Dr Brahler of Northern California Oakland, Kaiser. Hospital was Kaiser Oakland.
He really did put me at ease and tried to answer questions even outside of his area. I thing that impressed me the most, he actually told me when he did not know the answer and had to check on it. I’ve had other specialists that insist they know everything and it seems like I am challenging them when I ask questions.
You are doing the right thing. You have found this group and sharing. I found the group after I went through everything, so like so much in my life, I do things the wrong way. 
Yes, your doctor is right. There is a CHANCE that it will expand/change. Since, in my case, it was embolized, it could grow more but with the reduced to little blood going to the AVM, the hope is that it will not.
What the doctor has wrong in my opinion, is that things still should be done. There is no time to just stop. If it grows back, it grows back, deal with that then but you want to live now.
I don’t like getting into politics about health care system, they all have their pro’s and con’s but I am in an HMO which some in the US think is the lower tier of health care but my doctor and response time I consider excellent. I can not imagine the types of wait that you are going through. This is one part that I wish you luck and hope things work out.
And yes, I was in a fog before my first surgery and wish my doctor had done a CO2 blood test on me to see if I was going into hypoxia. But after the first surgery when he blocked up the major ingress and egresses of the AVM, plus being on O2 for seven hours, surgery and recovery. My mind felt like it was going to explode. Things where so clear, I was amazed.
So yes, there is light at the end of the tunnel. Your life does come back. You will probably have to learn to live with some new things. (I do feel like I have a metal pin in me if I flex a certain way. I do have 20+ meters of stainless steel coils in me.
Take care
The QE called me back and I am provisionally scheduled for 7th June, after I return from my sister’s wedding in France. If I am not happy with care, further delay (that’s only my first embolisation, I need another one or two minimum) , I’ll transfer.
I had another call from the Royal free afterwards as well and the QE is apparently in talks with them for transfers anyway to help them clear their backlog.
I think I can live with some odd feelings after embolisation.
The reason why my first doctor wanted to wait is because embolisation on my avm is “high risk”. He didn’t feel he had the experience to do it either. The second one still says it’s risky but worth it and he has much more experience with AVM. He says that, even without a bleed, my heart will eventually fail. First doctor agrees.
I am more worried about the complications from non target embolisation and organ damage than pain. Increased quality of life and life expectancy are my aims and the embolisation might help or make it worse. So the decision was a bit of a dilemma.
However, my husband and I came to the same conclusion than you: we chose living the best life I can.
@Nathalie Is the second doctor Ian McCafferty? Or another specialist?
I had a phone appt with Dr Lim at the Royal Free last week and I asked what would happen if I decide not to have the intervention. He said the pelvic AVM will eventually put pressure on my heart, that I am young now but this is the evolution and that this thing will not go away on its own. I am worried about organ damage such as perforating my bladder (they sometimes use coils) as this damn AVM is wrapped around my urethra, bladder and vaginal opening as well as rectum. It essentially caused venous varicosity in my pelvis. I am also worried about it increasing chronic pain bec that is relatively under control atm.
Yes it was.
I don’t know how old you are. I am 49 soon.
Pain has increased gradually over the last 15 years. 15 years ago I took pain killers and it was under control. I had 3 days last week which were a nightmare. By day 3, I was like : it’s got to stop now, can’t cope any longer. But I am luckier than some.
Mobility has reduced dramatically over the last 2 years and I used a walking stick for the first time last week during my 3 days of hell. I am also now the proud owner of a blue badge 
The worst is sheer exhaustion. Anything I do deplete my reserves. I felt better today than I have in a long time, probably because I have been on holidays for 2 weeks and, prior to that, I had 3 weeks off for my back (new symptom potentially). 1 week of work out of 6 week so I am well rested. Anyway, I managed to hoover and mop my hall and kitchen. I also wiped the doors. It took me all morning as I had to have some breaks. My husband was amazed. I was proud.
Going from being superwoman, on 24/7, and needing very little sleep to, at my worst, having to sit down after dusting one shelf. That’s the evolution. And I am not even in cardiac failure yet. My heart is pumping well, it’s just getting tired.
So, I’ll take the op because I don’t like where I’m headed. My heart is damaged already, don’t want to leave it any longer.
I haven’t heard about the coils perforating organs. And you can discuss the embolisation with your doctor. Dr McCafferty took great pain to explain his approach /method, what material he was going to use and he was open to questions.
I am more worried about materials travelling to my lungs/liver/legs etc and blocking a vessel they shouldn’t. That’s the risk.
So embolisation or no embolisation, they are not great choices but they are the ones we have. Like we say “Chacun voit midi à sa porte” which boils down to we all have to make our own mind up.
Good to hear things are moving forward. Sounds like you have a good doctor too. One that talks to you and answers questions.
