ANA Discussion Forum
Post-Treatment => Balance Issues => Topic started by: Alison on April 19, 2013, 03:39:05 am
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I'm Post SRS 4 months, my imbalance/dizzyness got noticeably worse six weeks ago and for the past two weeks I haven't left the house as my head spins with every step when I walk (like I'm very drunk). Last time I walked zig zagging, 5 mins up the road , I had to clutch at walls every few steps.
My imbalance has been constant since it arrived June 2012, ie it has never fluctuated so that I've had a day without it, but I'd learnt to live with it. (I expected worsening after treatment but not this much).
I only get relief when my head is still, ie sitting or in bed. (Tinnitus is constant but I can cope with that). I'd like to ask if anyone has this constant imbalance with no "good days" . I've posted before in the radiosurgery section but am still confused about whether my imbalance and spinning head are comparable to other patients post treatment symptoms in the respect they are always present.
I've rung the Oncology doc who treated me, who only passed on a message via a minion to say just swelling, and that it would "never be hydrocephalus", which I'd asked about. Other patients and research state hydro is rare but can happen after SRS (5%).
As the doc has not rung me herself as I requested, my GP has referred me for an MRI apt to see what is going on. I would not like to take take steroids without evidence of actual swelling, not that they have been offered. Also has anyone had tests for hydrocephalus because of extreme imbalance. (Crazycat posted he had this but also visual problems before treatment/surgery). And is the protein in CSF a problem only after AN treatment?
Sorry it's a long post! Many thanks for any advice.
Alison, UK
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Well, update is I have an MRI booked for Weds (via my GP, not heard back from the Oncolgy doc, although this is the UK) so hopefully will get some answers in the MRI report. I've noticed ear pressure increases(like cabin pressure on take off) when I get the head spins, if that means anything?
Alison
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Alison -
So sorry you're dealing with the wonky head so much! I had actual scalpel surgery to remove the AN so my experience is far different from yours. One thing I recall when doing all the research was that what you are experiencing is mentioned a LOT in the kind of surgery you've had. They DID do a CAT scan on me though prior to surgery to check for swelling, but it came back fine. I'm thinking that your little bugger AN is swelling and pressing on your vestibular nerve on and off..... I lived on Dramamine non-drowsy for the months prior to my surgery, but haven't needed it since surgery.
Hang in there - and keep your body as healthy as possible I say - to help it heal from the insult of the surgery....
Pam
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Alison,
I have a 1.7 CM acoustic and did not have any imbalance issues until shortly after my CyberKnife treatments this past January. Now, at the three month point, I am going through major dizziness/imbalance when walking or getting up out of a chair/bed. I m grateful that my recent MRI showed no growth, but the vestibular related symptoms are not fun. I also have facial pain that has worsened since the treatments. I am going to try steroids if there is no improvement in the next two weeks. I would love to go back to the slight lightheadedness that I had been complaining about!
Hang in there. At least you know that you are not alone.
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Hi, thanks for the replies.
Moeson, your experience seems to be matching mine, (except I did have imbalance etc before SRS, but as you say, it'd be nice to go back to the lesser symptoms!). I had an MRI the other week and the report said some minimal increase in size, but didn't state the actual size now to compare before treatment, unfortunately.
So all I can assume is there is swelling to some degree causing the worsening symptoms. But the worry is, if it swells more, how much worse can it get!
I want to avoid steroids if possible, esp after reading posts about them on here. How are you today? Have you managed to avoid them so far? Hope you are feeling well today.
Alison
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Hi Alison,
I appreciate you asking. I am feeling about the same, although one night last week I was awoken by excruciating facial pain that took almost an hour to subside. I have decided to hold off on the steroids for now. Since I have Crohn's disease, I am all too familiar with the side effects of pednisone. Also, before my AN was correctly diagnosed one ENT put me on a 80MG dose of prednisone for the longest 10 days of my life. Unfortunately, he believed we were dealing with a virus. As a result of that ridiculous dosage, I had insomnia that could not be overcome by even Lunesta!
