Now dx as AVF, and angioplasty surgery upcoming

Hi,
I had done an intro and general discussions a few months back when I had finally gotten a possible dx of AVM after over a yr of pulsate tinnitus.
Last week the neurosurgeon had the results of the angiogram and discussed with me. He said that the left artery at the back of my head had a hole in it and the vein connected directly into it and was pulling blood from the left artery as well as the right.
Endovascular section of Lower VV fistula. which I think means its an AVF.
All preop is done except meeting with the anesthetist, and getting the surgery date, but he said it would be September. I was tested in office for Steal syndrome and told I donā€™t have it.

I now wonder since I have lost over 60-75% of the blood supply from my arteries, how much it has affected me. I know over the last few years I have noticed several things: My BP has dropped, my Pulse Ox is lower, Im more ADD and forgetful, Iā€™ve got altered taste and smell. So I am hoping things go well and curious as to what will change following the surgery, both good and bad.

I know there is a wealth of knowledge on here. Does anyone have experience with this?

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My BP prior to my embolization was low and was closely monitored during and after surgery before it returned to normal. I now take BP meds to ensure it remains stable. Iā€™m old, I forget stuffā€¦the interesting comment was on the altered taste and smell. A lot of food I loved prior to my bleed and subsequent embolization I now find taste/smell entirely different. I lived on chicken noodle soup for months because it was about all I could tolerate. And ice cream. I remember staying in a hotel the night before I was admitted to hospital as it was out of town, and the smell of the room stayed in the back of my throat for months; I still get a taste/smell of it without warning. My husband says he couldnā€™t smell anything but itā€™s embedded in my memory. My diet has totally changed to accommodate these quirks.

Catherine,

I had a dural AVF discharging into my transverse sinus, with some reflux / retrograde flow going on at least extracranially (and presumably intracranially, too). I had an embolisation in April.

I have to say I do not feel fixed by the embolisation but my doctor says the diversion of blood flowing through the fistula was significant. As a consequence, his view is the pressures and flows in my head have changed significantly. As the subject of that change, I can say it is probably a really good thing to have got rid of the increased stroke risk but by golly, my head feels quite strange. Doc says I need to be patient and get used to the new feel.

Soā€¦ if youā€™ve got a big diversion going on, donā€™t expect your head to feel perfect post op. It might feel quite strange afterwards for quite some time. If I turn out to be wrong and you feel perfect afterwards, tell me please and Iā€™ll go argue with my doc! :slight_smile:

Very best wishes,

Richard

HI JennyS , Thank you for the reply. I can taste smells and sometimes they just hit me when they donā€™t even exist, so your comment was interesting. Thatā€™s been going on for about 4 yrs, the altered taste for 2 1/2 yrs, the tinnitus for 1 1/2 yrs and the blood pressure drop for 1 1/2 yrs. My hope is that it doesnā€™t get worse after and rather that whatever is going on is making it this way and it will get better. Has yours improved at all over time?

Here to hoping for improvementsā€¦

Hi Richard,
I am def worried about the ā€˜changesā€™ and how my head will feel after, its such a change in blood flow there has to be some change in how Iā€™m feeling/functioning, right?

Sorry its been so tough for you. Iā€™m hoping for more positives to weigh out the negatives, but will worry until I know for sure. Iā€™ll let you know though if its a good outcome.

I did hear back from the office today and the neurosurgeon is away on holiday for a few weeks, so I will not hear back for a surgery date until 3rd week of Sept, Its looking like Mid October.

EVERYTHING has changed since my embolization. I had suffered from pulsatile tinnitus for 5 years; it was the first clue that something was wrong. The noise was enough to drive me insane. My life degraded over those 5 years until I had a bleed and was near death. The bleed was in October 2015, coil embolization in January 2016. Thatā€™s when I got my life back. The PT noise stopped completely, the headaches stopped, my BP returned to normal and all other symptoms stopped or improved. Even though Iā€™ve been left with a weakness on the left side (I walk funny) and I have diet issues (really picky about what I eat due to smell and taste) Iā€™m 1,000% better than I was before surgery. So my life has changed, so what. Iā€™m pain free and noise free and the rest I can live with. I use the treadmill daily to help with mobility/balance; Iā€™ll never run a marathon or get into weight lifting but who cares? Life is slower now and the bonus is that, after nearly losing it all, my husband and I have never been closer. Itā€™s my new normal and I embrace it. Itā€™s the best that I could hope for you as well. Good luck with the journey.

