This is quote of the day, though Merl made some excellent points, as usual, so I might need to award two quotes of the day…
Seriously, talk to us, talk to your friends, talk to the professionals, but just make sure you share how you are with someone rather than going through it on your own. I second all of this.
Richard
I don’t know what you’re talking about TJ, I never repeat, repeat, rep… myself 
(as my wife just rolls her eyes at me). I’ve lost count of how often in a day I’m told ‘You’ve already said that…’ It’s a bit of a running joke here. I say “There’s nothing wrong with my memory…” then look at her and say “…And who are you again??” It is said as a joke but at times a very thin joke. My memory, once one of my better assets, has up and vanished. If I don’t write it down… POOF, it’s gone.
And Richard’s comment “…just make sure you share how you are with someone rather than going through it on your own.” This is a must. You will burn yourself out at lightening speed trying to deal with it all on your own. Just before my first surgery occurred I’d started a new job, was in a new relationship and then the backside dropped out of my world. I didn’t think it was fair to land it all on her, so I tried to deal with it alone… …Ohh what a mess. I had all of this stuff (thoughts), bashing around in my head and it was turning my mind to moosh, the same questions, with the same answers rolling over and over…add a headache and I was ready to explode.
My then girlfriend (now wife), She knew something was not right, so I told her and gave her the option to end the relationship then and there. She was, let’s just say, a little annoyed that I thought she would up and leave. I explained that I didn’t know where this road may lead and it may not be easy, but she choose to stick with me and I thank my lucky stars every day for it too. I can honestly say I would not be here today had I not had her support.
We all need to have other’s input, somebody outside of self be that partners or dr’s or friends or pcp or each and everyone of them. Other opinions from other view points can inform us and this way we can make a more considered decision.
Merl from the Modsupport Team
For what it’s worth I have two scars that have been “reused”, but they aren’t from a craniotomy. First was a long scar down the length of my abdomen from when my cancer was staged, that was reused more than a decade later for uterine surgery and then for a C-section; the other is from my pacemaker, that had to be reseated a year and a half later. They are if anything thinner and less noticeable now than the first time around.
I second the recommendation to consider talking to a plastic surgeon. There is a lot that can be done if there are any lasting cosmetic issues, which I agree can be really disconcerting. I’ve had a couple of surgical scars on my neck that were quite ugly and visible until they faded. Luckily I had no need of any more intervention there, just time. In fact those scars are pretty much invisible now even though they are not small.
Reading everyone’s messages has got me just a bit wobbly and emotional! No, I’m lying - very wobbly and emotional is more truthful.
I am trying as hard as I can to stop myself racing ahead crazily with the goal of just getting the last fistula mended to make everything okay again. I desperately want everything to be okay again but I know that’s a bigger and longer term change to adapt to. Even knowing that I’ve got a metal plate and screws in my skull is frightening and makes me feel like a failure on black days.
On better days, I have been able to think more critically about what this type 1 remaining fistula means to me. My swollen forehead blood vessels (never subsided after my first operation for the four fistulae) are giving me no peace whatsoever, particularly as I’m swollen across the side of my nose and around my right eye. I asked about the risk of aneurysm when blood vessels have been swollen for over a year and my surgeon wasn’t helpful in saying that there wasn’t any sign so far of any damage. He also said that if I bled, it would be contained within my skull and not cause any major damage. I wasn’t reassured because he didn’t seem to be appreciating that I could be swimming, running, driving and wasn’t considering what might happen with a drop in blood pressure from the bleed, when I already have quite low blood pressure.
He did say that my remaining fistula involved a significant degree of blood flow and thought that my still swollen forehead blood vessels could be involved in this. He wasn’t prepared to say that the pounding in my ears would go away after a second operation. I asked him outright if he was agreeing to do the second operation only because I was asking him to, and he said that he would normally advocate leaving type 1 fistulae alone but he could see that I was getting symptoms that were interfering with my life.
I think I am truly more scared about leaving this and what it might mean for what I can undertake in my life with work and my career. My surgeon and his team can’t measure things like local inflammation and pressure differences in my brain where the fistula is. I do not believe that the documented studies on type 1 fistulae which conclude that they are ‘benign’, included people like me who have already had 4 disconnected fistulae. I think it’s only a matter of time before this fistula starts to change somehow.
Going into work on a phased return is definitely shattering for energy levels but I so want to feel like a normal person again with some skills other than being a hospital veteran, and plans for my future.
I was able to get the energy from somewhere to ask if he could let me have access to his colleagues’ contact details within his community, to discuss the answers to some of my questions in more detail. I described how normal this is, in a research environment, to form networks and grow knowledge. He definitely looked shocked but didn’t say no, so I am hopeful for my next appointment with him in September. I have realised how worried I am about how my scar healing and hair regrowth might be affected and will pursue this; I hope this is not vain but it’s hard not to feel ugly and outcast when you see your own bald scar.
