I’ve been dealing with this AVM for 40 years. Numerous surgeries, numerous embolizations. Originally they thought they got 95% of it but it has grown back. Last treatment was in 2009 for pressure on a pinched nerve in my left neck. Lost 25% of lung function due to nerve damage in my phrenic nerve to my diaphragm. Speech difficulties due to hypoglossal nerve in left side of tongue. Been having more problems with speech, ears/hearing/pressure and headaches. Doc did an angiogram and said the AVM has spread to the right side (started in left neck and up into my brain. He said we’ve reached the point where doing nothing was more risky than doing something. Going to be embolizing some blood vessels in my neck and up into my head. On the one hand, I’m hoping this alleviates the constant ringing and pulse in my ears, the disequilibrium and nerve pain and tremors in both arms and hands. On the other hand, I’m scared out of my mind wondering what side effects I’m going to have to deal with short term and also long term. Any advice, words of comfort, insight would much appreciated.
Tom,
Hi. I remember you posting your somewhat concerned topic a few months ago. Its good to hear from you again, though I get the concern.
When did you last have surgery or an embolisation? I’m hoping a long time ago, so things will have moved on significantly meanwhile.
I had my only embolisation in April just gone and I’m happy to do it again if I need to. I think the worst bit is the foley catheter, to be honest. The rest is ok. If I look back, I described some pain or discomfort but I think I was in a good degree of discomfort anyway, so doing the embo didn’t add greatly to that and having had the op, it started to fade the right way, where without it would have just got worse and worse.
The doctors are good guys and gals. They are on our side.
It’s tough having to go through it again but you can do it if you need to.
Best wishes
Richard
Tom:
Forty (40) years is a long time to deal with anything, especially an AVM! A testimony like yours tells other AVM-ers that they too can persevere. You did not and have not given up. May God continue to bless and keep you.
Sharon …
40 years? Lord have mercy! And here I was thinking a little over 5 years was a long time. Praying for everything to go smoothly for you.
Well, here I am. 15 days post op. They put thirty small coils and a whole bunch of “super glue” in my head. The AVM was more involved than they thought and well, as the doc told us yesterday, “you are complicated.” So what’s it been like? I lost at least 98% of the hearing in my left ear - the doc said some of that might come back, but if it hasn’t by now, odds are not in my favor of a complete return to where it was. The noise in my head - my pulse and good old fashion ringing in the ears (even the deaf one) are louder than they were pre-op but quieter than they were a week after. I’m now 48 hours off any prescription pain killers - just alternating motrin and tylenol.
Probably the biggest things that aren’t resolving themselves yet are the deafness in my left ear (that side of my neck has been ground zero for 40 years), noise stimulation being extremely painful, and the amount of time I can spend on writing, reading, etc. is limited due to over stimulation which causes blurry vision, headaches and large increases in internal head noise along with dizziness.
As the doc said yesterday, you are one of the ones that falls into the “these things could happen” category.
Now, questions for you all - does anyone have any experience with larger brain embolizations and how long it can take to get the noise stimulation and the dizziness and that to become manageable. I do okay at home, but prior to this I did a lot of substitute teaching and there is no way I could spend a day with a whole bunch of high schoolers right now.
Since I can’t substitute teach, there goes a lot of my source of income. Fortunately, my wife is our primary wage earner, but I still need to make some money. I like to write and hopefully can turn that into income eventually as my brain settles down and I can write online. Right now, writing calms my brain - but only if I do it on paper with ink. The old fashioned way. Anyone with any ideas, thoughts, suggestions?
So, in spite of all of that bad news, or less than good news, the good news is that I am still alive, we have significantly reduced the risk of a brain bleed and in some ways, I’m feeling better every day than I did the day before - that’s all good.
Anyone with any insights into ways to get financial support during recovery, opportunities for, heck, I don’t know. I was journalling last night and said I feel like I need to reinvent myself.
Tom,
It’s great to hear from you. I still think you are at early days and some of what you’ve got will calm down. In some respects, I have become better over months not days, though I am still hankering after less whistling in my ears than I have, still believing that going back to the doc will lead to a reduction, where you’re telling me the opposite!! Ah, well.
Very coincidentally, you were in my thoughts yesterday. I read through your story with my wife, literally 12 hours ago.
It’s early here, so I don’t have many thoughts to share. Anything that comes to me, I’ll share. I’d definitely do some of the old-fashioned paper writing. Worry about how to turn that into income later but if it helps calm you and you can write something of value to you or possibly others, just do it.
Well done for going through it. I know it wasn’t easy.
Best wishes
Richard
Hi Tom,
You have a truely inspiring story. As others have said, 40 years and still fighting 
I am sorry to hear that you are also one of the “complicated” ones like myself and that you faced deficits too. My AVM is in the left occipital lobe (the sight centre of the brain), eloquent, deeply positioned and was 4cm but reduced by 90% to 0.4cm after an intensive 7.5 hr embolisation surgery on 29/01/17.
For me, considerable sight loss in both eyes was due to a stroke during my embolisation surgery and I also had a fair bit of swelling. I was told there was hope in the upcoming months that some sight would return as swelling went down but that alot would be permanent due to the stroke causing tissue damage.
They will now be going into investigations to determine what the next step is. You have given me food for thought in the real risk of regrowth if I chose to monitor it.
