Sorry you have to deal with an acoustic neuroma. Hope you handle your catastrophic tinnitus somehow. We feel for you! Whatever you decide for your treatment- please know that we wish you the very best!
Just as an FYI- The Fractionated Proton Beam Therapy seems to have been a good choice for my husband. He finished treatment in Aug 2013 and it is now July 2015 and he's doing fine. I believe he said his tinnitus has been reduced since his Proton Therapy Treatment, but if you'd like to talk to him directly to verify this, please just send me a personal message and we could arrange for a telephone call one evening after he returns from work. He could also communicate via e-mail if this would be better for you,. We would be happy to help you in whatever way is best for you. For anecdotal information, please feel free to read any of the posts from me, under the alias "Keep Smiling".
For your reading pleasure, here are some studies on Proton Therapy for vestibular schwannomas:
1.Proton Beam Radiosurgery for Vestibular Schwannoma: Tumor Control and Cranial Nerve Toxicity
http://journals.lww.com/neurosurgery/Abstract/2003/09000/Proton_Beam_Radiosurgery_for_Vestibular.6.aspxAbstract
OBJECTIVE: We sought to determine the tumor control rate and cranial nerve function outcomes in patients with vestibular schwannomas who were treated with proton beam stereotactic radiosurgery.
METHODS: Between November 1992 and August 2000, 88 patients with vestibular schwannomas were treated at the Harvard Cyclotron Laboratory with proton beam stereotactic radiosurgery in which two to four convergent fixed beams of 160-MeV protons were applied. The median transverse diameter was 16 mm (range, 2.5–35 mm), and the median tumor volume was 1.4 cm3 (range, 0.1–15.9 cm3). Surgical resection had been performed previously in 15 patients (17%). Facial nerve function (House-Brackmann Grade 1) and trigeminal nerve function were normal in 79 patients (89.8%). Eight patients (9%) had good or excellent hearing (Gardner-Robertson [GR] Grade 1), and 13 patients (15%) had serviceable hearing (GR Grade 2). A median dose of 12 cobalt Gray equivalents (range, 10–18 cobalt Gray equivalents) was prescribed to the 70 to 108% isodose lines (median, 70%). The median follow-up period was 38.7 months (range, 12–102.6 mo).
RESULTS: The actuarial 2- and 5-year tumor control rates were 95.3% (95% confidence interval [CI], 90.9–99.9%) and 93.6% (95% CI, 88.3–99.3%). Salvage radiosurgery was performed in one patient 32.5 months after treatment, and a craniotomy was required 19.1 months after treatment in another patient with hemorrhage in the vicinity of a stable tumor. Three patients (3.4%) underwent shunting for hydrocephalus, and a subsequent partial resection was performed in one of these patients. The actuarial 5-year cumulative radiological reduction rate was 94.7% (95% CI, 81.2–98.3%). Of the 21 patients (24%) with functional hearing (GR Grade 1 or 2), 7 (33.3%) retained serviceable hearing ability (GR Grade 2). Actuarial 5-year normal facial and trigeminal nerve function preservation rates were 91.1% (95% CI, 85–97.6%) and 89.4% (95% CI, 82–96.7%). Univariate analysis revealed that prescribed dose (P = 0.005), maximum dose (P = 0.006), and the inhomogeneity coefficient (P = 0.03) were associated with a significant risk of long-term facial neuropathy. No other cranial nerve deficits or cancer relapses were observed.
CONCLUSION: Proton beam stereotactic radiosurgery has been shown to be an effective means of tumor control. A high radiological response rate was observed. Excellent facial and trigeminal nerve function preservation rates were achieved. A reduced prescribed dose is associated with a significant decrease in facial neuropathy.
2.Fractionated Proton Beam Radiotherapy for Acoustic Neuroma
http://journals.lww.com/neurosurgery/Abstract/2002/02000/Fractionated_Proton_Beam_Radiotherapy_for_Acoustic.7.aspx OBJECTIVE : This study evaluated proton beam irradiation in patients with acoustic neuroma. The aim was to provide maximal local tumor control while minimizing complications such as cranial nerve injuries.
METHODS : Thirty-one acoustic neuromas in 30 patients were treated with proton beam therapy from March 1991 to June 1999. The mean tumor volume was 4.3 cm3. All patients underwent pretreatment neurological evaluation, contrast enhanced magnetic resonance imaging, and audiometric evaluation. Standard fractionated proton radiotherapy was used at daily doses of 1.8 to 2.0 cobalt Gray equivalent: patients with useful hearing before treatment (Gardner-Robertson Grade I or II) received 54.0 cobalt Gray equivalent in 30 fractions; patients without useful hearing received 60.0 cobalt Gray equivalent in 30 to 33 fractions.
