ANA Discussion Forum
General Category => AN Issues => Topic started by: Yardbird on December 29, 2008, 03:17:20 pm
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Dear ANA discussion forum friends,
Thanks again to everyone who responded helpfully to my initial post seeking advice about giving up MRIs for CT Scans if I should receive a pacemaker/defibrillator implant., I feel reassured now that a properly-calibrated CT Scan at high resolution and possibly using some injected dye would be considered sufficient.
The reason I'm not posting back and forth here as readily and congenially as everyone else is because I'm legally blind and using a screen reader (text to speech) program. While such a program is very powerful, and I'm generally a skillful computer user and Web surfer, and subscribed to a number of mailing list groups on which I'm very active, this site and its message functions are extremely difficult for me to navigate and use. This is because of issues of page design and page element coding. Add to that the exhausting symptoms I'm about to describe, the difficulty is just a bit too much to handle except for figuring out how to post an occasional message and find responses to it. I don't have the energy and powers of concentration required to plough through these problems very often. Thanks for your understanding. Please be aware that directions won't help unless they're from another blind computer person.
Now, here's the main medical issue that brings me here looking for some perspective. I'll run through the history as concisely as possible:
Left side acoustic neuroma diagnosed at House Ear clinic here in Los Angeles, 2005. After months of online research and informative participation in a very active acoustic neuroma mailing list, I decided on radiosurgery instead of microsurgery, in hopes of having a better chance to retain useful hearing in that ear compared to the chances even with the best microsurgical approach I was told could be done with the tumor given its size and position. "Translab" was first advised, which of course would have immediately caused total deafness in that ear. Middle fossa approach was not available given the tumor's position. And even though one neurosurgeon offered to do sub-occipital, which offers at least a statistical chance of saving some hearing, that chance was a pretty small percentage compared to those suggested by studies both of standard single-session Gamma Knife and even more outshone by multiple-session FSR (fractionated stereotactic Radiation) modalities like Cyber Knife.
I wound up getting cyber Knife at USC Hospitals here, February 2006. I'd found that they had Cyber Knife equipment there, which would have been a lot less of a project than somehow getting up to Palo AltoStanfard and staying there for a week or so. My travel options and finances not being easily amenable.
But the neurosurgeon, hearing that I might need to be fully sedated for the several Cyber Knife sessions in order to stay still, convinced me that Gamma Knife would be fine in my case, and they could fit an anesthesiologist and his equipment into the room where that was, whereas they couldn't in the Cyber Knife room.
So I accepted the doctor's reassurance that Cyber Knife would be good enough, in terms of the concern I explained to him about my hearing.
Now for the post-treatment story.
As early as my first post-treatment call-back with the neurosurgeon, I felt that something must be the matter. My balance was still worsening steadily instead of leveling off or showing even slight signs of improvement. My hearing was quickly declining; within a few months, hearing in the AN ear would be all but useless. And worst of all, I'd begun to feel as if there were a heavy weight inside my head that shifted back and forth with every movement I made. I told all this to the doctor on that first visit. Self-confidently, he told me that my balance would eventually return to normal so long as I remained physically active so that my brain had the chance to adjust. I understood the principle of this. But I could see it wasn't going to happen that way for me. The hearing, he said nothing about. He didn't know it would completely die in a few months, anyway, just as I had no idea .
But most troubling of all was this. I tried to tell him something unexpected and very bad was happening, aside from any other concern I'd been prepared to deal with. I told him I felt as if my head were a fishbowl, nearly full of water, and that the water was shifting back and forth with every movement of my head.
Oh, don't worry, he said. There's no water inside your head. I tried to explain that's not what I'd meant, but he simply didn't understand. He'd never heard of such a thing. He also, apparently, was only able to imagine that I might have heard something about CSF leaks post treatment and that's what I'd meant. There was no getting past this. "Surgeons tend not to be very good with metaphors," said my ex-wife when I described the incident and my frustration about it to her. I resolved to try not to use figurative language anymore when asking a doctor about this sensation, and discovered the phrase "intracranial pressure," which sounded sort of related but very dry, for one thing, and also it kind of presumed that I knew, or imagined I knew, the physiological cause. Which I didn't. I have no idea what's causing this. But I added "intracranial pressure" to my lexicon when talking to doctors, anyway. Just so they'd know I didn't imagine that my head was full of escaped cerebro spinal fluid, or something. Like actual water, for instance.
That was nearly three years ago. As I said, the next few months would see the near-disappearance of all hearing from my left ear. But that is something many AN people have suffered, either early on even without treatment or as a consequence of treatment. I wish this hadn't happened, but if that were all, even though it puts me on the road to Helen Keller city, I might not be complaining.
But the rest is the problem. My vertigo-like balance problem just got worse and worse instead of recovering, and the bothersome feeling of weight shifting inside my head became a feeling as if my head has a 16-lb. bowling ball rolling inside it, my forehead and cheeks are throbbing as if I'm being slugged in the face by a skilful middleweight who's holding back just enough to not knock me down, and as if my head's being squeezed in an industrial vice. Every waking moment. Worse some times of day than at others, but never ceasing. I stagger when I move about, no matter how hard I try not to. The head pressure and vertigo are so fatiguing that it's very difficult just to remain functional in daily life and not collapse.
One after another, I consulted other neurosurgeons, neurologists with experience in vestibular issues, even with one highly-regarded researcher at a nationally prominent local teaching hospital who I've seen quoted in New York Times Science Times articles. Not a single one had any idea what could be the matter with me, as they listened to my presentation and looked at my most recent MRI of the tumor, which from what I've been told, I think has not grown since the treatment. I was referred to only one of these doctors by my primary care physician. The rarest I had to find by Googling and looking at their profiles on the Web sites of local hospitals and med school faculty pages. None of them even referred me to anyone else except for one, also at that teaching hospital, who referred me upward to his superior, the head of neurosurgery. Who also had no idea at all what could be the matter with me, and said he'd resection the radiated tumor and simply cut the vestibular nerve if I wished, but he couldn't even suggest, let alone promise, that this would have any beneficial effect.
