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AVM Survivors Network

Monday Monday

#1

So it’s Monday.

My wife is off to work. She’s an amazing woman who has voluntarily chosen to work with the sickest and frailest little babies. She works in the Neonatal ICU - kids who, well let’s just say that at one point she had a 4 lb baby that she was caring for, and he was big. Check out https://www.spectrumhealth.org/patient-care/childrens-health/neonatal-care if you want to find out more.

Let’s just say that she’s been the rock that has held me and the family steady through my sudden “venture” into less than positive health and the after effects of that all. I could go on much more about the wonderful person I “married up” to, the wonderful wife who said “yes I would like to go see Raiders of the Lost Ark” with you back when we were juniors in High School. But I won’t.

Those of us who live in the US celebrate this Hallmark generated excuse to get us all to buy flowers and cards called “Mother’s Day.” And we were blessed to have both of the grandmas over yesterday too.

Rambling on - I read an article which said that Apple, in their iOS 12 version now have what’s called “Listen Live” installed in it. What’s it designed to do? Apparently it is designed to work with a set of blue tooth headphones and then be a hearing aid that uses your iPhone to filter out some of the distracting “other noise” that we all try to filter out but rarely do as well as we want to. I ordered a set of hearing aid sized blue tooth headphones for $29 (the ones recommended by the article) if you don’t want to spend the money for apple headphones. I haven’t had a chance to try them out - but I will and will report back.

Does anyone else have this? I woke up from my Embolization with a totally deaf left ear and that entire side of my head (from below jaw line to well above the ear) was numb. It has eased up some - but it’s by no means back to what it was. The two questions I had while thinkabout this:

  1. Does that numbness (is that a word?) contribute to or cause the times when my left ear and cheek look Iike I got a sunburn?

Is there a link between that and my headaches? If there is, I would expect that it would be a cause effect (headache, sunburned looking ) rather than the other way around.
The hearing that I have in that ear is very distorted - think transistor radio. While the doctors have said that nothing appears to be structurally wrong with my ear, what would cause the static?

When I was first diagnosed way back in 1978, I seem to remember hear a saying that went something like this - “this is not something a teenager should have to deal with.” Frankly, while are more dangerous and more life altering conditions out there, this is still something that teenagers shouln’t have to deal with. I was reminded again this weekend of the toll this can take on teenagers when one of their parents is struggling with an AVM.

What’s the best way you’all have found to keep in touch (or try to) with friends when it’s hard to “go out” and it’s hard to be in a noisy group and…… And……… There is so much that gets in the way - what do you find that works?

A little shameless self promotion mixed with “I hope this helps someone……” I wrote an article on my website (http://tomvanderwell.net/2019/05/10/hope/) about a gospel choir concert that I went to on Thursday at my son’s school. I think we could all use a bit more hope in our lives.

Referrals - trying to get in to another specialist to evaluate if there is anything happening between ears and brain or between eyes and brain. The main hospital system in our area tried to get me in to see one of their Doc’s who is educated in this stuff - and neither one of them are currently taking new patients because they are scheduled until January of 2020 - and apparently their computer system won’t schedule out that far! So, do I:

  • Sit back and wait until either they call with a cancellation or we get to January of 2020.
  • Try to find another doc out there - knowing that it would be 2 to 4 hours or more drive away.
  1. ? I don’t what any other possible courses of action there might be.

Finally (whew!), a question for you. Many of us are waking up this morning with not a lot to do - or not a lot we can do, and for many of us that makes the mornings hard. What concrete suggestions would you have for someone in your place who wants to be productive but is also really limited in what they can do?

My counselor and I have been wrestling with that question a lot.

