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AVM Survivors Network

Davf worrying symptoms

#21

I think that sounds like a good plan Richard, changing the way we think about these things and staying positive …I’ll try and go with that! Finding it a tad difficult atm tho.
Had a telephone consultation with my neurologist on Monday, he reckons because my PT has reduced significantly (almost inaudible) then it won’t be necessary to do the embolisation! Has said he wants my hearing and eye check done and has requested another MRA.
I’m at a loss as to what to make of it all, do I push for the op or have faith in him saying I don’t need it now …he said the only reason they will do the embo is if the PT is unbearable and that it will not cure any other issues!
I’m thinking I should really get a second opinion but not sure how I go about this, any thoughts would be appreciated, thanks x

#22

Hi.

So you say you’re dealing with a neurologist rather than a neurosurgeon? I think your neurologist is no expert in AVMs and you do need to get another opinion. The point is that an AVM presents a stroke risk from a rupture. The bruit, the pulsatile tinnitus, is just a symptom of the AVM and is not really something to worry about in itself (in my view). It is the stroke risk that the AVM presents that we really want to look into.

Now, I do know that if you have a DAVF, the decision on whether to intervene is driven by certain factors (the Cognard scale) so maybe there is a lower risk of rupture from some DAVFs than some other AVMs otherwise there wouldn’t be a need to treat differently depending on that classification. So, it maybe your neurologist is telling you correctly for your DAVF.

I think if it we’re me, I’d want a conversation with your doc around the stroke risk and the Cognard classification. If you’re not happy, go back to the GP and express your concerns and ask to be referred to a neurosurgeon rather than a neurologist.

I would have to say that an embolization doesn’t necessarily fix everything. And I feel my learning over the last year is that post DAVF embolization quite a proportion of people have continuing issues with hearing and an audible pulse. However, in my book the main thing to consider sorting out is the risk of a rupture, a stroke. If my remaining symptoms are just side effects of redistributed blood flow (but are essentially “safe”) then ill just put up with them. Its just that question as to whether the symptoms indicate an abnormal flow from artery into vein that I think we all want to get resolved.

So if I were you, I would still be bothered about your neurologist’s view of your DAVF. I’d want more info or a second opinion, yes.

Hope this helps.

Richard

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#23

Sorry Richard my mistake, I just checked and he is a neurosurgeon, reassuring I guess. I’m seeing my GP tomorrow so will tell her about the other symptoms (as I’ve been told they’re not related to the fistula) and ask if she can clarify any risk of stroke or bled with the consultant.
I’m with you on that one, I think we can live with minimal symptoms if we know that there are no risks.
I hope you continue to feel well, thanks for the info x

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#24

Wendawes,

I relate to everything you have written. Over the past few months, really over 2.5 years I share your story. I had an embolization in June, 2018. The process was much easier than I had expected… I was home the next day, feeling so blessed… and within a week was back at work. Very little pain for me… I even had ice cream on the way home from the hospital! I did sleep and rest a lot the week I was home from work… that really helped me. Know I will be praying for you, this process has taught me so much. JoJo

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#25

Thanks for your message, where abouts was your DAVF and what grade was it, did you have all the symptoms I am experiencing prior to the embolisation?
I’m so happy for you that you feel good and were able to return to work so quickly after the op.
Look after yourself and stay well x

#26

@Wendawes

@irelandchris1 has prompted me to re-think about my post above. Plus, my wife was asking about me this morning and having explained to her how I am at the moment, then reading Chris’s post, I thought I should change my vote slightly on how bothered I was earlier in the week.

I’ve read the Cognard scale again this morning. I think the top of your post says you’ve got a IIa and a smaller one near your ear. Chris is obviously being told he’s got a I. You’ve both had doctors saying that the only reason for embolising would be to get rid of the pulsatile tinnitus, whereas my doctor was telling me that his aim was to reduce my stroke risk, hence I was more bullish earlier in the week. I think I had a IIa+b.

If you guys have got a Cognard I or IIa, the advice is that these have a very low risk of rupture, so the main reason for having an op would really be to get rid of the pesky pulsatile tinnitus, rather than really focussing on a stroke risk, because the stroke risk in these is low. However, having an embolization would reduce any stroke risk. It’s just that the doc is saying your stroke risk is already really low.

There are risks associated with an embolisation… primarily that a blob of glue detaches from the catheter at the wrong moments and scootles round and blocks something unintended.

So I think your neuro is saying (in his or her opinion) that having an embo wouldn’t have a significant impact on your stroke risk (it’s already really low) so doing the op would be only to sort out the PT. And I think they might also be saying that to do the op is about as dangerous as leaving be. You can also tear an artery with the catheter.

Does that make sense?

So having got all hot under the collar about a ridiculous diagnosis earlier in the week, I think I was wrong and in explaining my current situation to my wife and reading Chris’s post, I’ve realised why.

