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Joined: 8/5/2009
Posts: 10
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I'm new to the Forum...diagnosed with 4mm AN in March. Small but causing lots of symptoms. I was diagnosed following a severe bout of vertigo, but have since had issues with oscillopscia/nystagmus/probs with gaze stability. Is this normal for AN's?
I also did not initially have tinnitus, but now I do. It sometimes diminishes, but is very loud much of the time. Is this here to stay? What is the likely impact of CK treatment on these symptoms?
Thanks,
Amy
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Joined: 10/10/2008
Posts: 2354
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The positional problems are not common, but they are also not unknown. They have to do with the vestibulo-ocular reflex. You can probably google that and find descriptions. At any rate, they will hopefully improve with treatment.
Tinnitus, on the other hand, usually does not get much better with treatment. However, people usually are less bothered by it over time. My own theory is that they just learn to tune it out. In fact, there is a treatment that teaches you to do just that, although I am not sure how well it works.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 141
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Amy, I stand corrected (regarding vestibulo-ocular reflex) and owe you dinner at the $3 Cafe next trip there. My bad. Phyl
=============================================== 1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of April 2006
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Joined: 10/10/2008
Posts: 2354
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I won't ask
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 8/5/2009
Posts: 10
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Do these (vestibular) symptoms usually improve with CK treatment?
Amy
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Joined: 10/10/2008
Posts: 2354
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Sometimes, but not always. THe same is true for surgery.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 8/5/2009
Posts: 10
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Can you please elaborate?
Amy
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Joined: 8/5/2009
Posts: 10
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In other words...if the tumor is stable/necrotic (hopeful outcome of radiation) or the vestibular nerve is cut on the "bad" side (hopeful outcome of surgery), doesn't the brain then compensate (over time at least)?
Amy
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Joined: 10/10/2008
Posts: 2354
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I have not seen the ocular problems you describe. They are very uncommon with AN. So I don't have any personal experience with the results of radiosurgery. We DO see balance problems fairly commonly, and they often get better with radiosurgery but not always. I assume the same is true for the ocular symptoms. Many patients get quicker relief from balance problems with surgery, but not all. I assume the same is true for ocular symptoms like these. In order to achieve that result, the surgeon cuts the nerve. Not an optimal result.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 8/5/2009
Posts: 10
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Phyl;
I'll take you up on that (even though I'm a vegetarian and won't be sharing your chicken wings!).
Cheers,
Amy
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Joined: 10/10/2008
Posts: 141
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noted  next trip there to visit mom... veggie wings on me Thanks Dr M for clarifying as I was not 100% sure on this... I have not heard of these types of ocular issues for such a small, untreated AN and couldn't answer Amy's question properly, so guided her here to ask you all instead. I was not 100% correct on something, thus.. I owe Amy dinner (I urged the bet). TGIF all! Phyl
=============================================== 1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of April 2006
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Joined: 10/10/2008
Posts: 2354
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Don't go for the veggie wings. SOund even worse than notdogs
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 8/5/2009
Posts: 10
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Dr. Medbery;
Thanks so much for your response. Is there any data out there on that? I simply cannot fathom dealing with this indefinitely. I want to choose the treatment that gives me the best shot at resolution...long term. My understanding was that the brain almost always compensates (eventually). I don't have any "balance" issues now per se (i.e., disequilibrium, unsteadiness, etc), and my fear is that cutting the nerve may bring those on. I am very active so I think that might be worse than what I currently have.
It's quite a mess figuring out what to do.
Thanks again,
Amy
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Joined: 8/5/2009
Posts: 10
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Think I'll stick with the tofurkey and soysage
Amy
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Joined: 10/10/2008
Posts: 141
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um, go for it... I'll pass.... soysage and tofurkey... um.... no thanks! :) Amy, we're in the wings (sorry for the pun) and sorry I couldn't answer what you were seeking to find out, but... I know you'll make the best decision you can for you and your situation. Phyl
=============================================== 1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of April 2006
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Joined: 10/10/2008
Posts: 141
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whoa! Backup and rewind! Per Dr. Medbery's post; "I have not seen the ocular problems you describe. They are very uncommon with AN. So I don't have any personal experience with the results of radiosurgery. " Amy, same as what I noted? You buying the wings? Phyl
=============================================== 1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of April 2006
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Joined: 8/5/2009
Posts: 10
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Since it seems that I've REALLY won the medical lottery, I should be able to afford it!