For the first few days I did hear and feel a pulse at the site of my AVM. However once I was given steroids this calmed down. I was very light sensitive and a bit noise sensitive and had bad headaches post op, but again once I went onto steroids it got better. So I presume swelling was alot to do with it for me.
3 weeks post op, leaving the house for the first time, I have noticed I am still uncomfortable leaving the house (accompanied) when it is bright out. I feel alot more comfortable around 4-7pm when it isnt too bright or dark. I feel a lot more comfortable at home where I can keep lighting dim and it is quite and im in familiar surroundings. Sight has improved a bit I believe too with some returned upper right peripheral vision recently a month on.
I too lose energy levels if I overdo visual stimulation. Get exhausted after watching an episode on TV or spending too long on my phone without breaks to nap. I am still a little noise sensitive and haven’t worked my way up to enjoying listening to music or audiobooks yet.
I struggled with nausea for the first 12 days post surgery but that calmed down to a tolerable level. I would also get dizzy/disorientated for the first couple weeks when I would move my head too quickly to take in my surroundings.
I am glad that like me, you are on the road to recovery and feeling better each day. I would take it easy for now in terms of seeking financial opportunities to work now. I would say it is very early days, you have the right attitude - being motivated and looking to the future. But right now your brain needs as low stress as possible to heal, it has been through an awful lot recently.
I try to see my laid back approach now as a temporary sacrafice for future gain. If I let myself recover now and be kind to myself, I give my brain the best possible chance to recover as best as it can. To recover sooner rather than later too.
I still believe this is all very early doors for you, although it is important to stay realistic about the chance your hearing may not improve to original levels. There is still most likely hope for improvement in upcoming months.
Have you had an MRI scan since your embolisation to check for swelling and if steroids are needed? If not I would certainly push for it.
It is great you find writing calming, I would keep with it but ofcourse be aware not to overdo it. To take breaks/naps when you feel you need to. Who knows what the future holds? You could recover enough in future to take up teaching work again or use your experience from writing for pleasure now to make an income out of it in future or something completely differant!
Best of luck,
Corrine
Richard, Thanks. Yeah, every day there are some signs of improvement and other signs of absolutely no change. It has definitely been an exercise in patience, that’s for sure.
I appreciate the support - this site has been a great place these last few weeks.
Tom
Corrine,
Thanks for the insights, the encouragement and support. They mean a lot. It’s interesting that for you steroids helped and I think they did help some for me, but they also raised the noise levels in my head substantially while I was on them.
We have not done an MRI since, the doctor at this point is wanting to essentially give my brain time to heal. I’m wondering if, as time goes on, there’s more and more of a risk of long term damage to either the nerves that are currently either damaged or compressed or the actual workings of my left ear - ear drum and such - they haven’t been functioning for almost a month - what does that mean going forward? I don’t know.
Yeah, I’m attempting to walk the fine line - give myself time to heal while also not falling into a funk or depression because what I could do before and what I can do now are dramatically different. Writing helps that and working towards writing with a purpose helps that too. But all in good time - because I know if I do too much, I’ll pay for it. Thursday, I did too much (having teenagers at home does that sometimes) and Thursday night my head hurt so bad I thought I was going to puke. Lesson learned.
My doctor and I are keeping in very close contact and I’m keeping him informed on how things are going. One day at a time - but thank you for the encouragement. It helps.
Tom
Hi Tom,
Oops just realised I put the wrong year for my embolisation date: 29/01/18 not 17, still not used to the year change 
Thats frustrating that the noise was louder whilst you were on the steroids 
do you think there was a direct relation? or that potentially that was your response to the embo and the steroids worked to reduce the swelling resulting in the noise going down from before?
I don’t know there is still potential this could be down to swelling or that your still in the process of whatever was damaged healing?
I was told if my eye sight loss was due to compression of brain tissue there could still be a chance of saving it if it was decompressed within 6 months. This was before it was discovered that the pre-surgery loss was due to perminent brain tissue damage caused by my AVM. So this could be the case for you maybe? Its difficult to know without knowing the cause.
I totally get that - it is a difficult thing all to process. Maybe writing a diary of your experiences could then be used towards a blog or book? This could be theraputic for you but also help many others at the same time. You have a remarkable story after all and had a longer journey than many and one that I’m sure many would be interested in reading about. Thats just an idea out of many options.
It really is a difficult balance of not getting into a depressed state and doing too little to get a sense of things moving forward and also not doing too much when you have a good day recognising you’ll feel worse for it later. It’s frustrating when its a sense thats affected, its hard to avoid stimuli without being super bored. Pretty much most things I enjoy for entertainment involve visual stimulation and I feel I’ve pushed it too far myself recently a few times.
I’m really glad to hear your keeping in close contact with your doctor, nice to know they are keeping a close eye on any changes.
I have been feeling progressively lower energy and more head pain since getting off the steroids. I notice my white light disturbances on my blind side get worse if I over do it with visual stimulation. 5th march couldn’t come sooner to see my consultant so he can determine whether I have a scan first or get to go back on the steroids!
Keep us updated on how you get on, hoping things improve with time with the hearing but that you continue to adjust well for the meantime. Keep up the great attitude, I understand it can’t be easy. We have to try our best to make the most of the good things we still have and keep our mind set positive One day at a time!
Best of wishes,
Corrine
May God watch over you and sending prayers your way buddy that you get through this difficult time… God bless!