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AVM Survivors Network

Starting to get frustrated with symptoms


#1

Hi all,
Yes I return with the same concerns. My symptoms are really getting to me… I still have an unsettled brain which is starting to really upset me. I describe it these days as an air bubble within a spirit level. If it goes off Center so do I. It controls my movement. I can walk but not independently, my vision is still impaired and due to the brain my balance is bad. I’m 17 months on now and not having my independence is really getting to me… I’ve not been told this will never happen, I just get told ‘it takes time’
I feel that if I could walk about I could adapt around my other symptoms. Has anyone else experienced anything similar? I know there will be no one the same but there may be some one who has experienced something similar. Does the brain really take this long to settle? I try to stay positive with it but it does ware you down. For 17 months I’ve not been able to come and go as I please… It’s hard, especially when I love the outdoors. I keep telling myself that I’m strong enough to get through this as hard as it is… sometimes I think I’m just being naive


#2

Hi. I think it just takes at least twice as long as anyone – even the most patient, forgiving and bounteous person on the planet – should have patience for. I’ve sent you a link separately that I hope is helpful. I think you’re just being normal :slight_smile:

lots of love,

Richard


#3

Thank you. I will have a watch :blush:


#4

Hey Cornishwaves,
“My symptoms are really getting to me…” Ohh boy, do I understand this statement? All too well. I have had the ‘joy’ of enduring a few neurosurgeries (6 so far) and no two recoveries have been the same, and my last surgery in 2013 really screwed me over bigtime. Some days I can sit on the side of the bed, all woozy, too scared to stand up for the fear of falling over. Some days I can get up, get going and all seems OK. But then part way through the day I start to get symptoms ie visual disturbances, balance issues, odd sensations (tingles, numbness, etc). I can never tell what is going to happen, when it’s going to happen or how long its going to go on for. Me and ‘frustration’ have become common enemies. I HATE IT.

I’ve now been told that this is about as good as it’s going to get, which is really disappointing. But I’m still not willing to fully accept it all and I do still try to do what I can, when I can. I have learnt that my body gives me signs, they start small, but if I ignore them, they increase. And if I ignore them further I can end up bedbound for days, so don’t be doing that.

17 months can seem a long time, but to be honest, it’s not, well, not when it comes to the brain. Our brains are the most complex organ in the body and although some dr’s make out that they know it all, they don’t. It is not like a broken bone, where 8weeks after the break, the bone has healed. No two brains are the same, so to be saying ‘after ‘x’ weeks, its all healed’ is impossible.

All we can really do is manage the best way we can. Personally, I had an unreasonable expectation of myself. My previous surgeries I pushed myself to recover from and I did …eventually. But after this last one I pushed, but my body pushed back, so I pushed HARDER (too hard) and did myself more harm than good.

I’ve had to come to (semi) accept that I have my limitations and I have to manage those limitations as best I can. Am I happy about this? HELL NO. But the reality is I really have no choice in the matter. I do not think you are naïve, not at all, we all hope, pray, beg that things will get back to ‘normal’, but the reality is that for some of us it won’t and we have to learn to accept that and that is not easy. Anybody who tells you it is easy has never been here.

Merl from the Moderator Support Team


#5

Cornishwaves,

I second the opinon that 17 months really isn’t that long. I know it feels like forever right now, but in reality it’s been almost no time at all. I would say the best thing you can do for yourself is stop tracking time since it all happened (almost like a before and after) and start living each day on its own. You’re going to have to figure out a way to stop comparing now to then. Like it or not, you’re a different person now.

As a random example, I badly broke my ankle and fractured my leg in two places. I was advised the standard 8-12 weeks for healing. Three years later (that is, 156 weeks) I was still in physical therapy and using a cane to walk. Nothing dramatic had happened, that’s just the way it was. But that was also 20 years ago. I was fitted for orthodic inserts, I gradually gave up the cane, I had to get rid of all my shoes and get ones that fit the inserts (which was more traumatic than the injury!), but I adjusted my expectations, and I’ve been fine ever since. Today, you would never know what I went through.

These things simply take time. Taking each day on its own should really help you manage what’s going on. My best advice is for you to stop keeping track, just deal with each day and each thing as it happens.

azurelle


#6

I can relate to your statement that “My symptoms are really getting to me…” I have been afflicted in the whole right side of my body and what I did to cope with my symptoms is I found a way around it. For example, My right arm started shaking violently to the point to where I could no longer write. I had to force my left hand to be my dominant hand. I’m sure your symptoms are worse than mine but ask yourself this question, how can I cope or steer around my symptoms?


