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AVM Survivors Network

Anyone having NHS problems?


#21

Hey all, just an update, my poor Gary is still in lots of pain with his head, 1 year post gk, for 4 weeks now he’s been pretty much bed bound with unbearable head pressure ‘migraines’ the drs only seem interested in treating a headache! (Those of you that also suffer with head pressure will understand the frustration at your pain being referred to as a mere headache!) paracetamol? Really!? Is that the best you can do?! Codeine which doesn’t help too much anyway and side effects a&e unpleasant.
In and out of hospital and drs. Constantly on the phone to either hospital or dr trying to get him some help and everyone palms him off on someone else. Is so frustrating seeing him in so much pain daily and unable to help. I literally give up with drs. Am going to try a more holistic approach for his care, diet and supplements etc. (I am pretty much his full time carer, along with 2 young kids, its tough some days trying to juggle it all, we try to shield little ones from it all as much as possible but it is starting to affect them :frowning: )
x x


#22

My AVM actually burst in my brain left front lobe back in May 2011 I have to say the NHS were amazing and have been ever since. Yes there are times when things don't go your way, appointments cancelled, mix ups etc, etc. The NHS see thousands of people for every illness you can think of on a daily basis, please give them a chance they're only human after all. Im sure you feel quite in your rights to make a formal complaint to your local NHS Services and I'm sure they will help. Other countries don't have this service, you can always take out your own personal health insurance like other people have to around world, me personally I think we are very lucky to have the NHS. I hope everthing works out for you and you get the help you need.


#23

The NHS were fab, my stroke occurred near two years ago; the road to recovery was hard, but the hardworking staff at the National Health Service saved me, although I suffer from partial blindness I feel blessed with my second chance at life.


#24

I have no respect for the NHS. Mark struggled so much through 2012. We insisted he needed MRI but were repeatedly refused. Doctors kept saying meds needed altering. Finally Jan 2013 they found the bleed.
Instead of accepting this was what could happen with and AVM they still put it all down to meds not being balanced and Mark drinking. He was offered a craniotomy. After some time on a supposed 3 months waiting list the doctor told him he could not have the operation. He was clearly devastated. Months passed with him struggling and again repeated refusal for MRI,s.
We kept telling them they were missing something but hey what do parents know.
September he was offered the craniotomy again. I know we were confused by all this so how was Mark supposed to deal with it.
Mark got so fed up he refused to see any more doctors, he actually said he knew he wasn't going to survive.
The hospital turned off Marks life support machine against our wishes on 22/11/13 after putting him on it for just one hour.
When we questioned their right to do that we were told they could and they did.
I wrote a complaint about the doctor's decision and I quote the reply, 'it is not the parents choice to make but the doctors'


#25

HI Tracey, first of all i'm so sorry that the complete ignorance of our NHS ended up with such a tragic loss. I honestly don't know how you wrote that without a lot of extreme language in it. Reading your post however has kind of spurred me on again. I'm getting the same treatment from my surgeon and neurologist and I refused to go to them even when things were obviously going wrong. I lost the left side of my face a few months ago and it took a lot of people a lot of nagging before I'd go to see the doctors about it. I refused to go because I knew what would happen, I'd get passed from pillar to post with 2 different health boards arguing over which one would be responsible for paying for my CT or MRI. And do you know what, I was right. Even though they "found" something on the MRI i eventually had I still have no idea what it is, scaring or tiny bleed and I can't get sense out of either department. I had honestly given up on them and I was just going to ride it out until the day came. I can't give up though because if do then it's my 2 young children left to watch the doctors turn my machine off. Thank you so much for sharing this Tracey. I think I have a few e-mails to write now and fingers crossed I'll get somewhere xxx


#26

Oh boy. Difficult reading.

I was admitted to an NHS Hospital within 2 hours of seeing my GP, scanned that day and the next and then transferred to a specialist Hosptial 3 days later as soon as the bed became available (1am ambulace transfer - arrived at 3am, must have woke up the whole bay). More and more scans and angio's. They knew something was going on but couldn't track it.

7 days later, called back in the next day, another angio and their suspicions were correct C4 AVM.

More and more scans, tests and Consultants to meet. Surgery set for 8 weeks later, when all necessary Consultants could get together. Went ahead as planned - 12 hours. More scans and angios.

Over the 3 years since I've been scanned and scanned, seen Consultants in what must be more than 10 specialties (Othalmology, ENT, cardiology, Spinal Injuries, Pain Management in 2 different centres, neuro rehab, OT, specialist neuro physio, biomechanics, speech therapy etc etc).

For me the NHS has been faultless, some appointments have been a bit longer than planned but only one or two in what must be nearly 100 over 4 different Hospitals.

I'm sorry other's experiences haven't been so good.


#27

Hi

I am having horrendous trouble with NHS. Had treatment in Leeds but after 4 embos there my facial avm is worse and the bleeds shocking and daily. My doc referred me to Birmingham and I phoned them today but they are not taking patients out with their area. Leeds do not want to do any more. Don’t know what to do next. Trying to get a response from uams in the states at the mo, out of desperation. Any suggestions would be great.

