acoustic neuroma… all in the family - irsa have now treated a number of patients with both low...

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Volume 5, Number 1ISSN 1086-427X

IRSA

ACOUSTIC NEUROMA…ALL IN THE FAMILY

Gamma Knife radiosurgery was not offered inOhio and much of the current research camefrom The University of Pittsburgh, I chose toconsult with Dr. Dade Lunsford atPresbyterian Hospital, part of The Universityof Pittsburgh. My procedure was performedon the morning of January 3, 1995. Myrecovery was immediate with no side effects.

Five years have passed and I have had avery positive result. My hearing wasmaintained over the first four years, althoughI have experienced a slight decline recently. Inow wear a “state of the art,” almost invisible,digital, programmable hearing aid by SonnicInnovations called Natura. Radiosurgery hadno affect on my balance and trigeminalnerves. My 2.3 centimeter tumor has stoppedgrowing and has begun to shrink. My experi-ence has been so positive that I have sharedit with others on the Internet and on televi-sion. Five years passed and the acousticneuroma was no longer part of my dailyconscious thought.

Marjie and Jeff each had an acoustic neuro-ma. We thank them for sharing their coura-geous story with us.

Marjie:This is a story about coincidence and

determination. It is a wonderful story for theInternational Radiosurgery SupportAssociation because it contains all the pointsof concern that we each face during our unset-tling trip through the decisions surroundinghow to treat brain tumors.

It begins with me, Marjie, when I startedhaving hearing problems in late 1994. InDecember of that year I was diagnosed withan acoustic neuroma and began my search forthe “right” solution to my problem. In 1994the medical profession in Columbus, Ohio

firmly believed insurgery as the only rea-sonable treatment forbrain tumors, evenbenign ones such as anacoustic neuroma. Myinitial search brought meto the “best” and “most

knowledgeable” otolangologist in the citywho told me surgery was considered the treat-ment of choice. I initially thought this wasmy only option but had concerns after learn-ing about potential post-operative problems.Although each negative outcome representeda small probability, to me the cumulativeeffect of the problems was too high to ignore.In addition, I still had 94 percent hearing inmy right ear and no noticeable balance prob-lems. Surgery did not appear to be the way toensure the preservation of my hearing andbalance.

My husband, Jeff, and I began to investi-gate the available alternatives. Some of ourfriends were very knowledgeable about waysto use the Internet (even in 1994) and theyhelped me discover the Gamma Knife. Since

Continued on page 11

Jeff and Marjie

FEATURESDifficult Tumors .......................2-4New MRI’s ...................................7Medical Records ..........................8

PATIENT STORIESAcoustic Neuroma........................1Glioblastoma ................................5AVM.............................................8

2 Another Perspective, Volume 5, Number 1

StereotacticRadiosurgery

Stereotactic radiosurgery is not surgery.The skull is never opened. Radiosurgeryinvolves the use of precisely directed sin-gle fractions of radiation to create lesionswithin the brain or to treat tumors or vas-cular malformations with minimal dam-age to surrounding structures or tissues.

This works by delivering a relativelyhigh dose of radiation in one session tothe target with scalpel-like precision. Thedose is designed to injure or kill the cellsor their supporting blood vessels, whileminimizing its effect on surroundinghealthy tissue. The radiation distorts thecells’ DNA, causing them to lose the abil-ity to replicate themselves. The safety andclinical effectiveness of this techniquehas been established since 1968 in over150,000 treated individuals.

The benefits include: No risks ofinfection or anesthesia reactions; virtuallyno pain; reduced costs; and an immediatereturn to normal activities.

Radiosurgery may or may not beappropriate for your condition. It may beused as the primary treatment or recom-mended in addition to other treatmentsyou may need. Only a treating neurosur-geon can make the evaluation as towhether you can be treated. Some of themost common indications for treatmenttoday are:

• Arteriovenous/vascular malformations• Meningiomas• Acoustic neuromas• Pituitary and pineal tumors• Metastatic tumors• Glial and astrocytoma tumors• All other malignant & benign tumors• Trigeminal neuralgia• Parkinson’s tremors/rigidity• Functional disorders

DisclaimerAll technical information regarding

any technology published by IRSA, inthis publication or elsewhere, has beenprovided by the manufacturer of theequipment. The publisher does not war-rant any instrument or equipment normake any representations concerning itsfitness for use in any particular instancenor any other warranties whatsoever.

Stereotactic Radiosurgery forDifficult and Dangerous Tumors

The field of stereotactic radiosurgery has evolved markedly overthe decades. In the past we treated simple, spherical pathologieswith a simple solitary shot of radiation. Now with increased expe-rience, and improved planning software and technology, we areboldly tackling complex, large, irregularly shaped masses thatwere once thought to be untreatable.

The successful use of this technology for treating small tumorsin dangerous locations has blossomed to near perfection. Recurrent tumors in thepediatric population are now being treated with stereotactic radiosurgery, allowing ayoung child to avoid a second or third craniotomy. All this has prompted the evolutionof a “new era” of radiosurgery.

The radiosurgeon is often faced with a patient who has had multiple open surgeries,saddening complications and a recurrent tumor. I have seen many young children, forexample, who have had two or three craniotomies to remove a tumor which is justimpossible to remove. Had these patients been seen by the radiosurgeon with a newMRI scan immediately after the initial operation, perhaps they could have been treatedand potentially cured with radiosurgery. The problem lies in a relative misunderstand-ing of the potential of radiosurgery on the part of patients, families and referring physi-cians.

