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best position to hear, being more aware when crossing the road.

• In the clinic they use a number of questionnaires designed to measure the level of handicap suffered by patients.

• Hearing loss, tinnitus and balance are all discussed and referrals to other departments are made if necessary.

• The clinic has specialist knowledge about hearing aids and other equipment that may be of use to people with SSD.

Patients are referred to the clinic from anumber of sources. The majority areacoustic neuroma patients undergoing

AMNETNEWS Issue 49 Autumn 2010Single Sided Deafness (SSD)

Newsletter of The Acoustic Neuroma and Meningioma Network

AMNET is a sister organisation of BANA, the British Acoustic Neuroma Association. AMNET is a registered Charity No. 1073908

Rachel has been an audiologist working atAddenbrookeʼs Hospital for nine years andnow works on some specialist clinicsincluding adult neuro-otology, tinnitus andteenage deafness.

The SSD Clinic was the brainchild of DavidBaguley and it aims to meet the needs of allthose with SSD and has been running forthe last two years and was set up becauseAddenbrookeʼs is one of the main centres inthe UK for surgery on acoustic neuromaand a large number of patients requestaudiology management there, even whenthey live in other parts of the country. Thereare three audiologists who run the clinic,Rachel and two colleagues and it is run to astandard proforma for all patients.

There are a number of reasons why it wasfelt important to have a specialist clinic forSSD:• Loss of hearing can be traumatic, even with pre-operative counselling patients are often unprepared for the impact of SSD following surgery.

• SSD is different from symmetrical hearing loss and presents a different set of difficulties, sometimes more than the ones faced by those suffering symmetrical hearing loss.

• There is an emotional burden associated with hearing loss, and there can be a sense of grieving for the person you used to be, SSD makes an impact on your life and means behaviour may have to be modified in some situations to cope with it, for example making sure you are in the

surgery. They receive pre-op counsellingand then an appointment on the SSD clinicis arranged about three months after theiroperations. Patients may also be referredfrom the ENT clinic doctors, generalpractitioners and other audiology clinics andsome may be patients who have sufferedwith SSD for along time.

The way in which the clinic is structuredenables a full assessment of all patients.When a patient comes in for pre-operativecounselling this will usually be 1-2 weeksbefore surgery. • At this time current hearing levels and difficulties are assessed. This assessment provides a tool that is able to show the patient how things will change after surgery.

• Levels of tinnitus and balance problems are also assessed so an assessment of likely post surgery difficulties may be made. At this stage the amount of hearing loss is variable and patients can be reassured about the effects of SSD and warned about what they may experience after surgery.

• If appropriate at this time patients may also be introduced to hearing aids and other equipment that may be of use to them.

• A plan is made for when they will be seen again – this may be at the SSD three months post op, or if they prefer at a local audiology clinic.

Single Sided Deafness (SSD) Clinic atAddenbrooke’s Hospital, Cambridge.A talk by Rachel Knappett reported by Chris Richards

Next MeetingThe next meeting of AMNET will be held on Saturday 27th November 2010 in the Boardroom at Addenbrookes Hospital. Doors will open at 12.00hrsand as usual, at Christmas we ask everyone to bring a small contribution towards a buffet lunch. The meeting will welcome clinicians form Addenbrookesfor general discussion and a representative from CAMTAD who can introduce aids for those who are hard of hearing.

Referrals

Pre-op Counselling

We welcomed Rachel to our meeting on July 3rd 2010 to talk to us about Single Sided Deafness (SSD) and thespecialist clinic that has been set up at Addenbrooke’s Hospital.



At this visit patients are first asked tocomplete a number of questionnaires.These are aimed at assessing the level atwhich SSD is affecting patients. Thequestionnaires include:• Abbreviated Profile of hearing aid benefit (APHAB) which has subscales of topics such as: ease of communications, reverberation, background noise and noise aversiveness. This will give an impression of how effective a hearing aid is and any specific problems there may be.

• Tinnitus Handicap inventory.• Hearing Handicap Inventory- this measures the impact of hearing loss, but is less sensitive to difficulties associated with SSD.

• Speech Spatial and Quality Questionnaire has also been used with ʻwatch and waitʼ patients as it measures factors such as sensitivity to location of sounds and the quality of hearing – whether it is distorted.

• The Hospital Anxiety and Depression Scale helps to identify levels of anxiety or depression that may be present and may affect a personʼs ability to cope with their hearing loss.

The questionnaires allow the clinic staff toquantify handicap and measure outcomesand benefits and prioritise rehabilitationneeds.

Following the questionnaires: • a detailed history of onset, treatment and previous interventions is taken. Current hearing difficulties at home, socially and at work are assessed and issues identified.

• Tinnitus and balance are assessed as is general health and well-being.

• Audiometry and speech awareness testing are carried out if appropriate to see how much hearing is still present and how useful that hearing is.

• There is discussion of the impact of SSD, the burden it may be putting on the patient and how the patient feels about their hearing loss and any effects it is having on those around them.

• Patients may then be introduced to the current technology which includes CROS aids, BAHA, other hearing aids and assisted listening devices.