“…FAILURE…” ??? Why?? Did you choose this? Of course not. None of us do, but here we are. You should not be seeing this as a failure on your part at all because it’s not.
We ALL want ‘…to make everything okay again.’ But, I’m sorry to say, this is not always the outcome. Like you, I was told the 2nd surgery would assist, it didn’t. In fact the 2nd surgery managed an issue but started a whole plethora of other issues. I had a life and I wanted that life back, I didn’t want to accept ‘THIS’ and I fought against it. The reality was/is I had/have no choice. I had what I call ‘The Caveman Mentality’ ie I man, I strong ugg…’ and tried to push myself to overcome it all. That was a bad, BAD idea, because the more I pushed, the more my body pushed back.
“…it’s hard not to feel ugly and outcast when you see your own bald scar…” OHH YEA, BIGTIME.
I now wear a hat to cover it all, you should see some of the looks I get when I forget my hat 
With all the scaring it looks like I’ve been hit with an axe. Some people have a smooth ‘bowling ball’ head. I have a bowling ball head too, it’s just mine has the finger holes from the craniotomy 
(I’ve gotta make a joke about it 'cos if I really sit down and think about it all it takes me to some awful places)
The blood flow within our skulls is established before we’re even born, over our lifetime our body’s develop and mature with these structures, then we have surgery which alters these flows. The body can make some adjustments without too much issue, but there’s some changes that can take a long, long time to become ‘normal’. It’s been 8yrs since my last neurosurgery and somethings still aren’t anything like normal. I find I have good days, bad days and days I wouldn’t wish on my worst enemy. I’ve now been told this is about as good as it’s going to get, which has been a very bitter pill to swallow.
I completely understand and acknowledge your wish and desire to return to normal BUT you must listen to your body. It will tell you when you’ve reached your limit.
Merl from the Modsupport Team
I think getting access to more of his colleagues and (effectively) getting a wider view or second opinion is a fair idea. Where are you being seen? I’m thinking that the people who looked after @corrine at the NHNN in Queen Square, London did a fair bit of consultation with each other as to the right steps to take for her, though having taken step 1 I think steps 2 or 3 were closed off so she hasn’t had as complete an outcome as she was expecting. But the degree of colleague consultation sounded good. You could ask your surgeon to discuss with his colleagues rather than you taking on the work. If he understands your position (and it sounds like he does) you could get him to do that consultation.
I agree that getting back into work is a good thing. I tend to think that if we don’t have enough to keep our minds busy, they fill more easily with all the worries. Keeping busy is a good strategy, honestly.
I also can see your view (and that of your doc) that while Type Is are often considered benign, since you do have remaining symptoms, it could be worth progressing. I understand that desire to get “fixed”, though there is definitely a strong balance to that as noted by Merl to consider how much you take on or when. Merl regularly reminds all of us that listening to your body and not “pushing” yourself to do things is an error he made. Somewhere is the right balance for you.
I also think if the amount of blood being diverted is high, it warrants the doc thinking about / consulting on / having a further look at. My DAVF was quite small really – just a small white circle, a single shunt from artery to vein, on the MRI – but again high flow. I’m sure it was Type IIa or b rather than type I but may have evolved over the year and a half from first noticing it to having it embolised.
I offer these thoughts as random helpers. I hope something here might help you in your own thoughts.
You’re doing great. Very best wishes,
Richard
Begging for everyone’s thoughts and encouragement for me next week - I’m having my angiogram in preparation for my next craniotomy to disconnect my fifth and (it better be) final fistula. I am already getting sick waves of hating the radiologist and what he’s going to do inside my brain.
My September appointment with my surgeon resorted back to the usual growling of questions and answers with clear dislike on both sides (he said that he would probably cut and tie off my still swollen forehead blood vessels which he thinks have been permanently stretched and damaged), and I barely left the department before I broke down in tears in the lift. Even my neurology nurse who was present and who spoke to me for over an hour the following day, had to be very diplomatic and admitted that there was “more tension in the room this time”. I told her that if my surgeon had lost interest in me as a patient, I would like him to pass me on to one of his surgical colleagues in the community (yes, was thinking of NHNN in London). I said that I wasn’t prepared to have the situation where if something went wrong this time, my surgeon could effectively offload responsibility because I was the one asking to have a non-clinically required operation. She was adamant that he would never think or act like that, was highly professional, aware of my distress but simply could not communicate his support for me properly. So, I’m going for it. I know it might not ‘need’ to be done but at the same time, I can’t carry on living like this and the sensation of pressure and high pitched pulsed whining is getting worse.