Many of them, upon learning that I was legally blind and seeing my long white cane, came a little too easily to the idea that my impaired vision was more than likely the cause of everything. I know quite well that the vision is the most important backup system to the vestibular system, but first of all I'm not consciously confused about what position my body's in, ever, and also I came informed about my retinal degeneration and the pattern of my visual fields, and eagerly asked if lack of sight or acuity in this area of my fields or that one could be contributory factors. But none showed any interest in this, which led me to distrust a lot else about their responses.
So that's where it stands, three years after treatment. Head throbbing in a way that would make a person scream if it happened to them suddenly, staggering about, feeling very dizzy with every turn of my head or even just my eyes, even sitting down. It's exhausting and very, very discouraging. Debilitating.
Assuming there aren't likely any doctors on this forum who are ENTs or neurologists< I'm not asking for diagnostic hypotheses if no one has any. But has anyone experienced anything like what I've described? I know it all may sound trivial compared to some of the horror stories I keep learning about post-microsurgery patients who've lost control not only of their balance but of their faces, eyes, and much else, although I guess in all the mailing lists and patient archives I've been around I never did hear of this pressure thing.
Please, if anyone has or knows of anyone with a similar experience, tell me about the situation and whom you've consulted with or been treated by.
Thank you very much for your time and attention to this admittedly long post. I hope it hasn't been too daunting to plow through.
Sincerely,
Joel
interrest Any Ay hceck naigatehavigate.
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**** I am a newbie but am in a typing mood today - so take what I have to say with a grain of salt! ***
I think your story does sound a bit horror like - it seems so many here return to a somewhat normal (or new normal) life, it doesn't sound like you have been able to. I am just about certain that doesn't help!
1. I would think a lot of your balance issues are related to your legally blind status - I just read someone else's link re the balance system (three systems - ears, eyes, and knees/legs - in very basic, high summary). With 2 out of three comprimised, I think it would be relatively normal, unfortunately, to have significant balance issues. It is discouraging that ENTs and neurosurgeons seem to disregard that. I do think that regardless that whether the sight issues and the hearing issues being compromised don't leave you confused about your body position, it is likely sending conflicting message because your eyes/hearing seems to at least be partially working (that almost seems like the worse case scenario - walking out on limb here, but I would love to hear other people's comments).
2. I think the the face and bowling ball issues are possibly nerve (everyone uses a nerve term here - trigenminial nerve - highly mis-spelled I am sure) - which sometimes arises as a result of radiosurgery and likely surgery. I have no clue what people do to ease the pain related to chronic nerve issues. My mother has chronic nerve pain and it overwhelms her life at times. While I agree that you definitely don't have water in your head, you would think an ounce of common sense would provide some insight into such a clear description - I think I know what you are talking about. (Good message for all of us - don't use analogies with the doctors - silly people, must have been removed at med school.)
3. What are your follow MRIs saying? If I remember correctly, post-radiosurgery types need annual MRI in the first period to monitor growth, necrossis, swelling etc. What has your original AN done?
4. And, last, I have a gander that I read this - and is one of my questions with radiosurgery, is that the balance nerve remains encapsulated and thus can continue to disintegrate over time and is irrelevant whether the tumor has any growth. Is the dying 'anti-AN' now causing more issues with your balance nerve than pre-surgery?
Good luck - I am sure the more experienced crowd can offer much more insight than my comments. I do hope you find a next step from the awesome people here.
Ann
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Hi Joel
The fishbowl, water balloon, bowling ball head is quite normal. The reason why I found that surgeons normally don't hear those terms is because they don't normally deal with patients for an extended period of time post-surgery. My Physical Therapist does. She said those descriptions were very normal coming from her patients. It takes training to get rid of it.
Unfortunately, I think you're going to have a harder time dealing with it due to your blindness. As you mentioned, the eyes are a critical element in the retaining of the vestibular system. I'm not sure what to suggest. I didn't notice if you mentioned it, but have you considered Vestibular Physical Therapy?
By the way, I too am dealing with the water ballon head -- and at times -- a bowling ball when it takes all the neck strength I have to hold my head up.
Also, since you're here in LA, there is a group of us who get together for lunch and coffee or to meet new patients at St Vincent. Each of us has had differnet procedures and are dealing with different issues. You're welcome to join us. Also, I don't know where you live in the area but I do have a recommendation of a Physical Therapist in Garden Grove.
Best wishes and please stay in touch.
David
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Hello Joel,
All I can say is that it breaks my heart when I read stories about people who have a medical problem, and then the cure seems to leave people worse off than before. I'm so very sorry and hope that you can find some relief soon. I've had a lot of minor odd ball things that seem to go on in my head but nothing compared to yours. :'( :(
I know it is of no help to you, but you do have my profound sympathies and I will say a prayer for you.
Sue in Vancouver USA
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Hi,
you are not alone in the bowling ball,fishbowl,heavy bobblehead throbbing whacked in the head w/ a baseball bat pff balance
feelings!
i am six months post op & have this feeling every single day &its driving me crazy.
I am so tired.i can rarely drive.Can definatly not work my love life is at about zilch.
i try to keep my chin up but its very very frustrating.
I really feel for you not being able to see on top of all this crap!
I have spoke w/ doc after doc also they say its post op side effects.
i am in vestubular rehab.
Hope you find answers,when & if you do please share w/ us.
Thanks Cindy
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Joel~
I am with Sue - it broke my heart to read of your struggles. While I guess some would consider me one of those with a lot of "complications" after surgery (including facial paralysis), I consider myself VERY blessed to be able to live my life pain-free. I, personally, would take a "different-looking" face ANY day over the pain and horrible sensations you have daily. I pray that you find some sense of relief and SOMEONE to listen & understand your problems.