In the four cases presented on pages 3 and 4, radiosurgery was furthest from theminds of the original treating physicians. The family members did their due diligencein researching their loved ones’ options and often they themselves served as the refer-ral source. Misunderstandings such as “the tumor is too large,” “it is near very criticalstructures,” or “its shape is too complex to treat” are simply the words of physiciansinexperienced with the technique and results of radiosurgery. Only an experiencedradiosurgeon is able to make those judgements.

The “new era” of radiosurgery is now upon us. We can now treat pathologieswhich were once thought untreatable. As we move into the new millennium more andmore patients will be helped with stereotactic radiosurgery.

Dr. Christopher Duma is the Medical Director of Hoag/UCI Gamma Knife Center at HoagHospital in Newport Beach, California. He can be reached by phone at +949-574-6232, andthrough e- mail at cduma @hoaghospital.org.

Dr. Christopher Duma

3Another Perspective, Volume 5, Number 1

Case number one is a 38-year-oldmale who was in good health until severeheadaches, nausea and vomiting, andvisual changes led to an MRI. Thisrevealed a large suprasellar cystic massand obstructive hydrocephalus. Heunderwent temporary ventriculostomyand a frontal craniotomy for removal of acraniopharyngioma (a remnant ofembryogenesis in the pituitary region).He did well postoperatively and requiredtotal pituitary replacement therapy.Months later, the tumor was back, againcompressing his optic nerves. Thepatient refused to have another operationand sought Gamma Knife radiosurgery.

A complex treatment plan, with“plugging” of certain collimator holes inorder to keep the dose of radiation awayfrom the optic nerves, was administeredusing the Gamma Knife. As you can seefrom the images above the tumor beganshrinking within two months and by oneyear, the tumor was gone. The patientavoided a second craniotomy, whichinvariably would have resulted in yetanother incomplete resection, and he iscurrently in perfect post-Gamma Knifecondition.

Continued on page 4

The patient is a very bright, alertand intelligent 10-year-old young lady,who at age two underwent a biopsy of ahypothalamic lesion. This was consid-ered an astrocytoma at the time (a lowgrade, benign tumor). She underwent 18months of chemotherapy and radiationtherapy. She did well until the tumorbegan to grow again, changing from twocm in diameter to about three cm indiameter over six months. Even an inex-perienced viewer can see from theimages shown here that the tumor in thisbright, intelligent and fully functionalpatient is not resectable by surgicaltechniques. She underwent GammaKnife radiosurgery with a complex 11-shot plan with tight margins, and on theseven-month follow-up there are alreadysigns of shrinkage and necrosis of thetumor. She is doing great.

Craniopharyngioma – Case Number 1

Astrocytoma – Case Number 2


A bright nine-year-old boy presentedwith symptoms of elevated intracranialpressure and gait disturbance and failureto thrive in March of 1995. The originalsurgery was aborted by the surgeonbecause the tumor felt “like a piece ofwood.” In a second operation two yearslater, the surgeon was only able to per-form a biopsy. He underwent 14 monthsof chemotherapy but no XRT (externalbeam radiation therapy). After a thirdcraniotomy with similar dismal results,the patient was referred by his pediatricneurosurgeon who felt that the tumormight be managed with Gamma Knife.In March 1999 the patient underwent acomplex Gamma Knife treatment involv-ing multiple isocenters for precise con-formal planning. His nearly one- yearfollow-up MRI images are seen below,with a near miraculous result. Had it notbeen for the educated referring neurosur-geon the child would not have made it toradiosurgical treatment.

A lot has been said about the deadlybrainstem gliomas. Open craniotomy forthese tumors can be performed if thetumor does not completely involve thebrainstem, but it is never enough.Because of the involvement of the impor-tant brainstem, average life expectancy ison the order of only a few months. Wehave now treated a number of patientswith both low grade astrocytomas andanaplastic and the higher grade astrocy-tomas with astounding results. Figure 4 isan eight-month follow-up of a 10-year-oldboy treated with surgery and GammaKnife radiosurgery. He is currentlysteroid-dependent, but his tumor is shrink-ing. This is one of the first times this hasbeen attempted, and the results arepromising.

Gliosarcoma – Case Number 3

Brainstem Glioma – Case Number 4


Editor ’s Note: The diagnosis ofGlioblastoma Multiform has always beenconsidered a death sentence. Patientsare routinely told that they have six totwelve months to live. However, asCharlie has found out, after the initialtreatments and the side effects, life doesgo on. Charlie and Joanne aggressivelysought all treatment modalities, surgery,chemotherapy, radiation therapy andradiosurgery with the Gamma Knife.Research is now suggesting that thosewhose diagnosis is timely and whoreceive adjunct treatments, may survivewith quality of life and minimal effects.We believe that the ‘spirit’ of Charlie andJoanne has also promoted his well being.Charlie and Joanne have learned toovercome the difficulties and to move onwith life. We are pleased to update theirstory for those of you who have repeated-ly wanted to know how they are doing.

