drastic than surgery to get things moving properly again. Make sure you're getting lots of fluids and eat things with fiber in them, that may help the process along.
Ask your doctor or a nurse about it and see what they have to say.
I was in neurosurgical ICU for my first wedding anniversary, so I can empathize with you on not having planned to spend your time in the hospital after just being married and not having planned to be spending your time recovering.
You have every right to feel down; you just went through something very traumatic and not at all fun. Be patient and understanding with yourself, and when you really start to feel bad, take a couple deep breaths and tell yourself that you got through it, you're recovering, and it's getting better.
When I woke up after surgery I could not move my left arm or leg at all; yet 6 months after completing rehab I was in the upper peninsula of Michigan hiking in the state forest there with my family. While I was recovering it sometimes seemed like everything hurt and I was never going to get better. But it did get better. Better enough that I went back to my career as a dancer.
Don't give up. It gets better! Let us know how things go for you; we can offer some support when things feel like they're not getting better fast enough.