That’s a bit of an understatement, it was intense & recovery wasn’t very linear.
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I was able to get a recording of my whoosh with my phone. Which is just bonkers to me.
Yes, I can’t remember if I told you but I got a recording of mine back in July 2016. The rustling is my hair.
The main thing it proves is that you’re not imagining the sound!
I went to see my GP in April 2016 after discovering that AVMs and DAVFs and something called bruit exist and decided that those things exactly matched what I could hear. Rather than saying to her, “I think I’ve got an AVM!” I described my symptoms, which she took as tinnitus rather than anything else, so she referred me to ENT.
I was in ENT at the end of August 2016. I did all of the usual hearing tests, sitting in the quiet room and then saw the consultant.
“So, Mr D how long have you had tinnitus for?”
“Oh, I’ve had tinnitus for decades: I’m not bothered about the tinnitus: it’s the pulsatile tinnitus I’m bothered about!”
“Pulsatile tinnitus?!”
He opened a drawer which was empty and then went to find a stethoscope. He came back and plotted all over my head using the stethoscope until he reached my right transverse sinus when he stopped moving and just listened to it.
He went to ring a colleague and didn’t get an answer.
“Mr D. You’re my last patient of the day but my most interesting patient of the day.”
“I’m not sure I want to be your most interesting patient of the day!”
“You have what we call an arteriovenous malformation. I’m going to send you for an urgent MRI.”
Then his phone rang. It was his colleague returning the missed call. He had already left hospital for the evening, so they wouldn’t meet up before golf at the weekend.
And that was the start of my journey. I eventually got the urgent MRI a month later. I joined AVM survivors on the Friday before that MRI was done on the Monday.
To cut out most of the story, I then waited until April 2017 for the embolization. As I waited, the noise of the bruit got very much louder and louder and I started to feel dizzy. The really good news is that I got fixed and despite having to wait so long I got fixed without having a bleed. The risk of having a bleed seemed to increase weekly but somehow I got away with it. I had an embolization and I’m here ten years later to witness to it.
It’s a very worrying time. How are you getting on with any discussions with neurosurgery over your needs? Are they moving you forward?
Hang in there! You’ll get through it!
Richard
I can’t get your pulsatile tinnitus clip to play for me, unfortunately.
The surgery date is April 9, and as far as I know, it’s going to occur then, if that’s what you mean.
As for me, mentally, day to day, I have some major downswings and low mood.
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Mine was 3 April. It feels a long way away but it’ll come along. Keep your mind busy with interesting things.
Try downloading the clip and then playing it. I have never got the clips to play directly in the site.
Hang in there. You’ll be fine.
It doesn’t feel like it’s far away from happening. It feels like it’s coming up crazy fast. I feel like the first half of February was over and done with in a single blink.
I think you’re doing great. You’re very much on the same line as me, just 9 years later: I first heard my pulsatile tinnitus as a faint noise in Sep or Oct 2015 and had my embolization on 3 Apr 2017. I was worried the time wasn’t going quickly enough to get to the embolization, so if it is going promptly for you, that seems good to me.
I know you’re struggling to sleep with the noise of the PT, so it’ll be a good thing to get that sorted.
I know you were also worried about infection and probably other things but I think the fact that you’re planning to have an embolization means there’s very little scope for infection: I think my wound was about a 6mm cut (¼"?) which is nothing.
Do you want to know anything about the process? What I found the operation to be like? It is done under general anesthetic, so I can only tell you how I was afterwards. It’s not altogether pleasant, so I’m happy not to describe it if you prefer but honestly I found the whole experience doable. I found the increasing noise of the pulsatile tinnitus to be enough to persuade me that the danger I was choosing to go ahead with an operation was an important danger to have to go through: I quite quickly got to that position, so while the dangers frightened me in the same way as you, I believed it was important to go through it and as I said earlier, I feel as though if I needed to go through a second embolization, I’d do so with a lot less trepidation than the first time: I think the fear of the unknown plays a big part.
If I can help by talking anything through, just tell me what you’d like me to talk about for me.
You’re going to be great!
Richard
Hello Richard,
Can I ask, your tinnitus was all the time?
I had regular tinnitus and pulsatile tinnitus. The regular tinnitus came from a nightclub many many years ago, so that was just hearing damage. Most people with an AVM don’t have pulsatile tinnitus: there are at least a couple of reasons for pulsatile tinnitus but for me, it came from the fact that my AVM or fistula was pumping blood into veins that went past my ears. If you’ve blood pumping into your transverse sinus or sigmoid sinus or possibly your straight sinus, I think there’s a good chance of pulsatile tinnitus because the straight sinus flows into the transverse sinuses which then flow into the sigmoid sinuses, which pass close by your ears.
I first heard a very faint sound like “ffff, ffff” in autumn 2015. By Jan 2016 it was louder and I started to Google about noises in the ear. In April 2016 I finally found an article on the American Stroke Association website about AVMs, arteriovenous fistulae, pulsatile tinnitus, bruit and stroke and had an OMG moment. By July 2016, I managed to record it by pressing my phone to the back of my head. By October 2016 I was feeling dizzy – it was going past my ears, so I reasoned that it was one thing. By Jan/Feb 2017 the noise was like trying to sleep next to the washing machine while it was busy pumping water out and the dizziness when lying flat in bed was like the actor/singer Dean Martin saying “You’re not [yet] drunk if you can lie on the floor without holding on.” So like @Sara-Bear, I was using three or four pillows to prop me up at maybe 30-40 degrees to lessen the pressure in my head at night. It was hard to sleep and very worrying: the progression of my DAVF over those months basically made me feel that I stood a very good chance of having a rupture while I was still waiting to get to the front of the surgery queue.