And now it’s time to go do the exciting Monday morning household jobs - I get to do laundry! :slight_smile:

TJV

#2

A good question as I know I’m capable of being more productive though I know I wouldn’t survive in a stressful work environment so I’m always looking for what can I do with in my limitations and unfortunately that usually leads to me doing dishes and laundry around the house…

#3

I get to mow the lawn too. I do dishes and laundry. Then on days when it’s sunny out (cause I can only see out of one eye) I mow the grass. Gives me exercise and I finally get to take care of the lawn like I should have when I was working. It’s the little things right? Plus I pester my wife and kids to tell me if I missed a spot. And one more item if your situation allows, you can get a pet. My family loves dogs, so with the recent life change, we got a new golden lab about 7 months ago. Man if that ain’t full time work. Hah.

#4

Random,

Thanks for stopping by. I have you beat on the pets. We have three dogs;
Solomon - a white Maltese adopted from Haiti (for those who don’t know - Haiti was founded by slaves and people of color are probably 90% plus) and Solomon is the living definition of oxymoron because he is Anything but wise.

And then we have two Yorkie poodle mixes. They are brother and sister from the same litter. Their names are Romeo (we call him Ruh Roh- google scooby doo) and Juliet.

Yep a white oxymoron from a very dark colored country and a brother and sister who get into all kinds of trouble. I’m sure Shakespeare didn’t write THAT into his play.

#5

Hey Guys:

Thanks for the laughter! We don’t often find humor in our various posts. Lord knows our chore lists are infinitely different than what they were pre-AVM. I’m dizzy all the time, so my chores involve things I can do without bending down, i.e. dishes, folding clothes. I would love a puppy, but I have a Husband instead. And, he’s great. Thanks for laughs. :smiley:

#6

Oh and I forgot to mention the other part - we’ve had all three of them for easily three to five years. Yeah, they bark, but so do teenagers.

But since my brain embolization in January of 2018, approximately 25% of the time when they bark, it’s at just the wrong frequency and it feels like shish ka bob skewers are being poked into my head. I’m thinking about talking to the CIA and see if there was a medicine to make youvery sensisitve to noise - and then let these “killer yorkies” join them in interrogations. Okay, maybe I am stretching things a little bit…

TJ

#7

Hi Tom—
I subscribe to your newsletters. I think you have a knack for writing, it’s real but also uplifting. I rarely post on here, much more of just reading others. I too had an embolization done. It was supposed to be followed immediately by a craniotomy, but when I woke up I had so many deficits my neurosurgeon pumped the breaks and said check back with him in 6-8 weeks.
Those deficits were very similar to yours; I am deaf in my right ear. My hearing in that ear has been replaced by severe tinnitus. It’s a constant high pitched static noise. There are times when I wish I could stick a chopstick in there to get it to shut up (doubt it would help).:sweat_smile:
All of the ear specialists I’ve seen have told me there is no cure or medication for tinnitus. Just pretty much deal with it.
Great.
My vision also doubled initially, but it’s about 80% better. Drs suggested yoked prism glasses but I passed on those (have you ever seen them??) :nerd_face: I had complete numbness on the entire right side of my face; I don’t have that sunburn effect you mentioned though.
As far as my friends go, I’ve given up on them. I have a few the come by every now and again, but since I can’t drive they have to come to me.
I’m the opposite of you, I have too many chores! I have 4 kids so, just dealing with them is a daunting task.

#8

Wow, there is someone who feels almost exactly like I do! I’ve actually had an ENT doc essentially ask me that, "So, you’re probably thinking that it would be good if we could remove everything about your left ear except for its ability to hold up your glasses, right?

I think he was just trying to get a handle on my tolerance levels and how bad it was. I told him that since that’s not really an option, I haven’t thought along that lines - but yes, I probably would.

So, as I’m typing this, my left ear has the high pitched static filled squeal going at a volume that’s loud enough to get parents to yell from the other room, “Turn it down I can’t even hear myself think!” My right ear is the throbbing pulsatile tinnitus - and so the whole right half of my head feels like a mini-bongo drum is being played inside it.

It’s no wonder that when I talk or when I type, there are occasional spelling mistakes or missed words or missed sentences. But as a writer and with a BA in English, it’s hard to admit that.

Keep in touch and I will too!

TJ