Charlie is a familiar sight around hisneighborhood inMarmora, New Jersey,USA. Riding his elec-tric scooter with hisgolden retriever com-panion dog at his side,he runs errands and doeschores around the house.

This 61-year-old former administratoris no quitter. Not even the “tumorstroke” could stop him.

Sometime in 1990, Charlie startedexperiencing focal seizures in his rightarm. “It would take on a life of its own,flailing,” says his wife, Joannne.

Charlie worked as a school monitorfor the New Jersey Department ofEducation and was involved in ratingschool districts. He drove 75 miles fromhis home to his office in the morning and75 miles back in the evening. He startedhaving seizures in his right arm duringhis commute.

“I would just get over to the side ofthe road and stop and wait till it passed,”Charlie recalls. “It was a pain in theneck. It was scary.”

“We thought it was a muscular thing,”says Joanne. “His cousin, a nurse, rec-ommended a neurologist.” This doctorthought Charlie had meningioma, abenign tumor on the protective coveringsof the brain. “The neurologist said 90percent of the time, it’s benign and in alittle sac and they pop them out,” Joannesays.

Charlie had a craniotomy in early

month,” Joanne says. “He was on med-ication and he kept working through this.My husband has an extremely positiveattitude.”

When New Jersey offered an earlyretirement program that year, Charlietook it.

By January 1992, a year after thecranitotomy, Charlie started to sufferseizures again and his right arm and legwere weak. By June, he couldn’t usethem. MRIs showed the tumor wasgrowing.

Their doctors had given them nohope, Joanne says. They had not evenarranged physical therapy for Charlie.“With prayers to God, we were led to theright doctors,” she says.

Charlie and his dog.

1991. Instead of a meningioma, doctorsfound a glioblastoma - fast-growing,highly malignant brain tumor - on theleft side of his cerebral cortex. It was3.5 to 4 centimeters in size and had ten-tacles.

“They did a biopsy, sewed him backup (with more than 100 stitches) andrecommended radiation,” Joanne says.

“It pretty much had a negative prog-nosis. Radiation was a shot in the dark.They were hoping that would stall the(tumor’s) growth.”

After seven weeks of radiation treat-ment, Charlie’s glioblastoma shrank to 2cms.

“Right after the surgery, he had a lotof seizures but they stopped within a

Continued on page 6

GLIOBLASTOMA - 10 YEARS LATER


They went to the University ofPittsburgh Medical Center in October1992. With his right side paralyzed,Charlie was in a wheelchair. Dr.Douglas Kondziolka, stereotactic neuro-surgeon at Pittsburgh, asked Charlie,“What do you want us to do?” Charliesaid he just wanted to “live as normal alife as possible.” Dr. Kondziolka saidthis was also his goal.

Doctors at Pittsburgh found thatCharlie had 4 cms of scar tissue from thebrain surgery. They recommendedexperimental chemotherapy treatment -BCNU and Cisplatin delivered intra-venously continuously for three days -beginning in January 1993. The couplespent one week a month in Pittsburgh forfour straight months. Today, Joannejokes about how they spent the early1993 holidays in the Steel City - theiranniversary in January, Valentine’s Dayin February, St. Patrick’s Day in Marchand Easter in April.

Each time, Charlie receivedchemotherapy for 72 hours at PittsburghCancer Institute. “We’re 10 hours fromPittsburgh (driving time) so we wouldfly there,” Joanne says. “Then he wouldneed a couple of days to get back on hisfeet” before they could fly back to NewJersey.

The experience was “unbelievable,”Charlie says. He used meditation, whichhe taught himself, to make it through thetreatment. “It works,” he says.

While he was being treated, Joannestayed at a Family House facility. Thisnon-profit organization provides an inex-pensive “home away from home” forpatients with life-threatening illnessesand their families. Joanne praises theprogram and its volunteers. “They arelife savers for anyone who has to travelfrom a distance to Pittsburgh for treat-ments.”

The goal of the chemotherapy was toshrink Charlie’s tumor down enough forthe Gamma Knife.

“He usually had one day of upsetstomach afterward but they gave him alot of medication to combat that,”Joanne recalls. “By the second week athome, he was feeling weak and tired,”but still kept up with his physicaltherapy. “By the time he was feelingwell again, it was time to go back toPittsburgh” for the next round of chemo.

In the meantime, a visiting nurse sawCharlie three times a week. He was on

When he can, Charlie works three days aweek for their county diagnostic trainingcenter. “It’s a boost to his morale,”Joanne says. The center providesemployment opportunities for peoplewith disabilities.

In late1998, Charlie needed dentalsurgery. His physician recommended aquick hospitalization to prevent prob-lems. However, Charlie contracted aninfection, and then developed blood clotsin his leg and had to have a vascularbypass surgery on his leg. After thesurgery, Charlie was admitted to a rehabfacility for five months to regain the useof his leg. Complications continuedwhen he had to deal with a pressurewound from the knee stabilizer he wasrequired to wear. Through all of thisJoanne says that Charlie maintained agood attitude and a great sense of humor.It was especially hard on her whenCharlie was not at home.

Charlie’s constant companion, hisgolden retriever, Heather, had to be ‘putdown’ as she was found to have had can-cer throughout her body. This was espe-cially hard for the McGuires. They nowhave a new golden retriever named‘Sweet Dreams’ which they lovingly call‘Sweety.’ Sweety roams the neighbor-hood everyday with Charlie who uses hisscooter. Joanne states that Sweety isquite a hand full at a year and a half ofage and is very playful.

