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AVM Survivors Network

Brain Dump

Hey all,

It’s a rainy Saturday morning over here in the “mitten state” - pull up a map and you’ll see what I mean, if you don’t already know it.

In the crazy world also known as “my life” there have been a lot of things going on and very little going on. So, in random order, here comes my “brain dump.”

My throat infection appears to be gone! Yay! They took me off one drug and more than doubled the dosage of the other one to make sure that it’s gone. And then reality slaps me in the face - because the real reason we are at U of M is because part of my throat, tongue and vocal cords are paralyzed. So, a big victory in a small part of the puzzle.

My 18 year old graduated from high school on Thursday! Whew, we made it. But I’m also very proud of him. He spent three years in an orphanage in Haiti before becoming part of my crazy bunch - so he made it through while overcoming a lot of obstacles. This would be, I guess you’d call it a race well run.

Shameless plug - he is a self taught writer, composer, performer and has created a number of really cool pieces of music. He works mainly in the spoken word, hip hop, rhythm and blues area. If you know anyone in the music industry that could be a good connection for him, I’d love it if you’d make a connection for us. He and I have talked about how it’s often the case that the high school and college years are the times to determine whether something should remain a hobby or it could become something more. I was a golf nut during high school - but by my senior year, I realized it was strictly a hobby. He has taken big strides towards making his music much more than a hobby in the last year. *drops mic - or maybe throws it across the pond to Merl?"

Moving on - my headache doctor agreed to up the propranolol from 80mg to 120 mg. I wish I could say it has made a substantial difference, but it’s more like the left fielder in a baseball game playing in or playing way back at the warning track. It’s still baseball, it’s still the same rules, the training requires just a little bit of difference.

My headache doctor wants to do Botox injections because he said those work well for a lot of his migraine patients. When I tell him that the information I’ve read at the National Institutes for Health, Boston General, Mayo Clinic and others seem to point to this as being an ABI (acquired brain injury - as opposed to a TBI) and not a migraine, he doesn’t seem to give much credence to that information. Also, one of the rare but possible side effects is possible swelling and paralysis of the neck, throat and vocal cords. When I told him that that scared me given the state of my throat and vocal cords etc, he kind of dismisses it with some comment along the lines of “it’s very rare and it would only be for a few months - so you’d only need help for a couple of months.” He says help but what he really means is a feeding tube and oxygen.

Pardon the language, but WTF? You all know how complicated these AVMs are. You all know that there is a much greater chance of side effects for us than for most people. I don’t know how to respond to him.

The throat infection that I had - it came because:

  1. That’s normally a source that you’d find in everyone’s mouth/throat. Just not in enough quantity to make a bad situation.
  2. Because my AVM damaged my phrenic nerve on my left side, my left diaphragm is operating at about 50% of normal function. So I’m on asthma inhalers to increase the lung function in the parts that are currently operating.
  3. Those inhalers have steroids in them. Steroids allow these kind of infections to grow, actually they encourage it.
  4. The damage that was done to my throat/esophagus/etc created an ideal environment for that stuff.

So, essentially I had to have surgery in my throat because the AVM damaged my phrenic nerve and also paralyzed the left half of my whole eating talking swallowing portion of my throat. And that’s why I’m very nervous about doing anything that could potentially lose what I have.

For those of you who are in the U.S. and have been through the Social Security disability appeal, if you’ve had to disagree with your doctor about the medications he wants to use that you feel are too risky, how did you do that? I don’t know if I’m being paranoid but I don’t want to do the Botox and I don’t want to lose the disability benefits (assuming I can believe my attorney and I will eventually get approved).

If you want to message me directly, please do so.

Moving on…

Stress and balance issues - so last summer to fall, I went through a lot of physical therapy - mainly focusing on two things - my balance was off. Many people have accused me of being unbalanced, but this is an actual, lose my balance if I don’t have something to hold on to. I was there enough that I got on a first name basis with the receptionist and they liked me because I worked hard.

