Author Topic: Thoughts During The First And Second Years  (Read 8009 times)

A Hiker

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Thoughts During The First And Second Years
« on: December 31, 2020, 05:39:50 pm »
Hello, ANA. This is my first and likely only post here. I wanted to tell my story and ask some questions. Sorry if the following is annoying. It sounds ungrateful. I don't mean it to be. At goodish times I am mostly grateful. It just reflects my thinking while healing. I send it after lot's of editing.

I discovered I had AN after I had experienced deafness in the right ear for years. It came in 2010 as a tinny/droning sound which increased until January of the following year. I discovered that I had become totally deaf in that ear pretty much on the 1st. Another thing that happened in 2010 was that, as I was sitting in my chair looking at my computer and snacking on Nestle's Tollhouse Morsels, the room started to spin. Wildly. That was very scary to say the least. I went into the bathroom and looked into my eyes. The spinning subsided.

The next day, just to test it, I again ate some more Morsels, and again the room started to spin about 1/2 hour to 1 hr later. It went away after I looked in a mirror into my eyes. I thought about contacting Nestle's after that, but felt that I would be labeled a troublemaker and not believed, so I didn't say anything. But the tinniness increased, though, in the same year (2010) I don't remember exactly when. So I don't know if the tinniness is related to the morsels.

I did sometime later see an ENT, but she seemed disinterested and her secretary told me after I saw her that it would cost me another $200 or so dollars to ask her another question. I also avoided going to the doctor in general for insurance cost reasons (I used to say that my health insurance policy is, Don't Get Sick). So, otherwise feeling fine, I ignored it. Then I started experiencing other, more severe, symptoms, beginning about January of last year. I found a GP (after another one told me I all I needed was an antihistimine - I went to the pharmacy, got the drug, but it made no difference) and he said, waving my blood chart around, that I was the picture of health. I insisted that I could tell something was wrong around my ear, and he said (among suggestions that I was a hypochondriac), "Alright, if it'll humor you, I'll order you a cat scan". When it came back, he rather sheepishly acknowledged in another appointment that, yes, there is something there.

Anyway, I had surgery for an about high 3s or possibly 4 cm acoustic neuroma in October of last year by top-notch guys at a top-notch institution. But while there has been some slight improvement, mostly I feel pretty much the same.

This past year has been very hard. I can't begin to tell you. But it was what it was. I believe, because I have to, that healing will come. It just takes time. I've noticed in perusing this forum, that the word "patience" comes up time after time after time. Yep. Wow is this slow!

Over the past over 14 months ago I've thought about many things, many times. I'll list most of them them here. You can correct me if I'm wrong.

1)  The fact that so many have a pretty hard time with taking out the AN seems to imply that maybe the AN has a reason for being? If so, what is it for? Short-term memory? Stability (mental & physical)? Sense of self? Confidence? Keeping things in perspective? Something else? I wondered because these things, and others, seem to evaporate after surgery. Why did the AN start? Was it the Morsels? Other food or drink? Noise? Stress? Who knows? Like a lot of other medical problems, the causes still seem to be a mystery. Could AN be vestigial like the appendix that they thought had no reason for being and was routinely removed until someone found that it actually aids digestion? But for some of us, it continues to grow until it becomes life threatening. So again, who knows? The reasons are mysterious, and being mysterious, it was interpreted by my unconscious as if it could be anything that causes it. This uncertainty is very hard for the unconscious to take. If it could be anything, it seems like it could be something that maybe I'm doing right now, whatever that is, but just don't know. Some people say, "No, no. It's not food (or whatever)". But if they don't know what causes it, how can they say with confidence what doesn't? I've found during the last year plus that the unconscious is very primitive and very strong. Too strong. It seems to say upon removal, "What the HECK did you just do?" and then takes over. It's like a car wreck for suddenness. One minute you feel fine (unless you start having symptoms), the next - Look Out!

Also, the unconscious appears to take anything that's said that's negative about you as gospel fact. Belief and trust in words from authorities and in your body's own healing powers seems to be very important. How does the "placebo effect", or hypnosis or even faith healing-(sometimes) work? Belief. So having positive people who know and say you'll get better is essential. That's easier said than done though.

