{"id":20123,"date":"2022-05-10T14:34:33","date_gmt":"2022-05-10T12:34:33","guid":{"rendered":"https:\/\/lifelonghearing.com\/?p=20123"},"modified":"2025-02-17T15:20:09","modified_gmt":"2025-02-17T15:20:09","slug":"tumori-benigne-pot-cauza-probleme-maligne","status":"publish","type":"post","link":"https:\/\/lifelonghearing.com\/ro\/tumori-benigne-pot-cauza-probleme-maligne\/","title":{"rendered":"Tumori benigne pot cauza probleme maligne"},"content":{"rendered":"

Implantul de trunchi cerebral permite recuperarea auzului dup\u0103 un neurom acustic<\/h1><\/div>

“Boala rar\u0103” numit\u0103 neurofibromatoz\u0103 cauzeaz\u0103 tumori nervoase benigne care pot afecta auzul. Ast\u0103zi, Elena-Daniela Nistor poate auzi din nou datorit\u0103 unui implant de trunchi cerebral: “\u0218tiu c\u00e2t de greu mi-a fost s\u0103 g\u0103sesc informa\u021biile potrivite \u0219i a\u0219 vrea s\u0103 schimb acest lucru”.<\/strong><\/p>\n<\/div>

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2015 nu a fost un an bun pentru Elena-Daniela Nistor din Gala\u021bi, Romania. “\u00cen acea perioad\u0103, f\u0103ceam teste oftalmologice \u0219i medicul meu a observat ceva diferit la nivelul nervului optic, al fundului de ochi, a\u0219a c\u0103 am f\u0103cut un RMN”, o tomografie prin rezonan\u021b\u0103 magnetic\u0103, “\u0219i am aflat c\u0103 am neurofibromatoz\u0103 tip 2”. O descoperire care a impactat treptat via\u021ba femeii \u00een v\u00e2rst\u0103 de atunci 32 de ani.<\/p>\n

Neurofibromatoza (sau NF) este o muta\u021bie genetic\u0103 care este mo\u0219tenit\u0103 \u00een aproape jum\u0103tate din cazuri. \u00cen cealalt\u0103 jum\u0103tate din cazuri, aceast\u0103 muta\u021bie este “dob\u00e2ndit\u0103” sau, cu alte cuvinte, “spontan\u0103”. Cromozomul responsabil a fost modificat \u00een timpul dezvolt\u0103rii embrionare. \u00cen cazul muta\u021biei genetice dob\u00e2ndite, nu toate celulele organismului pot fi afectate. Acest lucru \u00eenseamn\u0103 c\u0103 celulele din alte p\u0103r\u021bi ale corpului ar putea r\u0103m\u00e2ne neschimbate.<\/p>\n

Descris\u0103 pentru prima dat\u0103 \u00een 1882 de c\u0103tre medicul german Friedrich Daniel von Recklinghausen, neurofibromatoza face parte din a\u0219a-numitele “boli rare”. Acestea sunt boli care fie pun via\u021ba \u00een pericol, fie sunt cronice \u0219i afecteaz\u0103 cel mult 5 din 10.000 de persoane. In prezent sunt cunoscute trei tipuri diferite de neurofibromatoz\u0103: NF1, NF2 \u0219i Schwannomatoza. \u00cen cazul fiec\u0103reia dintre aceste boli, o gen\u0103 diferit\u0103 este afectat\u0103. Toate aceste trei tipuri de NF au \u00een comun tendin\u021ba de a forma tumori la nivelul sistemului nervos.<\/p>\n

Cum neurofibromatoza \u00ee\u021bi poate schimba via\u021ba<\/h2>\n

Cea mai comun\u0103 form\u0103 de NF, dintre cele trei tipuri existente, este NF1 sau Morbus Recklinghaussen: una din aproximativ trei mii de persoane este afectat\u0103. Simptomele tipice ini\u021biale sunt pete pigmentate pe piele, numite pete “caf\u00e9 au lait”, sau pistrui \u00een zona axilar\u0103 sau inghinal\u0103. NF1 poate cauza multe probleme, cum ar fi tumori \u00een \u00eentregul sistem nervos – de la nervul optic la m\u0103duva spin\u0103rii – \u0219i curburi ale coloanei vertebrale. Alte probleme includ o statur\u0103 mic\u0103, hipertensiune, probleme cognitive \u0219i psihosociale \u0219i dureri cronice. Pe de alt\u0103 parte, NF3 sau schwannomatoza se rezum\u0103 la formarea de tumori benigne; cu toate acestea, ele pot provoca adesea dureri mari \u0219i pot duce la probleme ulterioare.<\/p>\n