• A plan of further appointments and referrals and reports is made – often another appointment may be made for fitting a CROS aid to give the patient an opportunity to consider their options.

In the case of SSD hearing aids arerequired to reroute the signal received in thedeaf ear so it can be heard in the ʻgood earʼ.There is no ideal hearing aid to do this. TheCROS aid is available on the NHS andworks through a microphone placed behindthe deaf ear and then the sound istransmitted to a hearing aid on the good

ear. If there is some hearing loss on thegood side a BICROS aid may be used asthis gives amplification as well. At present the NHS will only pay for wiredCROS and BICROS aids as some of thewireless ones are more expensive, lessreliable and not felt to provide such a goodquality of sound. If a patient wants awireless CROS aid they are advised to trythe wired one first before spending moneyon a wireless one. The Bone Assisted Hearing aid (BAHA),where the receiver is implanted into theskull and then transmits sounds to the goodear, is another possibility and this has beenfound to be very successful for somepatients but less so for others. It is notfunded by Cambridgeshire PCT but may beavailable in other areas. A standard hearing aid may be fitted to theʻbetter earʼ if it is felt this would be helpful The Trans-cranial aid is worn deep insidethe bad ear and sends sounds through theskull to the cochlear in the other ear. Acommercial version of this called theTRANS-EAR is available but at presentthere is not a lot of evidence available aboutitʼs usefulness.

There are a variety of devices that canprovide aids for people with SSD theseinclude alerting devices such as flashinglights for doorbells, special smoke alarmsthat vibrate, telephone aids, special babymonitors. Many of these devices areavailable free of charge from the sensoryservices team within social servicesdepartments and referral can be made tothem if appropriate. It is possible to obtain headphones that canbe set to mono rather than stereo sound tohelp enjoy music. FM technology issometimes useful for people who need tohold conversations in noisy places or attendmeetings. If people need equipment for the workplacethen a government scheme called ʻAccessto Workʼ will also do assessments andprovide some funding towards aidsnecessary to enable disabled people towork -the costs are shared with theemployer. The SSD clinic will often providea report for ʻAccess to Workʼ to help get aidsthat are necessary.

The outcomes of this clinic will be formallyreported and written up as an article forpublication. Rachel outlined her ownobservations from the clinic so far.She has found that most people want to trya CROS or BICROS aid and some are ofbenefit, but they donʼt work for everyone.She also found that most people requirereferral to ʻsensory servicesʼ and socialservices for some aids and those who areemployed usually need referral to Accessfor Work. Some patients also pursue privateoptions but the clinic can provide initialadvice about what is available. Howeverwhat Rachel and her colleagues feel is thatthe overall benefit patients feel fromattending the clinic is from the counsellingand information that is provided.

There was a lively question and answersession after the talk and topics discussedincluded the fact that when patients have anacoustic neuroma hearing loss is not alwaysthe top of their priority list of issues to bedealt with. Rachel acknowledged this andsaid that was why the follow up appointmentis not for three months as this allows otherissues to settle down and as patients maybe preparing to go back to work. There was discussion about the lack ofdevelopment of wireless CROS aids and itwas thought this was partly due to the factthat research in this area is not costeffective for private companiesWe were reminded of the importance oflooking after the ʻgood earʼ and protecting itfrom further damage.There was some discussion of difficultieswith CROS aids and whether they can beused with a ʻloopʼ system. We were told thatCROS aids can be set up to use a loopsystem, which can be an advantage insituations such as cinemas.

There was quite a lot of discussion aboutmanaging SSD and strategies that can beused. I thought it might be something wecould develop in the newsletter so pleasesee my article on ʻLiving with SSDʼ

We would like thank Rachel for her veryinteresting and enjoyable talk and for givingup her time to come to the meeting.

There was some discussion of difficultieswith CROS aids and whether they can beused with a ‘loop’ system. We were toldthey can be set up to use a loop system,which can be an advantage in cinemas.

Initial Appointment on SSD Clinic

Hearing Aids

Other technology

Outcomes from the clinic

I thought you might like these pictures of Lake Louise and an elk. My husband and I spent two weeks in Canada this summer, a few daysin Vancouver followed by a trip on the Rocky Mountaineer train up through the Rockies and then another week exploring Jasper andBamff National Parks. The scenery was fantastic and we also saw lots of wildlife so I thought it would be nice to brighten up the newsletterwith a couple of pictures. There is a ground squirrel and an elk and the view from the top of the Jasper Tramway.

This is also an invitation for you to send me a picture, either of your holiday, or maybe of somewhere local that you have visited. It maygive others an idea of where they can go.



EditorialDear All

Welcome to the Autumn edition of the newsletter. I hope you have all enjoyed the summer, even if the weather couldhave been better most of the time. I had a fantastic holiday in Canada, and below I have provided a couple of picturesto give you a flavour. I am also suggesting others might like to send in a picture and a few words about their holidaysfor the next edition to brighten up what might be a long winter!

I would like to thank everyone for the birthday cake which was presented to me at the AGM. If you were not able to bethere, there is a report and some pictures on pages 6 and 7.