Later thought: Rather than vestigial, I've also wondered, could AN instead be a mutation, a pre-evolutionary addition to the brain? Could biology be experimenting in making something that might later have some use to us, but now in its early stages is often harmful? Who knows - too esoteric for me. It's probably just the mistake that most people believe it is. Still, taking it out (at least taking it out so quickly) seems for a lot of us, rather than helpful, to be detrimental.

2) Over the last year and more I have wrestled with fear, anger, boredom, depression and loneliness and envy of normalcy again. To be sure, I had those all before as is normal, but these were as if on steroids. Wow! I've had a feeling that I Have to accomplish something, but what it is I can't tell. But I want to get out. Yet I feel as if I can't because I'm exhausted and confused. So it becomes a "cognitive dissonance" of sorts. It's damned if I do and damned if I don't. And have I ever had confusion. Man! Forgetting things from moment to moment. So it's been for me a struggle against the negative unconscious, which seems to exaggerate threats so that you don't do it, whatever it is, again.

3) Did the main doctor just not like me? He seemed to leave in a hurry after I mentioned an illegal (but totally natural) drug for recovery because I read about it before surgery in an online science magazine that said that one dose can make you happy for life! He said he wouldn't prescribe me the drug and told me I can get someone else if I want to, then got up to leave. I quickly said no, his answer was good enough for me. I also dumbly suggested, on another visit, some possible cures (see below). I was desperate. But again, he seemed to take offense. Maybe I'm just being paranoid, as I've read is a problem with AN people with lots of symptoms after having it removed. I've listed more than 30 I've experienced. I also had a calf fracture while I was in the hospital. I didn't know what caused it but in my confused state thought it was related to the surgery. A month later at home I took a photo of it. I don't know where there it happened, but I do remember some young guy from PT telling me while I was in ICU to stand and hold a tray of stuff. I said I can't, but he insisted. I tried. Then they said my eyes rolled up in my head and I passed out. Asked the institute about it, but they deny there was any other injury I had in the hospital, and there's no record of the PT guy, they say. I didn't press it. But since then I've wondered if maybe this dividing of healing in the body (my head and my leg) possibly made it more difficult for me? I've also come to distrust people and places like that. Hospitals. I know there's good people who work there, but I can't help it right now.

4) About having some double vision, I wondered at first if it's due to pulling to bind me up behind the ear, that caused my eye to be a little off, and later, if perhaps it's gravity caused by the surgeon hitting a nerve(s) to the muscle around the eye making it drop slightly? Maybe it's the same thing that causes the dimple under that eye? How much of my spaciness is due to the vision problems? The doctor told me if I had any symptoms before surgery, I'll probably experience those same symptoms after. But while I had some double vision at the right corner of my right eye for a few months before, I never had vision problems like this. Besides, why have surgery at all if you'll just experience the very same symptoms afterwards that brought you in in the first place (except, I guess, that you won't die now)? Don't you go to the doctor to relieve the symptoms you're experiencing?

5) We don't actually know what happens during that long 12 hour surgery. How long do they actually take? How careful are they? What if human nature takes over? People like to cut corners. Take less time, or do it less carefully because they find it kind of boring. But their saving of a few hours might mean a lifetime of suffering for us. I've heard that there are something like 5,000 nerves in the face (and I've come to think that perhaps the nerves are us). I saw a video where one doctor was removing the AN from a person it seemed to me, very quickly. WTH? I couldn't help but think that he must be hitting nerves (that I'm told have the consistency of wet tissue paper) right and left!

Later edit: I wondered last night if maybe some doctors go fast so as to drum up later business from that seemingly bottomless insurance purse for their friends in plastic surgery that happen to be at the same institute? A few months after my operation, I remember the main doctor who worked on me recommending someone else there in plastic surgery and handing me his card. This needlessly causing the person worked on misery (again, that's if they are) cause you like to give business to your friends and figure they'll just fix things that your speed caused is not only anti-hippocratic oath, it doesn't always work. I've heard of cases where the individual doesn't respond well to these further surgeries.