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Catherine,

Iā€™m doing OK. The challenge Iā€™ve been through doesnā€™t feel the worst imaginable. I think Iā€™ve done OK. I wanted to feel immediately fixed post embo (and couldnā€™t see a reason why that would not be the case) but it hasnā€™t played out that way. If we have big diversions going on, changing that, so far, seems to give a new balance that sometimes feels as bad as my original symptoms (e.g. about Jan this year). In reality, I donā€™t think it is as bad as that. Just not as fully recovered yet as I had hoped.

Jenny, both,

I mentioned somewhere recently that Iā€™ve been reading ā€œMigraineā€ by the late Oliver Sachs. In there, he talks about ā€œparaesthesiaeā€, which are excesses of sensation. One of the typical representations of a paraesthesia is tingling in the sensitive areas of the body, e.g. the hands, face, mouth, tongue, lips. Another example is that of exaggerated taste, so something tastes unreasonably stronger, more acute, but often in so exaggerated a way as to be distasteful, unpleasant rather than pleasant, euphoric.

I canā€™t readily find an example in the book of taste paraesthesia and I mention it not because what you have is ā€œmigraine-relatedā€ but to show that effects in the brain can drive such sensations. I have found terms online for altered taste, such as ā€œparageusiaā€. Hope this is useful.

Very best wishes,

Richard

Hi, Iā€™m certainly worried. Its a rare type, Vertebro-Vertebral Arteriovenous Fistula, but Iā€™ve had no bleeds or problems yet. Iā€™m hoping the procedure goes well and is successful. If not it can lead to paralysis so I worry what could go wrong in surgery because, well, its my brain, its my functioning. But Iā€™m sure you know the worries. I donā€™t feel that I can talk to my spouse or my children, I donā€™t want to worry them. But I worry. No matter how much meditation or self care I do, my mind ends up back to wondering and worrying.

Jenny, thank you for sharing. I am still at the point of hoping for good changes while Iā€™m worrying.
Richard, I def have parageusia. Buts its weird. My sister is experiencing much the same thing for about a yr after a flu, so at least we can complain to each other lol. I had garden raspberries and they tasted wonderful, then I had ONE store bought raspberry and made a toddlers disgusted faceā€¦ What I was tasting?.. Imagine a raspberry dipped in a combo of cheap cologne and hairspray with a dash of paint thinner. No sign of a raspberry taste in there.

Still trying to read more, there are so few research papers on the procedure. The surgeon wants to use the glue to close, = permanent. Iā€™m reading to find out the risks, and also the possibilities of improvements. It does seem that my neck pain may get better, and the loud whooshing will hopefully be completely gone.

Catherine,

Gosh, thatā€™s a new one on me (VV-AVF). I can say I know almost nothing about VV-AVFs but if you fancy sharing your story for future AVMers or just need to talk to us about worries, just blog it out there. Tell us what youā€™re thinking. Weā€™re all here for you!

I assume angioplasty means inserting a balloon rather than a coil or glue embolisation?

From what Iā€™ve read, Iā€™d say the risks specific to you, if the fistula affects both left and right Vertebral Arteries is ā€œwhatā€™s the plan?ā€

  • Does the doc think he needs to ā€œsacrificeā€ one of the arteries (this means completely block one) but youā€™ll have enough collateral circulation to be able to lose it (we have left- and right arteries and veins of all kinds, where losing one is OK. My doc talked to me about perhaps having to sacrifice my right transverse sinus)
  • or does he/she think the op can be done without any loss of either artery? Sounds best, obviously!

If the doc thinks there will be a sacrifice of an artery or a vein, you could ask about the possible implications of that artery or vein.

If your fistula involves both VAs, is your pulsatile tinnitus (whooshing) in both ears as well? Because my fistula was discharging into my transverse sinus, which is closely connected to the left, my pulsatile tinnitus was sounding into both ears.

Hope it helps to ask about it. Otherwise, just nudge me to shut upā€¦ the idea is to be here to help but sometimes I get it wrongā€¦

Very best wishes,

Richard

I had an AV fistula for about 2 years. The pulsating stopped for 2 months then came back. I chose to have my operation before it became an emergency as I live about 1000 miles from the hospital. They went through the groin up my artery and on the other side up the vein. They glued the fistula and I was released from the hospital the next day. I have no more pulsating and they say they got it all. I do go for an another angiogram 6 months after the operation to see how things are. I was terrified of what could happen if I had a bleed out. I was afraid of getting the operation but now that it is all done it was the best thing for me.