Other features of the newsletter include a report from Rachel Knappettʼs talk to us in July and an article by KenPullum who spoke to us in April. There is also an update from Peter Lawrence and some interesting news items. We are inviting you to join our ʻcommunicationʼ workshop on Saturday 30th October at Addenbrookes Hospital wherewe will talk about ways of supporting people faced with a diagnosis of acoustic neuroma. This is aimed at people whomight like to join our team of telephone supporters but is also open to anyone who is interested in joining us, even ifyou are not sure about being involved in telephone support.

I hope you enjoy the newsletter and as always I would welcome any contributions from you.

Best wishes

Chris

My Canadian Holiday

Introduction – why can there beophthalmic involvement withAcoustic Neuroma? Ken PullumThe 12 cranial nerves, some sensory, somemotor, some with both functions, emergefrom the skull (the cranium), as opposed tothe spinal nerves which originate in thespinal cord. The eighth (N VIII) is theacoustic. There are two branches, collatingfibres from the vestibular apparatus andfrom the cochlea.The vestibular apparatus, sited in the bonylabyrinth in the inner ear, senses headmovements. This enables coordination ofmotion, eye movements, orientation,posture, and balance. Individuals with partialor complete loss of vestibular function mayfind even quite elementary tasks difficult toperform. The cochlea assimilates auditorystimuli: loss of function leads to reducedhearing.

The structure of the vestibular apparatus and cochlea.

The modern name for N VIII has becomethe vestibulocochlear nerve and is theafferent (sensory) pathway for signals fromboth structures in the inner ear. The morecommonly used name remains the auditoryor acoustic nerve. An Acoustic Neuroma (AN) is a benigncerebral tumour. AN is not normally life-threatening unless it grows to size largeenough to press on the brain, and most canbe treated before this stage. ANs accountfor eight out of 100 primary cerebral

tumours, that is, originating in the brain,rather than spreading to the brain fromelsewhere. Approximately 3,000 cases arediagnosed each year in the United States,600 – 700 in the UK. Incidence peaks in thefifth and sixth decades and both sexes areaffected approximately equally.ANs grow from Schwann cells, usuallyaround the N VIII vestibular branch.Schwann cells are responsible formaintenance of the myelin sheath,effectively keeping the nerve axon insulated.The more accurate term is a VestibularSchwannoma, but again, the betterunderstood name remains AcousticNeuroma. An AN tends to grow very slowly,and does not metastasise from its original

site. Sometimes, it is so small and slow-growing that it does not cause anysymptoms or problems. If it does grow,expansion is within the internal auditorycanal where it can enlarge to compress thetrigeminal nerve, which is responsible forfacial sensation.The very close proximity of N VIII to thefacial nerve (N VII) is the main cause ofcomplications. Minimising collateral damageto the facial nerve as a consequence of thetreatment presents a major challenge evenwith the most expert techniques. Theconsequence of N VII involvement is loss offacial muscle function on the same side asthe tumour, in particular causing the lower lidto droop away from the ocular surface(lagophthalmos), and adversely affecting theeyelid closure mechanism. The integrity ofthe cornea is at risk due to exposure anddehydration without an adequate lid closure,so following the primary cerebral treatment,a further intervention may be required.

Amelioration of corneal exposurekeratitis Surgical options The surgery available is intended to raisethe lower lid to reduce the lagophthalmos, orto reduce the height of the upper lid toreduce the exposed area of the cornea. Apartial or total tarsorrhaphy, that is suturingthe upper and lower lid margins together,may be necessary. A further option isinsertion of a gold weight into the upper lid toinduce closure. All of the surgical choiceshave obvious drawbacks, but may benecessary if the cornea is suffering too badlyas a result of the exposure. A majordrawback is that if successful, vision isinterrupted.

Therapeutic contact lensesNon-surgically, contact lenses are alsoindicated to reduce evaporation of the tearfilm normally covering the cornea. The usual first option is to use a ̒bandage ̓ortherapeutic soft lens (TSL). The mainproblem is that the lens itself dehydrates,



Scleral lenses in the management of corneal exposure in the aftermath of Acoustic Neuroma.This article was written by Ken Pullum, the speaker at our April meeting and originallypublished in BANA Headlines so I thank their editor and Ken for permission to includethe article in this issue of the newsletter.

Diagrammatic ‘cut-away’ illustrationshowing the structures of the inner ear. Notehow close are the vestibular and cochlearbranches of the auditory (acoustic) nervesand the facial nerve.

The second diagram is further cut awayshowing the spread of an AN in the auditorycanal.

