2nd Opinion Referral Approved!

General
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I got a call this afternoon that I have an appt set up at the University of Michigan for September 19! We’re going to run some tests and meet with one of their top otologists to look primarily at the ear problems - because the ringing in the ears, the headaches, the dizziness, and hearing loss all seem to be most likely linked. Hopefully we’ll be able to understand what was going on inside this screwed up head of mine and maybe even, just maybe, figure out something that might help. While I’m not optimistic that it will make things better, I am hopeful that we will understand more of what had happened and is happening and can then deal with it better.

Does that make sense?

Tom

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Completely. Good luck!

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Very exciting news Tom!

Will be thinking of you on September 19th and looking forward to hearing how it all goes,

Best of luck

Corrine

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@TJ127
That is great news Tom! Can’t wait to hear what they say.
Angela

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Hi Tom - just curious if the sound in your ear actually sounds like ringing in the ear or possibly a different sound. My husband said he heard what sounded like breathing in his ear.

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Mary - that depends on which ear you are talking and when. Prior to January 30 (the day) occasionally it would be true ringing in the left ear but most of the time the left ear would be quiet and I would hear my pulse in my right ear. I truly could take my pulse without even touching my veins to count them. Now, (post January 30), my left ear sounds like, well have you ever seen one of those army or navy seal TV shows where an IED goes off and one of characters loses their hearing and for a period of time they show things from that character’s perspective - and they can’t hear anything other than a high pitched squeal? That’s my left ear. My right ear is mainly pulsatile but also typically 2 to 4 times the volume that it was. Rarely, before did it cause a problem with my hearing before but now it is often so loud that I miss things that people say because it drowns them out. Oh and the difference between the two - also means I can get two separate headaches at once also. On the left side, we’ll (me and my brain) have a constant steady pain. On the right side, I’ll have a throbbing up and down shooting pain that moves with the pulse that I hear on that side. Make sense?

Tom

Oh and there are times on the right side where I can actually hear my blood moving through a blood vessel - but I don’t know which one.

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I don’t know your history, or present medical status. Did you have a rupture? Was it embolized, etc.? I asked because we had no sign before my husband’s rupture, but he’d been asking me to search the internet to find out what could be done for the sound of breathing in the ear that drove him crazy. I didn’t find anything serious. But in researching post rupture, I found it to have been a bruit (https://www.ncbi.nlm.nih.gov/books/NBK289/). Wished we had known.

Praying you will find some answers and relief, and God’s grace along the way.

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Mary - I’ve been fighting mine for 40 years and we’ve always been able to catch it before it ruptured. I think in large part because most of it has been in my left neck and shoulder area. I’ve had embolizations and surgeries in 1978, 1986, 2009 and 2018. The entire 40 years, the battle has been risk vs. reward - has the risks with doing something been more or less than the reward of doing it? This time, the risk of not doing something (brain bleed) was high - the risk of complications was low. Well, I won. I got the lower risk of a brain bleed AND I got the complications…

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Wow 40 years. Will pray for you!

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PRAYERS from me, Tom. I am no Angel, :-), but thinking I DO know God DOES listen more than we realize!!!

Lisa

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Tom, I hope the second opinion is either enlightening or reassuring!

I haven’t posted on this site before, but your posts have helped me tremendously over the past year and I am struck by some of the similarities in our post-embolization symptoms.

A bit about me: In Sept 2017 I developed pulsatile tinnitus and was diagnosed with a DAVF two months later. I elected to have endovascular surgery in Jan 2018 because in addition to the tinnitus, I had developed terrible, intractable headaches. The pulsatile tinnitus resolved after coil embolization, but the headaches did not. Although the pain has decreased substantially over the past 8 months–to the point where I am now hopeful that I can make a full recovery–I still have unrelenting head pain. So, I can certainly relate to your struggles with with the ongoing headaches that never remit, and the toll this can take. My heart goes out to you.

Like you, I also hear some very wild noises in my ears! First, I have a high pitch ringing that is present about half the time. Almost sounds like air being let out from a tire. Second, I can hear a static-y crackling sound when I cover my ear or rest it against a pillow. It sounds as if someone has poured milk on rice krispies cereal… in my ear. Third and finally, I also hear/feel a strong pulse when I rest my ear on a pillow. Not the screeching/swishing sound of my pulsatile tinnitus, just a strong heartbeat.

I have discussed the ear noise with two neurosurgeons, an ENT, and my Primary Care doc, but no one seems to know what to make of it. They’ve thrown out plenty of possibilities–side effect of radiation, changes in blood flow, irritation to my auditory nerve-- but who knows! My follow up angiogram at 6 months post op showed that the fistula is still completely occluded, so no one is too worried. My ENT did refer me for a hearing test next month, and I’ll be happy to share any illuminating findings.

I am fortunate not to have any issues with vision, concentration, balance, and can only imagine how much strength it must take to mange any of those symptoms in addition.

You said in your post that having a better understanding of your symptoms could help you, even if the symptoms do not improve. I feel the same way. One of the hardest parts of this whole experience has been the constant uncertainty. I hope that you are able to find some answers, and please let me know if there is any information I can share about my own journey that could be helpful to you. As I said before, your posts have helped me a great deal.

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JulB,

Thank you for your kind words. It’'s good to know that my writing helps, not only myself but also others. I will remain very active on here and will keep you all informed.

Tom

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Jul

Keep me in the loop, too, please. I don’t have symptoms anything like Tom but I can tick all of the above in a mild way… the general tinnitus whistle, the crackling and definitely the strong pulse on a pillow. I’m still waiting for MRI results from May and June but I expect when they come through, nothing will be seen.