I am going to hope that time heals both of us!
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Alison,
I am happy to say that during this past week, my balance/lightheadedness seems to have largely disappeared. I have been able to resume powerwalking without bouncing off walls or drifting. Other than occassional searing pain from the top of my head, I feel as well as I did last year at this time, when I first adjusted to living with tinnitus pre CK. I hope you find similar improvement in the near future.
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Hi moeson,
glad you have improved! Unfortunately my imbalance is just as bad. I'm hoping it may get better in the coming months. I'm 5 months post SRS and some people see improvement at 8 months, fingers crossed.
best wishes, Alison.
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Hi Alison;
If the dizziness is chronic and unchanging still, I would imagine you either have some residual tumor swelling from SRS, or vestibular nerve branch damage.
Funny how those who have had Translab and lose the nerve seem to fair better as the good ear compensates
No change in a few months and it seems VRT or low dose Valium may be helpful?
In the USA, I've never heard of a Dr Rxing steroid for vestibular issues, but only for SHL. Steroid is hard on internal organs. I was told "no more than one run per year." That's a rapid taper up, 3 days running at highest dose, and a rapid taper down.
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Thanks for the info nftwoed,
Alison
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Hello Alison,
I had similar issues post proton beam. My imbalance wasn't quite as bad as yours. I was always wonky but the bad vertigo and imbalance came and went. That went on for almost 4 years.
This might sound silly considering how you feel but my experience was that the only thing that started getting me back closer to normal was to push harder than I ever thought possible. No doctor or pill can do that for you. My savior was standup paddleboarding, I think it is uniquely suited to vestibular therapy (flat horizon for visual reference and extreme balance challenge) but it's evident that even pushing yourself in PT alone provides benefit. If nothing else get yourself a bosu ball and put a strip of tape on a wall then gradually up the exercise on the bosu. Work on it everyday.
I assume you may have seen this post but just in case.... http://www.anausa.org/smf/index.php?topic=8379.0 to say it changed my life is a massive understatement.
Best of luck,
Bob
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I had my gamma knife in March 2012 w/few problems immediately thereafter. Two MRI's have shown the originally 1.8 cm AN to be just slightly smaller. Doc is pleased w/these results. Since Dec 2012 I've had intermittent dizziness. For the last two weeks, its been constant & shows no signs of abating. The room spins every time I move my head! Doc gave me a steroid dose pack but there's been no improvement and I really don't want to finish it. I have 60% loss of hearing in my left ear and tinnitus and these I can live with. This dizziness has got me stumped! I never had balance issues before the gamma knife. Has anyone had good success with vestibular therapy? Is there anything else out there?
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Has anyone had good success with vestibular therapy? Is there anything else out there?
Yes.
I had 6 sessions.
I learned a variety of exercises that challenge my balance.
I can do them at home or anywhere else, a little at a time, or a lot at a time. Doesn't have to be on any schedule although it's better if it was.
When I'm waiting for water to heat up for coffee I balance on one foot for as long as I can.
When I'm walking through the house or through the yard, or anywhere else, I look from side to side or I walk heel to toe.
I keep my balance pad on the floor of my living room so I pass it by every day. Sometimes I stand on it with my feet together and close my eyes to see how long I can keep steady.
This is stuff I'll probably be doing off and on for years to come.
But it's important to learn the techniques and you can do that with a minimal amount of sessions. They'll give you printouts that you can take home and work with.
Is there anything else out there?
Tai Chi.
You can get some beginners DVDs on Amazon.com
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Alison, it's not unusual that you have increased imbalance symptoms after radiation, and onset at the four-month mark is quite typical. This will get better over time. As for vestibular therapy, that's likely to help. But you can do your own vestibular therapy: walk on uneven ground, spin in a chair that can rotate, etc. Basically, the more you challenge your balance, the quicker your brain will adapt and learn increasingly to ignore your vestibular system and rely on your vision and proprioceptors for balance cues.