6) I've noticed that nights, especially in the middle of the night, it seems to be gone, and I rejoice. Yea! I can call family and tell them! It's finally over! But maybe that's from not using the face, cause in the morning, it's still there. :/

7) Why aren't people (I prefer to use "people" here, not the impersonal "patients", which I dislike) told things after surgery, like it might be helpful to have support groups like the ANA? Why aren't they informed about dental issues, causing some to end up suffering needlessly (fortunately I felt a need to brush after every meal just in case I left something in my teeth but just can't feel it. Still, wow, is flossing and brushing after each meal inconvenient)? Why do they tell you you'll be normal in a month and a half, then seem to disappear after surgery if you don't? Why aren't people told to use aspirin or broccoli after surgery, but are actually dissuaded from it? I mean, I understand why you wouldn't want to use aspirin right after surgery. It can cause bleeding. But later on, I'm talking about. There are studies supporting the idea that aspirin is helpful to prevent recurrence*.

8) Why are there so many contradictions by those who supposedly know thoroughly about AN? Things like, you need to use massage vs NO DON'T, it'll cause Synkinesis! You need to use electrical stimulation to direct the nerves vs NO DON'T get any electrical device near your face! Why is the length of time you'll take to heal limited to one year (vs there is no time limit for healing), after which they seem to say (at least 3 people there did me) too bad, you've had all the healing your likely to ever get? Bye! I mean, why in God's name would you say that, even if true, and take away someone's hope?? Besides that, it's literally wrong, AFAIK. Healing is ongoing and is different for everyone, as I understand it. Once years ago at a job, I injured a finger, the last third of it. I accidentally drilled it. Blood everywhere. Had to go to a doctor. He told me I had a choice to remove some of the inside of the finger end to make sure I got everything. I said go ahead. By the look of it, he took a lot out. I had no feeling in that finger end for years after that. Used to curl it whenever I used the hand. Accepted that feeling there would never return. Then awhile back I noticed that, Hmm, Wow, it feels like the other fingers again, and I didn't even know! So now I believe that there is no time limit. Perhaps it's slower when you get older, but I believe that, with time, discomfort spurs change, an effort, back to normality again. That it doesn't stop until the discomfort is fixed (or there's an extinction event). That's the way things have always worked, right? Again, as far as I know.

Why did the main doctor say to me when I told him of my tongue and lips feeling burned after surgery, "I don't know what you're talking about. I didn't see any thrush in surgery" if he's such an expert? Why did he say before surgery "No" when I asked if the hearing in my ear would come back, but afterwards said, "I don't know. Maybe" when I asked him about possibly hearing things distantly afterwards (which has unfortunately faded again)? Why did a nurse tell me that the AN didn't "stick" to my nerves, thereby making it easy to remove, then this doctor (a few minutes later when he came into the room) tell me yes, it did stick? Why have I read that one of the remedies after surgery is to use cold flecks of water vs others who say that NO, cold water cause the nerves to recoil? Why do some claim that tingling in the face is a sign of healing, while others say that the tingling doesn't go away, etc? How can there still be no uniform way among experts even to tape the eye shut after surgery, etc? There just seem to be a lot a contradictions from authorities over this subject.

I think I would say to this having experienced it is, the head is unique in that it is the location of all 5 of the senses. Sight, Smell, Taste, Touch and Hearing. So if you have to work there, do it EXTRA carefully.

Possible Helps:

1) Electric Stimulation to direct the nerves after surgery, rather than just hitting them, then leaving their possible healing to haphazard, random chance.
2) Use a machine to remove the AN that's not maybe tempted to go fast, instead of a person.
3) Fill the empty space after removal with something organic but slowly dissolvable, rather than just taking it out in one fell swoop (if it's large) then leaving a void or vacuum (I imagine) and letting the chips fall where they may (i.e. nerves grow back wily-nily). For one thing, it may lead to double vision because of a stretched out optic nerve, right?
4) And related, rather than surgery and removing the thing in one fell swoop, why not put in place some kind of shunt that slowly removes the growth - and resulting pressure if it threatens the brain stem or otherwise grows too large? Could it be kind of like diving to great depths? Afterwards, rather than just going immediately to the surface, divers have to decompress slowly, which could take hours or even days or they could get the Bends, a terribly painful and even life threatening condition.
5) Use of some kind of hypnosis, or something to help people believe they will get better.
6) Send people home with some kind of anti-depressant (but without the ridiculous side effects please). Don’t just take something large out, then act surprised if they don’t respond perfectly. (Update: how about something like this? https://medicalxpress.com/news/2020-03-drug-ease-side-effects-medication.html.) One of the side effects of the anti-depressant the main doctor recommended for me, Gabapentin, on a video visit about a year after surgery causes double vision in I think he said in "only" 10% of patients. And he didn't even volunteer that bit of info, it was admitted only when I questioned him about it. I was told by someone else. Newsflash, why would I want to take something that could cause more of something that is already making me anxious as it is? Anyway, he says he can't prescribe anti-depressants. Only another doctor locally can do that (that's even though they prescribed medicine that we picked up at a pharmacy here right after surgery - another contradiction).

