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AVM Survivors Network

What's next, after AVM?

#1

Currently I’m in my mid fifties, and I thought the biggest fight was behind Me. But I guess not.
Had my AVM ruptured on left side of brain and totally engulfed the entire brain in blood. Unfortunately the fine motor skills, speech, and other skilled sections were severely damaged. Completely Right sided paralysis. This took place 3 days after my 27th birthday. 2 years later, I was back to work. Worked 3 different jobs, the last for 3 1/2 years. Then the relapse started. I could not even turn on a computer, just stared at it, in frustration. Forgot every thing I went to school for a few years before, it was gone! Okay, I’ve dealt with everything my AVM had to give, or so I thought.
Now amongst troubles with speaking, controlling my brain, walking, and memory. I guess I’m having circulation issues. My hands are turning blue at the nails, then my hands. Body temperature goes from boiling to frozen. Went to the hospital on the 1/11/19, they ran every test, except an MRI. Everything checked out. The whole time I kept asking “Why are my hands turning blue?”, they kept saying “cause you smoke.”
Does that make ANY sense to ANYONE else? Need more info, just ask, please.

1/14/19
Getting closer to the answer. Had a lot of people say circulation issues, heart issues, and/or vascular. And when I mentioned Botox therapies had been receiving, the conversation took a serious & warning tone. She said it’s starting to become evident that AVM patients should not receive Botox, in their opinion. It causes issues sooner or later, unintended, but still happens. Contacting a Vascular Specialist asap. Hope this “reaction” isn’t getting any worse.

Can they not see vascular stuff with a sonogram? Just asking.

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#2

Hey Skip,
I have been in a similar position to yourself, now I say ‘similar’ but certainly not exactly the same. The similarity comes from the medicos. “…they ran every test… …Everything checked out…” So what is the easiest answer when they don’t have an answer? The easiest option is to put it back on the patient “cause YOU smoke.”
OK, so I agree that smoking is not good. I agree that smoking can affect circulation, respiration and procreation, but it does seem that smoking has become the new default for anything they have no answer to, that is until they can give a concrete answer, a firm diagnosis. It used to be psychology that was the primary default but I believe they have (finally) realised that by giving a psychological diagnosis it can have a longer term negative effect and as cigarettes are negative anyway they are not so much creating a new ailment but identifying an already known risk.
It would be interesting, if for example, you gave up smoking, what their diagnosis would be. But in saying that it may well be that, a bit like psychology, where they blame stress, past stress, present stress and future stress. So even in quitting they’d still point out past smoking behaviour.

Merl from the Moderator Support Team

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#3

I gave up smoking Friday, been wanting to quit for 3 years. See my GP later this week, see what they say. The hospital said I also needed to be on a happy or anxiety drug. So I will be calling my Neuro Doc, gave me Botox injections in ears and right arm, same hand that is turning blue.
Yes, I realize what Doctors do to ME. They have more of anything because they’re Doctors. I don’t usually fall for that bull. But they called a “Stroke Alert”, freaked me out. 1st time too experience THAT. But they didn’t do anything but tests, then throwing their hands up, shrugging shoulders.
So I’m at that point, shrug my shoulders & move on until something happens.

Thanks for replying. Was searching for an opinion.

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#4

@skipstur Hello I dont smoke and I have had circulation issues even before my AVM bug they definitely seemed to have gotten worse since my AVM/DAVF-
I am not sure why they did not want to do an MRI.
all my medical is at Stanford which has an Autonomic Dept.
There is something called Dysautonomia and I believe there are 15 different types. Many drs dont know anything about it. Most common is POTs. My sister has POTs. I was just diagnosed with Dysautonomia .
Here are 2 websites for more information

http://www.dysautonomiainternational.org/page.php?ID=36

https://www.dinet.org/

I too get Botox shots since my AVM has increased my migraines and head pain.

Angela

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#5

@skipstur Also there is something else called Thoratic Outlet syndrome which can do the same thing. There are 3 different types - most common is nerve, but color changes usually mean vascular -
I have the nerve kind on the left side but most people have it on both sides.
There is a good Facebook group that has a list of recommended drs and like AVMS you need an expert-
Here is some more information


Angela

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#6

Thanks Angela4!
Thanks for the info, will be checking it out. Most everyone I’ve been talking with on the phone is 95% sure it’s vascular.

