Treatment Options > Radiation / Radiosurgery

Dizziness and Balance issues still ongoing after 1 yr out of Gamma Knife

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Freelander:
Gearbox123,
My tumor is currently about the size of yours when you had treatment.  For now, I am still watch and wait.   While I have had a handful of days over the past three years when vertigo was a day long issue, for the most part my balance has been good, not excellent, but good.  My main tumor annoyances are daily ear fullness, partial hearing loss, and tinnitus.   Balance issues are perhaps the ones that I want to avoid most, as I thoroughly enjoy long distance bike riding. Mobility is essential for my well being, as it is for everyone, living with AN pre and post treatment is a challenge.  Your plight is disheartening and I sincerely hope that the positive outcomes that may come after several years of steady improvement post treament are in your future.  AN and intervention of any type is a challenging situation.  Having stated that you had significant balance issues prior to treatment, perhaps it is not surprising that similar issues are ongoing, at least not for now?   I would redouble any efforts in vestibular/balance therapy for as long as it takes to reach a personal acceptable level of tolerance, and maintain those efforts as part of my lifestyle. 
Best of outcomes in the long term, and keep us posted on your progress.

extropy:

--- Quote from: notaclone13 on April 25, 2018, 10:45:04 pm ---I posted this abstract on a different tread, but will repost here:
Temporal Dynamics of Pseudoprogression After Gamma Knife Radiosurgery for Vestibular Schwannomas-A Retrospective Volumetric Study.

--- End quote ---

See also this one

Gamma Knife radiosurgery for vestibular schwannoma: clinical results at long-term follow-up in a series of 379 patients

Nicola Boari, Michele Bailo, Filippo Gagliardi, Alberto Franzin, Marco Gemma, Antonella del Vecchio, Angelo Bolognesi, Piero Picozzi, Pietro Mortini
Journal of Neurosurgery 2014, 121 Suppl: 123-42

OBJECT: Since the 1990 s, Gamma Knife radiosurgery (GKRS) has become the first-line treatment option for small- to medium-size vestibular schwannomas (VSs), especially in patients without mass effect-related symptoms and with functional hearing. The aim of this study was to assess the safety and efficacy of GKRS, in terms of tumor control, hearing preservation, and complications, in a series of 379 consecutive patients treated for VS.

METHODS: Of 523 patients treated at the authors' institution for VS between 2001 and 2010, the authors included 379 who underwent GKRS as the primary treatment. These patients were not affected by Type 2 neurofibromatosis and had clinical follow-up of at least 36 months. Clinical follow-up (mean and median 75.7 and 69.5 months, respectively) was performed for all patients, whereas audiometric and quantitative radiological follow-up examinations were obtained for only 153 and 219 patients, respectively. The patients' ages ranged from 23 to 85 years (mean 59 years). The mean tumor volume was 1.94 ± 2.2 cm(3) (median 1.2 cm(3), range 0.013-14.3 cm(3)), and the median margin dose was 13 Gy (range 11-15 Gy). Parameters considered as determinants of the clinical outcome were long-term tumor control, hearing preservation, and complications. A statistical analysis was performed to correlate clinical outcomes with the radiological features of the tumor, dose-planning parameters, and patient characteristics.

RESULTS: Control of the tumor with GKRS was achieved in 97.1% of the patients. In 82.7% of the patients, the tumor volume had decreased at the last follow-up, with a mean relative reduction of 34.1%. The rate of complications was very low, with most consisting of a transient worsening of preexisting symptoms. Patients who had vertigo, balance disorders, or facial or trigeminal impairment usually experienced a complete or at least significant symptom relief after treatment. However, no significant improvement was observed in patients previously reporting tinnitus. The overall rate of preservation of functional hearing at the long-term follow-up was 49%; in patients with hearing classified as Gardner-Robertson (GR) Class I, this value was 71% and reached 93% among cases of GR Class I hearing in patients younger than 55 years.

CONCLUSIONS: Gamma Knife radiosurgery is a safe and effective treatment for VS, achieving tumor control in 97.1% of cases and resulting in a very low morbidity rate. Younger GR Class I patients had a significantly higher probability of retaining functional hearing even at the 10-year follow-up; for this reason, the time between symptom onset, diagnosis, and treatment should be shortened to achieve better outcomes in functional hearing preservation.

bonsil18:
I had GK with Dr. Kondiolska at NYU in November of 2017 for my AN.  In May 2018, it was determined that the tumor had swelled, I was just starting to experience dizziness at that time.  Now, 5 months later, I have started to experience almost constant dizziness and vertigo.  My balance doesn't seem off, I am walking straight.  But the world is spinning.  I had another MRI just this past week which showed the swelling remains, but the tumor is "dying"....very black on the inside, indicating that the GK is working. Dr. said swelling could last for months to years.   The problem is how to control the vertigo.   I have tried anti-vert, doesn't do much, was on steroids for a short time, that helped, but once stopping the steroids, symptoms return.  I also suffer with migraines, and find that the migraine meds (immitrix) sometimes will control the vertigo.

Any suggestions to control the vertigo would be greatly appreciated?   Thank you

notaclone13:
Have you tried Dramamine? It will make you drowsy so you might want to start with the children’s dose of 25 mgs rather than 50. Also, benzodiazepines which are known to be vestibular suppressants such as Valium or clonazepam (which has a longer half life) are used to treat vertigo. I have found a low dose of clonazepam (0.25 mg taken once in the morning and again in the late afternoon) to be very helpful. They don’t like to prescribe benzodiazepines because people become dependent on them and you cannot stop taking them abruptly, you must taper off them slowly.  But, if you need a drug to function, you need it. As my doctor told me, if you needed insulin to function, would you hesitate to take it? I came across a clinical trial that showed clonazepam decreased tinnitus as well. I posted about that elsewhere on the forum. The 0.5 mgs of clonazepam used for the clinical trial is a very low dose. Also, a friend on the forum mentioned the muscle relaxer Orphenadrine, which is available in extended release form, was very helpful to him for vertigo. Just a few suggestions, hopefully one of them will prove helpful. I have had many extended vertigo attacks through the years and they are awful so I know what you are going through and sympathize.

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