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AVM Survivors Network

Almost nowhere to go...!


#1

I’m starting to feel really down, have been referred to a neurosurgeon, by a neurologist that has been treating me. Phoned the John Radcliffe to find out when the appointment was, as I had waited a little while. To be told they have nothing on the system. Despite having a letter of referral which also went to my GP. To top it all off, despite being diagnosed with an AVM and ANEURYSM, which are inoperable My GP thinks a lot of my symptoms I experience, are a result of my diagnoses, by knowing it’s there. I suffer badly with head aches, dizziness, nausea, memory problems and light sensitive eyes and have had seizures. I don’t feel I’m getting the proper help. I have rehab team coming this afternoon, but don’t know how to cope with it all. Why don’t GP’s seem to know anything about AVM’s…
Sorry guys needed to have my little rant, Good luck to all.
Mick…


#2

I don’t think just “knowing” that they are there make you have those symptoms. Yeah I agree GP knows absolutely nothing about AVMs.


#3

Thanks for the reply Melissa…
Mick


#4

Mick,

Tell me how slow things are going and we can probably play Top Trumps! How long did you “wait a little for”? I suspect you need to get into the groove of how long it takes to get anything done on the NHS. I’m on your side, honestly.

You may be being a bit optimistic about how promptly things will move on. Albeit you know that you have a stroke risk from either the AVM or the aneurysm, I guess it doesn’t mean that either will blow immediately (or, actually for quite a long time. Years?). So, the NHS will deal with you in that light.

My story is here: My Anniversary in two parts. 1. the waiting part for a decent diagnosis, Sep to Nov 2016 (but it started in Sep 2015 or April 2016, depending on when you start counting) and then 2. Feeling less well up to actually having an embolization, Jan to Apr 2017.

I’m not sure if it is better to chase NHS appointments every step of the way because it can be remarkably slow and depressing. I think the main thing is to realise that there are people who are in danger from a bleed that is happening now who the neuros are focussing on today and a “risk” is just a risk and goes lower on the scale.

So… be your own advocate. When you feel poorly or things change, tell the doctor. If anything becomes sudden or severely different, go straight to A&E. (Do not pass “Go”. Do not collect £200.). Have a look at my waiting journey and see how effective, or otherwise, nagging GP or hospital was. I would say the GP I saw in March was the person who finally got me seen. She plotted over my head with her stethoscope and we determined what we thought was a much larger area of bruit on the back of my head. She was the best of my GPs and clearly decided to find out about AVMs and get me dealt with appropriately.

If you’re in a practice of several GPs, see if you can see one of the other doctors. I randomly chose each time till I found one that was interested to really poke the hospital. But, it may well be that you still rank much lower than a bunch of other people going through your local neurosurgery service.

I would say that not all of it is “in the mind” (obviously) but to the extent that you can maintain a positive outlook, I do believe you will fare better in yourself. It’s ridiculously difficult but I do believe in positivity as a mitigation. You are much better not getting stressed about it all or thinking about it 24x7x365. I have failed at this for about 2 years but I do believe it to be true. So your GP is trying to help in that way. Honest.

End of thoughts for now.

I’m with you.

Richard


#5

Thanks Richard, will take your words on board.
Mick


#6

I started in Leicester and neurosurgery up here is in Nottingham. It took 5 weeks for my referral letter to apparently arrive in Nottingham. It’s slow.

I’m sorry you’re going through the same stuff.


#7

You’re absolutely right. GPs know nothing about AVMs. I spent 5 years going from dr. to dr. trying to find someone who was interested enough to pursue the source of my symptoms. I finally found a neurosurgeon, out of town, who specialized in AVMs. By then I had bled and was close to death; he operated and saved my life. He told me that the average GP could work for 40 years and never see an AVM much less know who to refer to or what tests were required. He had written several papers urging education on the subject but I guess it’s just not an issue unless you are affected. Don’t give up, keep pushing them.


#8

Mine has taken 2 months and counting, as no one seems to know what’s going on…


#9

Thanks Jen, I will do mate…
Mick


#10

Hang in there Mickeboy. I have all of the symptoms you mentioned except for the seizures. My neurologist refuses to investigate until the neurosurgeon finishes treating my AVM. The neurosurgeon said he doesn’t think my symptoms are caused by the AVM. So I’m in no-man’s land. My neurosurgeon is dealing with a lot of brain tumour patients so I understand why I am not a priority, even though it’s frustrating for me. It really helped me to readjust my mindset from the “waiting” mindset which I was stuck in for the first 3 months. Now, I do what I can to chase various doctors, make progress, go to appointments (things I can control) and then schedule the next time to tackle it in my calender. Then I try to live like a semi-normal person (and forget about the AVM), within the bounds of what my current symptoms allow until my next medical appointment. eg I might set a goal to leave the house once each day. Every time I get a headache or vision disturbance I remember the AVM of course, but I try not to dwell on it. Being diagnosed with an AVM has a huge emotional impact and I would advise seeking assistance for your mental health during this time. There are services available on the NHS such as CBT (Cognitive Behavioural Therapy) which is super practical in regards to coping skills. I would highly recommend looking into it.


