My Update - Dural AVF Embolization

Types of Avm's Brain DAVF
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Hi all,

I just wanted to give an update on my story. Part 1 here.

I’m still waiting for my embolisation. Back in late November / early December I was told I should expect embolisation in “March / April”. Each week that goes by, I’m feeling very gradually more poorly. I’m not sure I’m as poorly as a lot of people here but I’m feeling a bit more grey about it as time goes by. I do have good weeks but the last two have been more difficult.

I’ve got a Dural AVM or AVF in my right occipital, with possible thrombus in my right transverse sinus. It is giving me ever louder pulsatile tinnitus and despite cutting out stimulants such as coffee, chocolate, alcohol, I’m regressing to beyond the point I was in November. Initially cutting out the stimulants worked and felt like a miracle cure but slowly, steadily I’m regressing, indeed I’m sure I’m more poorly now than ever. Sleeping is difficult due mostly to the dizziness / pressure. I’m propping myself up with min. 3 pillows to try to reduce pressure (but who can sleep like that?!)

The combination of AVM and possible thrombus is giving me “reflux” in my head, increased pressure back-inflating the veins that would normally drain towards the heart through my transverse sinus (I assume). It makes me feel pressured and a bit “dizzy”. Not likely to fall over but disconcertingly “wrong” somehow.

I’ve called the hospital about three times over the last 6 weeks or so, as my symptoms have changed, to validate whether they are worried by my regression at all and so far “no”. Indeed, I called on Tuesday and my current estimate for being seen has gone back a week rather than forwards. Definitely April rather than March. I know the NHS has had perhaps the worst / most challenging winter for a long time, so to be expected I suppose. I hope by the time I get to the front of the queue, embolization is still the right treatment to sort me out.

On Monday, I had 5 seconds of extreme pressure / dizziness, beyond anything I’ve ever had before. I was convinced the darkness was going to fall but no, the darkness somehow stayed away. Advice from hospital was if I have a sustained significant event, to go straight to A&E / ER. But re my brief extreme dizziness, if I should start to have several such events to go to my local doctor for assessment & referral. Personally, I think three sets of extreme dizziness will be enough to send me to the doc!

So, I’m sure I’m not the worst affected person here: there are some proper heroes in our community: but I’m having a more challenging time than I had been and thought to share life waiting for the NHS.

Any thoughts, advice, encouragement from others very welcome: we all need to lean upon each other from time to time.

Lots of love,

Richard

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How is your vision?
I had a right occipital/parietal rupture and looking back one of the signs I ignored (thought it was stress) was dizziness and blurry vision.
stay strong and keep pushing the doctors.
stay away from the stimulants and working out…keep the blood pressure down!

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Richard, sounds like a tough go for sure, the time until treatment is sure troubling. I would imagine the time is ticking by so slowly, partiularly with the symptoms you’ve described, wow. You’re a rock on this site and always very common sense, make sure you pay attention to your own advice! When I had my bleed I didn’t listen to my wife and go to ER for a lot longer than I should have, luckily it didn’t cause more significant damage but it could have. I just say, don’t take any chances, you know your condition better than anyone and if you’re worried you should get the checks done. Take care, and I will be thinking of you. John

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Prayers for you Richard. Hang in there. I’m having one of the worst years of my life . I still smile and try to make the best of every day. I hope you get treatment soon and start healing.

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Hello Richard,
I too had problems with the NHS and it was a real battle over tests. I had a consultant who could neither manage timelines or expectations and a support staff administrator/ secretary’s who were not really managing. Its stressful which is something it sounds like something you must minimise. Who are you calling at the hospital? I found it was most effective to call the Consultants secretary, get their e-mail address and write an email that I expressly requested would be forwarded to the consultant. Breifness is best. As they have limited time to read, ensure you include your hospital number and DOB in the subject- I know this appears basic but it cuts down messing about marrying up details.
If you are really unhappy look into another hospital and requesting your care be moved/ research consultants who specialise in your area of condition get their contact details from the hospital site and do the same thing- i.e. purely my experience- I looked at Bristol and Oxford and UCLH and went with UCLH. The great thing about UCLH is they are a national centre and the admittance criteria are different as they do not service a local community in a specific way.
Moving on to the next issue that seems unjust and completely infuriating and it takes some getting used to is I’m not sure how they are terming your surgery but for mine it was termed as elective- I find this word in this context a complete misnomer- but elective is the way this surgery is referred to and this carries with it time on a waiting list. When I was going through the system it was 3 months from diagnosis to treatment, it sounds like the hospital is breaching its targets from what you have written but you have also been transferred between disciplines so I think this builds in additional time for the institution - they would be breaching in April I guess- the number of breeches are logged on the CQC report on the hospital/ managers seek to avoid this at all costs.

