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AVM Survivors Network

Second Opinion Day - a long day


#1

AVM Group Update

To all of my secret friends and fellow warriors (I say secret not because I hide you but because none of my people “here” know you and I’m the one who is better off for knowing you.) But enough about that.

Yesterday was second opinion day - we drove about 2 1/2 hours to Ann Arbor Michigan (University of Michigan) and had two appointments. First we met with audiologist who ran a very standard hearing test. That test kind of bothers me because it doesn’t take into consideration distortion or pitch or anything like that and every time I put my hearing aids in and turn them on I’m reminded that my left ear is about 1/4 pitch off from my right ear. It came back pretty much the same as the last one - the right ear is “pretty much deaf” (technical term) and the left ear is “pretty much” deaf in the lower frequencies and very deaf on the higher frequencies.

We then went back out to the waiting area because we where 17 minutes before our next appt yet. They called us in so that we were in and all check in and waiting for Dr. H at exactly the appointment time. Never seen a doctor do that before. It was amazing. Watching her work was fascinating - she knew exactly what she was looking for and exactly what she expected.

Here’s essentially what she had to say:

  1. Hearing - my hearing aids will do what hearing aids will do and there’s nothing that they can do beyond that.
  2. She said the fact that I’m almost 3 months into two fairly strong anti-migraine meds (Topamax and amitryptiline) and they aren’t working means I need to get in to a specialist who deals exclusively with headaches. After some work this morning, that is scheduled for December 12.
  3. This morning was my second of what is currently scheduled to be 10 sessions of vestibular therapy. The vestibular therapist is talking about getting their neuro opthomaligist in to see me - it doesn’t sound like that happens all of the time, but I’m good with it. Hopefully this will get my balance back - even some. I don’t need to get to ballet balance ability but something normal would be nice.
  4. On October 3 (two weeks ago yesterday), we are going back to Ann Arbor to see their voice specialist about my vocal cord paralysis. She couldn’t see the whole thing but I’ve been having more problems with “almost choking” on things that I didn’t used to have.

She said there is nothing that they can do directly to address the noise in my head (she did seem to find the two headaches at the same time concept quite interesting) but she said that if we can control the other things, and do things to reduce stress, combined that should reduce the noise in my head “some.”

Not a guarantee by any means.

So I guess in many ways I could say we got the reports that we expected but not the reports that we had hoped for.

And now how do we reduce stress when:

  • I haven’t worked since January and I was struggling to find employment before that.
  • My wife is excellent at her job and loves what she does but works in a Neonatal ICU as an RN - a very high stress job - so she often comes home from work not in the mood to interact with anyone.
  • Our 26 year old still lives at home, just went back to school full time, is working part time and rents our basement from us.
  • Our 17 and 16 year old (Senior and Junior) both are adopted, both struggle with emotional challenges, both struggle with trauma issues, both struggle with, let’s just say they are not easy kids to parent.
  • Three dogs - A Maltese who is usually a good dog and then too Yorkie/poodle mixes that my wife fell in life with - that are brother and sister - and are bark monsters.
  • My emotional strength and ability to work through hard stuff, well let’s put it this way, if I didn’t have my faith to hang on to, I don’t know if I would have made it.

Our finances are in shambles but I expect to hear on Social Security disability soon which will take that stress away. I don’t know what to do with the rest. Any ideas?

Thanks in advance,

Tom


#2

Tom,

I love that we are your secret! I’m not a very secret person, so my wife knows quite a bit about you and Corrine and Martin and JeremyH and a number of others on here. Occasionally we discuss the circumstances people are in before I write but not very often, including today.

I’m sorry I’ve left you two days without chatting. I’ve no real idea of what you fight with every day, nor lots of other people here but my preference is always to try to help others, so I chatter away aimlessly (not) just in case it helps.

Just two thoughts at the moment.

  1. My wife is very much like yours. At least, she works hard in the things that she does, or she gets herself in sufficient a state by the end of most days that she makes dinner and then collapses for the rest of the evening. If she has a properly challenging day, either at work or caring for her aged parents, I get it in the ear.
  • However, I know what is driving that tiredness, that exasperation and therefore I can just turn the other cheek, really. I know she’s not having a go at me. It’s just the day she’s had.

  • I think love is understanding some of this and it works for both of you that it can just pass by. I don’t have the other pressures that you’ve got going on, so I am sure it is easier for me to let it pass than for you. Perfectly understandable that you’ve got a lot welling up and it is difficult to step from day to day. It really is.

  1. I think your faith is one of your greatest “assets”. (I’m not sure “asset” is the right word here but I think it is important). At the moment, I’m comfortable not believing but if I were going through the level of challenge you’re going through, I might take up faith again. It’s a really good thing to help with working through life’s difficulties.
  • That you’re a very strong believer is a great thing and I think it is one aspect of life that you could rely on. I do think it could help you.
  1. I like your contemplations. You should take encouragement from the fact that you can set out the stories you tell in a way that really works. You’ve got style there. It has the power to help others. Consider using it. You are using it. I mean allow yourself to think positively about it.
  • Because you’re worth it.

I’ve no answers tonight on how to deal with all the stuff you’ve got going on. That made three thoughts, rather than two, but as always, I hope my rambles help a bit.

I think you’re a great guy and you shouldn’t forget that in the difficulties that you face. They don’t diminish that.

Sorry to leave you unread for two days.

Lots of love,

Richard


#3

Dick,

If I knew what direction to raise a glass toward you and if I was allowed to drink (docs have said that Ambien, clonipin, Topamax and amitritypline along with too much alcohol would NOT be good) I would raise a glass in your direction.

Thank you for being the encourager that you are.

Tom


#4

So I just read through my post again and I caught I think four or five typos - prior to January 30, I could write something like that on the fly, not have to worry about typos and just naturally catch them. It’s another sign that my brain has been through trauma.

Oh well, so I need to slow down and read things through twice before I hit publish.

Gasp…

How awful…

Smile


#5

It’s my absolute pleasure, if I happen to say the right things. Hopefully, everyone notices that I try to say relevant stuff and different stuff to different people. Sometimes I say the same things because I believe it to be good advice that I’ve heard and I’m passing on. But I try to answer each person, each post, as if it were the first I’ve ever read, to the one person. Hopefully, it comes across.

We all could do with a toast from time to time. Feel free to look East, maybe a bit north of East and raise a glass of water or whatever.

Or… maybe even better… raise a glass to someone nearer to you who you don’t think of so often. A neighbour or a relative who deserves a bit of thought. I’m doing ok at the moment!

The people who are almost always in my mind are Artem, Charles3 and there’s a lady whose husband was going in for a craniotomy around the end of July, I think, who I asked after once or twice but am worried about because she never answered. Think of any of those and that will do me nicely.

Richard