Prior to 1990, Charlie was very activein his church and the community. Heserved as an emergency medical techni-cian and was in the National Guard. Sotumor or no tumor, “he was absolutelydetermined to get out,” Joanne says.

“Everybody in our town knows him.He goes everywhere with the scooter andthe dog.”

Charlie adds: “It’s a nice feeling. Theneighbors are a big help.”

He still does what he can, rakingleaves and taking out the garbage one-handed.

Charlie and Joanne go out to eat, havefriends over and travel to Florida onvacation. They have two grown chil-dren: Jeff, 34 and Julie 28.

“It’s a good life,” Charlie says. “I’vebeen lucky to have Joanne.”

For her part, Joanne says, “He’s amore positive person than I have everbeen so I’ve learned a lot from him. Wedon’t look at this negatively at all. Thereare no pity parties here.

“all kinds of minerals and vitamins.”“God was with us,” Joanne believes.

“He was injecting strength into us eachtime.”

At the end of the third session,Charlie says he knew the treatment hadworked. His body felt different and “Ihad a feeling that it was over.”

In April, tests showed the experimen-tal chemotherapy had indeed done itsjob: Charlie’s tumor had shrunk enoughthat he could have the Gamma Knife.He was treated in May 1993.

Since then, MRIs have shown no sig-nificant growth in Charlies’ glioblas-toma. He has the MRI done near hishome in New Jersey and it’s sent imme-diately to Pittsburgh.

“Dr. Kondziolka and his staff havebeen always kind, caring and extremelysensitive to our needs through all theseyears,” Joanne says. “They truly are aclass act,” and continue to followCharlie even now 10 years later.

His right side is still partially para-lyzed, but Charlie uses a partial walkerand his electric scooter to get around.He continues to work in physical therapyto keep his right side active, moving andin good shape.

Besides physical therapy, Charlie

works on exercises to assist his memoryin recalling letters and numbers.

“You have to keep working on it andthe skills return,” Joanne says. “He readsa lot. But writing is a problem.”

Charlie’s speech was also affected.He can formulate ideas in his mind butcan’t always express them, or the wordscome out backwards.

“It’s very frustrating because heknows what his mouth wants to say buthe can’t always say it,” Joanne says.

Despite his physical problems, shesays, “he has good quality of life.”

GlioblastomaContinued from page 5

“If at first the ideais not absurd,then there is

no hope for it.”

– Albert Einstein


Magnetic resonance imaging (MRI orMR), in contrast to other types of imag-ing modalities for brain tumors (PETscans, CT scans and angiography), uti-lizes no ionizing radiation to acquire thedata for the images. Instead, MR utilizesmagnetic fields and radio frequencies(radio waves). Tissues in the body arecomposed of a large portion of water.

One of the buildingblocks of water is anelement calledhydrogen, and thenuclei (or centers) ofhydrogen containprotons. Normallyprotons are in con-

stant motion and randomly aligned.When a magnetic field is applied, theprotons all align and spin in the samedirection. When radio waves are thenapplied, they knock these protons out ofalignment. Once the radio waves areturned off, the protons realign them-selves and emit radio signals. The radiosignals are then transformed by a com-puter into an image. MR can create animage in all three dimensions.

Magnetic strength is measured inunits called “Teslas.” Routine clinicalMR units utilize a magnetic strength of1.5 Tesla. The Ohio State UniversityMedical Center / Arthur James CancerHospital and Richard Solove ResearchInstitute have constructed an ultra highfield MR for clinical use with a strengthof eight Tesla. A 4.2 Tesla unit is opera-tional at Columbia University and aseven Tesla MR is under development atthe University of Minnesota. With thesehigh field MR units, more detail of thebrain is possible. A temporary sideeffect of being imaged at these highstrengths is vertigo (dizziness). It iscaused by stimulation of the inner ear

with motion and ceases after beingremoved from the magnet.

The first clinical application of thismagnet at Ohio State will be the imagingof the most aggressive brain tumor,glioblastoma multiforme, before andafter administration of a radiosensitizercalled Gadolinium Texaphyrin(Pharmacyclics Inc., Sunnyvale CA).This type of tumor can be difficult toimage completely with lower Tesla units.The patient will receive the radiosensi-tizer three hours prior to a Gamma Kniferadiosurgery boost (after five weeks ofconventional radiotherapy). Thepatient’s tumor must be four cm ingreatest dimension and must be one cmfrom the optic chiasm and brainstem. Ifthe tumor becomes four cm afterdebulking surgery, the patient is still eli-gible for the study. Additional informa-tion regarding the GadoliniumTexaphyrin trial, which is sponsored by

the National CancerInstitute, can beobtained by calling1 - 6 1 4 - 2 9 3 - 4 5 6 2 .This high strengthmagnet will also beutilized to imagepatients with multiplesclerosis.Another area ofinvestigation in mag-netic resonanceimaging is calledfunctional MRI.Functional MRI canbe performed with a

1.5 Tesla unit. Signal changes aredetected by alterations in local bloodoxygenation levels. Some accomplish-ments of functional MRI include map-ping areas of the brain responsible forfinger and thumb movements, receptivelanguage, and tinnitus (perception ofsound in the absence of external stimuli).

