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

[Gearbox123]

Hi Everyone, it been a while since I had posted anything. I am just under a year out since my Gamma Knife @NYU with Dr Kondziolka. My tumor was very small 7mm x6mm x5mm. My last scan Dec 2017 ago showed more growth 1cm x 7mm x 6mm. Dr said most likely swelling increased the tumor which was common, but tumor had only small black dots inside that looked like penicil marks not really the black circle that everyone mention or that black halo that I had heard about ? Dr also said that tumor moved a few mm, not sure how common that was? He seemed a bit surpise and I think that’s why I am getting another MRI   early May instead of the next year mark. I have had very bad balance issues always and then more dizziness issues along with a good amount of hearing loss after the Gamma Knife .I went to Rusk Institute for balance therapy which was somewhat helpful but not the cure all . I have had some very good days with less dizziness , less headaches , less ear pain , less ear fullness, but then will have some very bad days of dizziness and more tinnitus then I ever have had before that can be maddening. I have nothing but good things to say about the Dr and NYU team but he did mention that if I was looking for a cure for the balance problems that there was a good chance that was not going to happen. My E.N.T told me that data had improved with Radiation and the smaller tumors so I took my chance. I feel like between a rock and hard place because at the time W&W and Radiation were my only options and wanted to be proactive. I am looking for any feed back or similiar experiences. I always have had some very positive responses to my posts. Thanks for any feed back in advance and sorry for the long post. All the best!

[Echo]

Hang in there it does get better!!!

I had GK in Sept. 2013 for a 2.4cm tumor.  By Dec. my balance started to go really off and it pretty much stayed off for next 1 1/2 years.  I couldn't walk a straight line, especially at night.  Some days were worse than others. I did vestibular therapy which helped a bit, but honestly it didn't do nearly what I had hoped it would.  After the 1 1/2 year point, I started having more good than bad days.  By my 4th year post GK, I had the best year ever - almost all of my post treatment symptoms are gone.  I still wobble the odd time, but my balance has improved immensely and I can walk my dog a night comfortably. 

I was told swelling could be expected up to 24 months post treatment and it could take that long or longer before necrosis could be seen.  If you are still less than a year out from treatment, my advice is to hang in there and keep positive.  You really are in the early stages of recovery.  Document the things that happen to you and do follow up with your medical team.  GK is not a quick fix, and we all respond differently.   Try and be patient with yourself, you've been through a lot and your body needs time to adjust and recover.

Cathie

[Gearbox123]

Thanks for the positive words, I will continue to keep a optimistic outcome, I know I came to the right place , God bless and be well.

[notaclone13]

Hi Gearbox,
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.

Breshears JD1, Chang J2, Molinaro AM1,3, Sneed PK4, McDermott MW1, Tward A2, Theodosopoulos PV1.
Author information
Abstract
BACKGROUND:
The optimal observation interval after the radiosurgical treatment of a sporadic vestibular schwannoma, prior to salvage intervention, is unknown.
OBJECTIVE:
To determine an optimal postradiosurgical treatment interval for differentiating between pseudoprogression and true tumor growth by analyzing serial volumetric data.
METHODS:
This single-institution retrospective study included all sporadic vestibular schwannomas treated with Gamma Knife radiosurgery (Eketa AB, Stockholm, Sweden; 12-13 Gy) from 2002 to 2014. Volumetric analysis was performed on all available pre- and posttreatment magnetic resonance imaging scans. Tumors were classified as "stable/decreasing," "transient enlargement", or "persistent growth" after treatment, based on incrementally increasing follow-up durations.
RESULTS:
A total of 118 patients included in the study had a median treatment tumor volume of 0.74 cm3 (interquartile range [IQR] = 0.34-1.77 cm3) and a median follow-up of 4.1 yr (IQR = 2.6-6.0 yr). Transient tumor enlargement was observed in 44% of patients, beginning at a median of 1 yr (IQR = 0.6-1.4 yr) posttreatment, with 90% reaching peak volume within 3.5 yr, posttreatment. Volumetric enlargement resolved at a median of 2.4 yr (IQR 1.9-3.6 yr), with 90% of cases resolved at 6.9 yr. Increasing follow-up revealed that many of the tumors initially enlarging 1 to 3 yr after stereotactic radiosurgery ultimately begin to shrink on longer follow-up (45% by 4 yr, 77% by 6 yr).
CONCLUSION:
Tumor enlargement within ∼3.5 yr of treatment should not be used as a sole criterion for salvage treatment. Patient symptoms and tumor size must be considered, and giving tumors a chance to regress before opting for salvage treatment may be worthwhile.

These authors found that many tumors enlarge from 1 to 3.5 years post GammaKnife, and then they start shrinking. So you are still in the timeframe where the tumor is still swelling  and this might be the cause of your increased dizziness. It’s a miserable feeling, and I am so sorry you have this problem. But, hopefully it will start to shrink soon and you will get some relief.

[Gearbox123]

Thanks for the post and the very interesting info. All the best!

[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]

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.

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.