I'm wondering if dryness of the mouth and face is reflected inside part of the head too? So maybe one reason people get so depressed is because some chemical or hormone (don't know what it is, Serotonin? Dopamine?) also drys up. I wonder because if I use a little bit of alprolozam when I really feel I have to, I feel better. I try not to use it though because of the side effects.

A question I have for the experienced ones here: Is there some food or vitamin and/or mineral supplement that seems to help with this, besides aspirin and broccoli that is?

There's a LOT of money involved in AN, so maybe there's not a lot of desire for solutions? I don't know. But that's paranoia. Anyway, I plan to heal. You should too, because we will.

* Later note: I didn't think of this when I wrote this that aspirin, while an anti-inflamatory, also can cause ringing in the ear(s), which can get bad for some people. Rats! Very sorry. Well that leaves broccoli. https://pubmed.ncbi.nlm.nih.gov/27805058/

By the way, here's a set of videos from Queen Victoria Hospital that seem to help:

https://youtu.be/tLcKnnVSDMw
« Last Edit: November 27, 2021, 11:01:25 pm by A Hiker »

Director

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Re: Thoughts During The First Year
« Reply #1 on: January 05, 2021, 02:46:04 pm »

By the way, here's a set of videos from Queen Victoria Hospital that seem to help:

https://youtu.be/tLcKnnVSDMw

Dear A Hiker
*The videos can definitely be helpful but are not a substitute for individualized treatment. Every face, tumor and recovery pattern is different, so these will not be appropriate for everyone.* 

Thank you for your post,

Acoustic Neuroma Association

A Hiker

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Re: Thoughts During The First Year
« Reply #2 on: January 07, 2021, 01:10:52 pm »
I want to put all this on one post so I can bookmark it.

First, okay. About the link, I thought it was goodish, but I guess not for everyone. My apologies. Even with me, it hasn't been that great. But I keep trying.

Anyway, another contradiction which I neglected to put in the first account, concerns where this came from. Some people say that it's caused by a mutation in the 22nd chromosome. But others, that it's caused by noise, food or drink, stress, strain, or whatever comes to mind. Again, there doesn't seem to be a consensus of opinion. I know that that's just the way it is right now, but if they don't really know, maybe they should just say that. The subconscious mind would like to know what to avoid...

The biggest problems I have right now are with some tightness and numbness on one side, a double vision / unfocusedness when I look at things, everywhere, but especially at the corners (though when I look at a flat screen like the computer or the tv it appears to become clearer most of the time, who knows why). And numbness in one side of my mouth so that I can, so far at least, only partially feel, and have to floss and brush after every meal.

I've noticed that if you had any negative thoughts before this, having it removed so fast emphasizes those several times over (point #2). Also the slowness to heal, at least with large ANs, creates personal doubt that it'll ever heal, which, combined with inexplicable comments by some that there's some kind of one year time limit, makes it seem hard to overcome. Overwhelming even. So the enemy is doubt. I remember once someone said that, "Doubt is our product" about the effects of smoking. It's very effective (as we saw yesterday with events politically). There, then, in the meantime, needs to be some way for us to measure progress. To believe we will heal. I heard of one case, in a youtube video, where someone could measure how much her nerves had regrown everyday by using some sort of electronic device, but I'd have to go searching for it again. In the meantime, then, I've started a list of progress I see.

1) I can close my eye completely (at least enough to blink, shower and sleep. I can also close it independently of the other (but there's some synkinesis involved, rats). So I'm practicing massage (the link).

2) My right eyebrow can raise about 1/2 the height of the other (not drop though). This has been since about the 2nd or 3rd month. In that time it went from being mostly pointed down at rest, to being mostly raised up. 

3) My right leg is a little less weighty. I can lift it, and I can walk easier. Have gone many (albeit, miserable) miles hiking.

