ANA Discussion Forum
Post-Treatment => Balance Issues => Topic started by: TJ on May 01, 2013, 09:48:25 pm
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I would like to ask a question to those that have had radiation. I had CK about 2 1/2 years ago, up until now side effects have been pretty much expected. I would like to know if any of you have had this happen.
About 3-4 weeks ago I started having very bad dizzy spells that last only a few seconds. (It is not vertigo, just dizzy) They are bad enough to make me sit down immediately regardless of where I am. I know side effects can last years but this is a little concerning.
Just trying to decide if I should go to my doctor for another MRI. Would appreciate any input.
TJ
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Hey TJ,
Repeated dizziness certainly seems like something to discuss with your ENT or general physician.
Best,
Petrone
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TJ, I would certainly discuss this with your doctor. But that said, know that dizziness can occur even years after treatment. I had dizzy episodes fully 3-1/2 years after receiving CK, after a couple years of relative calm. The dizziness may not necessarily be due to your tumor (but an MRI might be advised in order to rule this out; again ask your doctor for advice). Your damaged vestibular nerve is now your Achilles heel. When your general health is not at its very best, the weakest parts of your body (including your balance nerve) are going to be the first to act up. It might have nothing to do with your tumor acting up (in fact, it's probably just dead scar tissue at this point). There's probably no need to worry, but do inform your doctor and see what they say.
Best wishes,
TW
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As tumours grow it affects your balance nerve... As tumours shrink it can causes changes to the balance nerve too. The dizziness is probably a sign of change... Chances are good change.
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Hello...I had just logged on looking for info on dizziness as I have the very same symptoms. I had CK Dec. 2010. All was going well. Having MRI's every 6 months under the watchful eye of Dr.Hass..BUT this past week all of a sudden Im back to having my balance so off I hesitated driving yesterday. Today Im a bit better but still a little dizzy. I was relieved to read that it might be the AN shrinking..Lets hope..I am due for another MRI mid summer and then followup visit with Dr. Haas ( from Winthrop Hosp.CyberCenter) Lets hope this is all very uneventful. As usual I get lots of info from this site. Thanks!!
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I'm about 4.5 yrs post CK. For 2 years after I had wonky head and 2 episodes of vertigo likely from swelling. Tumor has now shrunk to less than diagnosis. For about the last 2 years I've been pretty much back to normal except I've had 2-3 dizzy/nausea spells for which I have to take medicine and lie down, and it passes. Just this Tues, had bad vertigo and unrelenting vomiting. Dr. is calling is vestibular neuritis, likely caused by a virus. I'm off work until Weds, much better, but still not well. I'm prone to herpes on my left AN side. I agree with TW, that it's now likely a weakened area and more prone to problems, and just goes with the territory. It stinks, but could always be worse. Every doctor has different guidelines re: MRI's. Check with your doctor if it has you worried. But I can tell you it's not uncommon to have "episodes". Take care.
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Hi All, In my previous writing I stated that I was getting some dizzy spells but this week its so bad that I have to sit down asap. I'm hoping that it is the continuing shrinkage of the AN and not growth. Anyway, Im due for my follow up MRI in a few weeks. Any thoughts? Thanks!JR
Had CK 12/1/10
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Hopefully not to sound like a broken record on this forum, but your dizziness could be due to dietary factors. I have found that eating sugar, caffeine (chocolate) and very oily foods (peanut butter) all increase dizziness. Dehydration and fatigue also make dizziness worse. Drink plenty of water, get lots of sleep and eat lots of green vegetables, and your dizziness will very likely abate, unless of course it's due to tumor regrowth.
Best wishes,
TW
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Thanks to all who have given me advise. I went to see Dr Chang at Stanford about me being so dizzy. He did not seem to concerned but thought vestibular therapy might help. Well I have gone 9 times and my dizzy spells have pretty much gone away.
It is amazing that they can retrain you brain to use the other parts of the balance system that has not been damaged.
Of course Dr Chang still wants to do the MRI in October which is when I have the yearly one done.
Thanks Again
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Hi all,
Over 7 yrs post-CK and every blue moon, I have dizziness spells (not too often but on occasion.....).