During the spring of 2008 she developed anAN on the same side. This has left her withno lid closure at all and a permanentlyexposed cornea. A Scleral Lens, especiallyin view of her previous familiarity, was afeasible option. Jess was fully receptive tothis. Thus far she has made such asufficiently successful outcome under verytrying circumstances. She felt confident totake a long haul flight to Australia to visit herfamily, wearing the lens constantly day andnight, but with frequent removal for cleaningand immediate reinsertion. There was no closure of the eyelids at all,leaving the cornea exposed constantly. AScleral Lens provided full protection andcorneal hydration. It also gave a significantimprovement in the vision while the lens wasworn because it optically neutralised theincreasingly irregular surface. Even for a fewseconds without the lens, the eye becameuncomfortable. In this case the effects ofexposure had not set in as had happened inPamʼs case. Not all exposed corneasvascularise, but if that is the manner of thedisease process, it is possible that ScleralLens wear may retard the progress.

SummaryExposure of the cornea is a major problemfollowing AN. Further surgery after theprimary treatment must be an intimidatingnotion, and there is never a certainty with theoutcome. Contact lens management is notwithout problems, but in many cases can beeffective with the minimum of furtherpotential morbidity. Most importantly, a nonsurgical trial can be carried out giving areasonable idea of the potential benefit.Scleral Lenses are especially useful as theyretain a pre-corneal fluid reservoir forhydration and are not subject to dehydration. It appears to the author that this simple, non-invasive approach to dealing with theaftermath of AN is under-estimated in value.Scleral Lens practice is not fully covered inthe training programme for contact lenspractitioners whether they are optometristsor ophthalmologists. Therefore the clinicalskills are not well understood and the optionis not often suggested. However, there areophthalmic centres able and willing to takeon the task, but it may be up to theindividuals suffering the effects of AN to raisethe subject so that assessment at a centrewhich is favourably disposed is madeavailable.Ken PullumSpecialist Scleral Lens OptometristMoorfields and Oxford Eye HospitalsFebruary 2009

causing shrinkage and possible ejectionfrom the eye. They are also difficult to keepclean once on the eye. Most people whouse TSLs do not like to or are unable toremove them, so it is usual to leave them insitu for long periods. Part of the make up ofthe tears is bacteriostatic, but even so,infection from extended wear remains asignificant risk.

Scleral lensesAnother, less often considered, alternative isa Scleral Lens. The very first contact lensesproduced 120 years ago were made fromblown glass and

A rigid corneal lens and a scleral to show thedifference in the size

were large enough to cover the cornea andthe sclera, hence the name. After the 1940ʼs,they were made from polymethylmethacrylate (PMMA). This was animprovement for obvious reasons, butoxygen permeability remained a majorlimitation. Modern day Scleral Lenses areavailable in gas permeable materials, as isthe case with all rigid lenses, so there hasbeen renewed interest in recent years. Oneparticularly valuable application is to retain apre-corneal fluid reservoir, which providestotal protection from corneal dehydration.The lens itself has no water in the polymer,so it does not dehydrate. In addition, manywearers for therapeutic applications findthem easier to insert and remove than softlenses. Therefore, although the lens wouldbe worn for the maximum possible time toretain corneal hydration, removal to clean asnecessary is much less of a dauntingprospect.

Some Short Case StudiesPam attended a hospital Corneal Clinicsuffering the aftermath of AN. Some timehad passed before the Scleral Lens wastried, and there was already advanced signsof corneal exposure. Only partial lid closurewas possible, and a demarcation line on thecornea is clearly seen. Above the line, thecornea appears to be normal, below,vascularised as a consequence of exposure

keratitis. The lower lid alignment is normal,

but the upper lid is static at about the level ofthe upper pupil margin. On retraction, thecornea in the lower half is seen to be cloudyand vascularised. A Scleral Lens in situcovers the exposed cornea. The visualacuity improved to 6/36 from ability to countfingers only. Further improvement to restorethe vision to that prior to the AN was notpossible as the cornea had already beenrendered partially opaque by the effects ofthe exposure. There was a secondarybenefit from Scleral Lens wear by raising theupper eyelid. It could be that some of theeffects of the exposure could have been atleast partially reduced if the lens had beenissued earlier. Pam has now been using thescleral lens every day, with improved ocularcomfort and no deterioration in the conditionof the cornea. Jess first presented 25 years ago following aroad accident after which her left eye wasleft divergent and immobile with intractable

double vision. One option was to provide acosmetic shell to occlude the left eye, butultimately Jess preferred to learn to live withthe double vision so she could retain thevisual field in the left eye.



compared to last year with eleven newmembers, but donations were slightlydown. The trophic stimulator rentalswere slightly up this year and all threestimulators have been rented out forthe whole year.Due to the recession bank interestpayments have reduced from £53.37 to£1.39 for the year.

ExpenditureThe cost of printing and circulating thenewsletter has increased by £200 andis likely to rise again next year due tothe change in printer. Joanne pointedout that there may be a need toincrease subscriptions next year tocover this and other expenses such asa PA system to support the radiomicrophone we now have. Thecommittee would welcome suggestionsto improve income, possibly byencouraging life membership paymentsor setting up of standing orders forpayment of subscriptions.The committee would also welcomeideas that might raise funds for theorganisation.As usual we would like to thank MichaelBartlett for his auditing.