I transferred my care so my total waiting time was 6 months, but I do not regret this descision for a moment as it was right person- Consultant, right team right place.
Going back to elective though, I found this difficult to handle because of the type of condition it is the term is unfairly applied in the case of AVM as one of issues with it is that once you are aware of it it carries pressures with it and the "choice " to treat feels anything but elective it’s imperative! I got very agitated about this as elective surgeries range from cosmetic to gynaecological to ones like this that are specifically for avoiding life changing impairment. I argued that I was acting in a timely manner to prevent a critical situation being reached and so strictly speaking it wasn’t really right to categorise it as elective as adenoid removal or laparoscopic treatment. The cost implications for treatment in a critical situation are much higher. Baldly this argument did work. But AVM treatment does put patients in a strange place- doctors sometimes argue as it’s congenital you have lived all of your life with it so a few more months are no big deal. ahem. Chances are however, the circumstances of discovery of it are possibly a warning shot- and symptoms vary significantly- but the experience of them are not particularly enjoyable as many experiences on this site show- I often thought what the heck is happening now??!!!
I did hassle quite a lot, but looking back I am glad I did, I did also find it helped if I used language that was like the consultants as you remove yourself from your own process of treatment/ purely as a personal experience this calmed me a lot. The calmer you stay and the less emotional you are in the interactions you have with the hospital the better- it’s almost like playing them at their own game.

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@Laura80, @Kell, @Mike5, @JD12 thanks for the support! I am trying to follow my own advice and I’m a pretty open person, so you already get how I’m managing this.

I’ve got what look like floaters in my vision, which may be floaters or something else. Optically, got those checked out last year. My optician told me last January they thought I had macular degeneration. 2016 was an interesting year.

I am on the interventional radiologist’s “elective” list. I agree it feels like the wrong label. Hence, I’m reporting to them all my new symptoms in the expectation that they reassess what list I should be on. In Jan, they allegedly moved me forwards in the list, so I went from 29 Mar to 1 Mar but have since slipped back, now in April. It doesn’t feel elective to me. I speak to the consultant’s secretary or one of the radiology nurses. They tell me that they are discussing me with the surgeon each time.

I’m also keeping myself busy with a new hobby.

Catch you later,

Richard

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All,

I’m pleased to say I’ve got a date for my embolization in early April. I went to see my GP last week and she re-plotted the areas where she could hear my bruit and sent the info off to hospital, so maybe that second, professional opinion of a GP that I do have a changing AVM was enough to trigger the invite rather than me whining over the phone. I dont know but its a good thing.

Can’t say I’m looking forward to it, but I am really.

Thanks for all your support,

Richard

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Hello Richard

I am really pleased to here at last you have got a date for
your embolization.
wish you all the best
I had mine 6 weeks ago, apart from dull ache around the groin I am back to doing everything as normal. I am seeing my consultant end of this month .
what date in April? Good luck Richard

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Hey Reena!

I’d love to know how you got on with yours! (There’s a danger I’m better off not knowing beforehand, so feel free to tell me the up side rather than the more difficult stuff, or moderate the more difficult stuff and tell me the details afterwards!). I’m up first week of April. Saw the GP again this week. She asked if I have a date. I think she was convinced that whatever she told hospital last week would have done the trick, which it obviously has.

I’m feeling fine about it. It feels important to do.

How long did you need off work (assuming you’re at work)? It’s great to know you’re good 6 weeks after but how long did it take for you to feel ok to good? If I have my op, stay off a week, then it is the school Easter holidays, I might get three weeks off work. I’ve not had three weeks off since 1986!

Thanks for following up! I wish I’d remembered to ask after you post your op.

Many thanks,

Richard

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Hi Richard,
I found it really useful to find out and read about as much as I could about the procedures as I could before having them, it meant I was slightly desensitised to what I might see and was more able to ask questions. The calmer you are as you go into any procedure the better.
Good luck
L

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I kind of agree! I feel I’ve learned a lot, read a lot, in this community. I’m pretty sure I understand the procedure. I understand less the discomfort, the poorly head, perhaps pain that I might feel post op. I’m not sure I want to comprehend the degree of any discomfort, unless it was less than someone who has been through the mill expected.

Bravery is knowing the dangers, the risks ahead, and facing them anyway, especially when called to do so or where there might be discretion in that action.