Ironically, my hair has suddenly reappeared where I had the worst loss at the sides of my head.
Feeling very very lonely. I think my recovery was going quite well and I’m relieved that I could make it back to work for about two months on a phased return, but that is all over now and I have had to resign. They needed to see me return to full hours and I was buckling with exhaustion.
It’s impossible for my family to have any idea of how horrible this all is - I’ve lost a part of my identity that I really cherished in my work but their thoughts are “oh well, at least you can concentrate on finding some work closer to your home without such a long commute”. That’s fair enough but doesn’t take into account how important it is to hold on to some tiny thread of your own personality and identity when you know that your surgeon is going to open up your brain for everybody to have a look at.
Have somehow got through the angiogram last week (I went deaf for about 2 secs when the radiologist injected into the internal carotid artery - does anyone else have such violent reactions to the contrast media?)
I saw my surgeon today and he told me that I have an extensive fine network of blood vessels branching off from the arteries in the folds of my brain tissue, directly where my operation site is for my four fistulae. This network is not meant to be there and my surgeon says it is neither a new fistula, nor an avm but some kind of random proliferation of new blood vessels.
He says that he is not going to operate to disconnect my fifth fistula until he has gathered more opinions. Very, very worn out with all of this. I’m desperate for there to be some kind of end point when I can let this pass into the background but it is taking me over. Any thoughts or wishes would be so kind.
Hi, wish I/we had better answers - but, these are the type of reasons I am on meds. Crappy answer in my opinion. . . But, it’s better than crawling off the walls.
Possibly, look for another outlet - hobby, anything to take your thoughts of what you’re body is currently going through.
God bless friend 
Well done! Hope you got through the angiogram ok and are not so frightened / bothered to do it again some time. The contrast has different effects, depending on where in the brain it is being injected – a hot sensation in the face or the tongue, fireworks or dizziness, you name it, but it is temporary and I found it ok when the doctor explained “heat coming in a few seconds…” or “might feel a bit nauseous…”
It’s all “normal”. Well done.
I’m with Mike on the recommendations. I worried my way through my wait for surgery (and again, I think some of this is the fear of the unknown, I’m sure I would be calmer second time round) I think a good strategy is to keep your mind busy: find a hobby or a project that keeps you busy. I decided to build a radio-signal-synchronised electronic clock from first principles when I was waiting for my op and I am sure that having something to focus on, ideally something that needs a bit of thought (rather than something completely trivial) helps to fill the void and lessen the time thinking less good thoughts. Doesn’t matter what it is: something you’ve always wanted to do / start but never had the time or never allowed yourself the time to get into.
Well done (again). None of this is easy, so give yourself credit for getting through that nicely.
Hey Talloak,
Firstly I want to agree with everything @DickD has stated
Especially the ‘It’s all “normal”. Well done.’ in regard to your angio.
Now, as for
This is not unusual, especially in more complex cases. And it’s a good thing too, getting other views from other surgeons and other specialisations can provide a more complete overview of your specific needs and the risks that maybe involved.
Another BIG plus for @DickD the ‘…strategy is to keep your mind busy…’ and @mike_az_21
‘…look for another outlet…’ In my opinion this is a MUST.
I’ve got to keep my mind busy or it wonders off all on it’s own and can take me down some awful dark holes. I NEED something, anything to keep myself occupied and I have a few ‘Tools’ I use. I have a wife… she has a list of task the length of my arm (Tsk). I have a large yard that needs maintaining. I have a little mutt, he needs exercise (Or a diet 
). I have a shed full of tools and tasks galore out there. Obviously, I have the computer, the internet, games etc, all things that can assist in occupying my mind.
I don’t agree with @mike_az_21 in regard to meds being a crappy answer, in fact rather the opposite. At times I’ve needed meds too. I think there’s a time and a place for the use of such substances and if they help, then to use them to your benefit. For some people there can be a bit of a stigma attached and I’ve experienced that judgement too, but I have to manage all of this for me, not the people passing that judgement. If that ‘management’ is meds, so be it. Most people have no clue of the realities of it all and in my view their judgement doesn’t count. I have to manage for me, not them.
Merl from the Modsupport Team
When I say “crappy” - I’m applying this to the norm - in “our” cases - well, we’re quite a ways from it
So, when I say “crappy” - I wish I could do without em - but, yes - I also feel that they are a must in many cases - like when I was first released from ICU - of it wasn’t for meds, I have no clue how I’d make it through the first month or so. . . But, meds are such a slippery slope - they are in many cases addictive & habit forming - let alone take a toll on our organs.