RESULTS : Twenty-nine of 30 patients were assessable for tumor control and cranial nerve injury. Follow-up ranged from 7 to 98 months (mean, 34 mo), during which no patients demonstrated disease progression on magnetic resonance imaging scans. Eleven patients demonstrated radiographic regression. Of the 13 patients with pretreatment Gardner-Robertson Grade I or II hearing, 4 (31%) maintained useful hearing. No transient or permanent treatment-related trigeminal or facial nerve dysfunction was observed.
CONCLUSION : Fractionated proton beam therapy provided excellent local control of acoustic neuromas when treatment was administered in moderate doses. No injuries to the Vth or VIIth cranial nerves were observed. A reduction in the tumor dose is being evaluated to increase the hearing preservation rate.
3. Long-term results of stereotactic proton beam radiotherapy for acoustic neuromas
http://www.sciencedirect.com/scienceAbstract
Background and purpose
A retrospective study evaluating the role of hypofractionated stereotactic proton beam therapy for acoustic neuromas.
Materials and methods
The data of 51 patients treated with hypofractionation (3 fractions) and followed up for a minimum of 2 years, were analyzed. Mean dose prescribed to ICRU reference point (isocenter) was 26 cobalt gray equivalent (CGyE) in 3 fractions. Mean minimum tumor dose was 21.4 CGyE/3. Cranial nerve functions were evaluated clinically. Serial MR Scans were used to evaluate local control.
Results
With a mean clinical and radiological follow-up of 72 and 60 months respectively, the 5-year results showed a 98% local control, with a hearing preservation of 42%, a facial nerve preservation of 90.5% and a trigeminal nerve preservation of 93%.
Conclusion
For those patients harboring large acoustic neuromas that are inoperable, hypofractionated stereotactic proton beam offers long-term control with minimal side-effects./article/pii/S0167814008006166
4. Proton beam stereotactic radiosurgery of vestibular schwannomas
http://www.sciencedirect.com/science/article/pii/S0360301602029103 Abstract
The proton beam’s Bragg peak permits highly conformal radiation of skull base tumors. This study, prompted by reports of transient (30% each) and permanent (10% each) facial and trigeminal neuropathy after stereotactic radiosurgery of vestibular schwannomas with marginal doses of 16–20 Gy, assessed whether proton beam radiosurgery using a marginal dose of only 12 Gy could control vestibular schwannomas while causing less neuropathy.
Sixty-eight patients (mean age 67 years) were treated between 1992 and 1998. The mean tumor volume was 2.49 cm3. The dose to the tumor margin (70% isodose line) was 12 Gy. The prospectively specified follow-up consisted of neurologic evaluation and MRI at 6, 12, 24, and 36 months.
After a mean clinical follow-up of 44 months and imaging follow-up of 34 months in 64 patients, 35 tumors (54.7%) were smaller and 25 (39.1%) were unchanged (tumor control rate 94%; actuarial control rate 94% at 2 years and 84% at 5 years). Three tumors enlarged: one shrank after repeated radiosurgery, one remained enlarged at the time of unrelated death, and one had not been imaged for 4 years in a patient who remained asymptomatic at last follow-up. Intratumoral hemorrhage into one stable tumor required craniotomy that proved successful. Thus, 97% of tumors required no additional treatment. Three patients (4.7%) underwent shunting for hydrocephalus evident as increased ataxia. Of 6 patients with functional hearing ipsilaterally, 1 improved, 1 was unchanged, and 4 progressively lost hearing. Cranial neuropathies were infrequent: persistent facial hypesthesia (2 new, 1 exacerbated; 4.7%); intermittent facial paresthesias (5 new, 1 exacerbated; 9.4%); persistent facial weakness (2 new, 1 exacerbated; 4.7%) requiring oculoplasty; transient partial facial weakness (5 new, 1 exacerbated; 9.4%), and synkinesis (5 new, 1 exacerbated; 9.4%).
Proton beam stereotactic radiosurgery of vestibular schwannomas at the doses used in this study controls tumor growth with relatively few complications.
Also, please keep in mind that there are about 5 known individuals at this Acoustic Neuroma Forum who could speak of their positive experiences with Proton Therapy. I believe we also have one individual here who may not have been pleased with the outcome.
There are so many individuals at this forum who have had various treatments and have endured many struggles with amazing grace. Our hearts go out to all of you.