NF2 sau neurofibromatoza central\u0103 creeaz\u0103 tumori pe structurile nervoase centrale. Opacifierea cristalinului, o form\u0103 special\u0103 de cataract\u0103, d\u0103uneaz\u0103 adesea vederea persoanelor afectate. De asemenea, sunt frecvente petele de pigmentare, al\u0103turi de simptomele asociate, cum ar fi durerile de cap sau grea\u021ba.<\/p>\n

Cu toate acestea, \u00een cazul pacien\u021bilor cu NF2, focusul sunt tumorile benigne de pe cel de-al optulea nerv cranian, care este esen\u021bial pentru auz \u0219i echilibru. Aceste tumori se numesc schwanomuri vestibulare sau neurome acustice. Ele apar frecvent pe ambele p\u0103r\u021bi.<\/p>\n

“Nu mai am lacrimi!”<\/h2>\n

\"\"“Am \u00eenceput s\u0103-mi pierd auzul \u00een 2007 – sau cel pu\u021bin atunci am \u00eenceput s\u0103 \u00eemi dau seama. \u0218i eram ame\u021bit\u0103 \u0219i obosit\u0103. Dar am dat vina pe stres.” Elena-Daniela Nistor lucreaz\u0103 \u00een echipa de marketing a unei agen\u021bii de turism, a\u0219a c\u0103 lucrurile pot deveni uneori stresante. Treptat, auzul ei s-a deteriorat. Dar abia opt ani mai t\u00e2rziu, c\u00e2nd oftalmologul ei a observat o schimbare ciudat\u0103 a ochiului ei \u0219i a solicitat un RMN, s-a determinat diagnosticul de neurofibromatoz\u0103 de tip 2.<\/p>\n

“Am avut opera\u021bii dificile. Un neurinom de pe nervul auditiv drept a fost \u00eendep\u0103rtat. Dar deja crescuse at\u00e2t de mult \u00een jurul nervului \u00eenc\u00e2t acesta nu mai era func\u021bional. Nu auzeam pe partea dreapt\u0103, nu aveam un echilibru bun, nu aveam nici lacrimi, nici secre\u021bie nazal\u0103, nici saliv\u0103.”<\/p>\n

\u00cen urm\u0103torii doi ani, \u0219i-a pierdut \u0219i auzul pe partea st\u00e2ng\u0103, r\u0103m\u00e2n\u00e2nd complet surd\u0103. “Pot spune c\u0103 NF2 m-a \u00eenv\u0103\u021bat s\u0103 am o via\u021b\u0103 complet diferit\u0103. Am \u00eenv\u0103\u021bat s\u0103 lucrez baz\u00e2ndu-m\u0103 pe vedere \u0219i nu pe auz. Am \u00eenv\u0103\u021bat s\u0103 citesc pe buze”. A fost o provocare nu numai pentru ea, ci \u0219i pentru cei din jurul ei, \u00een special pentru familia ei.<\/p>\n

Benign nu \u00eenseamn\u0103 \u00eentotdeauna inofensiv<\/h2>\n

C\u00e2nd vine vorba de tumorile benigne de pe nervul auditiv, uneori este de ajuns doar s\u0103 le observ\u0103m. Dar atunci c\u00e2nd un neurinom exercit\u0103 presiune asupra nervului sau cre\u0219te \u00een jurul nervului, acesta poate provoca diverse complica\u021bii. Acesta a fost \u0219i cazul Elenei Nistor: a avut \u021biuituri \u00een urechi, probleme de echilibru \u0219i pierdere a auzului. Totodat\u0103, este posibil\u0103 \u0219i paralizia nervului facial \u00eenso\u021bit\u0103 de afectarea mu\u0219chilor de mimic\u0103.<\/p>\n

