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AVM Survivors Network

Again? This is getting really old

Normally, I try to be a glass half full type of guy. Let’s try and make the best of a bad situation. Let’s try to look at what’s happening and see if there is a silver lining to it.

I’m writing this to myself and giving you all the ability to look in and hopefully my situation might help someone else.

I think I am now up to 15 doctors and NPs who basically said there’s nothing we can do. The list is as follows:
Neuro Surgeon and his PA
Neurologist
Primary Care Doctor
Ear Nose and Throat doctor who then proceeded to move to the Atlanta area. I don’t think he moved because of me but…
4 PT, OT, RT
Another ENT doc
Otologist
Laryngologist
Infectious disease doc
Neuro Psych doc
Neuro doc with a specialty in headaches
Pulmonolgist

And today, I get to add neuro ophthalmologist to the list.

Met with him in November, wanted to run a few tests and then give it 3 to 5 more months and check things out then to see what, if any difference was made. He thought that there was a chance we would see more good waiting. So we did.

An hour and a half of tests, pictures, looking in my eyes, making me try to read that which is unreadable (as opposed to “He who must not be named.” - 20 pts for the first correct identification of the author of that quote)

End result - “I’m sorry, I don’t know what you want but there’s really nothing I can do. Essentially what you have is a focus problem but its a variable focus problem and there’s nothing we can do for that.”

Is there anyone out there or anything out there that can help? “I keep up the latest trends pretty well and I don’t know of anything.”

Well, excuse me while I go kick a great big pile of cow manure at the docs car. (Not really)

So now I’m stuck in this never ending circle - I have a headache all.the.time. That headache makes my left ear internally much more noisy. The noise in the ear keeps me from hearing decently which creates more pain in my ears which makes the headaches worse which makes the eyes worse (repeat ad nausea)…

By lowering any of these, the odds are pretty good that some of the others will improve somewhat. But the only way I’ve been able to improve is by controlling the environment that I’m in. Don’t go to basketball games or rock concerts, etc.

In other words, don’t do the things that are common for middle class Americans.

Swell - anyone have a private island we could borrow? Or a nice House on 2000 acres out in the country?

Now lets step back and take a little bigger picture. My eyes basically act like they need like 3 or 4 or 5 different prescriptions over the course of a day. At some times, my normal glasses would work fine, at other times they wouldn’t. Do I try to find reader glasses that are stronger than my main prescription? And then switch to them if I need them to be stronger than my “normal” ones. And maybe find two or three levels of reading glasses that I would keep close that when the eyes go “funky” on me, Id have some options that might help. It wouldnt solve anything but if it took part of “time” and make it much less of an adjustment.

Another question/thought that’s actually two - it has to do with cutting down static. I’m talking all of the noise that I don’t need to hear outside of my head along with the noise inside my head. Is there anything that can be done with that? Normal hearing aids do well at making the quiet louder, but they don’t (at least in my view) do much in reducing the unwanted noise. To me, that noise is worse than the loss of certain parts of my hearing.

And related to that - its said that traumatic brain injury patients often find bright colors and a lot of moving pieces (I thought I was going to pass out the first time I went to the grocery store.) Yikes.

Is there anything out there in the visual field that would basically tone down the bright lights and the bright colors as a way to help reduce ear pain which reduces headaches which…

Glass is half empty - I cant do a lot of what I used to.
Glass is half full - I’m still here (and I say that with all seriousness) and while there might be a few minor things we can tweak, what I am is what I am

Unless one of us knows where or how to impact one or more of these issues, well…

Thanks for listening and thanks in advance for any input,

TJ

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The author was JK Rowlings referring to the villain in Harry Potter, Lord Voldemort.
So that should give me 20 points, plus ALL of the chocolate :smile: :smile: :wink:

Merl

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That is a lot of ologists and rightly so is clearly incredibly frustrating. I’m at a loss for any suggestions in the medical field, you clearly know what a lot more of the do than I. Is there any alternative health possibilities out there? I wonder about a naturopath consult, you never know. While I would hazard to guess the success with a complex matter may not be that high, the worst result will be equal to the medical field…I just read somewhere that yoga can help with hearing…not seeing the connection but might be worth a try to go way, way outside the box. I’m hoping for some sort of great suggestion to come to mind but that’s all I can come up with right now. John.

Merl,

20 points is all you get. Now if you can, from memory, tell us where “he who must not be named” was mentioned first, then you would get 20% of the chocolate.

I had an English prof in college who had Shakespeare memorized.

Everything.

Like, “King Lear, Act 2, scene 4, lines 325-330”. He would have it immediately. Always raised two questions that I never dared ask, “how” and “why?” How did he do it? And Why on God’s green earth would you want to memorize it all?

TJ it’s sounds like you have gone to war & back with this battle… I genuinely hope you find the right professional to assist you in resolving your problems… please continue to keep us updated… God bless!

Tom,
I can truly empathise with where you are at as I too have been (and at times still am) in a similar position. I say ‘similar’ but by no means to the same extent.

My eyes seem to be one of my primary pain regions. I have tried to vary everything to find relief. Trying to find some sort of balance has been fraught with danger. I have seen all of the specialist available to me and exhausted every avenue possible, without much success. In the ophthalmologist view “well, it’s not your eyes…” So I add it all to that pile that has become ‘life’.