#11

I completely agree with @aliveandkicking. CBT is a worthwhile conversation with the GP.

When you say two months, two months for what? Just the referral to go across?

I did chase every step of the way, so if you want to do that, you need to talk to the receiving end and the sending end to make sure things are happening. I would assert that you are still under the care of the sender of the referral until it is successfully received. My ENT doc was happy that that was true, though I chased no end.

I would agree two months is too long for this sort of thing (but it is not atypical, I would say indicative of either poor organisation in the relevant hospital(s) or indicative of something else: the political target is always “underfunding” but I don’t know what it would be).

What I do know is that if you make a complaint, magically things move on. I’m not a professional complainer (though we know such people exist) but making a complaint definitely moved my radiology results on a step.

No one is picking on you. It is merely this difficult to get your case seen. I am sure just about anyone who is not clearly in failure goes through all this, whether they are a young graduate, a middle-aged man who needs to keep working for his family’s benefit or a 90-something. It is as unfair to all of us.

We’ll be with you all the way.

Richard


#12

Thanks aliveandkicking actually have just starting seeing them, for physio and phychological help. Got another meeting Thursday. Sorry you have to suffer these symptoms, hope you get there soon. Thanks for your reply, they are always well appreciated…
Mick


#13

Hi Richard,
Yes 2 months after being referred to JR to see a Neurosurgeon. Had a letter of referral, cc from which Dr received a copy. Phoned to chase up appointment, but secretary said they had no details. I should be under the care of JR, but it seems it is still under Royal Berks. My GP doesn’t seem to know what is going on, which has left me really frustrated. These are the sort of things I could do without right now to be honest…
Mick


#14

So I think you need to go back to the person who wrote the referral letter and tell them that the letter to John Radcliffe has been lost and to re-send the referral, ideally urgently / by fax, as you have a life-threatening condition and it is now 2 months wasted.

2 months is more than long enough to wait for a mere referral.


#15

Hang in there and be the squeaky wheel! I’m polite by nature, and it is really hard for me to be pushy; but if you aren’t pushy, you get lost in the day-to-day triage. I’ve come to accept that any medical process that requires communication between one doctor and another has at least a 50% chance of being screwed up the first time. I spent three hours on each of the last two days trying to get the obviously missing critical page of a clotting report. The matter is now somewhat resolved, but if hadn’t been pushy…


#16

I have this issue as well. GPs are entirely ignorant about AVMs and don’t recognise the symptoms associated with them. I was on the verge of having a brain haemorrhage when mine finally agreed that my severe headaches and nausea might not just be migraine!


#17

Hi Mickeboy,

Hope your feeling a little better, if you just found out about your avm then I know half of the things that go on are actually mental coming from my experience although.

When I first found out I was in a loss, felt tingles everywhere, itchy / tingly skull , tinnitus, I was a different person, luckily I have a family member whos a neurosurgeon in the states and ended up reffering me to a hospital in Montreal who specialize in AVMs and intervention etc…

I got to meet the man part of the Aruba trial, after getting explation about avms and risks I felt like a weight lifted off my shoulder and felt so much better.

All this to say , take things day by day and keep calling the docs and hospitals, I know UK is similar to Canada, so you have to push for your own health and assurance, avm is a fairly well know issue now a days, even my chiropractor few weeks back knows that it was as they teach it in their program.

Best of luck, keep us posted


#18

Neurologist barely know what we are going through. They shot mine with too much radiation and pretty much friend my fontal left lobe, softened the skull bone, fried a free arteries and caused major brain swelling. I continue to deal with brain swelling because of the leaking arteries. It’s been almost five years now. The damage done is irreversible. Years will be shaved off of my life. I’ve developed other diseases as a domino effect of this. I’m 42 years old now and I’ve had three minor strokes thus far. I have epilepsy, severe migraines, an autoimmune disease that attacks my immune system. My opitical , crainial, and spinal nerves were damaged … I’m losing my eyesight fast. Dementia is setting in and it’s very scary!!!
Point being, you’re not alone. If I go to the ER, the doctors there look at my medical records and I scare them. It’s crazy! I’m constantly nauseous too. The vertigo is bad at times. That’s why I have joined this blog. To know that I wasn’t alone in this battle. Look up “The Creed. SayIWont AndIWill” it’s sure to get your attention and possibly tears in your eyes. I’ve ordered from them
I wear it with pride.


#19

If you are waiting on a neurosurgeon, PLEASE PLEASE research before you let them touch you. I’d give anything to to go back. My problems are due to medical neglegence!!! I was a bad candidate for the cyber knife . It’s ruined my quality of life and definitely reduced the time. Always get a second opinion.


#20

Thanks for all the replies, they are all well appreciated. I will push this as hard as I can. I will keep everyone informed of my progress and thank everyone for there support. Kind wishes to all…
Mick