Prof. Dr. Christoph Arnoldner, \u0219ef adjunct al Clinicii Universitare ORL din Viena \u0219i \u0219ef al Laboratorului de Cercetare a Urechii Interne, este un specialist \u00een domeniu. El consider\u0103 c\u0103 NF2 este cauza problemelor de auz \u00een acele cazuri \u00een care \u00een\u021belegerea vorbirii este mai afectat\u0103 dec\u00e2t percep\u021bia sunetelor. De obicei, tumoarea este \u00eendep\u0103rtat\u0103 chirurgical. El spune c\u0103 acest lucru reprezint\u0103 adesea o provocare, deoarece, \u00een cazul unei leziuni, expresiile faciale pot fi afectate permanent, pe l\u00e2ng\u0103 problemele de auz \u0219i de echilibru. Prin urmare, el subliniaz\u0103 importan\u021ba diagnostic\u0103rii \u0219i interven\u021biei din timp: “atunci reu\u0219im adesea \u00een mare parte s\u0103 salv\u0103m nervul”.<\/p>\n

Sim\u021bul auzului se poate recupera!<\/h2>\n

Chiar dac\u0103 tumoarea poate fi \u00eendep\u0103rtat\u0103 f\u0103r\u0103 a deteriora nervul, deseori hipoacuzia este inevitabil\u0103. Prof. Arnolder, specialist ORL, explic\u0103: “\u00cen prezent, se presupune c\u0103 tumorile secret\u0103 proteine \u0219i alte substan\u021be \u0219i deterioreaz\u0103 astfel cohleea.” Sim\u021bul auzului este primul \u0219i, p\u00e2n\u0103 \u00een prezent, singurul organ uman de sim\u021b care poate fi replicat \u0219i \u00eenlocuit \u00een mod artificial. \u00cen Rom\u00e2nia, implanturile cohleare sunt disponibile pentru adul\u021bii care sufer\u0103 de hipoacuzie din anul 2000. De c\u00e2\u021biva ani \u00eencoace, sunt folosite chiar \u0219i atunci c\u00e2nd hipoacuzia afecteaz\u0103 doar o parte, iar persoana afectat\u0103 \u00eenc\u0103 poate auzi cu cealalt\u0103 parte. Deoarece pacien\u021bii cu NF2 au o probabilitate mare de a dezvolta un neurinom pe partea cealalt\u0103, implanturile sunt recomandate \u00een mod special chiar \u0219i \u00een cazurile de hipoacuzie unilateral\u0103.<\/p>\n

Cu toate acestea, o condi\u021bie prealabil\u0103 pentru aceasta este func\u021bionarea normal\u0103 a nervului auditiv. \u00cen cazul \u00een care acest lucru nu este posibil din cauza unei tumori sau a unei interven\u021bii chirurgicale, cum este cazul lui Elena-Daniela Nistor, exist\u0103 op\u021biunea unui implant de trunchi cerebral, cunoscut \u0219i sub numele de \u201eAuditory Brainstem Implant\u201c sau ABI. Procesorul audio \u0219i implantul sunt similare cu un implant cohlear conven\u021bional, dar un electrod plat este plasat pe trunchiul cerebral \u0219i stimuleaz\u0103 regiunea auditiv\u0103 de acolo.<\/p>\n

\u00cen Rom\u00e2nia, aceasta operatie de implatare nu se realizeaza. Dar Elena-Daniela Nistor, n\u0103scut\u0103 \u00een Ardeal, nu avea de g\u00e2nd s\u0103 renun\u021be at\u00e2t de u\u0219or. “Citesc mult pe internet, citesc multe articole – \u00een special informa\u021bii \u00een limba englez\u0103. \u0218i am trimis o mul\u021bime de e-mailuri la diferite clinici.” \u00cen cele din urm\u0103, a g\u0103sit Casa di Cura din Piacenza, Italia. “Au fost destul de \u00een\u021beleg\u0103tori”, spune ea. \u00cen aprilie 2019, o echip\u0103 medical\u0103 de acolo i-a implantat un ABI. Echipa a fost condus\u0103 de profesorii Mario Sanna, M.D., \u0219i Abdelkader Taibah, M.D., ambii exper\u021bi \u00een otologie, neurotologie \u0219i \u00een opera\u021bii la baza craniului la Casa di Cura.<\/p>\n

“Sunt extrem de bucuroas\u0103 s\u0103 pot auzi!”<\/h2>\n

“Perioada aceea a fost destul de dificil\u0103 pentru mine”, descrie Elena-Daniela Nistor momentul dup\u0103 ce a primit diagnosticul. “Dar acum sunt extrem de bucuroas\u0103 s\u0103 pot auzi! Av\u00e2nd \u00een vedere c\u0103 am fost surd\u0103 timp de doi ani \u0219i sunt \u00een m\u0103sur\u0103 s\u0103 compar cele “dou\u0103” vie\u021bi.”<\/p>\n