Hi Richard,

I know very little about it. Iā€™m just learning day by day since dx last week. I feel like Iā€™m just unpacking this piece by piece. It does help to ask, answering helps me to sort it out.

I think I used angioplasty as a wrong term. I think its an angiogram heā€™s doing.

He explained that the left artery has a vein pulling all the blood flow from the left artery as well as a signifiant amount from the right. That he plans to go in and attempt to close, with glue, the opening at the vein, ā€œPlan Aā€, but if he is unable to do this he will close the artery, ā€œsacrificeā€ the left artery. He explained that I will be left with more blood flow than I currently have.

The fact that it was pulling from both explained the loudness, and why I was hearing the PT slightly on the left side as well bc of the loudness of the pull.

I was asked about falls or injuries and reading it says it is typically caused by blunt force, etc. Iā€™ve had none of this. I do recall when I was sick and coughing terribly that I heard a very loud pop in my head like nothing else. I was worried and concerned about it. There was a sensation that went with it, but nothing much. I donā€™t recall exactly when that happened.

On a lighter note: They had a couple of residents there, one local and one from another country and they asked if they could check me out. I was glad to have them do this bc I understood that it was a rare opportunity to put a face and experience to what they learn on paper. They were discussing the PT and how loud it was in the stethoscope and how it was louder for me. I laughed and confirmed it was very loud in my head.

I read an article yesterday that included angioplasty, so it could be relevant. All I know about it dates from yesterday, which is that it its effectively a balloon, inflated with a saline (+ something else, itā€™s think). I assume relevant for large vessels.

The article I read included a case of sacrificing an artery but because of alternate flow, no issue to the patient.

I re-read your initial postā€¦ you said lower VV-AVF. Any idea which vertebra it is at?

Various doctors were fascinated by my PT. Some people get upset that the doctors are more interested in the uniqueness of the ā€œcaseā€ in front of them but I was quite excited to share what I had with them. The ENT consultant who confirmed my bruit was fascinating to talk to upon my initial diagnosis. I made his day, if not his week; a junior GP I saw at one stage asked very kindly if she might listen to it (as she might not meet many. I thought it good to train her in what it sounds like for othersā€™ sake, so was keen to let her) and a doctor who was examining my eye-sight was quite keen to ā€œhave a feelā€: we didnā€™t need a stethoscope, my reflux could be felt on the outside of the back of my head!

Nothing I read yesterday made a VV-AVF sound more difficult to treat than any other embolisation, just a contrast on different cases and use of a few different accesses and ā€œocclusionsā€ (ways of closing). There are always risks, though ā€“ I would say specific ones to what is fed by the relevant blood flows, and general ones like having an adverse reactions to anaesthetic, or materials, e.g. the angiogram contrast material, or the risk of a bit of glue (for example) detaching and blocking the wrong place.

I think the vascular access steal syndrome was a check to see if your VV-AVF is causing you any kidney damage, so a ā€œnoā€ on that is good but if you ever get any issues with kidney function in future, worth linking the two things again. Caveat as alwaysā€¦ I read that only yesterday as wellā€¦ Iā€™m not imparting knowledge.

Hope all this helps!

Richard

HI Richard,
Iā€™ve been about reading angioplasty, coil and glue. I have some questions when he gets back from holiday next week.
I need to read a bit about the glue, its puzzling to me how it works.

Not so much a difficult surgery, but extremely rare. Iā€™m hoping the surgery is uncomplicated. I work as a Crisis counsellor and need to have all my faculties in order to do my job. Certainly the very loud PT being gone will help in hearing ppl, but I also need to be okay.

As for location, he wrote lower vv avf, he showed me a place that was inside the back of my head. Iā€™m assuming itā€™s straight back from my left ear a couple inches up from the base of my skull.

Adverse reactionsā€¦ I had reactions to the dye for the contrast CT and worse for the angiogram. They expect it to be worse again this time and are aware. Iā€™ll be under a general and intubated. Hopefully they check that my throat hasnā€™t swollen before taking the tube out b/c they wonā€™t be able to get it back in, and Iā€™d end up with a hole in my neck. Iā€™m considering using permanent marker to write ā€œallergy to contrast dyeā€ on my arm, or foreheadā€¦ havenā€™t decided.

I do already have mild kidney damage with unknown origin and it continues to slowly progress. Iā€™ve been getting annual kidney stones (sometimes x2) for 15yrs or so and a family history of kidney disease but no known disease process to pinpoint as a cause. I will mention this to my urologist at my upcoming appt.