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#7

@skipstur This is the TOS expert in your state * Dr Robert Thompson - Neuro/Cardio Thoracic Surgeon - Barnes Jewish Hospital - St Louis

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#8

@skipstur I cant tell you how much of a difference going to one of the suggested doctors from the list makes…like I said all my drs are at Stanford and I did not listen to the TOS FB group and went first to the TOS dr at Stanford who did not even exam me and told me I did not have it…I then went to UC Davis Dr who was on the list and she was like 180 difference …she confirmed I had it - then worked with my Stanford Pain drs on a treatment plan…when I mentioned to my Stroke dr about the the other drs misdiagnoses of course he defended him…but I have seen a few people having to have re do surgeries from the Stanford dr…anyway. I am so sorry you are going through this.
Angela

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#9

@skipstur what type of dr said Botox was bad for AVMers?

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#10

It was a nurse, think it’s just their opinion. Past 4 days I have heard both sides of the argument, confusing me. Is it part of the problem, don’t know for sure. All I know for sure, I had Botox injections in Dec. and that the only additional med in 3 years. If it didn’t cause what’s going on, what did? My GP says it possible that I’ve could’ve been having a reaction. My Neuro said it in no way could cause a reaction. So I’m really & totally confused. Especially beings, it does seem to be easing up. Could it be a reaction?

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#11

@skipstur I have been getting botox shots since my AVM so for 6 years and not had that reaction.
My only reactions are sun sensitivity the day of and the next day and I had some eye saggy.
Now I never ever leg them do my neck area.
I do let them do my occipital areas and my traps my jaw and all over my head.

Here is an article from a Headache Specialist in NY you might find useful regarding botox
https://www.nyheadache.com/blog/100-migraine-drugs-a-to-z-botulinum-toxin/

Now my Stroke dr is super conservative and I dont think he would allow botox shots if there was any chance of issues with my AVM -

He is so worried about my upcoming Ketamine IV infusions because of my allergic reactions he is admitting me in the hospital for 3-5 days.

Turning colors to mean always means vascular and I dont see how botox can do that and I would really push for MRI and MRAs

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#12

After 3 1/2 weeks of being scared of what might be, a 14 hour visit to ER & admitted, and finally diminished symptoms (still there), it is a reaction. It’s already less than 2 days ago, and definitely way less than 3 weeks ago. But why I am I having a reaction to Botox? Come to find out, in the paperwork that coincides with the Botox, it WARNS of the possibility that reactions could happen. The shots in my ears of Botox wasn’t enough for a full on reaction, but the shots in my paralyzed right arm was. Just gonna finish this reaction, should be gone by the end of February.
I’ve got 2 sets of the Botox paperwork and never read them completely, just browsed them. On 1/15/19 my friend was bored and started reading this paperwork while we talked about his recent double knee replacement, kept me distracted. There were warnings about people in my condition NOT taking Botox because this very thing could happen. I should have payed more attention. Sorry if anyone doubts me, it’s on line for all to see.

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#13

Well I guess I was talking uneducated dribble. Botox has not a thing to do with my condition, none at all! It turns out that my cavernous AVM has EVERYTHING to do with & is still causing me issues. And may even win the war! Hopelessness & Frustration are becoming endless.
Had an appointment to see my family doctor today for a Medicare physical. I told the Doc about my blue nails and finger tips, and the rest of the symptoms I’ve been experiencing lately, she looked very concerned. Then I told her about my visit to ER & admittance. The Doc bolted out of exam room then returned with her copy of ALL the tests that were run. After reviewing the test results, put down the papers, closed her laptop and rolled close enough to embrace and started talking. It turns out that my cavernous AVM has damaged or destroyed areas of my brain, arteries that this was going to happen eventually and was surprised I lasted as long as I did.
Autonomic Nervous System Disorder. No medication for it, No cure for it. It can only get worse.
What’s next, after AVM? Should have read “What’s next, from AVM?”.
I do apologize to any and all for spouting off about something I knew little or nothing about.
My family Doctor is in contact with my Neurologist, which I will be contacting tomorrow. Call this a rant of the clueless.

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#14

@skipstur I see an Autononic Neuro at Stanford as well…Did I mention I have 6 neuros…
Big Hugs to you in my first response to you I mention Dysautonomia which is an umbrella for some conditions that autonomic neuros see people like you and I about.
I did have my issues before this nightmare began but they got worse after.
Most drs dont know anything about it either so kudos to your dr for knowing.
Its not your fault either and you could also be having a reaction to botox who knows.

Dont feel bad at all - We are all here to support and learn.

Hugs
Angela

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#15

My next post here will be AFTER I see my Neurologist. Don’t want do anymore guessing.

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#16

Hi Skip, Even a wrong guess by you is part of a good learning process. Nobody is happy you got bad news. I’m not. As far as I can tell you are doing everything right, asking good questions, and taking care of yourself emotionally. You also seem to be a naturally kind person. Keep up the good work. Greg

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#17

Prayers for YOU, Skip!

I love the SUPPORT here for you. How fantastic & I hope it can make you SMILE?

Lisa

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