“Din ce am citit despre acest implant si ce am experimentat pana acum, pot s\u0103 il folosesc in paralel cu labiolectura.” \u00cen cazul implanturilor, tonalitatea este codificat\u0103 \u00een func\u021bie de loca\u021bia stimul\u0103rii \u00een cohlee. Cu toate acestea, trasarea tonalit\u0103\u021bii este diferit\u0103 \u00een ceea ce prive\u0219te ABI-ul. Prin urmare, procesul de reabilitare auditiv\u0103 \u0219i adaptarea la implant sunt mai complexe. De obicei, rezultatele auditive r\u0103m\u00e2n oarecum \u00een urma celor ob\u021binute cu implantul cohlear dar sunt totu\u0219i o mare u\u0219urare \u00een via\u021ba de zi cu zi.<\/p>\n

“La activare nu am recunoscut niciun sunet.” Timp de doi ani, Elena Nistor a antrenat \u00een mod activ auzirea cu ABI: “Am \u00eenceput cu o \u0219edin\u021b\u0103 de recuperare auditiv\u0103 pe s\u0103pt\u0103m\u00e2n\u0103 \u0219i apoi am mers mai des, de dou\u0103 ori pe s\u0103pt\u0103m\u00e2n\u0103. Iar acas\u0103 am fost ajutat\u0103 de prieteni sau de p\u0103rin\u021bi cu exerci\u021bii suplimentare.” A \u00eenv\u0103\u021bat s\u0103 recunoasc\u0103 sunetele, apoi s\u0103 \u00een\u021beleag\u0103 silabe individuale sau numere, iar apoi s\u0103 \u00een\u021beleag\u0103 cuvinte \u00eentregi sau propozi\u021bii. Ast\u0103zi, implantul este biletul ei c\u0103tre lumea auzului \u0219i un bun ajutor \u00een comunicarea de zi cu zi.<\/p>\n

“Oamenii ar trebui s\u0103 \u0219tie c\u0103 exist\u0103 solu\u021bii!”<\/h2>\n

\u00cen ultima vreme, pandemia Corona a \u00eengreunat c\u0103l\u0103toriile \u00een Italia. “Am c\u0103utat \u0219i am descoperit exper\u021bi \u0219i \u00een Rom\u00e2nia.” Dr. Ing. Antonius Nicolae Stanciu, cu firma sa Eurolegal, care este una dintre cele dou\u0103 partenere oficiale ale produc\u0103torului de implanturi MED-EL \u00een Rom\u00e2nia, s-a \u00eengrijit din acel moment de utilizatoarea ABI. “Aici pot s\u0103 pun mult mai multe \u00eentreb\u0103ri \u0219i primesc mai u\u0219or explica\u021bii despre auzul meu”, spune ea fericit\u0103. “\u00cemi vorbe\u0219te \u00een limba rom\u00e2n\u0103. \u0218i, \u00een plus, nu mai sunt at\u00e2t de obosit\u0103 din cauza drumului.”<\/p>\n

“Sunt foarte recunosc\u0103toare echipei medicale din Italia, f\u0103r\u0103 de care nu a\u0219 fi auzit acum, \u0219i \u00eei sunt recunosc\u0103toare logopedului meu, Viorel Pirlea: m-a \u00eenv\u0103\u021bat s\u0103 \u00een\u021beleg din nou sunetele \u0219i m-a sf\u0103tuit \u00een toate aspectele vie\u021bii”, spune fericit\u0103 utilizatoarea ABI. “Acum, vreau doar s\u0103-mi p\u0103strez starea de s\u0103n\u0103tate a\u0219a cum este acum – sau s\u0103 o \u00eembun\u0103t\u0103\u021besc”, declar\u0103 ea \u0219i adaug\u0103: “\u0218tiu c\u0103 exist\u0103 \u0219i alte persoane care au nevoie de acest tip de implant. Vreau cu adev\u0103rat ca persoanele cu astfel de nevoi s\u0103 \u0219tie c\u0103 exist\u0103 solu\u021bii!”.<\/p>\n<\/div><\/div><\/div><\/div><\/div>\n","protected":false},"excerpt":{"rendered":"

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