Dr. John C. Grecula is Assistant Professorof Radiology, College of Medicine, Arthur G.James Cancer Hospital and ResearchInstitute at the The Ohio State University. Hecan be reached by phone at +614-293-8415and by e-mail at [email protected].

The Evolving Role of Magnetic Resonance Imaging in Brain Tumors

Fast FactsRadiosurgery offers many advan-

tages including:

� Requires no overnight hospitalstay or one-day stay.

� Fewer side effects than conven-tional brain surgery.

� No risk of bleeding or infectionand general anesthesia is not nec-essary.

� Results in little or no pain.

� Offers a rapid return to normalactivities without physical thera-py or other rehabilitation.

� Is covered by insurance compa-nies and Medicare.

Dr. Kangarlu and Dr. Grecula

Cross sectional “eight-tesla” image of brain.

she could take her sons to a summer fairin town later that day.

“Kevin came to me and said he had aheadache,” Beth recalls. “I didn’t thinkmuch of it, although he had never com-plained of a headache before. I told himit would go away and to just go liedown.

“He started to cry and said it reallyreally hurt, so I gave him some chil-dren’s Tylenol and told him to lie downon the couch.” A little later, she wentinto the living room to check on him.Kevin said his head hurt terribly andasked his mother if she could lie downtoo and comfort him. In the years since,Beth says, she has regretted telling himthen that she was too busy.

“Before long, he started crying againwith the pain in his head,” she says. “Ithought he was just cranky as it was sucha hot day.”

She took Kevin to his air-conditionedbedroom so he could rest there.

Your Medical Records…The Association assists patients with

insurance denials by writing to insurancecompanies, working with the insurance uti-lization review contact person and the med-ical director.

We provide up-to-date research, contactneurosurgeons and act as a liaison whereneeded between the insurance company, yourtreating site and you. However, you as thepatient play an important part when it comesto obtaining insurance approval for treatment.

Maintaining control of your medicalrecords and their contents is important insecuring further treatment approvals. Medicalrecords are also utilized for employment cri-teria and life and disability insuranceapprovals. Denials of insurance coverage forCanadian and United States citizens aremaintained on a national data base with theMedical Information Bureau (MIB). This is adata base established in 1902 by physiciansto detect fraud when someone applies for life,or disability insurance. The MIB keeps arecord of up to seven years history of anymedical condition significant to health orlongevity.


Additionally, a record of some non-med-ical conditions such as an adverse drivingrecord or participation in hazardous sportsare maintained.

Doctor ’s records may be erroneous,incomplete or both. In any case, however,they are still the only “record” of what hastranspired. A more accurate rendition of whatgoes on in the medical setting should be keptby patients themselves. Patients need to be incontrol of their medical records. Physiciansare busy, distracted and sometimes do notknow what an insurance company is lookingfor.

To maintain your own records, you canbegin by taking notes when you visit yourdoctors and asking for copies of each clinicvisit record generated by the doctor. All doc-uments should be reviewed for accuracy andcompleteness. Patients can request that moreinformation be added to their record or cor-rections be made if they note anything miss-ing or incomplete. Always make sure yourphysical condition and problem weredescribed completely at each visit. Insurancecompanies look for full descriptions of how a

condition affects you, how long it has been aproblem and what non-surgical interventionswere tried.

You can be a powerful force in decisionsmade about your medical care. Accuraterecords may establish medical necessitywhen a physician may be reluctant to declareit. Well maintained records serve to increasethe likelihood of the medical consumer pre-vailing in a dispute with the doctor or insur-ance company.

If you are having problems with insuranceapprovals, you should review your medicalrecords yourself. Ask for information to bemodified or added to the record if needed.Also, consider requesting your record fromMIB (for a small fee) and request any correc-tions that may be needed.

To request your MIB records:In USA: MIB, PO. Box 105, Essex Station,

Boston, MA 02112, orphone 1-617-420-3660.

In Canada: MIB, 330 University Avenue, Toronto,Ontario, Canada M5G 1R7, orphone 1-416-597-0590.

AVM - 10 Years LaterEditor’s Note: We first wrote about Kevin in1998. His story has helped many parents insimilar situations. We are publishing Kevin’sstory again with updates for those who keepasking about Kevin.

Beth and Dave ofPennsylvania, USA,have two sons - Eric,17, and Kevin, whojust turned 14 onMarch 21, 2000.

Both parents workat Latrobe AreaHospital, where Beth

is a nurse and David is a mental healthaide.

Their lives “changed dramatically” onJuly 18, 1990, when a large arteriove-nous malformation (AVM) that Kevinapparently has had since birth suddenlymanifested itself.

As Beth relates, the two boys, then 7and 4, were playing in the living roomwhile she was working in the kitchen.She was trying to finish her chores so

“I was feeling very uneasy about himand asked his brother, Eric, to go andcheck on him while I made them someKool-aid,” Beth relates. “The next thingI heard was Eric coming down the hallshouting. ‘Emergency! Emergency!Kevin threw up!’ I ran back to his roomand found him only responsive to painfulstimuli.”