The last few weeks, my balance has begun being off again. I say “off” because I haven’t totally fallen but I am more wobbly. These last 3 to 4 weeks have also been extremely stressful with my 18 year old - he had a lot of stuff he needed to get done to get his grades where they should be. As in, get his grades to the point where he can graduate.

Are the two related? Or is there some other cause? I think there is too much of a timing connection for them to be unrelated.

I guess we’ll have to add that to the kids of “Things that make you go hmmm…”

I have used up way more than my allotted time, or as they are supposed to say when having a civil discussion in Congress, “Mr. Speaker, the gentleman from Michigan yields his allotted time to _______”

Stay strong, keep your chin up and keep reaching out to us.

We. Get. It…

TJ

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Hey Tom,
Firstly, when we have a contributor who speaks from the heart, is understanding of others and is compassionate in their assistance “Mr. Speaker, the gentleman from Michigan can keep the mic for as long as is needed…" You’d be needing a damn good throwing arm to get it across that pond :rofl::rofl::rofl::rofl:

And proud you should be of your son. You provided him an environment where he felt he was safe and nurtured enough to complete his studies, many can come to such an environment, find it too foreign and fall in with the wrong crowd so easily (says someone who fell in with that ‘wrong crowd’ and then had to claw their way out of that pit. Messy). So, huge congrats to your son BUT an even bigger congrats to you and your family, it’s people like you Tom who make the little sacrifices that can change the world, one person at a time.

As for the Botox, been there, done that and you have EVERY right to be cautious. Some may profess it to be the wonder drug and sure for those who do not have medically complicated migraines it can be a ‘wonder drug’, but for those of us with a physical cause, a medical condition which can cause or at the very least contribute to the migraine, Botox may not be that miracle fix. It wasn’t that ‘miracle’ for me. Botox blocks signals from the nerves to the muscles, when migraines are caused by muscle tension, usually in the neck and shoulders, then yes, Botox may assist in reducing that tension. BUT, when the migraine’s origin is NOT tension related, it ain’t gonna help. Sure, I had a sexy wrinkle free neck, shoulders and back but I’d have had to walk everywhere backwards and shirtless to show it off :rofl::rofl: Not very practical :rofl::rofl: And I certainly don’t have the phyisique to be walking around shirtless anyway :smile:

As for Social Security, you have factual evidence of the risks involved. You have your own experiences in regard to how the AVM has affected your speech, your swallowing and your throat already. There are some genuine concerns there in regard to any treatment. As I’m sure I stated previously, I am unsure how the services work over there, but here we have social workers within each social security office. You can make an appointment with the social workers to have a personal one-on-one conversation in regard to your concerns, explaining the exact situation and to voice your concerns in regard to your own personal situation. Having such a discussion with Social Security prior to making any final decision may assist in clearing your concerns. Remember to list 1. 2. 3. and 4. and all the other concerns you have about the treatments and their consequences. This isn’t just a simple injection in the neck, this has consequences, list them all. This isn’t just a matter of choice, for you it could be life threatening and tell them so.

Now your balance issues, ohh boy, do I know about balance issues. I have fallen before, but now I ‘try’ to remember. When I go to stand I have to give myself time to ‘normalise’. If I stand and move before giving myself time, I can find the floor real quick (often with a thud) and a pounding headache to accompany it. Mine is not a stress related thing but I do hope yours is and in which case it should dissipate now that your stresses are less.

You can have your mic back now :rofl::rofl::rofl::rofl::rofl:

Merl from the Moderator Support Team

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Give yourselves all a big part on the back for that. It’s a team effort.

I know nothing about music but @memyselfandeye is something of a musician / composer / DJ in the UK and @Dony_Cheeze a keen musician in the US. This is as much networking as I have in music :slight_smile:

Lots of love,

Richard

1 Like