4) I'm less spacey then before (and was for about the first year or so).

5) My speaking has gotten better. Not quite as many people saying "What"? after every sentence :/ .

6) And I noticed maybe in the last week (Aha! this is well past a year!) that I can now purse my lips and drink from a glass without it spilling out the side.

Maybe we should consider having an AN removed to be like the stock market: everyday there's some progress, small though it is for some of us, and there are setbacks too. But the trend is up. Believe.

MarlaB

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Re: Thoughts During The First Year
« Reply #3 on: January 07, 2021, 03:33:59 pm »
Baby Steps my friend. You'll find your way. Stay well.

Marla B.

A Hiker

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Re: Thoughts During The First Year
« Reply #4 on: January 07, 2021, 07:19:10 pm »
Thanks much, Marla. At 14 months + it's hard to consider more baby steps, but there's no rushing recovery, I guess.

In the meantime, yeah, I probably do tend to over analyze things. But I appreciate the kind words.

MarlaB

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Re: Thoughts During The First Year
« Reply #5 on: January 07, 2021, 08:43:01 pm »
I'm ten years out, and the things I am working on to regain today are a million light years away from what I was working on after one year.

I think Mark Ruffalo said it was a while before the nerve in his face was doing better. I'm sure he's still doing his facial exercises.

I know others who were back doing Yoga after a few weeks. A doctor told me that balance, for one, is something we need to work on every day. I used to not be able to stand still with my eyes closed. Now, I work to close my eyes to stand on one foot. There is NO WAY I could have done that after one year.

We are all different, but we all have a sense of what you are going through.

Wishing you the best.

Marla B.

A Hiker

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Re: Thoughts During The First Year
« Reply #6 on: January 07, 2021, 11:21:56 pm »
PT had me try standing on their cushion with my feet together, arms crossed at the chest and eyes closed. I couldn't do it. I just tried again and, bummer, I still can't. I plan to try again tomorrow. My cushion is a couch cushion. It's like trying to stand while someone else is trying to knock you off.

You mention Mark Ruffalo. Yeah, that's another thing that's been kind of hard to take. I mean you're very glad for others that recover quickly. Even from supposedly large ANs. But you wonder what you're did or are doing wrong not to have recovered yet.

I have been able to ride a bicycle for some months now since I bought it just for this (though I haven't ridden for a while because of the cold). Surprised myself. But I still can't do that cushion thing. I can stand with two feet together (not on a cushion), arms crossed and eyes closed, and there's little movement, but when I tried the thing you do standing on one leg, I likewise found it very hard. I need to practice.                 
« Last Edit: February 02, 2021, 08:42:04 pm by A Hiker »

bfoley

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Re: Thoughts During The First Year
« Reply #7 on: January 08, 2021, 05:50:57 am »
Greeting A Hiker!

Please be patient and kind to yourself.  You had brain surgery and that is not something to be taken lightly.

I was not so brave and decided gamma knife was the best path for me.  My best advice is to keep moving as much as you can on a daily basis.  Because I have dogs that need to get out daily, I am getting out there moving.  Doing balance exercises in the corner of the room is my trick to stop me when I fall. 

Take care and keep us up to date as you progress !

A Hiker

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Re: Thoughts During The First Year
« Reply #8 on: January 08, 2021, 01:01:01 pm »
Thanks bfoley. Greetings. Gamma knife, how are you doing doing it that way? No, bravery had nothing to do with it, unfortunately. I had to have surgery, they said.

That PT thing with the cushion, by the way, wasn't the institute's PT department, but another place I found like 7 or 8 months later when one of the docs mentioned that it might help.

Btw, I don't mean to be selfish either. I'm far from the only person that has had AN. According to the net, 30,000 people a year (don't know if that's just in the US or abroad too) are diagnosed with this. Man!
« Last Edit: February 02, 2021, 08:45:43 pm by A Hiker »