I am not a Dr nor do I play one on TV (I am not THAT Dr. Phil) yet...... in my own personal experience, vestibular therapy and LOW dose valium (2mg) taken for no more than 1 to 2 wks tends to calm the nerve down. Much like Tumbleweed's and other suggestions, low dose valium use for dizziness issues (as well as Meclazine/dramamine) has also been discussed.
Follow up with your neuo-onc from the CK center (or your local neurologist) should be able to guide you during this issue. Please keep your CK team updated. They will want to know.
I hope this helps.
Phyl
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Hi TJ;
I'm happy for you the VRT helped.
Re, vestibular decompensation; It can have a myriad of causes. Any change to the body, diet, activities, or environement actually.
I doubt, unless MRI would prove AN growth, an exact cause would be easily determined.
One thing one might remember; Though the AN is not changing, ( increasing/decreasing ) in volume, it continues to affect the nerves. Esp. the one it arises from. E.G. One can go quickly deaf with the AN not growing.
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Hi Russ,
Just for my own curiosity, nothing more.... have you studied medicine? your posts shows a lot of depth and am curious if you have studied? I know we have many nurses and such on these forums.
Thanks! :)
Phyl
Hi TJ;
I'm happy for you the VRT helped.
Re, vestibular decompensation; It can have a myriad of causes. Any change to the body, diet, activities, or environement actually.
I doubt, unless MRI would prove AN growth, an exact cause would be easily determined.
One thing one might remember; Though the AN is not changing, ( increasing/decreasing ) in volume, it continues to affect the nerves. Esp. the one it arises from. E.G. One can go quickly deaf with the AN not growing.
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Hi;
PM'd you, Phyl. Have a nice eve/Tuesday!
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Hi;
I have read the vestibular system may be sympathetic in some cases. In other words, the good side lessens in sensitivity to accommodate and equalize a lost side. This might be considered the body's attempt at homeostasis.
Re, "vestibular clamp", I don't recall how long this phenomena lasts. You may be able to Google that using "scholar".
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I just want to thank everyone and say hello to those of you I recognize...Pearl, Tumbleweed and anomar. Good to see you. I've been fairly well, I haven't had a bad nystagmus attack in about two year. The kind that left me vomiting and in bed for hours. Now I get a very slight version of nystagmus and wonky hard every 5 weeks or so, but low dose Valium takes cure of it quickly.
It's been almost 5 years since CK...hard to believe. Well, for the past 6 weeks I've had the minor nystagmus and wonky head every day and stopped taking the meds after 4 weeks to see how I would do. I'm not bed ridden but its annoying all day. Maybe it's the change in weather patterns in the Midwest...hot, then cold, then rainy and 70' then sunny and 82, Or maybe it's just my body still having the tumor press. My last MRI showed it was slightly smaller...ver slight. That was in Feb 2012' so I'm due or another.
Anyway, I am considering VT for the first time. Anyway, I just wanted to stop by and say hi and thanks for the helpful thread. Sorry for any typos, I'm on the iPad mini and that seems to happen using these vs a PC. Tisha
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Tisha, I am SO thrilled to see you! I'm sorry to hear of this recent issue and hope it resolves REAL soon. 5 years.... wow.... I'm now just over 7.... what a journey we have had!
Please keep us posted on this as I do not know many that have had issues this long after treatment. I'd like to follow this as it may help others as well.
Hang in there and once again, great to "see" you!
Phyl
I just want to thank everyone and say hello to those of you I recognize...Pearl, Tumbleweed and anomar. Good to see you. I've been fairly well, I haven't had a bad nystagmus attack in about two year. The kind that left me vomiting and in bed for hours. Now I get a very slight version of nystagmus and wonky hard every 5 weeks or so, but low dose Valium takes cure of it quickly.
It's been almost 5 years since CK...hard to believe. Well, for the past 6 weeks I've had the minor nystagmus and wonky head every day and stopped taking the meds after 4 weeks to see how I would do. I'm not bed ridden but its annoying all day. Maybe it's the change in weather patterns in the Midwest...hot, then cold, then rainy and 70' then sunny and 82, Or maybe it's just my body still having the tumor press. My last MRI showed it was slightly smaller...ver slight. That was in Feb 2012' so I'm due or another.