K
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Hi, Joel:
Your situation is certainly frustrating, as many post-op/treatment issues usually are. Sometimes, to destroy the tumor, one has to endure some terrible problems that can almost break a person's spirit and definitely alter their life. Although I certainly sympathize with you I won't waste your time playing guessing games related to your disequilibrium. Frankly, I have no idea of the exact cause and apparently, neither do some highly-trained physicians. Although your blindness seems an easy culprit, I would think that after almost three years post-irradiation and with the AN being stable, you would notice at least a little relief and some minor improvement in your balance. Of course, I could be wrong. I'll simply hope and will pray that your equilibrium improves, soon.
Jim
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Hi Joel
The fishbowl, water balloon, bowling ball head is quite normal. The reason why I found that surgeons normally don't hear those terms is because they don't normally deal with patients for an extended period of time post-surgery.
Joel -
I agree with David. I also agree that you should look into vestibular therapy.
I'm so sorry you are having to deal with this; hang in there.
I'll keep you in my prayers,
Jan
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Joel,
I have found that some of my dizziness is Cervigogenic Dizziness which is a symptom of degenerative neck issues. I have the pounding head at times both with the AN and the C5-C6 herniated disc and pinched nerves. I can push on places on my neck and that pounding subsides. I am headed to another Neurologist after the new year to see what can be done for the neck issues. It feels like my head will explode sometimes, but I do know that part of it is the neck. Maybe try some massage therapy on the neck to see if that takes any pressure away.
Hang in!!!!
Sher
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Hi Joel,
You certainly are dealing with a boatload of problems! :-[ My thoughts and prayers go out to you as you try to deal with all your issues. I hope that you can get some relief for your pain, at the very least. I don't have any experience with these symptoms, but it sounds like some of the other forumites have had some of these problems. Maybe they can steer you in the right direction. I will add you to my prayer list!
Priscilla
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Hi All,
Since Joel has so much trouble working with our forum software, I have made an arrangement with him through email. I am copying each reply you make as an email to him, and he is emailing his replies back to me. I will be posting each one separately. Even though my name is on them, they are really from Joel. As I told him, it is really not much trouble, and I am quite happy to play postman.
I know that he really appreciates all of your responses, and I hope those of you with knowledge on the subject will try to help him out as best you can.
Steve
So here goes with the first batch...
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Hi Ann,
First of all, thanks for responding. But please know that I've studied up on how our balance systems work, and am aware of the importance of the
vestibular system, the vision, the joints (propioception) and the fact that low vision, let alone total blindness, is no help with a vestibular problem. But I would bet money that low vision isn't the *cause* of my problem.
I'm not at all denying that vision loss contributes to balance difficulties. But believe me, I know what I see and what I don't see, and I know the scope of my visual fields in each eye. Low vision is not at all the total reason for this problem, which is evident even if I'm simply lying flat on my back and just turn my head a degree or two one way or the other. I am not what you think of as "dizzy" in the normal sense. This is a neurological problem that is simply not just about my low vision. I may never find an adequate diagnosis, let alone an effective treatment, but I'm pretty sure it's not going to all be about just compensating for my somewhat blurry and patchy vision. Again, you'd have to be inside my head to say "oh! I see!"
1. I would think a lot of your balance issues are related to your legally blind status - I just read someone else's link re the balance
system (three systems - ears, eyes, and knees/legs - in very basic, high summary). With 2 out of three compromised, I think it would be
relatively normal, unfortunately, to have significant balance issues. It is discouraging that ENTs and neurosurgeons seem to disregard that.
I do think that regardless that whether the sight issues and the hearing issues being compromised don't leave you confused about your body
position, it is likely sending conflicting message because your eyes/hearing seems to at least be partially working (that almost seems
like the worse case scenario - walking out on limb here, but I would love to hear other people's comments).
I understand why you're imagining that the pressure in my head and face may be caused by damage to the trigeminal nerve. But half a dozen neurologists and neurosurgeons have had no comment like that at all, and I'm not saying that makes you wrong. I'm just saying that, even though I have done my homework, as we say, so that I'm prepared for a good discussion with these docs, they never have said "Wow. That sounds like trigeminal nerve damage." So it goes.saying no
(everyone uses a nerve term here - trigenminial nerve - highly mis-spelled I am sure) - which sometimes arises as a result of radiosurgery and likely surgery. I have no clue what people do to ease the pain related to chronic nerve issues. My mother has chronic nerve pain and it overwhelms her life at times. While I agree that you definitely don't have water in your head, you would think an ounce of
common sense would provide some insight into such a clear description - I think I know what you are talking about. (Good message for all of
us - don't use analogies with the doctors - silly people, must have been removed at med school.)
my follow up MRIs over the past three years have shown only that tumor growth has stopped, and that there is some visual hint of necrosis, meaning
cell death from the tumor's DNA being disrupted by the radiation treatment. The oncologist and neurologists, looking at the latest MRI, have never said that the tumor is touching anything that would cause such trouble. That doesn't mean I wonder if they're wrong, it just means yes, I've gotten
regular MRIs, and no, the tumor itself doesn't look to the doctors as if it would be causing problems. Personally, I wonder if that matters, and if the problem isn't damage done or still being done to the vestibular nerve, as someone else whose message I'll reply to eventually has suggested.
3. What are your follow MRIs saying? If I remember correctly, post-radiosurgery types need annual MRI in the first period to monitor
growth, necrosis, swelling etc. What has your original AN done?
Oh. I see now that it's you who made this suggestion. Sorry. I read by touching each line with a cursor that makes the computer read it to me. I
can't easily keep in mind what you'd just see a few lines above or below what you were treading or typing. yes, I think that's an interesting idea.
But don't forget, some folks undergo types of microsurgery that simply sever that vestibular nerve, and eventually most people regain a good bit of their balance as their brains reorganize themselves. In my case, whatever has happened to the nerve, I've had my balance tested much more thoroughly than even the normal tests, and it's clear I simply have no balance signals coming to my brain from the left side at all. That should not be any worse than having had surgery where that nerve was cut.