Amy
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Joined: 10/10/2008
Posts: 141
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Amy, I'm the one that hit the medical trifecta.... we'll go dutch treat! :) Hang in there... I know all of this research can be maddening...... hang tough! :) Phyl
=============================================== 1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of April 2006
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Joined: 10/10/2008
Posts: 2354
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I can only find two papers dealing with this after surgery:
Otol Neurotol. 2007 Sep;28(6):814-21. Links
Balance impairment after acoustic neuroma surgery.
Tufarelli D, Meli A, Labini FS, Badaracco C, De Angelis E, Alesii A, Falcioni M, Sanna M.
ENT Rehabilitation Unit, San Raffaele Pisana Scientific Institute Tosinvest Sanita, Italy. davide.tufarelli@sanraffaele.it
OBJECTIVE: The aim of this study was to assess the incidence of balance problems after acoustic neuroma surgery, evaluating whether disequilibrium is disabling. STUDY DESIGN: Retrospective observational study. SETTING: Rehabilitation center. PATIENTS: A group of 386 patients who underwent acoustic neuroma surgery. INTERVENTIONS: Patients were selected from a population of 459 subjects who had undergone surgery for acoustic neuroma. MEAN OUTCOME MEASURES: The Dizziness Handicap Inventory, The Activities-specific Balance Confidence Scale (ABC), and a specific questionnaire on oscillopsia. RESULTS: The specific questionnaire emphasized that 39 patients (10.10%) perceived disequilibrium as disabling, and the oscillopsia handicap score result was moderate in 73.32% of the sample, mild in 21.50%, and severe in 5.18% of patients. The Dizziness Handicap Inventory and ABC scales revealed the presence of handicap and disability due to disequilibrium and the influence of some variables such as sex and a higher oscillopsia handicap score. Dizziness Handicap Inventory and ABC scores were higher in symptomatic patients. CONCLUSION: Disequilibrium influences handicap and disability after acoustic neuroma surgery. This symptom is also present after several years since surgery, and some patients perceived disequilibrium as disabling.
Acta Otolaryngol Suppl. 1991;487:106-13.Links
Spatial gaze stability under active high-frequency head oscillation after acoustic neuroma surgery.
Saito A, Takahashi M, Okada Y, Takei Y, Takeuchi I, Kanzaki J.
Department of Otolaryngology, Keio University School of Medicine, Tokyo, Japan.
Spatial gaze stability under active high-frequency head oscillations was investigated in 31 patients after acoustic neuroma surgery. Whereas gaze stability upon rotation to the intact side was excellent during the entire time course after surgery, rotation to the affected side produced marked gaze disturbance at frequencies higher than 1.0 Hz, and did not recover even several years after surgery. The maximal oscillation frequency decreased in the patient group. Oscillopsia, being found in 20% of the patients, showed little correlation with gain value or maximal oscillation frequency. Long-lasting disturbances of active head oscillation, gaze stability and perception after unilateral labyrinthine loss may indicate persistent asymmetry of spatial orientation during high-frequency head movements
I can't find any regarding radiosurgery
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 8/5/2009
Posts: 10
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Thank you Dr. M...how kind! I really appreciate the information. Doesn't sound too promising though. I don't quite understand the mechanism of action - why I have these particular symptoms as opposed to other more common ones. I have a small, non-growing tumor so I'm not sure if treatment will have any impact. Guess I could focus on hearing preservation (currently have only high frequency loss) and prevention of future growth, but what really bothers me are the vestibular symptoms.
Anyway, thanks again.
Amy
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