judyette

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Re: Thoughts During The First Year
« Reply #9 on: January 10, 2021, 10:35:38 am »
after reading your story, my heart just wants to reach out to you.  I wish we could sit face to face and just talk about what you've written, freestyle.
what I'm hearing you reflect on, is the powerful ability we all have to affect our own healing, and the sometimes incongruousness with what we experience and what the doctors tell us.  I believe healing comes Totally from within.  Doctors are just other humans who happen to be very smart and have a lot of schooling in their specialties, but they have same array of emotions, motivations, etc. as everyone else.  some are all too happy to take credit and feel they've done well, and may actually even believe themselves that they've healed you.  but you've healed yourself.  even the surgery is a collaborative effort between you, your body, and the surgical team.
from recent medical experiences with having to take one of my daughters to the ER twice within a couple weeks time, and them still not knowing what is wrong with her, I recognize more than ever the limitations of our so-called healthcare system.  while it's better than nothing, and some medical professionals are indeed near-heroes, it still seems to me to be quite primitive in so many ways, despite all the high-tech equipment and exorbitant costs.  Our Own abilities to heal ourselves seem to be given the backseat, while the doctors and what they think and tell you is supposed to be the reigning influence.  I think we were raised to believe that doctors are somehow god-like all-knowing authorities, when they're not.  they're just other people.
my thinking is that you are correct to be examining the pathway between the subconscious and our daily waking consciousness, our beliefs, and the priority we assign to the varying sources of data, from both outside us (doctors, found on internet, etc) and what we subjectively experience, feel, and instinctively know.
I haven't yet had treatment for my AN, other than periodic MRI's to check for change.  I'm heavily leaning towards never having it treated, and if it takes me out, so be it.
I wish you well, and probably will continue to think of you, as your story here has hit me hard. Thanks for taking the time to share it.

A Hiker

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Re: Thoughts During The First Year
« Reply #10 on: January 12, 2021, 06:46:11 pm »
Thanks Judyette. Your post is right on, I think. That's how I think of it too. I recently saw the movie Star Trek: The Voyage Home (4 I think), and in it Dr McCoy is startled at the primitiveness of modern medical technology. I remember him saying at one point something like "That's his head you're working on, man!", and I thought, yep.  For me having the surgery seems disappointing. I mean, when it feels like it's finally healing, especially the middle of the night, I'm grateful. But other times, it just seems to be taking forever. But I'm in it now, and there's no going back. So I have to do what others have advised here, and that's be patient. There's no other choice. I have to stay positive.

It's just a lot for the body to have to handle. Spacey, kind of like when you see someone trying to start a motorcycle, and he's kicking that thing down, and kicking it down, over and over, and it's sputtering and sputtering. But he's doing it with the expectation that one of these times, hopefully not too far off, it'll finally catch. And there are the other physical things too. Still I think that it's getting a little better, and I'm making notes of it.

Who knows why these things happen? Not sure of the causes. But all kinds of things went through my head this past 1+ year. So yeah, It's been tough. Consequently I have to distract myself. Do stuff, something to take my mind off it.

I don't know how big your AN is. If you can afford to wait, or what your options are. Me, it seems like it just came out of the blue. It didn't really. It built up for years, but I didn't know, and I guess didn't really WANT to know. So I ignored it. For several reasons. But that last month before I went to the doctor I knew something was very wrong. So it's out, and they say it was completely removed so it shouldn't come back. So every day I hope, and I horde the little positives greedily.

I don't know how big your AN is but if it's small, they say you can have it removed and be back to work or whatever on the same day. If you're strong, I'd consider having it removed. Best of luck!
« Last Edit: January 17, 2021, 10:26:38 am by A Hiker »

A Hiker

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Re: Thoughts During The First Year
« Reply #11 on: January 13, 2021, 12:39:39 pm »
Editing this note because I forgot to add something.

Just thought this during the night. Guess I'm more of a Trekkie than I thought. I know, "Ug". Anyway, perhaps that's why, just waking up at night, I'm better and happier than during the day: Not only have I just slept and rested my face, but I've had dreams where I was normal again. IOW, I temporarily believed I was normal. So maybe the difference is, in fact, just believing. Maybe some people get better even though they have large ANs mostly because they simply believe in the doctors that they will. My thinking is that due to the, seems like, many bad experiences I've had with doctors etc. I've become distrustful and doubtful. I did say since having this AN, then having it out, I generally dislike hospitals and hospital people (above). Perhaps for any such operation to succeed, then, they need to find a way to (safely and non-secretively please) have you believe in it too, as Judyette above says? So I thought of that Star Trek episode, Gunfight at the O.K. Corral (edit: sorry, thats Spectre of the Gun). How to have you believe it, though, I don't know.