Again, thank you very much for your response,
Joel
(please see this earlier post regarding why this is posted by Steve: http://anausa.org/forum/index.php?topic=8368.msg90490#msg90490)
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Dear David,
thanks very much for responding to my post.
The reason why I found that surgeons normally don't hear those terms is because they don't normally deal with patients for an extended period of
time post-surgery.
David, I've consulted a couple of neurosurgeons, and the rest were neurologists who do have extended contact with patient. That includes a noted researcher who specializes in balance and vestibular issues and has plenty of time and background to contemplate these things. Common as you say my sensations are of my head exploding and weighing a ton, the non-surgeons were complete blanks upon hearing about this, too.While you say it's common. Maybe some highly skilled ENTs might find such things more familiar, do you think?
My Physical Therapist does. She said those descriptions were very normal coming from her patients. It takes training to get rid of it.
I went to about five sessions with a pro therapist at the Rehab Center at UCLA neurology. She did not find my symptoms familiar-sounding at all, despite her considerable experience. She tried to teach me techniques to disrupt my brain's balance center and retrain it, but over those five sessions, and practicing everything she taught me between sessions, I never felt even the slightest hint of either discomfort that might be creative (you know, a new balance confusion that might eventually settle into new balance) nor did I feel any slight physical change in anything, standing or walking or whatever. If the process is so subtle that it would take years to accomplish, suffering all the while, I feel skeptical.
Unfortunately, I think you're going to have a harder time dealing with it due to your blindness.
As I've said earlier, I'm not entirely blind, and though poor vision is most likely a contributory factor in some circumstances, it can't possibly be the cause of what I feel lying down or sitting still if I simply move my head a fraction of an inch, for example, nor of the pressure in my head and face. The therapist's only interest in was possibly helping me to overcome staggering when i walk, which is especially bad when I stand up after sitting or lying down for more than a couple of minutes. I had no no confidence that she understood how any of this worked with me. I talked to others on the same staff, but they too seemed to think I must just be dense or too impatient or something, while failing to sound as if they understood my physical experience. This was discouraging.
As you mentioned, the eyes are a critical element in the retaining of the vestibular system.
Maintaining balance, you mean? I know. But as I said above, I'm not unable to see anything of my surroundings. I know my fields of vision and I understand the neurology of this, and no doctor or therapist was willing or able to discuss this in terms of just what about my faulty vision would cause the most difficulty. Believe me, I gave them a good opportunity to be specific. Central vision, mid and far peripheral vision, motion awareness, visual acuity, points of focus. I was ready to learn just what would most confuse the brain in the absence of function from one side of the vestibular system. I got no useful response at all. Didn't' go anywhere. And I had to remind them that I'm low vision, not blind, and there's a meaningful difference. It took me a couple of doctors to learn that, because at first, they just made assumptions without asking me for any particulars about how my vision works.
I'm not sure what to suggest. I didn't notice if you mentioned it, but have you considered Vestibular Physical Therapy?
yes, as i said. I think I read below that you see the woman who's connected with House (Garden Grove, right?), last name England, I think? But I live alone and don't drive, so Orange County isn't somewhere I'd go for this. Also, UCLA is not exactly a village clinic in rural Mexico. Not meaning to be sarcastic, but I feel as if I did get a good taste of professional therapy. Not that I'm unwilling to try someone else if that seems my only option to help with any of my problems, but that's another question.
Also, since you're here in LA, there is a group of us who get together for lunch and coffee or to meet new patients at St Vincent. Each of us has had different procedures and are dealing with different issues. You're welcome to join us. Also, I don't know where you live in the area but I do have a recommendation of a Physical Therapist in Garden Grove.
I skipped ahead a little by mentioning physical therapy and ms. England. I live in the Beverly Fairfax. I know that St. Vincent's is the hospital close by the house Ear Institute, where their surgeons have privileges and perform most of their operations. It might be nice to meet people in a support group, so if you'll tell me more about where and when you meet, i'll be able to make travel arrangements by paratransit services. I do take the bus here and there, but I wouldn't take the bus down to Third and Alvarado and home again. which wouldn't stop me from dropping in at least once to get acquainted.
Thanks a lot for responding. It's comforting to know I'm not alone in my difficult experience,although of course my desire is to find credible
diagnosis for what's going on, and if possible some treatment directed at the cause. If possible. I'm not ready to give up on trying to find medical intelligence that can br brought to bear on this. Not yet, anyway.
Best,
Joel
(please see this earlier post regarding why this is posted by Steve: http://anausa.org/forum/index.php?topic=8368.msg90490#msg90490)
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Hello Joel,
All I can say is that it breaks my heart when I read stories about people who have a medical problem, and then the cure seems to leave people worse off than before. I'm so very sorry and hope that you can find some relief soon. I've had a lot of minor odd ball things that seem to go on in my head but nothing compared to yours. :'( :(
I know it is of no help to you, but you do have my profound sympathies and I will say a prayer for you.
Sue in Vancouver USA
Sue, thank you so much for your sympathy about my difficulties. it's true they're pretty dramatic, to put it nicely, and that I feel as badly as you'd expect to have incurred such disastrous results from what I'd hoped was a prudent treatment for a medical problem. To this day, I don't really know if the treatment itself contributed to these problems, or if all of this might have happened anyway whatever treatment I'd chosen. And although I am complaining shamelessly about what's happening to me, I'm sadly aware that people who've had other treatments, particularly microsurgical "resection," as the doctors call it, often suffer what I'm afraid I have to admit seem like worse horrors than I'm dealing with. Faces all out of control on one side like something out of a horror movie, eyelids that won't close, ringing in the ears (tinnitus) that's so loud it would drive most people mad, and much else. I'm really perturbed that this whole acoustic neuroma thing can turn out to be something that can be so crippling to a person's life, even if they do the responsible thing once it's diagnosed.
Sorry to go on like that. But just getting a little basic sympathy kind of makes me want to express my sorrow and anger,. it's all natural enough. I'm still keeping my head up, as they say. Fighting to be functional and non-depressed as best as I can. Keeping the faith, so to speak.
thanks again,
Joel
By the way, where or what is Vancouver, USA? I live in Los Angeles, California USA, for instance. What is Vancouver besides a city in Canada?
thanks.