The accounts for 2009-10 wereaccepted.Proposer Jill Laurimore SeconderBrian Bagnall

Election of OfficersThe present committee and trusteesagreed to stand for re-election as therewere no other nominations.

for giving their time to broaden ourknowledge.During the year our very good printershave gone out of business, so ourthanks go to Chris who had to rusharound finding us a new one. Theyprinted the Spring newsletter with adifferent format. We would welcomewritten or spoken feedback on this sowe can continue to improve this goodadvertisement for AMNET.AMNET maintains it’s positive links withBANA and I have become a trustee ofMeningioma UK to strengthen that link.We always welcome suggestions frommembers of anyone else we shouldcontact or add to the newsletter and/orwebsite.Chris and I have continued our 6monthly meetings with Clinic 10 staffand hope to include other committeemembers over the following year.AMNET has been trying to liaise withthe physiotherapy department to havesome input for them from DianaFarragher, which we would help tofund. I will let you know what happenswith this and how any AMNET moneywill be spent.I finish with my thanks to the manypeople who help AMNET in variousways to keep it running successfully.

Treasurer’s ReportThe accounts for 2009/10 werepublished in the letter of invitation sentto members.

IncomeJoanne reported that subscriptionswere slightly increased this year



ApologiesN Burjsse, E Clark, E Gudgen, AHastings, F Haynes, N Jordan, P Miles,P Moxham, P Otley, M Nicholas, DPurkiss, J Watts

We welcomed Jackey (Secretary) andAlan Weightman and KevinDimmelow(Chair) from BANA to ourAGM.

The minutes of the last meeting wereaccepted.

Chairman’s ReportAlison welcomed us to the beginning ofAMNET’s 14th yearWe have continued to attract newmembers and lots of enquirers, thefurthest being Australia this year. I felt things were a bit stuck during theyear. It occurred to me that not muchcan change, just widen as we areoffering help and support from ourrange to different people, some ofwhom will want the same as theprevious two, three, ten people,however for each person it is just asimportant. So not much has changedduring the year, but in each areacommittee and members are workinghard to provide what is needed. Thiscovers a single question, loads of itemsfrom the library, wanting to talk tosomeone, use of trophic stimulators,preparing and distributing newslettersand the website to name a few.However we have not made muchprogress with extending the phonecontacts. Mostly people ring me and Itry to set up an appropriate one –to-onewith one of our members.Our speakers this year have covered avery good update on tinnitus and earproblems from David Baguley inNovember at our enjoyable Christmasmeeting. Ken Pullum educated usabout scleral lenses in themanagement of acoustic neuroma inApril and today we will hear about thenew Single Sided Deafness Clinic atAddenbrooke’s Hospital. As ever we are grateful to our speakers

Minutes of AMNET Annual General Meeting held onSaturday 3rd July 2010

Officer Name Proposed Seconded

Chairman Alison Frank Margaret Allcock Janice Pettitt

Secretary John Peartree Jill Laurimore Brian Bagnall

Treasurer Joanne See Janice Pettitt Sue Mansfield

Other Committee members

Chris Richards Newsletter editor

Margaret Allcock Trophic Stimulators

Janice Pettitt

Other Helpers: Rachel Pearson Membership

Caroline Shepherd Newsletter Distribution

Amnet Newsletter No 49:Layout 1 30/09/2010 15:51



Any Other BusinessChris reminded members that she isalways looking for contributions for thenewsletter, however small – anythingthat may be of interest to othermembers.She also highlighted the need for somefundraising and for suggestions thatmoney raised could be used for insupporting the activities of AMNET.The committee is looking at revising theobjectives of our constitution to keep upwith the changes in management ofacoustic neuroma over recent years,and may bring these to next yearʼsAGM.We are also looking for people whowould be willing to provide telephonesupport to enquirers and will be runninga workshop for anyone who may beinterested on October 30th.

Top image: Members at the AGM onSaturday 3rd July 2010Directly above: AMNET Committee(from left to right) Joanne See, JanicePettitt, John Peartree, MargaretAllcock, Chris Richards and AlisonFrank. Right top: Chris’ birthday cakeRight bottom: Chris cutting herbirthday cake.



Peter Lawrence and his Acoustic Neuroma

Cell Phones andAcoustic Neuroma

Regular readers may remember that Iwas found to have an acousticneuroma in June 2006 and that I saw 4different specialists who suggested 4different courses of action (surgery,fractionated radiosurgery, gamma kniferadiosurgery or wait and watch). Afterthis advice and reading of the medicalliterature I decided to wait and watchwith a plan to go for the gamma knife ifthe tumour grew. By summer 2008 thetumour was shown to have grown and Iwas treated in June 2008 with thegamma knife machine in Sheffield byMr Jeremy Rowe and his team (seeprevious Amnet reports).By winter 2008 I had some problemswith balance and some vertigo onexertion, and so I saw Dr SarahJefferies who advised an MRI inJanuary 2009 that showed nothingalarming, a little swelling, and this wasput down to the irradiation itself. I wasadvised not to worry and indeed theseproblems waned within a few months.In January 2010 I had another MRI andthis showed no further growth of thetumour within the accuracy ofmeasurement. Not only that the tumourlooked sick. Normally they look ratherevenly white from the contrast

