Hi all. First off I take.my hats off for all the brave people ons this page. You have no idea how much it means to hear other peoples stories it gives hope. I was diagnosed with a grade 3 avm lesion a month ago. After doing all the scans and mri I went to see the oncologist yesterday. Told me yesterday ohh dont worry ita not life-threatening (greatful for that) and found by accident but you can get the radiation done. Sad part is that my medical aid doesnt cover it and have to fork out R200k. Okay so ask for a referral to our goverment hospital, sorry their machine is broken and will only be fixed in 6 months. So I was given a choice leave it or pay the money. So I decided to leave it. Told the receptionist I dont have time for this anymore. The worrying about this thing in my head comsumes me and affects my work. I dont have time to be given the run around with doctorsand makes me sad that our countries private and public health system just doesnt care. Last night doctor phones me surprised that I decided to leave everything but will write a motivational letter to the medical aid to help. I am very greatful but sad at the same time why not have done this from the start.Anyhow again its a waiting game but still going to follow by dreams and move to the UK pretty soon. Have an awesome day guys
So sorry for your situation. I am not sure what R200k is, but with all the money that has gone into my treatments I am sure it is a great amount.
Thank you Melissa. In south africa that is alot of money - in US alomts $15000.I hope that your treatments has been going well. I hope that you atleast get assistance from the goverment for your bills?
I’m very sorry to hear about your situation. Does this mean that in 6 months the machine will be working and you will be able to have the radiation treatment? Have you asked for a referral to another public hospital that may have working facilities? I hope you will find one that will provide the treatment through government funding and that your doctors letter will help.
If it helps, I have found that taking on the perspective that life is short, worrying about it right now is wasting what life I have now - If something were to happen I would regret the time I had spent worrying before. I try to focus on what I am able to change currently and not on what I have no power over.
I am not saying don’t try to get treatment, ofcourse it is imperative to seek treatment if it is rated as treatment-advised. But what I’m saying is try to not focus on risks in the mean time. You have a higher risk of dying from being run over by a car than your AVM rupturing today.
With me for example. Before my embolisation I had so much worry about it going wrong and losing half of my vision in both eyes. I did infact end up having a stroke during my op and losing a large proportion of this vision. And I have been told the remaining AVM covers what sight I have left of my RHS visual field in both eyes - the important central vision. Despite this since my stroke, the only thing I regret is all the worry beforehand. I think the worry was worse than actually dealing and living with this vision loss. I dont focus on the risk of losing more vision and essentially becoming legally blind because it is out of my control right now. I’d rather focus on now and on things I can change - for example I have been dieting and working out (after being approved to work out). I didn’t like my weight gain and its something I have control to change which empowers me. So maybe you can think of something you have control over to change to focus on making you feel empowered too (and take your mind off what you cant change).
I hope this helps,
Sending floods of hugs and positive energy,
Hi Corrine. I am sorry to hear with everything that has happened to you and I wish you all the best with the recovery. I am truly blessed that they picked it up by accident and have had no stroke etc. I was also told that apparently the new studies that was done is said to leave the AVM until it bleeds…umm okay. I was also informed that alot of people has this and that they live their whole life with this and doesnt even know it. Unfortunately the referral that I wanted was to the best public hospital that we have. In our country we have a very poor public health system and even if I upgrade my medical aid I still have to wait a year. The chances of me starting immediately if the machine is fixed is not possible as there are patients that is on the waiting list way way before me. What got me yesterday is the mentality of the private sector doctors. Your are money to them and thats it. They prey on your emotions and I completely lost it in his office. My mother was with me and I just told her thats it I am no longer allowing this thing to rule my life. I woke up this morning feeling like my old self even started drawing again. I was told by both the neurologist and oncologist that because I have had no symptomes that I am all clear so I took that and decided now I can carry on with my life. This page has also helped me alot. You are truly inspirational Corrine!
Have a wonderful day further and lots and lots of huggs
I have a job and make pretty good money. I have insurance also. Pays a major part of it. If I didn’t work and have insurance I don’t what I would do. When I was younger I would never in a million years think anything like this could happen.
From what I’ve seen of people in the UK atleast, 1 year to get treatment on the NHS (public health system) is not unusual. I would say although waiting sucks, since you have had no symptoms hopefully this implies your AVM is pretty stable (though I’m not a medic and I haven’t seen your scan results so this is only my uneducated take on things). I would still push to be treated and for government medical aid and upgrade my medical aid but as you said not let worry take over my life. Yes there are people with AVMs all their life and don’t have any problems, but there is risks with AVMs. It is imperative to treat the AVM to eliminate the risk of a rupture if it is possible where the risk of a rupture outweigh treatment.
I am sorry you have had such an awful experience with the specialists. You are right that many medics don’t remember that they are talking to real human beings to show empathy.
Unfortunately many of us have had this experience, for me for example, when my hair all fell I had my neurosurgeons registrar tell me matter of factly that my hair will never grow back. She showed no empathy or compassion. This turned out to be wrong infact and I was told by one of my neuro-radiologists it will return and it was caused by over-radiation. When I next heard from the regestrar she informed me matter of factly that she was wrong, no sorry not apologetic at all for causing me so much worry. The point in this story is that you are not alone.
Sending big hugs, welcome to keep posting here whenever you need support, to vent or ask questions - we are all here for you!
Quite right! They do. I think you’ve seen a first class example of someone trying to make a quick buck off you and you’re absolutely right to move on.
As Corrine says, get yourself on the list. When you get to the UK, you’ll have to start back on a list but actually, if it was an incidental finding or just giving you headaches for the moment, don’t panic and just bide your time. You’ll get there.
If you start to get other symptoms, especially if they are in any way significant, go straight back to either hospital for a reassessment. If they think you’ve got something more active going on, you should move up the priority queue. If you get anything significant, go to the emergency room.
You might find that having high blood pressure contributes to your headaches. I was advised to cut out caffeine/coffee, chocolate, alcohol, cigarettes and any other stimulant. It helped me feel better, until my AVM developed further.
Meanwhile, focus on life. Don’t miss out.
@corrine and @DickD Thank you for your encouraging words. I received confirmation yesterday that the motivation letter has been send in to the medical aid so now just to wait. I use to do weight training but was told to stop but now I am swimming which helps to reduce stress and keep met fit. There are some bad habits that I have to stop like smoking and have already started cutting down. Its nice to chat with people that has gone through the same thing. I have a wonderful support system but they dont completely get it. I have worked hard to get where I am and I am in finance so my brain is precious to me. It was a bitter sweet day when I got my diagnosis because on the same day I found out I have my degree in accounting. If the motivation letter falls through I am prepared to wait in the UK for treatment and I think I will get better treatment that side than here. Luckily I am not a sufferer of high blood pressure so I am good in that department. I am looking forward to making the move to the UK, new opportunities and I get to travel but will miss my family in South Africa but they understand why we want to go.
I want to thank you both again for the kind words and motivation you have no idea what it means to me. You guys are awesome and never forget it!!!
Have a wonderful weekend and will let you know if I receive any news.
Lots of love and hugs
You’re welcome. The advice on leaving off the weights but keeping moving is good advice. Some people go ages before getting a diagnosis, so you’re doing well there.
Hidden illnesses like ours are not always understood well, so don’t be put off by family or friends not getting how you feel. I think anyone with a hidden illness gets the same misunderstanding, so you may find allies in others with different conditions, not just AVM people.