(please see this earlier post regarding why this is posted by Steve: http://anausa.org/forum/index.php?topic=8368.msg90490#msg90490)
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Hi,
you are not alone in the bowling ball,fishbowl,heavy bobblehead throbbing whacked in the head w/ a baseball bat pff balance
feelings!
i am six months post op & have this feeling every single day &its driving me crazy.
I am so tired.i can rarely drive.Can definatly not work my love life is at about zilch.
i try to keep my chin up but its very very frustrating.
I really feel for you not being able to see on top of all this crap!
I have spoke w/ doc after doc also they say its post op side effects.
i am in vestubular rehab.
Hope you find answers,when & if you do please share w/ us.
Thanks Cindy
cindy,
Thanks for writing, even though you're obviously as frustrated as I am. It's good to know I'm not from outer space on this problem, but that others can't get anyone to really figure out and/or treat these problems, so that rehab is like the only resort, as if you've had your legs blown off in Iraq and you just have to learn to use a wheelchair. But, instead of my just being cynical, let me ask you to please say more about your rehab and what your experience is so far with that. Good, bad, whatever. I'd just like to hear more about it. Thanks so much, and do keep your chin up (i've taken to saying "head," which I must've picked up from young acquaintances into hip hop expressions, sort of. Do try to stay strong, despite all. if it helps to think about it, please remember to feel glad you're not going blind, on top of everything! Seriously. I'm laughing, but really. Okay?
Joel
(please see this earlier post regarding why this is posted by Steve: http://anausa.org/forum/index.php?topic=8368.msg90490#msg90490)
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Joel~
I am with Sue - it broke my heart to read of your struggles. While I guess some would consider me one of those with a lot of "complications" after surgery (including facial paralysis), I consider myself VERY blessed to be able to live my life pain-free. I, personally, would take a "different-looking" face ANY day over the pain and horrible sensations you have daily. I pray that you find some sense of relief and SOMEONE to listen & understand your problems.
K
Dear K,
Thanks so much just for being able to sympathize with my plight, despite your own obviously difficult problems post treatment. Yes, I guess I might be more easily able to bear hemifacial paralysis than feeling as if an elephant is sitting on my head day and night, as a dear 12-year-old friend and I like to joke about it. But as I've said a couple of times to other forum friends just now, simply knowing that someone doesn't think my problems are either sort of imaginary or are just slight side effects that aren't worthy of serious diagnostic interest makes me feel a lot better and more able to stay strong and try to do my best. So a profound thank you for that.
Joel
(please see this earlier post regarding why this is posted by Steve: http://anausa.org/forum/index.php?topic=8368.msg90490#msg90490)
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Hi, Joel:
Your situation is certainly frustrating, as many post-op/treatment issues usually are. Sometimes, to destroy the tumor, one has to endure some terrible problems that can almost break a person's spirit and definitely alter their life. Although I certainly sympathize with you I won't waste your time playing guessing games related to your disequilibrium. Frankly, I have no idea of the exact cause and apparently, neither do some highly-trained physicians. Although your blindness seems an easy culprit, I would think that after almost three years post-irradiation and with the AN being stable, you would notice at least a little relief and some minor improvement in your balance. Of course, I could be wrong. I'll simply hope and will pray that your equilibrium improves, soon.
Jim
Thank you, Jim. You're right, the vision problem, while not totally blameless, is much too easy an explanation, and if you were behind my eyes and inside my body you'd immediately agree. you just say the word "blind" or the phrase "partially sighted," and people, including more than a few doctors, immediately think, Oh, of course. That's it. Without asking a single knowledgeable question about how I actually see and what I don't see clearly, or anything about the state of my retinas, which has to be very crucial in this. Plus it can't have anything to do with the head pressure thing that's so debilitating, and a bunch of other objections that come easily to me. You bet I'm frustrated. I think a truly interested scientific person would really look into it, including any contribution that impaired eyesight might of course make to some of this, and come up with ideas about what could be happening to the brain's balance center. To me, it's something that ought to be worth curiosity. I can't believe I'm not getting any of that, yet. I read all these great stories that are so popular these days about how a doctor followed up this hunch or that that was not the way some other doctor had been thinking, and figured out the cause of a very troublesome or potentially lethal problem some patient had that was not responding to treatment as expected. I mean stories in pretty sophisticated and not uncritical places like the New York times Magazine and such. Not little inspirational newsletters or anything. But where is that brilliant, interested doctor for me, instead of all these seemingly semi-autistic guys (and it's always guys, in this area, so far in my experience).
Jim, Thanks for the kind words. I am not only frustrated and weighed down by this stuff, but also I remain truly interested, if not that hopeful anymore. Not just cynical or defeated.
Best,
Joel
(please see this earlier post regarding why this is posted by Steve: http://anausa.org/forum/index.php?topic=8368.msg90490#msg90490)
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Hi Joel
I do hope you find some new ideas to pursue.
I have to apologize for my post - a little bit of newbie exuberance that is very obviously out of place on this board - given your knowledge as well as the knowledge of the other people on this board. I will tame my exuberance in the future and just be a question asker instead of an advice giver.
I certainly don't mean that to sound sarcastic - my response was too basic. I will admit sometimes going back to the basic is a good start (I do that at work a fair bit - start from step 1 again and again if things aren't working well, think out of the box etc).
Nevertheless, I hope you find the next avenue from people's suggestions. I have learned a bit from the various responses (so much better than my own). Your story has again put the solution to the problem being worse than the problem - at least in my case - that it reduces my fear that watching is best for me - so I guess we all learn from the various responses here.
Ann
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Joel -
I agree with David. I also agree that you should look into vestibular therapy.
I'm so sorry you are having to deal with this; hang in there.
