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So guys they have finally found what caused my bleed an avm! Just come back from my angigram! very small apparently and the reason they could not see it before was because of the bleed and blood clot masking it. So I finally have an answer and something else to worry about! It was 100% worth going for follow up angigram even though they r not nice and I have a partial sceizure I now have answers and can move forward with treatment. Love to you all x x

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Great news Bev!!! The not knowing is what drives you nuts!

Good luck with the gamma knife I have read a bit about that as I have a brain tumor and it small but next to my brain stem. I have not moved forward with hwo they remove it as I was first told it may never grow and never cause any problems until Dec. when I went for a follow up and he said he could remove it now before it grows. I was stunned as I really had put that tumor on the shelf of things to not worry about.

I am glad you have relief & knowledge of knowing what was happening to your brain.

maryb:-D

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Thanks lisa. Now I am home and have had time to think about it I feel sick to the stomach and just want the damm thing out of my head. If I survive all this I will be so much stronger! What a day I feel lost and lonley and those horrid partial sceizure s scary you get a strong aura thats like strong deja vu over and over and ears go all echoy and you sweat at one point my pulse went to 165 I thought I was a gonner and I have had a horrid uneasy feeling since. I hope your ok chick. I didn think I could feel any ****** worse x

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Or thanks lisa I just dont know how much more I can take am trying to be positive but it seems to be one blow after another and I too am struggling with my son he is 3 in a week. Hospitals in general give me an awful uneasy feeling too and being back there today seeing some of the same faces I saw last year with bleed just freaked me out same smells and all sorts! This whole thing is effecting me more than I thought! I am crying now and just so so fed up. I know I have to be strong for jack but god its so hard sometimes. You seem more positive there days but I am sure you have felt like this at times I just feel so alone! Very very sad x x

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You are bound to be anxious, scared and upset, what you have been told today must have been a huge shock and I for one would feel exactly the same. Have they given you any clue of recovery time etc from the op? I hope your other half is giving you lots of loving cuddles this evening after such a horrible day. I hope somebody comes along with experience in this who.can reassure you a little.

I do still feel scared and anxious some days but I'm trying to not let it take over me like it was earlier on but any bad pain and I start to panic. Xx

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Thanks lisa just canttame the uneasy weird feeling at the pit of my stomach. Probs shattered to after a long day at. struggling to relax. Andy popped to shop he is upset too. Oh crikey ! I think I would from seeing a neuro psyc now cos this is a bit much but at least I know whats sat in my head just bit unsafe at mo while they plan what to do with it. I am so glad your pushing through and trying to get on x x

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Bev,

You are bound to be scared & have a zillion other emotions....but you at least have an answer and they do amazing work nowadays. You are a strong young mother and God is testing your will. I ask myself how someone with young children can deal with this but maybe it is the distraction children can be that is the help you need in the long run. Not that anything can be said to make it any easier.

I sometimes think we deserve a KNOCK OUT pill just so we do not have to think, worry or stress for a day. Just a pill to let us sleep and wake up refreshed. Kind of like the drug they give you when you have a colonoscopy - you wake up and feel so refreshed!

When my surgeon said "he could remove that tumor now" I tell you I have done nothing but think about it every day. I do not know if it is better to do it now b4 it grows, leave it alone and take the chance it may never grow or just stick my head in the sand. If it were on my foot I would say take it now but? It is so hard to constantly think about surgery but when you look in this room you can see so many strong people that have dealt with so much and come through so well. Along with deeper understanding for others & the wisdom we gain may be the prize? I wish it were a face life or a trip to Hawaii but???

I do know at almost 54 years old the rough times in my life have taught me more than any other education possible. I have been able to later draw on that "wisdom" and make a difference in others life. It is when we pay attention to the issue at hand that we gain such insight. You never know someday you may be the advocate for others in the same situation or doing a day care to help people with illnesses. You just never know what this will lead you to do.

I am certainly not talking about "Everything happens for a reason & that reason is you make stupid & bad decisions". Because with wisdom and age you take those people and toss their drama out of your life when they repeat bad choices. You come away with learning how to cope, just start by putting one foot in front of another for now, whatever it takes to get through the day and you do that until it gets better for you. IN turn you will help others with your courage.

Maryb

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Bev. Scary day for you but I hope one you can look back on as when you got some answers. Having an Angio is a nerve jangler anyway, don't underestimate what your body went through today, take some extra care of yourself with extra hugs, water and plenty of rest is in order over the next few days. You did well!

I know a little bit of how you feel I think. The euphoria and initial healing after my SAH was dashed when I had to return and have surgery to place a VP shunt.

Smething like that Is hard when you just want to move on and then something comes along and you get dragged a little backwards but its important they deal with your AVM just like I needed to have the shunt. Actually only then can you truly move forward. And you will. Sending you hugs.

Hope you've had some chocolate!

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Or ladies from the bottom of my heart thank you for your kind words. I have cried lots today and your right those angigrams take it out of you but must be done. Onwards and upwards I now know what I am facing. And mary your right one day I will have so much knowledge and will be so much stronger and will use this to help others. Thanks again your all angels x x

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Hi Bev,

Just came online and read your news and just wanted to say how sorry I am to hear about the avm. It will obviously be an upsetting time for you - I remember how upset I was when I got the letter saying I had to go in for re-coiling - I could have filled the bath with tears! However, time doesn't stand still and you too will, in due course, be able to feel the eurphoria that it has been treated and life will become more relaxing (not that it ever is that relaxing with kids!)

Take care,

Sarah

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Thanks sarah it was such an odd day yesterday. I went to my cbt and she was just saying that its good they found it no more stressing my head out wondering if what why I know now! The consultant said that in the year its bled it has a higher risk of re bleed well I am nearly a year up so then it goes back to 4% risk of re bleed what ever the risk it needs dealing with but now they r on its case and anymore headaches like before I know ill be straight in the hospital. I feel safer than the general public who have never had their head checked cos anyone can have an avm or anyrusm etc but we all know we have ours and have or r dealing with them and survived the initial bleed. So yeah defs makes you stronger I believe x x

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