#7

Thank you. 6 surgery’s is a lot. Due to the location of mine I was only able to have gamma knife. It was a long sitting though… nearly 3 hours. I only ever read of 20 minutes. I have the same symptoms as you listed and boy in the early days I couldn’t sit on the edge of my bed either. That symptom I’m pleased to say has calmed right down. I’m hoping and praying that it will all calm down so I can start adapting to live with any defects which I may have encountered. I remind myself of how much I have achieved in recovery in my first year so if I can achieve the same again next year, I should be doing ok. Hears to hoping anyway…
Thank you again for sharing.

Jo


#8

Thank you for your reply. I’m just frustrated with this I think. I’m not at a point in recovery where I can adapt around my symptoms. I can’t even walk independently at the moment, even with an aid it’s difficult as I sway so much. My balance seems to control my every movement. On a positive note as difficult as it is for me, I can see minor improvement. I just pray that this improvement continues.

Jo


#9

For me it’s my left side. Luckily I’m not left handed so not my dominant side. I do try and use it as much as I did before as hard as it is sometimes. It does have a mind of its own and I don’t trust it.


#10

“Here’s to hoping anyway…” And that is the best attitude to take IMO and I feel that that has been part of my lack of acceptance. For the first couple of years my improvements went ahead in leaps and bounds, sure there was backward steps especially when I pushed myself too hard (I am often saying ‘Self inflicted, no sympathy’) but those leaps and bounds have slowed to a crawl now. I won’t say they have stopped, but the improvements have certainly reduced. I do still, today, push myself along when I probably shouldn’t, but to simply give up just isn’t an option.

In the initial stages the medicos wanted me to keep a pain diary for 4 weeks, I actually kept it for 6 months. I did this for 2 reasons, the first being so that I could keep a track of symptoms vs activity. But the 2nd was to show the medicos that I hadn’t just given up or that I didn’t simply lack motivation, both of which the medicos pointed out as the reasons for my continuing symptoms. The medicos had a real attitude problem “Ohh don’t blame us, it must be YOU…”, motivation, laziness and pain tolerance were favourites of their’s. Telling me I had a low pain tolerance annoyed me to the extreme. I do have a low tolerance, a low tolerance to damn know-it-all dr’s. If they knew it all I wouldn’t have required multiple surgeries, they would have got it right the first time round. And all of this just adds to my frustration, so I ‘try’ not to go there. We have to manage all of this for ourselves, not them.
Hope is about all we have.

Merl from the Moderator Support Team


#11

Cornishwaves, as hard as it is try to remain positive about your life and your abilities. I hope you typed this post if so it appears you have a fine mind and control of your hands and are able to see clearly. There is a lot of life that can be had from just these three abilities and no more. Our son goes in for his 6mo. checkup mri after Gamma Knife. He had his first treatment at 6 yrs of age and has been dealing with symptoms since birth. He is 37 and his deficits are much worse and we are also praying for improvement and the patience to wait on it.


#12

FHi,
Thank you for your post. Your son was very young in regards to his first treatment. Are they monitoring him with the mri check up? Where abouts was his AVM. Out of the 3 abilities you mentioned, I struggle with my sight. It has improved but it’s not correct yet. I keep my prayers up that it will improve. I do find my abilities have improved but only on a very minor level. I put the practice in so I’m hoping it all pays off in the long run. I can’t walk independently yet but I can walk assisted, so my walking is there. My balance is pretty bad but has calmed down so I’m hoping I can take the lead on this. I know all will never be the same as before but when you have been without for so long you are happy with any improvements… I just truly want my walking back. I love the outdoors and have been trapped this year.
Thank you again for writing.
Jo


#13

Yes he was about six and had grama knife then it is a very large AVM setting on top of brain stem which is causing the deficits. Drs. told us not to do anything for thirty years but a new nero thought another treatment might help and yes that is what the mri is for this week to start monitoring recent treatment. Cody lives at home with us and is wheel chair bound, has visual problems as well as fine motor, the combination makes it impossible for him to do much of anything. He has a positive attitude most of the time and has inspired a circle of friends. We will add you to our prayers and hope God will continue bless you through this trial.

Ron


#14

Thank you :pray:I wish your son all the best… He is stronger than he knows, did he struggle with an unsettled brain for awhile? Mine is still sending me bouncing sensations right in the area of concern. It has calmed though but not gone away as yet.


#15

Hi Cornish, I like your positive attitude in the face of some pretty negative input from docs. That’s a big accomplishment right there.
You don’t seem to have a “victim” mentality. I struggle with that because I know some of my emotional/memory issues are related to my AVM ordeals. At the same time I never want to make excuses or give myself a “free pass” to be lazy. It’s a tough balancing act we’re working on. Keep up the good work, Greg


#16

Just found in my spam no brain thought process stayed normal until last year or so. I don’t understand exactly the unsettled brain and bouncing sensations. Keep on keeping on and we wish you the best also and Merry Christmas [ hopefully]