enhancement but mine had a blackcentre. This is thought to mean that thecells are dying in the middle and inmost cases tumours that look like thisgo on to shrink. So I am hopeful that Iwill not have to worry about thedamned thing any more, although I willhave to have an MRI scan from time totime to make sure.In 2008 a paper reported on the effectsof the gamma knife on more than 300cases like mine. Typically, about 6months following irradiation someswelling is followed by a stabilisation ofsize (ie no growth) over the next years,and after about 5 years in nearly all thecases they shrink dramatically. Theunlucky minority (about 5%) do growagain, usually within the first few yearsfollowing treatment, but it now appearsthat even these can be treatedsuccessfully a second time with thegamma knife. I have not found recent evidence thatwould contradict a good quality paperof 2006 that stated that “radiosurgeryshould be considered the bestmanagement strategy for the majorityof VS patients”: I guess this statementrefers especially to acoustic neuromassmaller than about 2cm in diameter.

This article comes from the AmericanAcoustic Neuromaʼs newsletter

The widespread use of cell phonesand many studies on cell phones andpossible associated health risksprompted the ANA Board ofDirectors to initiate a statementregarding cell phone usage andacoustic neuroma.

This statement is endorsed by ourANA Medical Advisory Board.

This is intended as a cautionaryalert. This information is notintended to take the place of adviceand guidance from your personalphysician. You should always consultwith your physician with questionsand concerns. It is important toremember that early diagnosis ofsmall tumors provides moretreatment options and greatersuccess, with the greater possibility offewer long-term complications.

There has been much interest andcontroversy in the past decaderegarding the possible role of mobilephones as a cause of brain tumours.The use of cell phones has becomeubiquitous around the world and if theyplayed a causative role in a diseaseprocess, even such as causing abenign tumour like an acousticneuroma, it would have tremendouspublic health implications. According tothe Telecommunications Union, by2006, 91 out of 100 were cell phonesubscribers in developed countries. Asmany as 32 persons per 100 weresubscribers in the developing world.There have been 25 epidemiologicstudies published between 1999 and2008 trying to examine the role ofmobile phones in the etiology of braintumors, including ANs. Most notably, alarge study from Sweden by Hardelland colleagues, and a multi-institutionalstudy involving 16 centers in 13countries called INTERPHONE, have

admirably tried to answer this importantquestion.

Overall, the best interpretation of theresults of these studies does notdemonstrate support for an increasedrisk of developing an AN in frequent cellphone users. However, the science isvery suggestive that the most malignantbrain cancer (glioblastoma) and abenign brain tumor of the auditorynerve (acoustic neuroma) increased incell phone users after 10 years of use,and the effect is more pronounced inchildren's brains. But the science is notabsolutely positive, and research in thisarea is continuing.

The World Health Organization (WHO)announced that long-term use of cellphones may be linked to elevated riskof some types of brain issues. Theconclusion, which is reportedly stillinconclusive, is derived from alandmark international study overseenby the WHO that has lasted fordecades.

The results, though not entirelyconclusive, clearly have concerned theWHO. Dr. Elizabeth Cardis, fromWHO, is quoted as saying "In theabsence of definitive results and in thelight of a number of studies which,though limited, suggest a possibleeffect of radio-frequency radiation,precautions are important." There isparticular concern regarding use bychildren, as their thinner skulls are lesslikely to shield the brain from harmfulfrequencies.

The Food and Drug Administrationsays the research "does not allow us toconclude that mobile phones areabsolutely safe, or that they areunsafe."



Living with SSD

The Food and Drug Administration says the research "doesnot allow us to conclude that mobile phones are absolutelysafe, or that they are unsafe."

Those who cannot avoid using cell phones may consider the advice offeredby the Environmental Working Group to minimize their exposure toradiation.

1. Use a low-level radiation cell phone. Check out www.ewg.org for the best 10 cell phones that emit low-level radiation.

2. Use a headset or speaker.

3. Listen more and talk less. Cell phones emit radiation when you talk or text, but not when you are receiving signals or messages.

4. Hold your cell phone away from your body.

5. Text more and talk less.

6. Stop trying to communicate when the signal is poor. Poor signals mean your cell phone needs to send stronger signals (higher level radiation) to the tower.

7. Don't allow your children to use or play with your cell phones. Children's brains absorb twice as much radiation as adults.

8. Don't use the "radiation shield." Radiation shields such an antenna caps or keypad covers reduce the connection quality and force the machine to emit higher radiation to deliver a stronger signal.

Many of our members are livingwith single sided deafness, eithertotal or very much reducedhearing in one ear. I though itmight be interesting to sharesome of the highs and lows of thiscondition and ways of coping.

I will start you off but Iʼd like tohear from the rest of you

One disadvantage of SSD isfeeling like an idiot when shopassistants talk to me and I donʼtrespond, especially if the shophas loud ʻcannedʼ music.

However an advantage is beingable to sleep on my good side soirritating noises such as airconditioning in hotel rooms do notreally bother me!