As a nurse, she immediately realizedthat something had increased theintracranial pressure in Kevin’s brain.She told Eric to run outside and getDave, who was working in the garden.Dave picked Kevin up and started toshake the boy in an attempt to wake himup. Beth told him to stop. She suspect-ed Kevin was bleeding inside his head.

Since the family lives only about onemile from a hospital, they decided todrive Kevin there instead of waiting foran ambulance.

A CAT scan at the hospital revealed

Continued on page 10

Your Medical Records…


Before calling a treating site, it willbe helpful if you have the followinginformation available:

� Your diagnosis as stated by yourphysician.

� A list of all previous treatments andtheir dates.

Include surgery; types of chemother-apy (chemical and doses); radiationtherapy (record of total dose received);and the physician and site where youreceived them.

� Names, addresses and phone num-bers of all treating physicians andinstitutions. Include endocrine labstudies within the past six months.

� Dates and places where all scans orangiograms were completed. Youwill probably need copies of themost recent scans.

� Current symptoms and problems,especially those related to memory,speech and communication, abilityto care for self, work level, person-ality changes, physical mobility andmental comprehension.

� Health insurance card(s).

� A list of all other medical conditionssuch as heart or thyroid problems,diabetes, high blood pressure, etc.

� A primary contact person (otherthan yourself) with address andphone number.

Writing all of this information onpaper will enable you to mail or fax itimmediately to a medical professionalor treatment facility.

WWW. IRSA. ORG

Have You Peeked?We are up and running – with more to be done. Send your comments and suggestions to us

by email. Visit the patient forum today.

IRSA

Have information on hand before you call


Kevin had indeed suffered a large hem-orrhage - from what, doctors couldn’ttell. They thought it was probably ananeurysm.

“Maybe it was just mother’s intuition,but I suspected an AVM,” Beth says.

Because Kevin was so young and hiscondition was so serious, he was flownby helicopter to Children’s Hospital inPittsburgh. The family drove there intheir car.

By the time they arrived, Kevin wasalready in the operating room getting anextra-ventricular drain to remove theblood and decrease the intracranial pres-sure. Doctors had also done anangiogram, which showed the hemor-rhage (a major stroke) was caused by anAVM in the basal ganglia - nerve clus-ters deep within the cerebrum above thebrain stem.

“There was not much hope for Kevinthat night and we were told to preparefor the worst,” Beth recalls. “The doc-tors told us he had no brain stem reflexeson admission.” But overnight, Kevinstarted to show some improvement. “Tothe amazement of his doctors and nurses,by the sixth day, he was weaned fromthe ventilator,” transferred out of theintensive care unit and moved to a neu-rosurgical floor, Beth says.

She knew they had a long road aheadof them. Kevin’s left side was weak andhe suffered short-term memory loss andsome expressive aphasia (an inability toexpress himself verbally) and facialdroop.

However, his mother notes, “We werejust so thankful that he was alive.”

The neurosurgeon told the family thatbecause of its size and location, the onlyway to treat Kevin’s AVM was withradiosurgery.

The couple met with Dr. Lunsford atthe University of Pittsburgh. Heexplained how his radiosurgery machineworked and what the procedure wouldinvolve. Kevin could not be treated untilmost of the blood from the hemorrhagehad been absorbed.

In the meantime, he was transferredback to his local Hospital for physicaland speech therapies. He had to regainhis sense of balance and learn how towalk again.

Finally, after being hospitalized for40 days, Kevin went home. He was stillvery weak and had ongoing therapy asan outpatient.

“Fatigue set in and Dave and I hadfrequent little arguments and misunder-standings,” Beth relates. “I was unableto eat or sleep and lost a lot of weight. Isoon realized I needed to enlist the help

of our Mental Health Unit if the familywere to get back on track.”

Kevin was admitted toChildren’s Hospital October 4,1990, for an MRI and bloodwork. He was treated radiosurgi-cally by Dr. Lunsford using theGamma Knife the next day.General anesthesia was usedbecause he was so young. Thewhole procedure took about sixhours, Beth recalls.

“When Kevin came back tohis room, he only sufferedsome mild nausea and vomit-ing.” she says. “He had nopain or headache” and wasable to go home the nextday.

“We had yearly follow-upswith Dr. Lunsford, consisting of an MRIand neurological exam,” Beth says.

“Kevin was doing well,” she adds.His facial droop had gone away as didhis left side weakness. He was left-handed prior to the hemorrhage, but wasnow using his right hand for most every-

thing. He was in first grade and doingall the things any 7-year-old would do”.

But tragedy struck again four yearslater. It was a cold winter day and theboys were playing outside in the snowwith their radio-controlled bulldozer.Beth told Kevin and Eric not to stay outtoo long and promised to make hotchocolate for them when they came in.

“Kevin was the first to come bound-ing in the back door, taking off his coatand yelling, ‘Hot chocolate, Mom!’”Beth relates. “He sat down at the tableand started to sip his cocoa. I noticed hewas rubbing the back of his neck. Hesaid, ‘I’ve got a stiff neck, Mom.’”

Fear came over her and Beth’s stom-ach churned. Kevin started to hold theback of his head and said he was gettinga headache.

“I knew what was happening but did-n’t want to believe it,” Beth says. “I wasnauseated and shaking. I had to quicklycompose myself. I told Dave we weregoing to take Kevin over to the emer-gency room.” As Dave put Kevin’s shoeson, the boy turned pale and started tovomit. Beth called out the window forEric, telling him Kevin was sick againand had to be rushed to the hospital.