Anyway, I am considering VT for the first time. Anyway, I just wanted to stop by and say hi and thanks for the helpful thread. Sorry for any typos, I'm on the iPad mini and that seems to happen using these vs a PC. Tisha
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Hi Phyl! Today is a better day. I decided not to drink coffee and see what happens. I only drink one cup of half caffeine and half decaf, but maybe that's a trigger. I hate that as I love that one cup in the morning. The thing is many times I wake up with it before I even have it, so who knows? Have a great weekend.
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Hi, everyone:
It's been a little over 5 years since I received CK for my AN. Yet, I have had two extended bouts of vertigo and greatly increased disequilibrium (wonky head) in the past two months. It's been alarming that they occurred this far along after treatment, especially since I felt my balance had recovered around 90% since treatment prior to these episodes.
The first bout occurred after taking prescribed hydrocodone and flexeril for an acute leg injury, which had me bedridden for around ten days. I consulted with Dr. Chang, and he said it was probably the drugs and inactivity that caused the vertigo and imbalance issues (which lasted about a week, with the vertigo occurring on and off). After all, both drugs can cause dizziness, and neurological and brain disease are contraindications for taking them (the doctor prescribed them anyway, in spite of the fact that she knew I had two brain tumors). Anyway, my balance returned to baseline after about a week, I resumed my active lifestyle, and I thought I was done with vertigo.
But for the past 10 days, once again I've had pronounced disequilibrium and brief (lasting five to ten minutes), intermittent bouts of vertigo. Dr. Chang ordered an MRI, about a month ahead of my normally scheduled followup. To my relief, the results showed both of my tumors (AN and HN) are stable in size. When I asked Dr. Chang (through his assistant RN) what could be causing my current balance problems, he relayed that "your vestibular nerve will never be the same," meaning a damaged vestibular nerve has the potential to act up even years after treatment and without recurrence of tumor growth. This was a great relief to me (knowing the tumor hasn't grown), and I am entirely confident I can work my way back to very good balance.
So, what could have caused my most recent episodes of imbalance and vertigo? A few things come to mind. First of all, I have been working horribly long hours. I know from past experience that stress and lack of sleep and rest can easily cause balance issues with a damaged vestibular nerve; although I never had such pronounced symptoms from overwork in the past several years, I pushed it especially hard over the past two weeks. Second, my diet has changed a lot in the past two months. I usually eat large amounts of steamed, dark, leafy greens (collards, kale, chard) on an almost daily basis, along with baked salmon around three times a week, and I've long observed that doing so keeps my sense of balance in a very good state. But for the last couple months, my vegetable garden has been producing a bonanza of cucumbers, tomatoes and squash, so I've been eating those vegies instead of the dark leafy greens which had been a staple for the past several years since even before treatment. And I cut my salmon intake to only about once a week. On top of that, I went on a bit of a (sugar-free) dark chocolate binge for a few days leading up to the latest bout of disequilibrium and vertigo, and chocolate has high amounts of caffeine (a known trigger for imbalance in compromised individuals).
Sooooo... I'm going to take my own advice and 1. work less, 2. get more sleep, 3. exercise outdoors more, and 4. eat a diet rich in steamed, dark leafy greens and salmon. Additionally, Dr. Chang has ordered vestibular therapy, which I'll try for the first time (in the past, I've always felt that hiking was effective defacto vestibular therapy). Other factors that have kept my vestibular system in relatively good health in the past include good hydration, strict avoidance of refined sugar and moderation with eating oily foods such as peanut butter.
I hope relaying my experience helps all those who still struggle with imbalance issues. First and foremost, rest assured that these symptoms do not always (in fact, usually don't) indicate tumor regrowth, even when they occur over five years after radiation treatment.
Best wishes to all,
TW
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Thanks Tumbleweed. I always have enjoyed reading your posts and helpful tips. I'm sorry you have been experiencing some dizziness, also. I'm going to give up the caffeine as much as possible. Coffee ans chocolate....two of my faves, so totally unfair. I will also stp up the dark greens. I love spinach lettuce.
Reading what Dr Chang says is very comforting. So, thanks for relaying that message. Wishing you well....
Tisha