Letʼs hear some advantages anddisadvantages (as well as helpfultips) to living with SSD!

Chris Richards

A pioneering project, providing vitalencouragement and support to helppeople adjust to wearing hearing aids,is being launched in Leeds by RNIDtoday (3 August 2010). It is the first of21 projects being launched across theUK over the next 12 months. Funded by The Co-operative Group,the new Hear to Help projects aim toreduce the loneliness and isolationoften experienced by people who wearhearing aids. The Hear to Help projects will trainvolunteers, many of whom have ahearing loss themselves, to showothers how to get the best performancefrom their hearing aids, so that they canhear more clearly and improvecommunication with friends, family andcolleagues. Hear to Help volunteers willhelp people to carry out basicmaintenance on their hearing aid, suchas replacing tubing and batteries, aswell as providing advice on equipmentthat can make life easier in theworkplace and at home.RNID's Chief Executive, Jackie Ballard,says: "RNID's new Hear to Helpprojects will provide life-changingsupport for hearing aid users and helpreduce demands on local audiology

Many of us will remember the feeling of shock when we first received a diagnosisof acoustic neuroma and possibly the difficulties of considering what to do next. Anumber of people faced with this situation do contact AMNET, either immediatelyor further down the line, and we are usually able to offer a listening ear and somesupport. We would like to extend the range of people providing this support,including those who have possibly been in the situation not too long ago. If youthink you might would be interested in helping us to support the people whocontact us, please come along to a workshop we are organising on Saturday Oct30th 2010 at Addenbrookes Hospital. The programme is below. There is noobligation to take on a role, you are very welcome to come if you are justinterested in the workshop. The workshop will be informal and everyone’scontributions will be encouraged.

If you have already suggested to us that you might be interested we will contactyou directly, but there is space for plenty more. Please contact Alison or Chris(01953 860692 or Chris 01954 211300) by Sat Oct 23rd October.

of RNID, Peter Marks, says: "We aredelighted to be funding the Hear toHelp project to reach people who havebecome isolated due to hearing loss.The incredible fundraising achievement

of The Co-operative in raising £3.7million for RNID last year means this isthe first of over 20 new Hear to Helpprojects across the UK. Overall, theseprojects will benefit 20,000 people whoare deaf or hard of hearing."For more information about RNID's newHear to Help projects, contact RNID'sInformation Line on 0808 808 0123(freephone), email:[email protected] or visitwww.rnid.org.uk/HearToHelp (externallink)

departments for post-fittingrehabilitation services. Getting used toa hearing aid can be difficult and takestime, and this service will proveinvaluable.

"Our committed team of volunteersup and down the country will runcommunity drop-in sessions andmake home visits to build theconfidence of hearing aid users. It’samazing to see the tremendousimpact a hearing aid can have intransforming a person’s ability tohear and live a full and active life."

Group Chief Executive of The Co-operative Group and a Vice President



RNID launches first of 21 new 'Hear to Help' projects - 03August 2010

Would you like to help to support people who have beendiagnosed with acoustic neuroma?

Funded by e Co-operative Group, thenew Hear to Help projects aim to reducethe loneliness and isolation oenexperienced by people who wear hearingaids

Amnet Newsletter No 49:Layout 1 30/09/2010 15:51

Communication WorkshopSaturday October 30th 2010 – 10.30 -15.00 hrs atAddenbrookes Hospital (Boardroom)



Would you like to join AMNET?We provide:• Telephone contact with past patients, who understand what you are going

through, and have time to listen• A regular newsletter for members, with information about developments

in treatment and living with acoustic neuroma• Regular meetings, providing the opportunity to listen to expert speakers and

meet other members• A library of resources, which can be hired by members• A detailed website, at www.amnet-charity.org.uk

If you would like to join AMNET and support our work please complete the form below and send a £15 annual subscription to:

AMNETThe Old School House, The Green Old Buckenham, NorfolkNR17 1RR

Name

Address (with postcode)

*Email

*Telephone (* optional)

Type of treatment (Please tick)

Watch, wait & rescanMicrosurgeryRadiosurgery

I enclose a Cheque/Postal Order for £15for my yearly subscription to AMNET.

10.30am: CoffeeWelcome 10.50am: What are people looking for?11.45am: Developing effective communication – key factors in communicating with others. LunchMaking a decision. 14.00pm: Using communication skills – interactive session. 14.30pm: Guidelines for working with phone enquiries

As Joanne pointed out in her report at the AGM AMNET has so far always beenable to ʻbalance the booksʼ and cover the costs of our activities, although in recentyears with little money to spare. The main expense is producing the newsletterand we know that our members do look forward to receiving this so we want tokeep up the quality in the face of possibly rising costs.

As an organisation there are other things we would like to be able to do,alongside the support we give to members and others such as supporting thework of local clinicians through research projects and training. To this end we arelaunching a fundraising appeal. There are numerous ways in which people areable to raise money for charity these days and we are not suggesting ourmembers indulge in parachute jumps (my daughter has suggested she might dothis!) or marathons, but possibly a coffee morning for friends or donations in lieuof gifts from a family event. We could then possibly offer study bursaries to nursesand audiologists and others who support patients with skull base tumours, so theycan attend courses or conferences which will enhance their practice.