You can also help reduce imbalance symptoms by avoiding foods and beverages that increase inflammation: sugar, caffeine, alcohol, etc. Eat foods rich in omega-3's , such as salmon, trout and sardines. Omega-3's help reduce inflammation. And stay well hydrated and get lots of sleep (nothing is more important than that, as it increases blood flow to your brain and allows your body to heal).
All of these strategies helped me immensely. I hope they help you, too!
Best wishes,
TW
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I'm 2.5 years post CK. Had all the symptoms after CK..wonkiness, increased tinnitus,pain in head, numbness, tingling on right side of face which in time lessened..now for the past month or so alot of these symptoms are creeping up again. I had an MRI in January which showed increased shrinkage as well as necrosis..but now the tinnitus is pretty much pounding all the time and my balance is a bit off..could it mean increase in size or decrease.I have an appt with the ENT next week hoping that I have an ear infection rather than a problem with the AN. Thoughts anyone? Thanks, Joan
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I am about 6 weeks post SRS treatment for my right AN and the vestibular symptoms are beginning to get worse and the tinnitus is louder than ever. Was hoping this was the worst of it, but it seems to get a little worse every day.
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Hello;
You may be entering a period of a little tumor swelling. I would imagine the ear is pretty 'ticked off' by this invasion of radiation! And invasion it was! Our body needs time to recuperate.
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Hi, Alison checking in again.
Symptoms have not got any better, in fact I reached the 6 month post SRS date this week. Two days ago I noticed a greater feeling of pressure and fullness in my AN side of head/ear and louder tinnitus accompanying deterioration in hearing. This all seems to exasperated the imbalance, which I thought couldn't get much worse!
So I hoped in vain for a 6 month breakthrough and am now getting a bit despondent I'll get one before 12 months. Onwards and upwards!
How is everyone else doing? Hope you're all OK.
Alison x
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Hi Alison;
I'm so very sorry ... But, I do hold some optimisn yet at your being just 6 mos. out.
In many ( not all, unless NF-2 ), gradual hearing loss following SRS is not unexpected. I believe, in general, the greater the loss going in, the greater the loss following SRS. That would account for the increased tinnitus.
Re, sensing aural fullness, seems you are still within the time frame for tumor swelling but the sensation of aural fulness accompanies many ear conditions ( to include tumor edema ). I'm unsure the sensation is always unstood ( of unknown etiology ).
Do you have to wait another 6 mo. for an MRI?
It's so hard to maintain optimism with the passing of days, isn't it?
But; From what little I know, you're still within a swelling, hearing loss, a stopped tumor growth stage.
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Hi, thanks for the reply nftwoed.
Yes, I have to wait 6 months for the next MRI. Tinnitus has increased again this week, now sounds like the roar of a gushing weir after heavy rain! I know that sound well, as we have one in my city. But now I have my own personal 24hour one!
Onwards and upwards. Hope you're all well.
Alison x
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Hang in there, Alison. 6 months is still early in the game.
Your severe symptoms may be a sign that your tumor is dying an especially fast and early death, creating a lot of inflammation in the process. I had a very rocky recovery after CK, but it was followed by dramatic necrosis and shrinkage (after initial swelling).
You should be feeling better in another 6 to 8 months, if not much sooner.
Best wishes,
TW
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Alison,
So sorry you continue to have the increase in symptoms. You are certainly not alone in this experience. My tinnitus and balance issues also continue to worsen (plus worsening, now daily headaches) since my SRS in late April and I recently had to take a medical leave from my job as a result. I will continue to follow your progress and hopefully we both start feeling better soon!
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Thanks Tumbleweed for the encouragement. It can get very dispiriting when things just seem to get steadily worse, rather than any better.
And Nannybee thanks also. I hope you start to see some improvement soon. In the words of the late, great Curtis Mayfield, I suppose we just have to keep on keeping on!
Alison x