I’m not brave. Happy to be optimistic. Don’t need to know enough beforehand to have to be brave! However I agree with you that knowing what is before you can help you to be ready, to prepare. So I would still look upon advice from others with charity – that honest help is proffered thereby.

All support very welcome, in the same way that I hope I try to support others.

Many thanks,

Richard

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@Laura80, @Reena

OK, I’ve decided I’m being an utter wuss over an embolization procedure, highlighted by Laura but perhaps unfairly suppressing Reena from telling her tale. Watching Lewis Hine’s story just proves I’m being over protective, so I concur… please share your experiences and I’ll be man enough to listen.

I do completely appreciate your support.

Richard

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Hi Richard

It’s such a personal thing, pragmatism and finding the shortest most effective route through has been a thing I have tried to practice as a process in all aspects of life. It’s the process sometimes that has kept me going when things have appeared to be chaotic and incomprehensible, it helps assemble things into something navigable…

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Hey Richard

Apologies!! been down with a heavy head cold.
Answers to your questions… I have nothing worrying to tell
you. My procedure took four and half hours I had no headaches
when I came around, but felt sick and groggy. The Radiologist said its normal to feel like this after anesthetic. For the sickness
they injected some green stuff and it did the trick. Next day
I had slight headache was on paracetamol every 4 hours.
when in Wednesday afternoon home Sunday .
First week home very tired slept all day. I was back driving the second week.
8 weeks today since my procedure saw my consultant today
very happy they were able to block it.
Angiogram in a years time.
I hope this helps Richard
All the best

Reena

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Hello Richard
So sorry you are going through this- I know when the drs discovered my DAVF was end of Oct 2011 and by the time I went in for my 1st embolism in early Jan 2012 it got worse and it was retrograde…taking the blood flow and making it go backwards.
My surgery was 7.5 hours.
Mine looks like a spider which freaked me out…so warning they dont want your blood pressure to go up at all so they did what is called a main line IV which is through one of your veins in your neck and they thread it down and it feels like your heart is about to explode. I actually thought I was going to smack them so I said either you knock me or I will knock you out. So they did…when I awoke I had had a stroke and was in terrible pain. Felt like my left temple had been electrocuted. Now prior to all this AVF stuff I had a massive stroke in March of 2011 due to five blood clots forming over 3 to 4 months in my early 40’s -
The second angio I was much more prepared and did not freak out when I saw my spider DAVF which is on my left side kind behind my ear. My occipital lobes do get irritated after - I think I was off for 6 to 8 weeks and went back to work part time but again I had other complications because of the 1st stroke. I am also allergic to Iodine which they use and they do use some radiation so you might feel sick a bit after and know the pain pills will make you constipated so get some juices and stool softers ahead of time to flush the Iodine and radiation out of your system. Best of luck to you!

Angela

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@Reena, @Angela4,

Thank you both! Everything the hospital say is in line with Reena’s account but if I were to worry, it would be that my AVM or AVF has changed since anyone took pictures of it, back in September. It feels rather more extensive and the degree of dizziness is greater. So, we need to see what the current state of it is and go from there.

The plan is I go under general anaesthetic for an angiogram, then stay under for the embolisation, so I won’t know what’s been found or what the plan was until I come round. It’s not normal to do an angiogram under general but this our plan, given one of my other limitations, not AVM-related.

Reena, I’m really glad you’ve had a successful outcome! That’s exactly what we are all looking for!

Wow, Angela! You’ve really had a journey! I’ve definitely got a bit of “retrograde” flow going on. My consultant in the UK calls it “reflux”. Most of what makes me feel poorly is the reflux, I think, so I’m keen that we get it sorted. It’s proper dice-throwing stuff, though. Impossible to know what I’m in for just yet.

Anyway, thanks both for letting me know. The adventure begins!

Love,

Richard

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Hi Richard,
Just want to wish you all the best for Monday, everything will go fine and you will soon hear the words avm free!!!
Amanda.

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Amanda,

Thanks! I’m looking forward to it! I hope you are doing ok: has your tiredness gone away? I can see you’re upon your “second anniversary”, so hoping you’re doing well.

You were one of the first people to welcome me into this community, so very special.

Very best wishes,

Richard

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Richard
tiredness is still here☹️ I have doctors Monday so hopefully he can do a blood test and find a cause. I work with children with complex behaviour issues so I’m thinking it could be just mental exhaustion lol. At weekends I do not need my afternoon sleep and I do more physical things then. Will keep you updated!!
Amanda.

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:frowning: get well soon!