Fundraising



Forthcoming MeetingsThe next meeting of AMNET will be held on Saturday 27th November 2010 in the Boardroom at Addenbrookes Hospital.Doors will open at 12.00hrs and as usual, at Christmas we ask everyone to bring a small contribution towards a buffetlunch. The meeting will welcome clinicians form Addenbrookes for general discussion and a representative fromCAMTAD who can introduce aids for those who are hard of hearing.Our Spring meeting will be held on April 2nd 2011 when our speaker will be Richard Price MD, FRCS(Plast)Consultant Plastic & Reconstructive Surgeon who will talk about facial nerve reconstruction.

Changing FacesSupport for people with temporary or longterm facial disfigurement problemsW. www.changingfaces.org.ukE. [email protected]. 0845 4500 275

British Tinnitus AssociationW. www.tinnitus.org.ukE. [email protected]. 0800 018 0527Minicom. 0114 258 5694A. Ground Floor, Unit 5, Acorn BusinessPark, Woodseats Close, Sheffield, S8 0TB

Entific Medical SystemsInfo about bone conducted hearing aids,particularly for single sided deafness.W. www.entific.com

Addenbrookes HospitalNeurotology & Skull Base Surgery UnitW. www.addenbrookes.org.uk/serv/clin/neurotol_skullbase1.html

AMNETW. www.amnet-charity.org.ukE. [email protected]. 01953 860692A. The Old School House, The Green,Old Buckenham, Norfolk, NR17 1RR

British Acoustic Neuroma Association(BANA)W. www.bana-uk.comE. [email protected]. 01623 632143F. 01623 635313Freephone. 0800 6523143A. Oak House B, Ransomwood Park,Southwell Road West, Mansfield, Notts,NG21 0HJ

Meningioma UKW. www.meningiomauk.orgE. [email protected](Patient information & support)[email protected](Meningioma UK)T. 01787 374084

Brain Tumour UKW. www.braintumouruk.org.ukT. 0845 4500386 (10am-1pm, Mon-fri)A. PO Box 27108, Edinburgh, EH10 7WS

Royal National Institue for the Deaf (RNID)W. www.rnid.org.ukE. [email protected]. 0808 808 0123 (Info line - Freephone)Textline. 0808 808 9000Tinnitus HelplineT. 0808 808 6666 (Freephone)Textphone. 0808 808 0007 (Freephone)A. 19-23 Featherstone Street, London,EC1Y 8SL

Cambridge Campaign for TacklingAcquired Deafness (CAMTAD)W. www.camtadcambs.org.ukE. [email protected] / Text / Fax. 01223 416 141(Mon - Fri 9.30am - 12.30pm)A. 8A Romsey Terrace, CambridgeCB1 3NH

Directory

BANA BookletsBANA has produced some booklets which may be of interest:• A Basic Overview of Diagnosis & Treatment of Acoustic Neuroma • The Facial Nerve & Acoustic Neuroma• Headache after Acoustic Neuroma Surgery • Eye Care after Acoustic Neuroma Surgery• Effects an acoustic neuroma can have on your memory, emotions, behaviour, executive functioning and energy• Balance following Acoustic NeuromaAll these booklets are available from Alison. There is a £2 charge for all books.

Facial StimulatorsAMNET has some Facial TrophicStimulators which are available tomembers for a short term loan. There is acharge of £30 at present which includesmaintenance and postage. If you wouldlike to know more please contact:Margaret Allcock on 01493 700256

Necessary NoteAMNET News is very appreciative of the opportunity to publish items relevant to theinterests of acoustic neuroma and meningioma patients. This includes instances wheremembers of AMNET have experienced relief, improvement, difficulties or otherwise andwrite to us of their experiences in order to pass on information for the interest and possiblebenefit of other members. However, AMNET cannot endorse proprietary products or beheld responsible for any errors, omissions or consequencesresulting from the contents of this Newsletter.

AMNET Advisory Panel at Addenbrooke’s Hospital, CambridgeMr David Baguley MSC MBA Principal Audiological Scientist. Kate Burton Advanced Practitioner in Neuro-Oncology. JeanHatchell Clinical Nurse Practitioner. Melanie Jackson Skull Base Nurse Practitioner. Mr Robert Macfarlane MD FRCSConsultant Neurosurgeon. Mr David Moffat BSc MA FRCS Consultant in Otoneurological & Skull Base Surgery.Ella Pybus Co-director Meningioma UK and Trustee of BTUK. Mr N J C Sarkies MRCP FRCS FRCOphth ConsultantOphthalmic Surgeon.

Chairman-Alison Frank 01953 860 692. Treasurer-Joanna See 01487 814380. Newsletter Editor-Christine Richards 01954 211300Please consider writing for your newsletter. It can be anything you feel will be of interest to members from a few lines to a couple of pages.It all helps to make the newsletter more interesting. Email: [email protected] If you would like to make a contribution please telephone or email me.

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