I’ll just say that my doctor did mention that he liked to limit his use of epoxy since that could break off or basically have a drop escape. He liked coils and alcohol. The alcohol causes the smaller vessels to shrivel. But he did do some epoxy filled coils (I believe) to cover larger areas. Also the length of the coils, I really believe makes a difference. The longer the better.
But i will no lie, I do have a little scratching inside now. I have found that a belly band applies just enough pressure to keep things from moving around. (So I would guess no running a marathon. But walking is fine. But also I think he did so much camera work in order to keep the coils from impacting other organs to a minimum. This sound like what your doctor is also going to do.
I am happy for the progress both you and pitica have going.
Take care.
Yes, he will be taking several images through the procedures and he will use detachable/ retractable coils + onyx or sclerosant. He will approach it through the transarterial and transvenal routes (i.e from groin left and right and from abdomen).
The detachable/retractable coils are to avoid non target embolisation. So, if one does not stick and decides to go in my pulmonary circulation, he can pull it back. Apparently, that is what is where it is likely to end up.
That is why I am sticking with Birmingham for now, despite the delay.
@Nathalie Will he do an angiogram first just to investigate and then another to intervene or do the intervention on the first angiogram? At the Royal Free, they said they prefer using ethanol vs onyx and avoiding coils altogether although of course, in practice, they might have to use them. Each team develops its approach and apparently the royal free say they always have to clear up after botched jobs with onyx, but I also heard several patients in the US successfully treated with onyx so it’s down to their preference, I guess. I also wanted to come see your doc in Birmingham but it would take ages via the NHS, I think.
Angiogram was done ages ago. It’s the reaaon why I was sent to Birmingham in the first place : due to the speed and size, they were not even sure that they could embolise. It’s still one possible outcome: Dr McCafferty said clearly that he might go in and realise he can’t do anything.
So …. I chased the QE Tuesday to confirm my operation is going ahead 7th June.
I ended up having a phone call from Dr McCafferty at the end of the day, saying that they have a shortage of beds and operations get cancelled on the day. He’s not satisfied that 1) he can get my first embolisation done soon and 2) that once he starts he can finish the treatment in a timely manner i.e get me in for the next 2-3 further embolisations I will need.
He said that he spoke to his colleague, Dr Joe Brookes at the Royal free and he would be willing and able to accommodate me more quickly and do the follow up procedures too. He said they might be able to fit me in end of June.
So, I guess that is it : transferred to the Royal free now and Dr Joe Brookes as my new consultant. Dr McCafferty said that he might still come down when I get the embolisation done as he is interested in seeing the procedure.
Sounds good. Sounds like you’re ok with the change and the better timetable. It’s interesting that your consultant fancies travelling for at least one of your ops.
I thought so too, especially that it’s his area of expertise so it’s not as if he hasn’t seen /done pelvic avm embolisations before.
He has also said that Dr Joe Brookes is the only IR he trusts to do the procedures. He is the senior consultant at the Royal free.
He added that “I am very robust and must be my own placebo” because the images are much worse than the reality. 
Nobody told me the size of my avm but adjectives such as extensive and massive are in all my report. I guess it must be big.
That or it is an excuse to go an have a drink with his old friend
No matter, big, medium or small I am not goldilocks, I just want it sorted!
It’s probably a mix of you being an “interesting patient” and an excuse to pop to London. I was the “most interesting patient of the day” when my ENT doctor diagnosed my AVM. I said to him “I’m not sure I want to be ‘most interesting patient of the day’!” But I was (and for all the wrong reasons).
It sounds like you’re in good hands, which is what you want.
@Nathalie Have you had the procedure on June 7? The Royal Free told me they don’t do any AVM procedures in June. I hope you had your treatment and things are going well with the recovery. I’m still undecided whether to rock the boat or not. I’m fairly stable now and the possibility of making things worse makes me agonise over the procedure. I have yet to see a success story with pelvic AVM at the Royal Free 
Hi! No, 7th June was Birmingham and it was cancelled. My referral was stucked in Dr Brookes inbox for a month before I started chasing and realised what had happened! 
So this means that my first appointment will be on the 28th July, for a consultation initially.
Yes, I think summer months are very slow, but they shou;d be able to offer you something in August or September, when everything resumes at a faster pace. I had offers in April and May but this coincided with my completion on a flat an all the insanity that followed with renovations, etc. I figured it’s best to be settled. But for you, it should be more of an emergency. If you don’t have direct phone numbers for their office, let me know and I’ll send them via message so you can contact both his secretary and the booking office easily.
Hi!
Thanks for your offer of help. I have the telephone numbers and things are in hand.
They just have their procedures to go through before booking the embolisation, as frustrating as that may be. I will see on the 28th.