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AVM Survivors Network

Continual symptoms


#1

Hi,
I know everyone has a different experience in regards to their avm, though I feel mine is just ongoing. I had radio static treatment for mine back in January 2017 as the avm is in my cerebellum. It re bled in June 2017 which resulted in issuing me with impaired vision, no independent walking and severe balance issues… None of which have corrected. These three are my main concerns. I can’t live an independent life at the moment as I’m dealing with these three set backs. I have to be taken everywhere and once at destination I have to be link armed with someone to be able to walk. Its extremely frustrating being only 37 and living this way. I’m unable to make any adaptations to life as the brain has not yet settled. It’s hard to explain but it’s still not calm… I have had so many different sensations and it is like it Is still bouncing around. Has anyone else experienced this? Or something similar? I’ve cleared 15 months of it happening and there are still major concerns. On a more positive note I can see a extremely slow improvement with the vision which keeps me positive that something good is going to happen, when the time is right. I believe that if the eyes can correct it will then help my balance, which will then help my walking :walking_woman: I just can’t get over how slow recovery actually is… any advice on this please
Jo


#2

Jo

I’m sorry you’re having so difficult a time of it but it’s great to hear from you and it’s great to share.

The impression I get is that radiosurgery is the long, long haul and despite being apparently the least invasive method does definitely require the patience of Job.

I’ve had a different treatment from you and I have to say I am pretty well but I vary from day to day or week to week, wondering if I’m getting better over time or a little less well over time. It really is so difficult to tell. I think the truth is that we are learning a big lesson in patience and when we get through it, we might be better people to live with than when we rushed at the world with all the impatience of a thirty-something Harry Enfield character. I know you’re thirty-something, so maybe I should say a twenty-something character!

I think it’s a good positive thing about your sight. And I agree with you about it leading on to other improvements. I think keep working on doing the right things. Have you been given any advice on getting better? Any therapy to help you work on your balance? I believe that keeping moving and working towards being better is important physically and mentally.

Thinking of you,

Richard


#3

Thank you for your reply. The only advice I’m given is, it’s a slow process and it’s work in progress.


#4

Well, good luck. And good luck with the patience front, too!

I know we’ve got plenty of others here who’ve been through similar things and made it through: I’m sure you can, too. I’m sure it isn’t easy at all but you can do it!

Keep us posted. I’m happy to try to cheer you on whenever you need… I hope others will, too.

Lots of love,

Richard


#5

Hi Jo,
We sound like we’re in the same constantly rocking boat together. My avm is in my cerebellum as well, sitting a couple mm from the brain stem. I had radiation in June of this year; prior to that I had an emergency embolization done in February after an apparent rupture. The embolization was a failure in my opinion. I had a stroke during the procedure which left me with many deficits. Not to mention some of the onyx glue apparently migrated and cut off all blood supply to my right ear, leaving me permanently deaf in that ear. It’s not been easy to say the least.
I cannot walk without a cane and/or assistance because of balance issues. If I turn my head too fast my vision doubles and I am unable to focus. I haven’t driven since the embolization. Not certain if I will ever be able to.
I am leaps and bounds compared to where I was 8 months ago. So the improvement is there, it’s just happening at a snail’s pace. I can truly relate to your post, it’s as if I wrote it myself. I’m 43, and it feels like I’ve lost all independence. My senses are in overdrive too. Loud noises, bright lights, too many people talking at once—it’s all overwhelming.
Have you had a follow up scan yet to see if the radiation is working?

I completely know where you’re coming from—I’m there too.

Christina.


#6

Hi Christina,
Thank you for your reply. The few snippets of symptoms you write, I suffer with too.
I had my radio static surgery Jan 2017 and had a follow up March this year. They say the avm has made improvement on the shrinking front but I don’t know by how much. I am due another scan early next year. It is a very long frustrating journey, but I guess we both have to look at how far we have come in our given time frames. We are improving, so that’s a positive.
I haven’t driven either as yet but I hope I get the opportunity to again in the future. It’s not a priority of mine but it does come in handy.
I’m told by a neurologist, my recovery is exceptionally slow due to the bleed being so deep within the cerebellum. It’s the constant bouncing in the back of my head sensation which is a real struggle to contend with at the moment. Not sure if you suffer with this too?
Are you in the UK?