“Kevin’s level of consciousness wasdecreasing rapidly as we sped over to the

hospital,” Beth says. She told the emer-gency room physician what was wrong.

Kevin was placed on basiclife support and

flown toC h i l d r e n ’ sHospital forfurther treat-ment.This timearound, whileKevin’s neuro-logical conditions t e a d i l yimproved duringhis hospital stay,he suffered severalinfections, includ-ing ones affectinghis spinal fluid andblood.But Kevin “rallied

through all the adversities,” Beth says,and he wasdischarged on his eighth birthday,March 21, 1994.

Since this was Kevin’s second majorhemorrhage, Dr. Lunsford again consult-ed with a physician who specialized inresecting difficult AVMs. However, thisspecialist urged the family to pursue fur-ther radiosurgery for Kevin instead.Brain surgery, they were told, wouldlikely leave Kevin with permanentdeficits, including probable paralysis.

So he was treated a second time withGamma Knife in May, 1994.

In October 1996, he had a follow-upangiogram that showed the AVM hadshrunk and there was “significant reduc-tion” in its blood flow.

Today, Kevin is a healthy, happy 14year-old who is developing normallywith a residual mild to moderate left sidehemiparesis (muscular weakness or par-tial paralysis), mildly affecting his arm.He has undergone two tendon transfersin his left foot to correct a type of footdrop he developed after the second hem-orrhage and surgery to his left arm. HisDad says that you can hardly tell therewas a problem with his foot.

Kevin has some mild spatial percep-tion problems as a result of his damagefrom his original stroke. This does notaffect his love of computers and music.He is a great fan of Britney Spears!While restricted from contact sports, hestill loves fishing and camping. He digshis own bait and enjoys walking in thewoods.

“We are forever thankful for wonder-ful doctors and nurses who cared for himand the technology,” Beth says.“Without these things, Kevin may nothave had a chance for a normal life.”His father, Dave, says “he is a great kid,who is never a behavior problem.”

AVMContinued from page 8

“We are continually faced by greatopportunities brilliantly

disguised as insolvable problems.”

– Lee Iacocca


anotherperspectiveVolume 5, Number 1

The International Radiosurgery SupportAssociation is an independent organiza-tion dedicated to providing informationthrough personal contact and educationalmaterials, encouraging research and pro-moting patient options about radiosurgerytreatment and its availability.

❦ Rebecca L. EmerickManaging Director

❦ Tonya K. LedbetterEditor

❦ Tomasz HelenowskiMedical-Technical AdvisorChicago, IL USA

ANOTHER PERSPECTIVE (ISSN 1086-427X), IRSA’s support publication, ispublished quarterly by the InternationalRadiosurgery Support Association. Businessoffice located in Harrisburg, PA. Contents copy-right 2000 by IRSA. All rights reserved. Call(+717) 671-1701 for subscription information.

DisclaimerThis publication is not intended as a

substitute for professional medical adviceand does not address specific treatmentsor conditions specific to any patient. Allhealth and treatment decisions must bemade in consultation with yourphysician(s), utilizing your specificmedical information.

❦ Alan AppleyOrlando, FL USA

❦ Ronald BrismanNew York, NY USA

❦ Lawrence ChinBaltimore, MD USA

❦ Christopher DumaNewport Beach, CA USA

❦ Michael S. EdwardsSacramento, CA USA

❦ Maheep Singh GaurNew Delhi, India

❦ Deane JacquesLos Angeles, CA USA

❦ Jonathan KniselyNew Haven, CT USA

❦ Douglas KondziolkaPittsburgh, PA USA

❦ Edward R. Laws Jr.Charlottesville, Virginia, USA

❦ Christer LindquistLondon, England UK

❦ L. Dade LunsfordPittsburgh, PA USA

❦ Georg NorénProvidence, RI USA

❦ Kenneth OttLa Jolla, CA USA

❦ Swaid N. SwaidBirmingham, AL USA

❦ Harish ThakrarChicago, IL USA

❦ Aizik L. WolfCoral Gables, FL USA

❦ Ronald YoungLos Angeles, CA USASeattle, WA USA

Contributing Authors and Medical Advisors:

Acoustic NeuromaContinued from page 1

Until December 1999! My husbandJeff experienced a sharp hearing reduc-tion in his right ear and went to his ear,nose & throat doctor for a check-up. Itwasn’t a cold or stuffed ear, and thehearing test indicated that an MRI wasrequired to rule out an acoustic neuroma.I’ll let Jeff tell the rest of the story.

Jeff:I was unconcerned about my hearing

loss in the early days. I participated inMarjie’s discovery of her acoustic neuro-ma and subsequent search for the appro-priate medical solution. The odds ofhaving an acoustic neuroma are one in100,000. I had a COLD with a stuffedear; the probability of us both havingthis tumor were incalculable. I receivedthe results of the MRI in mid-December:I had an acoustic neuroma in my rightear, .8 centimeter by 1.2 cm centimeters.

I remember the fear and concern weboth had when Marjie found out abouther acoustic neuroma. There was somuch we didn’t know, including the wis-dom of her decision to choose radio-surgery. This time was very different.Marjie took control of my medical life. Ireceived the news approximatelyDecember 20th and Marjie scheduled

my appointment for radiosurgery withDr. Lunsford on January 21, 2000.Actually the month passed in a ratheruneventful manner. There were no ques-tions or uncertainty. We both knew thiswas the right decision.