In the UK, healthcare is free at the point of need but the challenge is that the money and resources in the system are limited, so you have to wait in line. You have to trust the doctors to prioritise all of the patients in front of them to make the right decisions and get you to the theatre a little bit more than just before you’re going to rupture!
So, my tinnitus is long term. My pulsatile tinnitus happened between autumn 2015 and April 2017. My embolization fixed it all in one sitting and honestly today there’s nothing about my DAVF that I worry about. It is filled with glue and not causing any disturbance to me. I do everything in life that I expect most sixty-somethings do.
Hope this helps,
Richard
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Thank you, Richard!
I really apreciate!
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I am curious what it was like to have the actual embolization. The diagnostic angiogram wasn’t any fun at all for me, and I felt a little relieved when they said they would put me under anesthesia (and then newly worried- the breathing assist during anesthesia for my hysterectomy had me coughing up green junk for a few days, not fun).
The noise level of mine was pretty stable before I was assaulted and punched in the face in June. It’s just gotten louder and louder and louder since.
So my embolization was under general – I expect yours will be, too. So there’s nothing to tell you of the procedure itself other than it is identical apart from the placement of glue or coils or other “embolic material”. You’ll have contrast used again to illuminate what is where on x-ray.
When I went in, I hung around a lot of the day as others were seen before me. I got changed into the obligatory gown and pants and eventually got wheeled down to x-ray. Again, I waited there for an hour or so while someone else was being seen and finally got wheeled into theatre. We had a chat and I got the countdown into sleep and that was it.
I woke up several hours later in recovery and came to gently. The main things I remember were very sore testicles, a very dry mouth, bad tasting mouth and the nurses telling me “someone’s had an embolization: it smells like bubblegum in here!” I’m sure I had a sore head – perhaps thick like having had lots to drink – but I was coming round from general, so there was pain relief going on.
I met my wife and then got wheeled off to neuro ICU for the night. In ICU, principally the drugs were wearing off, so I was given oramorph to deal with the headache but while I obviously had a headache, I don’t remember it being awful, you know. It was ameliorated by the oramorph and it was all perfectly doable. The main thing I got from looking around in neuro ICU was to see people who had had different operations from me – I remember one person opposite me who had had a craniotomy with no replacement of the bone flap and in the same way as in the My Amazing Brain documentary, a massive concave depression in his head: he was definitely unwell and I concluded overall that I was the healthiest patient in the room.
I needed some things to drink: my mouth was very dry and the solvent from the glue tasted nothing like bubblegum. It was unpleasant but perfectly doable. I stayed in neuro ICU overnight.
The following day I moved to the neuro ward and stayed another night. My consultant came to tell me he was convinced he had embolized the DAVF in one sitting “I used lots of glue!” And therefore he didn’t feel a second embolization would be likely to be needed. Originally, he had warned me that he might need to take two approaches to it.
The pain drugs are great. They really do keep you nice and comfortable.
I lay flat for about two days, I think. The team came to shine a light in my eyes regularly through the day and night, looking for signs of oedema. It was all about pain management and making sure there was no swelling going on, no significant irritation from the contrast material or the glue, or a bleed happening.
Then I went home and switched to paracetamol/ Tylenol. I stayed off work for three weeks overall – the longest “holiday” I’ve had since the school holidays of my youth! I’m sure the paracetamol was needed through at least two of those three weeks. Even as I went back to work, I ended up taking paracetamol from time to time. I found raising my head at an angle set me back on one occasion in particular and I resorted back to the drugs briefly but the whole thing was eminently gettable throughable.
I didn’t have a bleed: there’s a much harder route back if you have a bleed somewhere along the way but we can see many people in this forum have fought their way back to health after a bleed, so there’s good confidence we can draw that we could get through that if we needed to.
Here is the detail of how I felt post op:
Carry on asking anything you need.
Lots of love,
Richard
Thank you for sharing your experience. A couple things stood out to me-
You got to wear pants? I only got to have a gown for my angiogram. No other clothes besides non-slip socks.
I’m not sure I understand the bubblegum thing? I’ve never heard anyone joke about chewing gum like that here in the US.
As for my own upcoming embolization, I will be under anesthesia. Which is both a relief and a concern. Glad I won’t be consciously aware of things, worried I won’t wake up from it. I had really serious delayed awakening from the anesthesia when I had my hysterectomy, and my body wasn’t breathing on its own, leading to additional time on being ventilated. I had to have the cannula with the oxygen blowing into my nose for a day after, and stayed overnight at the hospital. They wouldn’t release me.
The pants are nothing to get excited about! I live in the UK, so when I say “pants” I mean underwear, not trousers. I forgot that would translate badly.
The smell of the solvent apparently smelled like bubblegum – the kind of pink blow up gum. Obviously the solvent comes into your bloodstream and then you breathe it out and it’s obviously a smell that the neuro recovery staff recognise. There was nothing bubblegummy about the taste in my mouth: it was just the smell of the solvent.
Always talk to the anaesthetist about your past experience and they will look after you. I don’t know enough about anaesthetic to know whether it was simply a slightly too hefty dose that took you a bit further than was helpful. Definitely talk to them about your past experience. If the operation was in the same hospital, they may be able to research what & how much you were given previously. If it was a different hospital, maybe you might ask for the records for that to share with the neuro team. Even if they don’t have access to those records, I’m sure mentioning your past experience will help them to dose you appropriately.
I didn’t even get to have underwear.
I’m honest with my anesthesia team - they need honesty for my safety. It is a different hospital, but I share my records openly with my providers. The upside is, every other doc of mine, when I informed them of my upcoming embolization, has had something positive and affirming to say about my neurosurgeon, which is good. He’s well-liked, and clearly respected. I’m taking that as a good sign.
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All sounds good 