But, it is what it is - gL to us all
Thanku for that wisdom. I so appreciate it
Dear everybody,
I have just had my second craniotomy in April at the same hospital and with the same team where I had been having such appalling communication problems…the reason for not moving somewhere else or getting a second opinion was probably due to pure frozen terror and exhaustion.
I found out something pretty shocking in the course of all my neurosurgeon’s investigations as to why my dural fistulae are reconnecting themselves and why I have an unrecognisable erratic network of fine blood vessel regrowth pretty much in the same place.
The hospital genetics department found that I am a positive match for the PTEN gene Hamartoma Tumour Syndrome. This broadly means that I don’t have normal genetic control over angiogenesis, form scars badly and have a much higher risk of cancer throughout my body. I already have had a diagnosis of breast cancer and now have pre-cancerous changes of the womb.
This probably overlaps with a post that I read from someone else on this space about anti-angiogenic drugs for AVMs and dural fistulae, and yes, my neurosurgeon is convinced that I should take his advice and go on Sirolimus medication. My body and mind are completely wrecked after 14 hours of craniotomy surgery and I disagree for now.
I think I can cope with the gene defect diagnosis because at long last, I don’t need to put up with the “oh, you’re so unlucky” excuses from my consultants and I can tell them something concrete which they can go and read up about…or ignore as I have now found out. As part of my craniotomy, one of the interventional radiologists did angiographic imaging to give my surgeon the most accurate information on my brain in real time. At the end, my femoral artery was plugged with an Angioseal device. My patient consent was ignored/forgotten about.
Roughly 2 months later, I have hardening and scarring thickening around my groin puncture site, pain and weakness around my right leg/hip area. The vascular surgeon is telling me to wait until it has all dissolved and completely ignored my explanation about my PTEN gene defect increasing the risk of my forming an artery-venous fistula. I’ve been told by her that if I don’t accept an appointment of an ultrasound examination for my femoral artery in July (I have begged for June but been refused), I would not receive another appointment. The ultrasound department have told me that they could have fitted me in but would have needed the consultant’s approval. My GP has told me that I am being bullied and he is making a referral to another team of vascular surgeons at another hospital.
My neurosurgeon is not getting involved at all. I am nearly always in tears but believe that my care at that hospital has now completely collapsed. They are offering no acknowledgement of post-surgical trauma that I have also experienced (was shouted into a waking state but whole body stayed paralysed and I couldn’t see but no-one reassured or explained things to me and my neurosurgeon has no comment).
Am I going/gone mad? I have a horrible feeling that I must change neurosurgeons. Please, please does anyone have some positive recent experiences with neurosurgeons in Oxford, UK, or London?
Hoping that everyone is as well as possible.
Oh my gosh!
That is horrific on many fronts! Were you seen in London or Oxford? (We’ve had one disappointing piece of feedback about John Radcliffe previously, so I’m suspecting JR).
My neurosurgeon was a similar nightmare and largely unsupportive and pointless (I was seen in Nottingham) but my consultant interventional radiologist I’d walk a long way for. Your genetic discovery is a nightmare, too, but really “good” to know.
I was actually being treated in Southampton and yes, I honestly think that my neurosurgeon has got skills in doing careful and conscientious work during an operation but is also completely unsupportive and heartless when things go wrong in post-op recovery. All I needed from him was acknowledgement and validation and a clear offer of his help in any way.
The latest communication from my neuro nurse is that my surgeon can offer me a head MRI scan because apparently I don’t want a cerebral angiogram. After all my tears and complaints, he’s still avoiding/missing the point entirely. If I need an angiogram again because the health of my brain really needs accurate assessment, then yes, I will grit my teeth but insist on light anaesthesia/sedation as the past three times have been utter agony. What cannot happen is for the health and state of my femoral arteries to be ignored as if nothing important has happened, particularly after this awful Angioseal device has been implanted into me
My paralysis immediately after the operation has passed and I’m guessing was due to mishandling of anaesthetic rather than brain trauma. I’m just very sad that I can’t feel grateful and joyful.
I just hope that my own PTEN genetic defect diagnosis might be of some help to someone else; it has been like running into yet another brick wall but I have always believed that if you can develop an understanding of what is happening, it’s harder for fear to take hold.
Well, if you’re looking for hospitals in London or Oxford area, National Hospital for Neurology & Neurosurgery (“NHNN”) in Queen Square in London gets the thumbs up from me; Royal Free Hospital I’ve seen mentioned by people; and I’ve also seen people reference Queen Elizabeth Hospital Birmingham.
There is also John Radcliffe in Oxford but I think it was @Mickeboy who had an interesting time there.
I’m encouraged by your GP. Very nice standing up for you as a patient (and i agree with them). To recognise it as bullying is really helpful.