I remembered the other day that the promise my doc made to me was that he was going to fix my stroke risk with my embolization. He was careful to point out that he might not have any effect on any symptoms. I’m guessing that even if a surgeon fixes the big things that you can see on a scan, the damage that is done on a very tiny scale to maybe several parts of brain or hearing or whatever, may be too small to see, never mind to actually do anything towards.

Interestingly, I’ve had vertigo this week for the first time ever. An interesting experience so far. I did my first international flights since my op last week. Maybe that has pushed things a bit further. I also find myself popping my ears a lot. Don’t know if you or Tom do that.

Thanks for sharing. It helps to stand together.

Very best wishes

Richard

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Thanks, Richard. Yes, I will absolutely keep you and Tom updated! Crossing fingers that your MRI results show the all clear.

I gather from the posts on this site that tinnitus and auditory issues are fairly common after embolization, though the actual mechanism or cause of these problems does not seem to be very well understood. I agree with you that there must be some degree of damage, or at least change, associated with a DAVF that is difficult to measure objectively or see in a scan.

After my embolization, my neurosurgeon was surprised that my pain didn’t immediately resolve - we had both assumed that fixing the anatomical problem would result in symptom relief. But the new onset tinnitus (the high pitch ringing and strong pulse started the day after the surgery and the crackling kicked in a few months later) and the ongoing headache actually sparked a very comprehensive search for another potential cause – although after loads of testing, all results were normal.

I got a second option from another highly experienced neurosurgeon who said that he has seen cases like mine this in the past, and he thought that the symptoms could improve. He said that injured nerves can regenerate, just very, very, very slowly. I’m hoping that this will be true for all of us!

Jules

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Jules,

Thanks for sharing. I agree with all you and your neuros say. My interventional radiologist I would highly commend but the conversation I tried to have with my neurosurgeon about all that you set out above was met with complete disbelief on his part. His opening words to me, after waiting 4 months for my appointment with him, were “I think this is going to be a waste of time”. Well, despite my best efforts to engage him, I do think it was a waste of time.

We need to stick together and if I see any inkling of possible improvement that you or your neuro find, I might take up here. Likewise, if I get ideas / any progress with my case, I’ll share.

Some days I feel just fine. Other days, I think I do too much and feel less well. As I think I said above, this week I’ve had vertigo for the first time ever. On Wednesday, proper vertigo. On Thursday, more like a more generalised head pressure / dizziness, such as I’ve had since my op but with a hint of nausea. Today like Thursday but perhaps less nauseous.

I’ve found lots of people at work who also suffer with vertigo – through explaining why I took some time out on Wednesday – so it seems a very common complaint for people of a certain age. But one person indicated that their vertigo is often triggered by aircraft flight. I wonder if there is a connection between feeling the need to pop my ears a lot and these recent symptoms. If anyone else has a bit of vertigo and a need to pop the ears, I’d love to hear.

Thanks for being there!

Richard

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A few thoughts to throw into the mix. I haven’t flown since my embolization, so I don’t know what if anything that will do. Frankly, flying right now scares me because it’s the “great unknown.”

I had a CT done of the temporal bones by both ears because prior to all of this, tests had shown those were “thinner” than normal. The CT came back “all systems as normal as they will ever be.”

Funny story - as we’re getting ready for the CT, the tech is giving me her standard spiel, “Have you ever had one of these before…” I said, “I’ve lost count of how many I’ve had, partially because I ran out of fingers and toes.” “Oh and I’ve got to warn you, you’re going to see some really unusual “stuff” in there.” “Oh really?” “Yeah, google Arterio Venous Malformation some time - it just might have my picture.”

smile

She comes in after it’s done. “Holy cow, I am so glad you told me otherwise I’d be calling the doctor ASAP in a major panic! That stuff is a mess!”

Yep, that’s me.

Previous treatment - I think it was 1986, they got nerves crossed. I could scratch my left arm about four inches down from my shoulder on the outside and I could feel it on the back of my left ear. Think about that one. I think it took about 4 to 5 years before that went away.

Prior to D Day (aka January 30, 2018), I felt like I had to pop my ears a lot to alleviate pressure in the eustachian tube. That feeling is almost completely gone. Why? I don’t know. I suspect it’s gone because the nerves that feel the pressure in my eustachian tube got damaged. No way to tell for sure - and not much to benefit by actually knowing.

Between my neurosurgeon, my primary care doc, my ent doc and my neurologist (migraine guy - though not sure whether he helps or gives me one), I’d have to say that the standard refrain is "the longer that things go on, the longer that it is going to take for there to be any improvement and that improvement will be measured in inches not in feet or yards and in months or years not days or weeks. So they have all urged me to do whatever I can (and frankly hanging out with you’all is a big part of it) to accept where you are, accept that God has you right where he needs you and search out how to follow his plan.

drops mic steps away from the computer to go ride around the yard on a lawn mower for the rest of the afternoon with ear plugs AND noise canceling headphones on
:slight_smile:

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Tom,

Love all of it! I have to say, when I had my first MRI and hadn’t a clue as to how big a thing I had going on in my head, I asked the radiographer after the scan “see anything interesting?”

“Oh yes.” (but its the doc that has to tell you about it, never the radiographer)

“Are you surprised I’m still walking around?”

“Oh no.”

Thus was as much encouragement as I got for months 2-3 of my diagnosis, as it took several weeks for the radiographer to write up their report.

I’m pretty ok with how I am, especially because I’d need to be a hundred times stronger, more self-confident, patient and determined to be you.

Keep up the great work! Love,

Richard

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Dick, thanks for the compliment. Apparently I keep my down times to my private journal quite well. Seriously, I appreciate it…

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Good job on 40 years!

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For all that it’s as tough as anything, Tom, I think you’re doing a fantastic job of dealing with it. Power to you.

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