We arrived in Pittsburgh on January20th for a consultation and I had mytreatment the following morning. TheGamma Knife team was extraordinarilyprofessional, reassuring and caring.Everything went very smoothly and Iwas released from the hospital beforenoon the day of the surgery. I felt greatand wanted to spend the afternoon sight-seeing in Pittsburgh. “Doc” Marjie tookme back to the hotel for an afternoon ofrest, ice packs and bandages. I did notexperience any swelling or headaches,and on Saturday morning we drove backto Columbus. Two days later I joggedfive miles and then worked out withweights.

We are both thankful that we live in atime in which medical science hasadvanced to a point where diseases suchas ours can be discovered and “cured”without invasive treatment. Moreimportantly, we look forward to the daywhen referring doctors will cast asidetheir biases toward surgery and informnewly diagnosed patients of this spectac-ular option.

Research in ProgressThe following exerts were presented at the 10th InternationalMeeting of the Leksell Gamma Knife® Surgery Society, April, 2000,Squaw Valley, California.

Obesity:Researchers at the University of Virginia treated obesity in rats with Gamma Knife radio-surgery. They irradiated the hypothalamus, which controls body weight, of obese rats.Rats treated with two doses of 40 Gy experienced significant weight reductions beginningnine weeks after treatment and lasting until the end of the study, at 34 weeks.–also presented at the 1999 annual meeting of the Congress of Neurological Surgeons inBoston, Mass.Pain:Researchers at Yale University School of Medicine treated three patients with intractablepain of benign origin associated with monopolar depression with Gamma Knife radio-surgery. A closed stereotactic cingulotomy was performed on each with doses of 140 Gyfor two patients and 180 Gy for the remaining patient. To date only the patient receiving180 Gy has benefited from the intervention.Glaucoma:Twelve patients were treated with Gamma Knife radiosurgery at the Hospital Na Homolee,Prague, Czech Republic, for advanced stages of glaucoma (blind or very diminished visionwith pain). All patients received alleviation of ocular pain and the intraocular pressure wasreduced or normalized. There were no early side effects. Dosages in the first group were28 Gy with 14 Gy to the 50% isodose, and for the second group 40 Gy with 20 Gy to the50% isodose curve.

Internet: www.irsa.orgEmail: [email protected]

ADDRESS SERVICE REQUESTED

International Radiosurgery Support AssociationDelivery: 3540 N. Progress, S. 207, Harrisburg, PA 17110 USAMailing: P.O. Box 60950, Harrisburg, PA 17106-0950 USAPhone: +(717) 671-1701 Fax: +(717) 671-1703

An MRI (magnetic resonance imag-ing) is a diagnostic technique that allowsus to look inside the body without usingX-rays. The pictures are so precise thatdoctors can often get as much informa-tion from an MRI as they would fromlooking directly at the brain tissue itself.

A large magnet, radio waves and acomputer are used to make the MRI pic-tures. The magnet creates a strong,steady magnetic field that causes thebody’s protons, which normally spin ran-domly, to line up together and spin in thesame direction.

A radio frequency signal is beamedinto the magnetic field. The signalmakes the protons move out of align-ment. When it stops, the protons fallback into their aligned position andrelease energy. A receiver measures theenergy released by the disturbed protonsand the time it takes for them to return totheir aligned position with the magnet.These measurements indicate the type oftissue that’s been scanned and its condi-tion. The computer takes this informa-tion and constructs an image on a TVscreen. These images can be recorded onfilm or magnetic tape for a permanentrecord.

Unlike X-rays, the magnetic fieldsused in an MRI aren’t known to beharmful to us. We do not know if thereare short or long-term side effects at thistime.

During the scanning, you may hearsome loud thumping sounds. With newer

MRI equipment, there is only a veryminor sound and you can watch videosor listen to music. Credit cards andwatches should not be taken into thescanner as information will be erasedand batteries drained.

The MRI scans through bone whileclearly defining soft tissue. The imagesare especially valuable for diagnosis oftumors, abnormal fluid, stroke, cancerand traumatic injuries. While there is alarge “bore” MRI available for thosewho do not like small places, technicianssay the small “bore” gives the best defin-

ition and clear outline when looking atbrain tumors and lesions. Contrast agents(dyes) make many tumors and lesionseven clearer.

For the best results with your disor-der, always schedule your MRI asrequested by your doctor. Early detectionof changes in any condition are vital toearly treatment and eventual survival.

Editor’s note: On a molecular level, all things– people, plants, rocks, etc. – are composed ofatoms. These in turn include even tinier particlessuch as protons.

More About MRIs

Here are questions to askwhen seeking treatment

The Association encourages patientsseeking treatment to ask the follow-ing questions:

� Will a neurosurgeon direct mytreating team?

� Does this facility use radio-surgery to treat at least 75patients for brain tumors anddisorders annually?

� Has your equipment been modi-fied in its targeting ability sinceit was manufactured?

� Are you a participating memberof the International RadiosurgerySupport Association?

acoustic neuroma… all in the family - irsa have now treated a number of patients with both low...

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