If any of this doesn’t make sense, do tell me.

Wishing you both the very best,

Richard

#27

yes Richard thats spot on what you say. the main reason for embolization I was told would be just to cure the pulsatile tinnitus not because of having a high risk of hemorage (mine is type 1 so states extremely low risk )

so the way forward for me they reckon is to try a masking device first to help with the PT if it doesnt help they reckon embolization is an option next year but they said I need get masking device sorted and try that for a few months first

regards
chris

#28

I had glue to close for the embolism. I had a slight headache for 2 or3 days after the procedure. My symptoms were gone before the procedure and at first they thought the fistula had we routed itself. I thought I had been healed. After they did another MRA it showed that it was still there and had started to bleed into the brain Yes it is a great relief for all that to be over.

#29

That’s amazing news! How are you feeling now, have all your symtoms gone? Look after yourself x

#30

@DickD

I’ve decided to go ahead with embolization.

in regards to risks your spot on. the reason leaving it alone is option is because by leaving it they reckon I’d never have a hemorage etc (less than 1% for example) but the procedure to embolise it carries 1% risk stroke and 2% risk to nerve supplying face so from consultant view the risk of procedure is higher than the risk of leaving it (even though procedure risk is low its still higher).

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#31

Well, in many ways, its best to do what you prefer. I hope it goes really well and you get rid of the pulsatile tinnitus. I’ve no idea which way I would choose, though having had my DAVF seemingly get worse up to the point of the embolization, I could definitely persuade myself into fixing it before it becomes a bigger issue. I’m sure these things are less easy to fix if left to get worse first.

Good luck! And thanks for sharing how you’re getting on. Anything you want to ask, you know that’s what we are all here for.

Very best wishes,

Richard

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#32

Hi all,
I found this site a couple years ago when I was first diagnosed with 6 DAVFs, I had embolization in Jan 2017 where my neurosurgeon and his colleagues closed off several veins with 80 coils. That surgery went well and I was feeling fine within a week, but my PT was still there. This embolization took 5 hours. They asked me to come back 3 weeks later because they could not finish everything that needed to be done in the first surgery. The second surgery they used onyx glue instead of coils and I got a very severe burn on the top of my head. The doctor said he wasn’t sure if it was the glue had dripped onto my scalp or if it was from the radiation received during the surgery because I was in there for 7 hours.

They only dealt with 3 of the DAVFs because they said the other 3 were smaller and close to the brain and they thought it best to leave those alone. My burn on my head took over 6 months to fully heal and I lost a chunk of hair that never grew back. My PT was still there after the 2nd treatment and then I started developing headaches. Sometimes they were at the back of my head, sometimes at the temples and sometimes at the forehead, but it seems there isn’t a day that has gone by that I have not had some type of headache.

I saw the neurosurgeon again in July of 2018 and he ordered another angiogram. This angiogram showed another vein had grown from the largest fistula. My neurosurgeon wanted to consult with another neurosurgeon about my situation to see what they should do next. They ordered an MRI (which took several months to get into) and now say that what they recommend is a procedure they have never done on one patient before. They said it is a combination of procedures they have done on several other patients, they just haven’t done all of these things together on one patient. My confidence was not real high at this point in the conversation.

So, what they want to do is more coils in the newly developed (large) vein and then they want to drill a hole in my skull and insert a tube through the hole and from there insert a stent into the artery just past the fistula to open up the artery so the blood flows through to the brain and does not form new veins.

Has anyone else heard of this being done? I am sitting on the fence thinking maybe I’ll just wait until something major happens before going ahead with this? I can live with the headaches, and although it is difficult to sleep, I can also live with the PT. Any thoughts? Apologies for such a long post.

Carol (in BC Canada)

#33

Carol,

This obviously sounds quite innovative and not very common. I’ve not heard of others having such a thing. We are not doctors, so not able to advise at all. However, what do I know?

I know that my doctor talked to me about the possible cause of my DAVF being a diminution of my transverse sinus, or a blood clot at some point having restricted the flow there. My understanding there is that somehow, that disturbed flow can lead on to a DAVF forming. As part of my embolisation my interventional radiologist told me that he had stretched out the diminution with a view to fixing that part of the problem. I don’t know that he actually fitted a stent, but a permanent way to fix it would probably be to do so. So, the thoughts that come into my mind when reading the piece above is that it makes sense to me that if you have an area that is reduced capacity of flow and is leading on to new DAVFs forming all the time, fixing that abnormality by inserting a stent does sound like the right thing to do.

Does that make sense?

How he or she does it is not in my knowledge but the idea of somehow fitting a stent to remove an underlying cause does fit with advice I’ve had myself.