Louise


#28

Prof Eldridge at Walton Hospital Aintree Liverpool. He’s treated my cerebral AVM. So far so good !


#29

I so share your frustration. I was diagnosed with a right frontal AVM last July. One MRI and cerebral angiogram later…I am still waiting for embolisation and craniotomy. I was wrongly advised that I couldn’t drive which caused problems with work as I live 40 miles away. My consultant (who is great) doesn’t want me to carry out full duties at work…and while they have been great and very understanding…I have now had my surgery cancelled last minute for a second time due to lack of ICU beds.
Well, I say at the last minute…but they leave it 48 hours so I cannot then be guaranteed a date within 28 days as it doesn’t meet the NHS pledge.
I have had PALs advise me that they cannot give me a rescheduled date at present as they are struggling to deal with their emergency backlog and have been having to send some of their emergency cases to London.
I have a meeting with my local MP on Friday…but am completely at the end of my tether and just don’t know what to do anymore!!!


#30

i really do empathise with anyone having issues with the NHS.

I have been in their system for the last 25 years mostly misdiagnosed and left to the point that my AVM had became inoperable.


#31

The nhs is a joke…suggest you try to get your story in a newspaper or put it all over Twitter…it never ceases to amaze me how complaining through facebook or Twitter works…outing these problems where everyone worldwide can see gets a reaction…


#32

wow LoulouYorkshire, that really aint good, sounds almost identical to my story with the NHS.

Have you had any joy yet ??

I have been chasing my tail with GPs, docs, surgeons, clinic docs, nurses, you name it no joy, and lip service.


#33

dave…louise went to see er suen jn the states to get it sorted x


#34

was that personally funded ??, as am curious as to how much this would cost, as am getting desperate also now, my onyx is still coming out of which is my understanding a high flow vessel which is supposed to be blocked.

Lat time i bled non stop ended up in surgery so am getting real worried now, Lou sounds like she really has been in a bad place, and i do hope her trip to the states has helped, but i do think the NHS needed to get this sorted.

I understand they dont have much info, but surely things need to change, you cant just not help people, if they could be helped.

Cant be right to left, no one helping in this country surely.


#35

Hi Dave,

Have you heard of “Change org”… You can set up a petition on there.
The trouble with this country is the NHS…is is underfunded cos not one party has thought of introducing a tax specifically to fund it !


#36

Hi, sorry I don’t often look on this site now. I’ve had to self fund. Been to the states 3 times and back out in October. Dr Suen is amazing. Life threatening bleeds stopped immediately after his first surgery. Has cost a lot of money, but he’s saved my life. No they wouldn’t do a thing for me here. Total crap! Google me and you’ll see how the papers got hold of my story. The headlines are awful. I wish you well I know what you’re going through and I’m so sorry. Louise Brent


#37

What do we Google you under?


#38

Louise Brent, my name. Not sure if we’re supposed to give out names on this site but hey ho!


#39

wow, i read your story and am so sorry, your story is an inspiration to us all.

That is a lot of money but if it is saving you then is well spent.

I have emailed Dr Suen, and he replied which i was surprised at, i take my hat off to him. Its just a pity i aint ever gona meet him am afraid.

Just back from my GP and demanded action, i know her hands are tied especially in Scotland as the law is different, we cant be referred for second opinion from Gp, the surgeon or Dr at hospital is the only one if they feel they aint qualified enough, joke really, so i cant go picking hospitals in the uk like our friends south of the border. So even more hurdles. As if there isnt enough already.

Our next step is to gather as much info from the surgeon and radiologist as pos, and take it from there, but i have had so much contradictions i am totally confused.

I do hope my experience of the NHS gets better all i want is help, but i dont know if this is to be the case, there as some very very nice people working in there, they have restored my view on the human race.


one person in particular, my mothers neighbour whom i hope is reading was a HUGE help today, thank you if your reading, you were a GREAT ,you have restored my opinion on the human race. I am currently in fear of facial bleeds, as i was before after an embo with Onyx, last few were unbelievably bad, all was supposed to be sorted but now the onyx is back through and am terrified as this was how it happened before, am at a total loss with this now, am desperate. Cant be right they just leave us after doing initial treatment to bleed like this or live in fear of.

i aint usually an anxious person and after initial treated i wasnt but now, is a different story, some of the staff within NHS just dont get it, thats the scary thing too.

#40

can i ask anyone on here, if they think i should take the fact that onyx is coming out of my face seriously as this led to serious bleeding last time, all the People at the NHS are making me doubt my self. Its my inner lip again, the stuff just keeps coming out after every surgery, it lasted 6 weeks in there and now it has ulcerated and is coming out, am seriously worried, nowhere to turn.

Same as last time ,if it starts back and forth to A&E when it stops chucked out, until they get fed up of me coming down, then put up to the ward ( not helpful ) told last time they kept me in to pacify me lol unbelievable, then it started real bad and needed life saving surgery, now its back , and at the end of my tether.