I'll keep you in my prayers,
Jan
Hi Jan,
thanks for replying to my post. As I told David, I've already been introduced to therapy with absolutely not the tiniest feeling of effect or a sense that my problems were actually understood. As I said, it isn't that I'd refuse to try another therapist or program sometime, but I am simply not going to spend hours and hours of my life taking Paratransit buses for the disabled back and forth to a rehab clinic while I continue to feel like a marionette whose strings someone occasionally cuts so that its legs seem to just buckle, while my head continues to throb in a way that would force any of these doctors and therapists to retire from their careers.
again, thanks.
(please see this earlier post regarding why this is posted by Steve: http://anausa.org/forum/index.php?topic=8368.msg90490#msg90490)
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Joel,
I have found that some of my dizziness is Cervigogenic Dizziness which is a symptom of degenerative neck issues. I have the pounding head at times both with the AN and the C5-C6 herniated disc and pinched nerves. I can push on places on my neck and that pounding subsides. I am headed to another Neurologist after the new year to see what can be done for the neck issues. It feels like my head will explode sometimes, but I do know that part of it is the neck. Maybe try some massage therapy on the neck to see if that takes any pressure away.
Hang in!!!!
Sher
Sher,
Wow, what you've got going there sounds like a real drag! I'm afraid none of my stuff is due to spinal or neck issues. I'm sure of that. Wish there was some connection, but there isn't. I'm glad you've at least got some factor that you can identify and get some help with. I mean, horrible as your symptoms sound (and pretty familiar, as you know), I'm a little envious. Sounds perverse, huh? Well, you know what I mean.
here's hoping the help you get has a significantly beneficial effect.
joel
(please see this earlier post regarding why this is posted by Steve: http://anausa.org/forum/index.php?topic=8368.msg90490#msg90490)
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Hi Joel
I do hope you find some new ideas to pursue.
I have to apologize for my post - a little bit of newbie exuberance that is very obviously out of place on this board - given your knowledge as well as the knowledge of the other people on this board. I will tame my exuberance in the future and just be a question asker instead of an advice giver.
I certainly don't mean that to sound sarcastic - my response was too basic. I will admit sometimes going back to the basic is a good start (I do that at work a fair bit - start from step 1 again and again if things aren't working well, think out of the box etc).
Nevertheless, I hope you find the next avenue from people's suggestions. I have learned a bit from the various responses (so much better than my own). Your story has again put the solution to the problem being worse than the problem - at least in my case - that it reduces my fear that watching is best for me - so I guess we all learn from the various responses here.
Ann
Hi Ann,
I'm a little perplexed by what you say, because it sounds as if I may have spoken more harshly than I meant to? There's no reason for you to apologize for offering your thoughts, is there? This is a forum, and you expressed reasonable ideas that occurred to you, and I certainly don't have the answers I need about the stuff I'm experiencing medically. I just tried to respond in a methodical way, point by point, in what I hoped was specific and respectful. I didn't mean to make you feel attacked in any way! Honest.
Again, you have nothing at all to apologize for, and I'm certainly sorry if my attempt to respond to your message as carefully as I could turned out to seem insulting in some way. I didn't mean that at all.
Best,
Joel
(please see this earlier post regarding why this is posted by Steve: http://anausa.org/forum/index.php?topic=8368.msg90490#msg90490)
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Hi Joel,
You certainly are dealing with a boatload of problems! :-[ My thoughts and prayers go out to you as you try to deal with all your issues. I hope that you can get some relief for your pain, at the very least. I don't have any experience with these symptoms, but it sounds like some of the other forumites have had some of these problems. Maybe they can steer you in the right direction. I will add you to my prayer list!
Priscilla
dear Priscilla,
thanks so much for your kind response. I'm surely hoping that I will be able to exchange useful information and helpful thoughts and feelings here in this fine group.
An Happy New Year to everyone, despite whatever their challenges may be. Let's all keep our heads up and try to do justice to the gift of our lives while we have them!
Joel
(please see this earlier post regarding why this is posted by Steve: http://anausa.org/forum/index.php?topic=8368.msg90490#msg90490)
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Hi Joel,
I too had CK 7 months ago. I am having more than normal dizziness and balance issues. I also feel fullness in my head, and 85% functional hearing loss. I have explored the TTG injection option. I decided against it for now. I don't know if you looked into it. I also went through extensive balance testing. Mine registered 100% loss in my right ear. Luckily for me my AN Doc specializes in balance and in pre and post treatment for balance. He mentioned, as thorough as the testing is, it cannot completely test for balance issues in the nerve. He feels a Labrinthectomy has a 95% chance of fixing the issues. I don't want to pursue that yet either. In addition I have eye issues nestagmus and oscillopsia, nothing like your eye issues...and don't laugh....a big toe issue. Before diagnosis I thought the surgery on my big toe, rendering it too small to be functional had caused the balance issues. It definitely didn't as I now now but it sure doesn't help either.
I guess what I am suggesting for the grain of salt it is worth is your situation and mine may have a connection in more than just symptoms. there is more than one balance issue we are dealing with. I hope you find some answers. Ongoing vestibular exercises have helped to some extent but that nerve keeps letting me know it is mischievous! I wish I had wonderful insight but I know I feel tons of compassion for you. Hang in there - we super wonky heads have to stick together!
Mary 8)
PS - Thank you Steve for helping us communicate with Joel!