I hope this helps. Very best wishes,

Richard

#34

Hi Carol…I too had an embolization for a ruptured AVM in January 2016 done at Vancouver General Hospital. The PT stopped immediately. Then in 2017 I started getting ridiculously dizzy. I went back to my neurosurgeon who ordered more scans. It seems an artery was now blocked but I am unclear as to what caused the blockage. The neurosurgeon consulted with the neuroradiology team and it was recommended to insert a stent to open the artery into the brain. This was in July 2018; a stent was inserted through the groin, not through the skull, and I was told the procedure was still new. It did work as the dizziness stopped but the artery wouldn’t close when the sheath was removed and I almost bled out. I almost wish they had gone through my skull! All ended well and subsequent scans show the artery is now open. I do live with headaches now (no PT) but they had forewarned me that headaches would happen. I treat them with heat (heated neck bean bag) which has proved helpful. Similar to what they are recommending for you I think. Good luck with this.

#35

Thank you Richard for your reply. When you say it, it does make sense. I guess my worry is the way it was presented to me. We “think” this will work…and we “want to try to do a procedure that we’ve never done before”.

I don’t know what grade my fistulas are. It was interesting reading the link you posted earlier to the Cognard scale. I had never heard of this previously and didn’t know there were different grades of fistulas. I don’t feel my doctor is the best at explaining things to me and I wish I had listened more back in high school biology so that I could understand all of this a bit better.

I haven’t had the results of the last MRI yet because I live on Vancouver Island and my Neurosurgeon is in Vancouver, so i am waiting for his phone call. His suggestion was based on what they had seen on the angiogram last summer.

My doctor keeps asking if I had a car accident or something where I suffered head trauma. He says based on previous MRIs I had done prior to sinus surgery, this mess of extra veins and these fistulas were not there in 2005. I am wondering what could have caused this. I did have surgery to pen up the sinus cavities in 2014 and it was a couple months after that my PT started. I’m wondering if something happened at that time. You said above “the possible cause of my DAVF being a diminution of my transverse sinus, or a blood clot at some point having restricted the flow there”. Can you explain what a “diminution of the transverse sinus” is?

Wishing you all the best and thank you for moderating this site to have a place for all of us to discuss what we have gone through or are going through.

Carol

#36

Hi Jenny,

Thank you for your reply! So excited to see there is someone here who also had surgery at Vancouver General! I find your story very interesting because I was told that they couldn’t insert the stent through the groin because it wasn’t flexible enough to be able to do it that way. It sounds like they learned that from your procedure. I’m glad to hear your PT stopped. Sometimes I wonder what it would be like to hear silence again. I’m sorry to hear you had a rough time with the surgery. Are your headaches all over or are they strictly where your AVM was located? Just wondering if we had the same neurosurgeon…mine was Dr. Haw. Glad to hear you are doing well. Take care,

Carol

#37

Hi Carol…nice to hear from you. Yes, my original neurosurgeon was Dr. Haw. He did my AVM surgery. I have the highest respect for the man and he has an excellent reputation. He recommended Dr. Rohr place the stent. He is an interventionalist radiologist, head of neuroradiology at VGH. He didn’t mention that it was a new procedure until the last minute but I was just looking for relief from the violent dizziness. That part worked even if it didn’t go as planned! The headaches are mostly at the base of my skull where the old feeder veins to the AVM are located. Annoying but better than the dizziness…at least I don’t fall down and grab waĺls anymore. The concern was that the artery had been injured while placing the stent but CAT scans show it is OK. The stopping of the PT was the greatest relief; it not only pulsed but squealed, honked and thumped so loudly it was impossible to sleep or concentrate. It was behind my right ear. Maybe because it bleed it helped stop the noise, I don’t know. It’s been a rough journey, I know that, and not one I’d wish on anyone. I’m in Campbell River by the way. Our local hospital is new but not very familiar with AVMs so not much help. Hope this has been helpful. Regards, Jennifer

#38

Hi Jenny,

Thank you for your reply…

I live in Nanaimo, so it’s interesting to know you are also on the island. Did Dr. Haw figure out what caused your DAVF? He said they are usually caused by trauma to the head (like in a car accident), however, that was not the case for me and he cannot figure
out why I have this.

I have a couple of theories: I have had a persistent cough for the last 15 yrs (since I had a bout of bronchitis in January 2004). The cough never went away.