I ‘try’ to manage what I can in anyway I can, but as I’ve said before, it’s all so variable. I avoid bright situations. If I go outside, it’s never without a hat and sunglasses, but even then some days are just too much. Some days I find that the brightness is OK but my eyes, my head, the nausea all adds up to OMG. The doctors are at a bit of a loss as to what to do or why this is occurring and if they don’t know then what are you and I to do about it all? I find that it all seems to feed off of each other “(repeat ad nausea)…” Short of hibernating from the world, which I pretty much do already to minimise adverse stimulation ie bright light, flashing lights, loud noise etc I’ve run out of options. The word ‘Frustration’ simply doesn’t even come close to explaining it all and often others outside of this reality just don’t get it. They often look at me like I’m making a mountain out of a molehill, ohh it can’t be that bad, and they are right, It’s worse than just ‘that bad’.

As JD has suggested (if you haven’t already), try a naturopath, try acupuncture, even try all of the other ‘unconventional’ options. You never know something may help BUT (and this is where I got to eventually) once we have exhausted EVERY avenue open to us we really have no choice but to accept that ‘This’ is where we are at. Don’t get me wrong here TJ, I hate it, but I know I have tried to find that elusive answer in every way I can and according to those who should know, the medicos, there is no answer. So that leaves me floating around in no-man’s-land with no answers at all.

I’m sorry I can’t give you an ‘answer’. I haven’t found one to fit my needs, but please, if you find one, let us all know.

Merl from the Moderator Support Team

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TJ

Hi. The only thoughts I’ve got for today are…

If it is your reading distance that keeps changing, then if off-the-shelf (£10) reading glasses might keep you going, I’d get a brace of off the shelf readers of different strengths. You might look like professor Branestawm (I wouldn’t warrant that professor Branestawm stories ever made it to the US so you might need to look him up) but a few quid might give you a way to get through more of the day.

My other thought is coloured lenses, as used by people with dyslexia. I remember some years ago learning that the jumbling letters of dyslexia can be slowed down or made to stand still by reading through a coloured ruler or having a strong colour tint in your glasses. You’d need to try out different colours to see if any worked for you and then get glasses made in the right colour… more expensive than off the shelf stuff.

If you thought coloured lenses might work, I assume it would be a chat with an ophthalmologist or the neuro opthalmologist to see if they think it might be relevant to look into.

You could buy a set of dyslexia rulers for perhaps $15 or so, if you fancy looking at the world through those and see if it makes any difference.

Hope some of these thoughts might help.

Never let Merl anywhere near the chocolate. It’s like feeding a mogwai after midnight!

Very best wishes always,

Richard

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I could turn into the “glasses of the hour” kind of thing - but hey, I’d do it in a heart beat. I’m looking to find my last prescription to see where to start.

So, you say Merl wears Rose Colored Glasses while eating chocolate after midnight? The things you learn about your friends on the other side of the pond. At least he’s not chasing unicorns too…

Thanks for putting a smile on my face, I needed that.

TJ

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I’m naturally a Gremlin, it takes a couple of pain killers to revert me to a mogwai :smile: :smile:

After midnight??? No, no, no. I have chocolate anywhere, anytime. :smile: :smile:

Merl

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Hi, TJ
I was diagnosed with Uveitis(inflammation of the eyes) in 1991. For a year I could not be fitted with prescription glasses because my vision fluctuated throughout the day. This is an autoimmune disease caused by genetics. I am HLA-b27 positive which just means they can treat it but not cure it. I see a retina specialist, Dr. Rosa Kim in Houston, TX. I have learned to live with it over the years. Your issues must be more intense since you have multiple things happening all at once. What part of the world do you live in? I might know a retina specialist there.
Keep the faith. Let us know how you are doing.

TJ:

I don’t have any answers or suggestions for you. After reading your post I just wanted to say hi and good luck and that you are in my prayers.

Sharon D…

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Hey 1973,

Thanks for the info. I have never heard of Uveitis before that sounds like me in many ways. Does Dr. Kim have a website or do you know of an official one? I’m wondering if there is any causation line (probably not the right term - it’s still early) between either the AVM and the Uveitis or between the side effects - swellingl altered blood flow.

As to where in this world I call home, take your left hand and hold it straight up in front of you. Then find the bottom joint for the pinky finger. Take a Sharpie and draw a star right there. Then right next to that star, write TJ’s house.

Michigan, the only place I know where people use their fingers to show you where they live.

TJ

P.S. I’m intrigued by the 1973 in your name. So I did a little looking back, in 1973, I was in 3rd grade and this was one of the big songs of that year. I thought we could all benefit from a little Billy Joel and the Piano Man song on a monday.

Sharon - Hi back! You guys are all so good for yourselves and ourselves. What we have here is priceless…

Thank you for the good luck wish, thank you even more for the prayerss.

TJ

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I ended up at Dr. Kim’s office after a failed medical trial at the National Eye Institute-NEI, part of the NIH in Bethesda, MD. I had an allergic reaction to the medication after the 1st dose and that was that. The 1st indication I had that anything was wrong with my eyes-One day I woke up and it was like seeing through a glass of skim milk.

Stay cheerful-lol. It can be hard

Vicki

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Hello, again.

Where exactly in Michigan do you live? I am a retired research analyst and can find you an ocular immunologist. Can’t hurt.

TJ, as you probably can tell, I am, ALWAYS, SO behind on my emails, so I just saw this one, today. Man oh man, lots of doc’s I see here. Lots of PRAYING is my best advice!!!