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Dear Joel....this is Judy....Fresno,Ca....4 years out from CK @ Stanford, and experience the same issues. My head is 24/7 full, pressured,sinus type fulness.lost hearing on left side. You could almost draw a line down the middle of my face with issues on the left side (affected side). headaches everyday....some worse than others. When I get up in the morning I'm truly the best I am going to be for the day. By 2:00 PM I am fatigued, regardless of hours of sleep,...the pressure builds, balance gets even more difficult...noise/conversation becomes more difficult. I have had vestibular rehab....excercises to perform....a whole variety pack. No concrete remission of issues. I am now experimenting with the Wii Fit/Sports editions. With your visual disabillities I'm not sure if you could try them. They do provide a great deal of entertainment to my grandchildren as they cheer me on.....laughingly yelling "Go Nanny" I have to laugh myself.....but I keep trying. I definetly think at least my issues are caused from damage to the nerves. As the dynamics of the "dying process" are ever changing....thus irritating brain tissue....and the radiation have brought these issues forward. At this point my best solution is competent massages regularly. They seem to release the water filled tissues in head and neck and relax the tension in my body used to keep myself upright. This feeling of fullness is relieved and then begins to reappear.....another massage is needed. She comes to my home in the evening, is reasonably priced (well worth any cost) and I feel better all over.....able to cope more effectfully....with my problems. I so sympathize with you and hope you can find at least some answers here...You at least have come to a scource of caring and sharing of information that is most helpful and reassring in times of sheer frustration. I know from personal experience this site is full of wonderful, responsive people. I hope you can find some degree of peace in just knowing you are not alone in this search for answers...keep up the good fight and together we all might bring about the changes needed in the medical community to hear us when we ask.
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Dear Joel....this is Judy....Fresno,Ca....4 years out from CK @ Stanford, and experience the same issues. My head is 24/7 full, pressured,sinus type fulness.lost hearing on left side. You could almost draw a line down the middle of my face with issues on the left side (affected side). headaches everyday....some worse than others. When I get up in the morning I'm truly the best I am going to be for the day. By 2:00 PM I am fatigued, regardless of hours of sleep,...the pressure builds, balance gets even more difficult...noise/conversation becomes more difficult. I have had vestibular rehab....excercises to perform....a whole variety pack. No concrete remission of issues. I am now experimenting with the Wii Fit/Sports editions. With your visual disabillities I'm not sure if you could try them. They do provide a great deal of entertainment to my grandchildren as they cheer me on.....laughingly yelling "Go Nanny" I have to laugh myself.....but I keep trying. I definetly think at least my issues are caused from damage to the nerves. As the dynamics of the "dying process" are ever changing....thus irritating brain tissue....and the radiation have brought these issues forward. At this point my best solution is competent massages regularly. They seem to release the water filled tissues in head and neck and relax the tension in my body used to keep myself upright. This feeling of fullness is relieved and then begins to reappear.....another massage is needed. She comes to my home in the evening, is reasonably priced (well worth any cost) and I feel better all over.....able to cope more effectfully....with my problems. I so sympathize with you and hope you can find at least some answers here...You at least have come to a scource of caring and sharing of information that is most helpful and reassring in times of sheer frustration. I know from personal experience this site is full of wonderful, responsive people. I hope you can find some degree of peace in just knowing you are not alone in this search for answers...keep up the good fight and together we all might bring about the changes needed in the medical community to hear us when we ask.
Hi Judy,
Thanks so much for responding to my thread here. Your experience sounds similar to my own in many ways, although different in others. For instance, I do have my period of greatest ability to do things and think clearly in the morning, but it's only because I'm rested, which allows me to stand up better to my head pressure and vertigo for a couple of hours. But the moment I awaken, sit on the edge of the bed and then stand, I'm already fighting against head pressure and dizziness that's very extreme. Just lifting my head from the pillow begins these feelings, and standing up after lying prone for hours requires me to reach out with both open hands to hold myself up so I don't just topple into the bedroom wall like a felled tree. The balance becomes a little more manageable after an hour or so, but "manageable" is all I mean, and to most people that would seem a heroic effort, not a relief from the problem.
I don't know what WII is, but if it's video and exercise that involves focusing on something, I lack the central retinal vision that's needed to see a TV picture clearly or focus on a point. So solutions or therapies that require that kind of vision aren't possible for me to try.
I'm glad your regimen of massage has been helpful, and I'm sure I'd consider that a wonderful luxury, although such services are out of my very modest budget. But muscle tension and that sort of thing isn't really a conscious problem of mine in connection with my vestibular difficulties. That doesn't mean that massage as well as many relaxation techniques, from biofeedback to meditation, wouldn't be a nice relief and distraction. But that's about it for me, I'm afraid.
Strange as it may sound, I'm a little bit reassured to learn that you had your treatment done at Stanford, because the neurosurgery department there is nationally respected, as I learned from the Acoustic Neuroma mailing list I was on a couple of years ago, for its expertise with acoustic neuromas, especially their pioneering use of the Cyber Knife protocol. So maybe going to USC wasn't really my downfall, just something more like the reasons you're guessing at, I think very intelligently, even if no solution is being found yet.
Thanks again for your comments, and just hearing how similar you feel is some encouragement not to feel as if I'm just imagining all this grinding stuff that's happened to me since I underwent radiosurgery.
All best,
Joel
(please see this earlier post regarding why this is posted by Steve: http://anausa.org/forum/index.php?topic=8368.msg90490#msg90490)
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Hi Joel.....happy to receive your reply....I sit on the edge of the bed for a few moments and pushing my shoulders down....allow my head to fall forward....chin to chest....then proceed with a few head rolls.....clockwise then reverse......taking deep yoga type breaths.....then very slowly rise.....stabilizing myself and focusing on my path. I rise quite early as I experience body pain....induced from lying down for extended period....in neck.....shoulder, hip, knee and ankle joints. About 6 months ago I purchased from footsmart catalogue 2 pairs of "flips....orthodically constructed that are desiigned to excercise calves,thighs and abs....also support feet/ankles so that I walk/stand correctly. You must begin wearing them at short intervals to avoid muscle soreness. I now purchased winter version....same idea but front enclosed.....will accomodate socks if necessary. I bought my 2 adult sons(Christmas gifts) the same ones as they are now made for men. They look the same but have much larger sizing......they LOVE them.....they both suffer from heel pain. They are adults 44/46 and have been wearing Birkenstock's for casual wear with not even close to same results. I too have the Birkenstock's same deal.....not nearly as effective for me and balance issues. I am able to stand for longer periods of time....walk more confidently....legs getting stronger. Head still has fullness etc. but balance improving. Last night I had them all here for a delayed Christmas dinner and one said to me " it sure is great to see you at the stove again Mom" I love to cook and have not been able to stand for extended time to cook such elaborate meals in a long time. I replied "it's the shoes" If you are interested I will forward more info to you.....they are modestly priced at $60 +SH......well worth the investment.