Over the years I have been on different medications for the cough, some worked better than others, some didn’t work at all and I would cough quite violently about every 15 minutes of every day to the point that I was choking and holding my head in severe pain…this
went on for a whole year in 2013/2014 where no medication was working…it got to the point people would come into my office (I work for the credit union) and ask if I was choking to death…paramedics who were doing their banking stopped to see if I was
ok! I think the violent coughing may have caused the fistula (well I should say the 6 fistulas, because there weren’t any there when I had an MRI on my head in 2005). I was tested for asthma and told I had mild asthma, but no asthma medications stopped my
cough either. Finally I thought one doctor figured it out when he suggested I have nasal surgery to open up the nasal passages. In 2014 I had the nasal surgery, still no relief from the coughing. Before
having the surgery I asked the surgeon what were the possible complications of this surgery. He said the only possible thing that could happen is “because the nasal passages are so close to the brain I could nick your brain, but if I do I can see it on the
screen and can easily patch it up again!” I thought he was trying to throw some humour into the situation, but he was serious…so maybe he did something while he was doing the nasal surgery and didn’t tell me… …who knows, but I really feel the violent
cough caused all this because I would have such pains in my head.

When the nasal surgery had no effect whatsoever on my cough, that specialist put me on Gabapentin (a seizure medication)…he started me on 300mg and after a few
months of increases I was taking 1800mg a day…with no relief. I stopped taking them and a week later developed PT. That doctor told me there was no cure for PT and I’d just have to live with it. I sought out more help through my family doctor and was
referred to Dr. Fleetwood in Vancouver, who ordered an angiogram and then referred me to Dr. Haw in Vancouver. I couldn’t sleep, I couldn’t concentrate at work, it was awful…it’s still awful, but I am getting used to it now and masking it at night with music.
My two embolizations did nothing to reduce the PT.

So now they want to put in a stent and it scares the heck out of me that they have never performed this procedure on anyone else, entering my artery through my
head. I am so glad to hear that you feel you are totally cured now. Did you just have one DAVF? I’m going to have to think about this for a while. I really appreciate having someone to talk to about this.

Regards and wishing you a happy, healthy life,

Carol

#39

Hi Carol…I wouldn’t say I was “totally cured” but I’m a lot better than I was even since this past summer. It seems the referral system on Vancouver Island is routine. When my AVM bled I went to the ER in CR. The ER Dr. did a lumbar puncture to confirm blood in the spine then consulted with the Neuro consult centre in Victoria and was referred and spoke with Dr. Fleetwood in Victoria. An appt was made in his office within 4 days and we drove down…the most agonizing journey of my life. My headache was brutal and I had pain from the spinal tap site leaking. Dr. Fleetwood denied speaking with anyone from CR and knew nothing about my condition. He ordered an angio and put me on Gabapentin. The angio took another 2 weeks to book and was cancelled and had to be rebooked. That was the last I heard from him. Even tho the angio had confirmed an AVM and bleed, he never contacted me again. My husband finally reached him after dozens of phone calls. He said to try getting an appt with Dr. Haw. So my husband did, thank goodness, because by that time I was near death and Dr. Haw admitted me on sight and operated the next day. It seems to me that Dr. Fleetwood specializes in sport related injuries including concussion. Someone I know was just referred to him for a back injury. Strange. A multi tasker, it seems. Did I just have one AVM? Yes, and that was enough. The feeder veins were expected to shrink after the embolization but didn’t, resulting in severe dizziness. The local Drs. tried to pass it off as vertigo but I pushed until I got back to Dr. Haw. He said the artery on the left side was blocked and was being fed too much blood which had nowhere to go. Like trying to shoot a hose through a pinhole, his analogy. Thus the stent. You hear about stents all the time so I wasn’t concerned until I was told how rare this procedure was as I was being wheeled into surgery. I woke up to blood everywhere and a frantic effort to stop it and the vascular surgery team on standby. That ended up being worse than the stent procedure. I lost 4L of blood they told me. I think if it was me I would opt for the skull entry option you’ve been given. It would be a lot easier route to gain access. Would they remove all of the AVMs? That seems to be the only cure for the PT. And the silence is golden. Sometimes I sit in the quiet and just listen to nothing. The procedure sounds scary but are you prepared to stay with the status quo? It may be the only option. I tried to think if I had ever received head trauma and I don’t remember anything. But it could have happened when younger when you tend to shrug these things off. All I would say is that if Dr. Haw and his team are doing the surgery, you would be in some the best hands in Canada. I would be more afraid of the option of doing nothing. Let me know what you decide, if you don’t mind. Regards.

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#40

Thanks for your very detailed response Jenny. I am still waiting for Dr. Haw to call me with the results of the MRI that I had done in Vancouver 3 weeks ago. I am hoping he will be able to tell me how serious it is and whether or not he feels surgery is urgent. I’m sorry for what you went through with losing so much blood during your surgery and hope things are better for you now. I would so love to hear silence once again. I just don’t know if that is worth having them experiment …and then there is no guarantee that the PT will go away. I believe the procedure Dr. Haw was talking about would only be to put a stent in at the one DAVF. I think that is the only one of the 3 they embolized that has formed a new vein since my last surgery in Feb 2017. I will let you know what I decide once I have heard the MRI results. Thank you so much for your friendship Jenny…it means a lot to be able to speak with someone who has gone through something so similar.

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