Iā€™ve been reading further about some ongoing affects of the redirected flow and it lists possible neck pain, headaches, dizzyness and I have all of these so it will be interesting after the surgery to see how I feel. with my asthma and this AVF sometimes I wonder how oxygen is getting to parts of my brain at all! lol

Catherine,

I had an embolisation with PHIL glue back in April. Itā€™s not wholly pleasant but Iā€™d say it is fine compared with any alternatives. I believe PHIL (precipitating hydrophobic injectable liquid) is not widely used yet: Iā€™ve never seen anyone else mention it on here: and is perhaps more for the benefit of the radiologist than the patient from what I did read elsewhere: easy to use, quicker to get the patient in and out of theatre. When I came round, my mouth tasted pretty yuk and the nurses nearby were saying ā€œwhatā€™s that weird smell, like popcorn? Oh, hang on a minuteā€¦ has someone just had an embolisation?ā€ Yes, it was me, breathing out the solvent. I smelled strongly for about 24h. It doesnā€™t taste like popcorn, either. But, as I say, not a bad experience.

Hospital asked me about allergies and intolerances and if you say ā€œyesā€ in the hospital I was in, you get a red identification wristband with details on. Marker pen at the top of each leg might not be a bad idea, either!

Where you describe your AVM is really not far from mine. Mine was Right occipital dural, so take the very mid point of the back of your head, step right 1.5", maybe down a tiny bit and thatā€™s where it was. However, it was inducing reflux flow in a bunch of veins, including a patch in the same space, on the outside of my head on that right hand side, from the bottom of my skull, reaching up to the same level as Iā€™m describing my DAVF. If yours is level with the bottom of your skull at the back, feels very similar. As we know, I had PT, too.

Iā€™ve had a longish journey to feel well. I would say I felt less well last week, some of the week before but pretty good today and much of this week. Bit stiff neck (but the upper part of it / the back of my head / nuchal area is full of glue, so perhaps reasonable). It took quite a while to be persuaded that I was getting better but Iā€™d say month by month, I am getting better.

Difficult to know whether to describe my head feeling as ā€œdizzinessā€ exactly but perhaps a motion sickness occasionally. The sort of feeling you can get in the head if an aeroplane takes a sudden drop, or youā€™re on a swing and your head is not in the mood for it. A bit like that. Not extreme but bothersome as to whether I just need everything to settle, or indicative of impending blackness. My doc persuades me that I just need to get used to my new pressures and I expect one day the feeling will have faded.

Good luck! You sound very switched on, pretty calm about it and weā€™ll informed. As decent preparation as you could do, I think!

Best wishes

Richard

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HI Richard,

Some similar experiences for sure. Mine is probably a bit lower and not dural, less complex. I hope that means that recovery will be easier, but who knows. I canā€™t imagine having the glue external vs. internal and feeling so ā€œoffā€ as you are. We are taught to listen to our bodies, but youā€™re being told its fine, which canā€™t feel very helpful.

Iā€™m not looking forward to a solvent in my head after reading a bit on it and hearing your experience. Iā€™m extremely sensitive to chemicals on the best of days and already smell things which arenā€™t there, this sounds like a nightmare to me. These days I have to avoid GMO foods, chemicals, etc because of how it impacts me. Iā€™m not sure a coil sounds like a good alternative for this procedure though.

My dizzy is if I turn my head quickly or do head motion quickly, and it is more of a light headed queezy. If I get up after kneeling down I get blackness and never sure if it will clear or Iā€™ll find myself coming to with people staring down at me.

Iā€™m usually pretty calm, but Iā€™m grateful for the time to read and educate myself rather than this being an emergency situation, which it most often is. I get to think I have some sense of controlā€¦ until I donā€™t. lol

I THINK going dark when getting up is a blood pressure thing. i.e. if it is caused by your AVM, it is to do with the short cut meaning that some point in your brain needing decent blood pressure isnā€™t getting it because the blood is nipping round the AVM and back to your heart rather than giving you enough pressure where you need it. Plugging the gap should fix that.

Re the soreness post embo, thereā€™s no way to know if my situation was more affective than yours. I hope so for your sake. Iā€™d say my discomfort post op was the tissue around the embo getting upset. Iā€™d not heard of others apart from Angela having so much discomfort post embo, so was surprised it was so uncomfy. It does sound like you are sensitive to things, so you might feel similar but its impossible to know whether not so bad or more affected.

Have you got dates youā€™re aiming for?