Hope to hear from you soon.......keep trying....sometimes we have to find our own solutions.
Judy P.S. My late husband's name was Joel.....he passed in 1995.... we were married for 38 years. I was unable to help him survive the ravages of Diabetese. It is heartwarming to me if I can in some way be of help and comfort for you.
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Hi Judy,
Thanks for explaining the details of your personal therapy regimen and issues related to footwear. I may in fact try to do some of the head motions you describe at the moment when I'm rising from bed, before I stand up. But I can tell from your description that I probably won't be reporting that doing this changes very much.
As you describe your condition, it sounds as if we're very different in terms of our physical experiences and conditions, even if we think we feel some of the same things, in some ways. I don't have any particular problem standing still for a while, though for general reasons I do eventually get weary in a way I wouldn't have a few years ago. But it's not as if I am fighting against falling down all the time. That's just when I rise to my feet after sitting a long while in a chair or a car, or of course after lying prone in my bed for hours during the night. And staggering a bit as I walk down the sidewalk isn't much fun, and managing this of course makes me pretty tired. but I am familiar with the footwear issue as you describe it, and I'm certain that has nothing to do with my problems. My posture isn't faulty, my footgear support isn't a problem in any way, whether I'm barefoot or wearing a variety of properly fitted and supportive shoes that I own. I'm fortunate not to have any chronic pains in any of my limbs, joints, back or neck.
As for standing in the kitchen prepping a recipe and then standing over the stove to cook it, the only thing that's dangerous is for anyone to try to chaste me out of the kitchen while I'm working, especially if I've got my triangular-bladed chef's knife in hand . I say this so you know that talking about the kitchen isn't exactly alien stuff to me.
Also, I exercise regularly in a routine that I vary from workout to workout, trying to approximate the various things I did at a gym for years until I decided to work out at home. I ride a stationary bike at an aerobic pace for a solid amount of time. I do sets of push-ups, abdominal crunches, overhead presses with a bar and free weights, bicep curls with hand weights, triceps work, squats with the bar across my shoulders, and so forth. The only impediment isn't pain or weakness, it's having to bravely hold up against the head throbbing (not exactly a headache, I have to explain) and feeling as if the world is always going back and forth unless I keep my head and my gaze perfectly immobilized, which is difficult to do because it's not at all natural. So it takes some extra spirit and determination to overcome those problems and work out anyway, but when I do I'm rewarded to know that I'm treating my poor old heart well by giving it some work to do, that I'm not letting all the muscles in my body turn to jell-O, and of course I simply feel elevated in mood and happier after I work out, for the usual nice changes in my brain chemistry having to do with endorphins.
So, as I say, I don't think the system that seems to alleviate your physical stability and strength problems sounds like a good fit for me. But I'm really glad to hear that you've been so enterprising and found some helpful products and techniques for yourself. That's great.
Keep up the good work. And thanks again for providing more thoughts and experiences for me to learn from.
Joel
(please see this earlier post regarding why this is posted by Steve: http://anausa.org/forum/index.php?topic=8368.msg90490#msg90490)
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Hi Joel.....happy to receive your reply....I sit on the edge of the bed for a few moments and pushing my shoulders down....allow my head to fall forward....chin to chest....then proceed with a few head rolls.....clockwise then reverse......taking deep yoga type breaths.....then very slowly rise.....stabilizing myself and focusing on my path.
P.S. To Judy T. about rising from bed:
Judy, thanks for describing the exercise you do before standing up out of bed and beginning to walk. But I've tried doing what you say and my situation is dramatically different. Just turning my head a little one way or the re other, let alone doing sort of "head rolls," as we say,involves such a feeling of weight and pressure moving back and forth inside my head that it's impossible to keep doing on purpose. The same with breathing carefully and deeply, moving carefully, and so forth. My problem seems to be so fundamental that no exercises or changes in the way I move can help, only sometimes minimize the problem as long as I concentrate on keeping my eyes or head in one position or throwing my arms out for balance like a tightrope walker . I'm afraid there's nothing "misaligned" in my body except for some circuits inside the balance center of my brain.
But just to let you know I gave it a shot. I'm pretty sure that what I need is either a medicinal corrective or a surgical intervention of some sort, and it's left to me to find out how to pinpoint the problem and find doctors to propose possible solutions .
thanks again,
Joel
(please see this earlier post regarding why this is posted by Steve: http://anausa.org/forum/index.php?topic=8368.msg90490#msg90490)
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I feel I really ought to add something to the explanation I posted about keeping up an exercise program in the face of my heavy head pressure/vertigo. I certainly didn't mean to come off macho, for example; it took every ounce of my will power to not get off the stationary bike and just lie down on my bed and be sad because just moving my eyes or tilting my head the tiniest bit makes everything go crazy. I kept trying, and I'm proud of that.
But since the onset of heart failure just a couple of months ago, I have been too weak to persist at this heroic effort. Now I'm being treated with medication and considering the implant of a defibrillator device, and just can't do the exercise anymore at least right now. it's too much on top of the vestibular problems!
So I'm not a superman, and my vestibular problems are very, very powerful. but only heart trouble has finally defeated my efforts to take care of myself in this way. In other words, my problems aren't exactly the same as have been described by others, only partly similar. But they aren't slight, and I'm not stronger than your average AN bear. I did not mean to imply that.
thanks,
Joel
(please see this earlier post regarding why this is posted by Steve: http://anausa.org/forum/index.php?topic=8368.msg90490#msg90490)
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Hi Joel.......I think you are a super man and so eloquently express your concerns.......they are certainly justified. Keep up the good fight. We are all in the same boat here......"QUESTIONS" galore. Ask away......fatigue is my demon of the day..........
My best......Judy