Or maybe I'm out in left field. In any case, I'll try to be more patient, as some have said above. :)
« Last Edit: January 13, 2021, 06:19:38 pm by A Hiker »

judyette

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Re: Thoughts During The First Year
« Reply #12 on: January 14, 2021, 12:42:43 am »
A Hiker:  my AN is much smaller than yours Was... last MRI, which was almost 2 years ago, it was 6 x 4 x 4mm, but it had also grown an extension into the cochlea not included in that measurement.  from what I understand, most grow out the inner end of the IAC, towards the brainstem.  I feel very fortunate that mine decided to misbehave and go the other way, lol!  though it sure is wreaking havoc with my balance, and I have pretty severe tinnitus.  plus now my chin, face, and lip on that side are (off and on) numb and tingly. 

I find it hard to trust in our healthcare system primarily because it is profit-motivated, with insurance companies often dictating what treatment you can and can't receive. I feel healthcare decisions should be up to you and your treating physicians, not an insurance company.  also, nowhere do I see allopathic doctors focusing on a person's own immune system, or even think about their beliefs and perceptions.  first thing my PCP does is whip out a prescription pad... for Everything!  at the very least, they could be a bit more well-rounded in their approach.  I, like you, see the importance of Beliefs in our well-being.  I'm thankful we have this forum to discuss such things. 


A Hiker

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Re: Thoughts During The First Year
« Reply #13 on: January 14, 2021, 01:59:17 pm »
Man, Judyette, if you're's is that small, I wouldn't wait much longer for it to grow bigger (if it is growing)! How many MRIs have you had, and how long has it been (you can keep it quiet if you want to; I'm just putting it out rhetorically)? But look for someone competent and caring. I used to see Dr - dang, I can't remember it now, but he sounded like the one of the best, though they say he's retired now. I think it started with a K and he was in the midwest. Can you have it surgically removed (I'm paranoid about living with that much radiation in my head)? I talked to a guy who had one bigger than you (but smaller than me) that had it taken care of (don't know how they took it out) but he was absolutely fine after that. Some doctors and nurses are actually caring about the individual, and the brain/body connection. The trick is finding them.

Which reminds me that there's a book out called, Your Body Believes Every Word You Say.

Yeah, I ignored it for insurance reasons. The usual, money and politics :P . It's been hard, but last night I felt like I could see clearly. That seems to be mostly at night (because I can't see as far?). Felt good about that. But I don't know if that's time or the weather (or what). It's very hot today. Anyway, you mentioned that if it takes you out, it takes you out. But it's small for you! I, though, didn't want to go out that way. When my time comes, I hope to be at peace, satisfied and contented.

By the way, I meant to say that I hope you're daughter is well. But try not to put doubt or distrust in her if you can. They seem to be an enemy, especially when she grows up.
« Last Edit: January 14, 2021, 02:20:43 pm by A Hiker »

A Hiker

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Re: Thoughts During The First Year
« Reply #14 on: January 17, 2021, 09:53:12 am »
I took my usual walk last night. It's about 3 1/2 miles long (also take long hikes during the day, but I've done them a lot :/ ). Still feeling somewhat spacey/forgetful but feel like I'm getting better on that score. Little yea.

Woke up in the middle of the night almost completely fear free but with my eye and half of my mouth feeling the driest they've been in a long while. Had to Refresh my eye and also keep the small vial by my pillow just in case. So, don't know what's going on. I do wish they would hurry up with healing. Sometimes I seem to see clearly, and most of those times I feel less spacey too, and I wonder if there's a connection. Sometimes, though, it seems like there's not.

I don't know what to say to the eye doctor. It seems like my eye is changing. I can't tell. They originally prescribed me prism glasses (used to have 20/20 vision and only wore readers), but even though they were done by, I believe, caring and competent people, I couldn't get used to them. They said my vision would resolve when I wore them, and it did in the one major spot, but they said I might have to turn my head to look at something. So the clear part was very narrow in front. I asked for (and told them I would pay for) a different pair. They did the test again and this time took the prism out. That was about 3 weeks to almost a month ago. Still waiting for the second revised pair. Still nervous it won't be right.

I want to amend my comments above a bit. Nothing big.
« Last Edit: February 02, 2021, 08:57:14 pm by A Hiker »