Richard

Neuro is back next week, got a call with dates. He is scheduling me for his 2nd week back - Sept 26, so Iā€™m higher in the priority list that I thought. Hubby is planning to talk with his boss who is a neurosurgeon who teaches at the university. Hubby is getting worriedā€¦
I was looking at my calendar and its actuall been 2 yrs and 4 drs. to get here and Iā€™m both terrified and hopeful. I need my brain forā€¦ everything. Iā€™m terrified because rare does not equal routing procedure.

Iā€™ve been very stressed with some unbelievable work crap that I really donā€™t need!

Iā€™m having a familiar feeling returning with so much going on lately. There is numbness/tingling in my lower arms/hands, lightheadedness, dizziness, headache.
I know by the physical feelings when Iā€™m anxious, upset, it makes the pulsate tinnitus sound strained and quick. = bp and pulse is up. It can lead to an extra heart beat, which is starting up again. Iā€™ve learned how to calm myself and lower my pulse and blood pressure. Having the PT for almost 2 yrs now its like having biofeedback 24/7. I know I can meditate or distract myself and it will settle and the extra pulse will go away.

Thinking back, Iā€™m thinking this all started with a really loud pop in my head, Sep 2015. PT by Mar 2016, I was at the hospital that spring b/c of what I thought might be something heart related, it turned out to be when the extra beat started, and my stressing over how it felt. Iā€™ve had so many appointments in that time to get to hereā€¦ Iā€™m just so fed up with appointments, I really hope life gets better.

Its normal to be worried about the unknown but youā€™re among a lot of people here whoā€™ve been through this successfully.

My own view is that it is a rare condition to a Primary Care doctor but by the time you get to see a neuro in a big city, you will be with someone who sees these things often enough.

I too felt I could calm myself down because of the pulsatile tinnitus:

http://www.avmsurvivors.org/t/the-process-of-diagnosis-takes-a-long-time/15661/12

Its been a long journey but youā€™ll get there. There is no benefit to worrying, and so long as youā€™re convinced you need treatment, then the risks of surgery are worth facing.

No point in worrying before you see the neuro and he can tell you what he thinks. What do you think your next appointment is about?

Very best wishes,

Richard

thanx Richard,
Sept 26 is surgery. Starting to stress a bit b/c of this, its 11 days away, its becoming very REAL now, Iā€™m worrying about if I will be functioning well enough to be returning to work as a counsellor in a couple weeks, I need my faculties, esp in light of the crap at work. Brain, donā€™t fail me nowā€¦ lol

Catherine,

For once in your life, you need to come first. When you go in, you are on holiday. Not working. And you just go through the processes with the hospital. Iā€™m a complete wuss and actually, I got through it fine. It was so fine, I had no concern about having to have a return trip. It was unpleasant, as Iā€™ve described elsewhere, but really very copable-with.

I really think a catheter embolisation is the least invasive way of doing any kind of surgery. Itā€™s brilliant as a concept. ā€œEndovascular sectionā€ Iā€™m assuming is the same thing.

My wife, if she finds she has some illness on a Friday, will worry herself completely all the way through the weekend until she can get an appointment early the next week. I think itā€™s fair to say every time sheā€™s done that, whatever the concern was is dismissed by the doctor, or turns out to be something trivial, easy to fix, rather than the nightmare scenario sheā€™s tortured herself for half a week about. I now consistently tell her, ā€œyou canā€™t worry about that until you walk into the doctorā€™s officeā€. Thereā€™s nothing to be gained by it.

Soā€¦ do the prep you need to do but otherwise, distract yourself with normal life, keep busy and tell yourself that there is no benefit in worrying about it before the morning in question. I can help myself this way and I hope you can, too.

When you get out, it could be you feel 100% within a couple of days. @berlin112 had a great experience recently with his embolisation but quite possibly you will need to take it easy, maybe really careful after your op. But you deserve it, OK? Itā€™s important, so value yourself enough to allow it. I suspect the reason many of us discover our AVMs is that as a community, we are the people who do too much and itā€™s the extra stress we carry, the higher blood pressure that helps to push our AVM to the fore, that it starts to have effects we notice.

I hope this is constructive, a bit nagging, but meant in a positive supporting way. Because you are worth it!

For the record, although I have days when my head feels good and other days when it feels odd, it isnā€™t stopping me do stuff and I definitely feel better than I did in April, May or even at the beginning of August. Iā€™m definitely getting better. I took 3 weeks off ā€“ some as sick, one week as holiday ā€“ and Iā€™ve had only one half day off since that time off due to not feeling well, and that was because I seriously overdid life the day before.

Youā€™re on the glide path in. Nothing to worry about before touch-down.

Thinking of you.

Richard