Jo


#7

My crani for a ruptured, cerebellar AVM was 25 years ago. Many neuro symptoms improved VERY SLOWLY over time, yet I still have that sudden dizziness if I bend over/ look upwards, and experience “sensory overload” as you describe. Focus on what you CAN do. My gait was was wide-based, weak and unsteady, too. Keep moving…walking. Sending you healing thoughts. :heart:


#8

Hey Jo,
Something you said really struck a chord with me “I just can’t get over how slow recovery actually is…” Ohh hell, ain’t that the truth. I had plans, I had goals I was aiming for and then ‘the wheels fell off my little red wagon’. I had the view that this damn thing was not going to stop me, so I pushed myself to recover. DOH, that didn’t work. I pushed myself too hard and not 3 months later I was back having further neurosurgery. That was in 2013 and since then I seem to have been on a bit of a seesaw with symptoms fluctuating each and everyday. I can never plan what I’m doing tomorrow as a may wake with symptoms from hell and end up spending the whole day in a quiet, darkened room, holding on to the bed so I don’t fall off.
It’s as if I’ve had a heavy night drinking alcohol, the room spins, my balance is all off. “Stop the world spinning, I want to get off”
I have not been a great one for accepting that ‘this is as good as it gets’ as many people have told me is the case. I do still try to push myself along, to do a bit more, but I have found that I can push myself today but then I pay for it tomorrow. Some people say ‘Hate’ is a very strong word, but I HATE this, this is not where I want to be. All those goals, all those plans have evaporated. SO, NOW WHAT??? For quite some time I had what I call the “Poor me’s” ie ‘Ohh poor me, I don’t deserve this’ I even tried to drown it out with alcohol and drugs. “Poor me, poor me, pour me another drink…” But tomorrow I woke up and reality was still here, so that didn’t work. I had to learn to move on.

In my ‘former’ life I was a teacher, I taught people with disabilities independent living skills, never dreaming that I’d end up being the one with the disability, but here I am. And as selfish as it may seem and as non-functional as I am, I can look back at many of my former clients and think “Well, at least I’m not in their shoes” because I know I so easily could be. I have learnt that I have to be thankful for small mercies. Sure, my ‘life plans’ have disintegrated, but at least I’m not sitting in a hospital ward talking gibberish to the wall. Another few mm’s to the left, another few mm’s to the right and I damn near could be.
So I, metaphorically, give myself a kick in the pants and do what I can whilst I can because tomorrow, who knows?

Now, I want to say here I’m not writing this to be rude, not at all. But I have seen and worked with some of the worst case scenarios. I know for me things are not good and they may never get better, but I also know that things could be a hell of a lot worse and for the fact that I’m not ‘there’, I truly have to be thankful.

Merl from the Moderator Support Team


#9

It’s so true ‘things could be a whole lot worse’ I feel I’m still healing, just very slowly. No one as yet has told me that I’m not still fixing. I’m 17 months on from my rebleed, and the back of my head is still not settled… I’m still not walking far independently (just a handful of steps) but each day is does improve. Those few steps get stronger and it’s that which I have to look upon as the progress not the fact I can’t walk more steps then I can. I practice everyday and just pray that my independent walking will return along with my balance. I believe it will with time, it’s just taking longer than I anticipated.

Thank you for your reply.

Jo


#10

Hey Jo,
Many years ago the theory was that 'this area of the brain controls that area of the body", this has now been proven incorrect. If that was the case and the blood supply had been disrupted then those bodily functions would cease. It has now been shown that, through a process called neuroplasticity, other regions of the brain can takeover those functions from the damaged areas. How long does that take? Well, that’s like asking “How long is a piece of string?” There are just so many variables and everybody’s recovery is different. I (stupidly) tried to compare my situation with others ie "If ‘John’ can do it 3 months, then so can I " and then give myself a hard time when I couldn’t recover the same. I know for myself, I am my own worst critic at times. Nobody is harder on me than me. It took someone outside of me (my wife) to sit me down and give me a good talking to. Slowly (and reluctantly) I’ve come to accept that she was right and I was wrong (although I don’t like to admit it lol).

Merl from the Moderator Support Team


#11

Thank you for sharing.


#12

Dear Cornishwaves,

How are things going? Merl is so right. And, all of the AVM survivors will tell you, progress will be incredibly slow. I was told that at six months, I had achieved about 95% of what I could expect. Boy, did I have the biggest and longest cry of my life! All I can say is, keep moving along, just at a deliberate and slower pace. Maybe even write out a list of short term, achievable goals. Simple things. As you meet them, place a check mark by them, or cross them out, so you can SEE your progress. (I am so glad your vision is improving.). Then, add one more thing to your list. This is one means I used to keep myself from becoming more depressed.

My life’s pursuits were altered quite a bit, as many others here will admit for themselves. I struggled to prove everyone (and MYSELF) wrong. Slowly (I hate to say) I began to surrender to my new life. I did not give up.

Life will be different, but as you uncover more of your interests and pursue them, you may see that life is good!
:heart: