He ihu paʻa kou i nā manawa a pau? A i ʻole he kahe koko kou ihu? Manaʻo paha ʻoe i kekahi manawa ua emi kou ʻala? Hiki ke hana ʻia kēia mau mea me ke anu maʻamau a i ʻole ka pilikia sinus. Akā inā hoʻomau kēia mau hōʻailona, a laila he mea paha e hopohopo iki ai. I ia hihia, he mea nui loa ka makaʻala i kēia ʻano i kapa ʻia ʻo Esthesioneuroblastoma, a mākou e kamaʻilio nei.
He aha ka Esthesioneuroblastoma?
I ka ʻōlelo maʻalahi, he ʻano maʻi kanesa kakaikahi loa ka esthesioneuroblastoma. He ʻano maʻi kanesa ia e kū mai ana ma ke poʻo a me ka ʻāʻī. I kekahi manawa kapa ʻia e nā kauka he "olfactory neuroblastoma." I loko o kēia ʻano maʻi kanesa, ulu nā puʻupuʻu kanesa i loko o nā "lua ihu", nā hakahaka i loko o kou ihu. Hōʻino kēia mau puʻupuʻu i nā aʻalolo a me nā ʻiʻo e kōkua iā ʻoe e honi.
ʻOiai ʻo kēia maʻi ka hapanui e pili ana i nā pākeke, hiki i kekahi manawa ke hoʻopilikia i nā keiki a me nā ʻōpio (nā ʻōpio). ʻO ka lāʻau lapaʻau maʻamau e pili ana i ke ʻoki ʻana e wehe i ka puʻupuʻu, a ukali ʻia e ka radiation therapy. Eia nō naʻe, no ka mea hiki i ka esthesioneuroblastoma ke hoʻi hou mai i kekahi manawa, paipai nā kauka i nā nānā mau ʻana e hōʻoia ʻaʻole ia e hoʻi hou mai.
Pehea ka maʻamau o kēia kūlana?
He maʻi laha ʻole kēia. Ma ka honua holoʻokoʻa, hoʻopilikia ia i hoʻokahi i loko o 2.5 miliona mau kānaka i kēlā me kēia makahiki. ʻIke ʻia ka hapa nui o nā kānaka ma waena o 50 a me 70 mau makahiki. Eia naʻe, e like me kaʻu i ʻōlelo ai ma mua, hiki ke loaʻa i nā keiki a me nā ʻōpio. ʻO ka ʻoiaʻiʻo, ʻo ke ʻano maʻamau o ka maʻi ʻaʻai ihu i nā keiki a me nā ʻōpio ʻo ia ʻo Esthesioneuroblastoma.
He aha nā hōʻailona o ka Esthesioneuroblastoma?
Ke loaʻa iā ʻoe kēia ʻano, manaʻo paha ʻoe he maʻi sinus a i ʻole nā pilikia sinus ʻē aʻe. ʻO nā hōʻailona nui:
- Nalowale o ke ʻala (anosmia): E nalowale koke paha kou ʻala, a i ʻole e emi nui paha kou ʻala.
- Ihu paʻa : He manaʻo mau o ka paʻa ʻana i ka ihu, e paʻakikī ai ka hanu ʻana.
- Ke kahe koko hou ʻana o ka ihu (`recurrent epistaxis`): Ke kahe koko mai ka ihu, me ka manaʻo ʻole a i ʻole no kekahi kumu liʻiliʻi. He mea paʻakikī paha ke hoʻōki i kēia kahe koko.
Inā ua loaʻa iā ʻoe kekahi a ʻoi aku paha o kēia mau hōʻailona no ka manawa lōʻihi, ʻoi aku ka maikaʻi o ka ʻimi ʻana i ke kōkua lapaʻau.
He aha ke kumu o ka esthesioneuroblastoma?
I ka ʻoiaʻiʻo, ʻo kēia maʻiʻAʻole i loaʻa ke kumu kikoʻī. Ke noiʻi nei nā loea i kēia. Manaʻo lākou he pili paha nā loli genetic ('chromosomal changes') a i ʻole nā mutation ('mutations'). Akā, ʻaʻohe hopena paʻa i hiki mai.
He aha nā pilikia o kēia maʻi?
He maʻi ʻaʻai paʻakikī ʻo Esthesioneuroblastoma.
- Hoʻi hou: He mea maʻamau loa ka hoʻi ʻana mai o kēia maʻi kanesa ma hope o ka mālama ʻia ʻana. I kekahi manawa hiki ke hoʻi hou mai i nā makahiki ma hope o ka mālama ʻia ʻana. Ke hana ia, hiki ke hoʻi hou mai i kahi like me ia ma mua, a i ʻole hiki ke laha i nā ʻiʻo kokoke. He mea kākaʻikahi loa, hiki ke laha i nā wahi mamao o ke kino.
- Hoʻolaha i nā wahi ʻē aʻe (metastasize): Inā ʻaʻole mālama ʻia, hiki i kēia maʻi ʻaʻai ke hoʻolaha i ka lolo a i ʻole nā ʻāpana ʻē aʻe o ke kino. Ua hōʻike ʻia nā noiʻi e hoʻolaha pinepine kēia maʻi ʻaʻai i nā sinuses. Eia nō naʻe, hiki iā ia ke hoʻolaha i nā lymph nodes ma ka ʻāʻī, nā māmā, a me nā iwi.
ʻO ia ke kumu he mea nui ka ʻike mua ʻana i kēia maʻi, loaʻa ka lāʻau kūpono, a laila e hana i nā hoʻokolohua lapaʻau maʻamau.
Pehea e ʻike ʻia ai ka Esthesioneuroblastoma?
Hoʻohana nā kauka i nā hoʻokolohua like ʻole e ʻike ai i kēia maʻi. Hiki i kēia mau mea ke komo pū me:
- CT scan: Hiki i kēia ke kiʻi i nā kiʻi kikoʻī o loko o ke kino, e like me kahi X-ray kūikawā.
- MRI scan: Hiki i kēia ke hana i nā kiʻi maopopo o nā ʻiʻo a me nā ʻōpū i loko o ke kino.
- ʻO ka endoscopy nasal: Pili kēia i ke komo ʻana i kahi ʻōmole lahilahi me kahi kāmela liʻiliʻi i loko o ka ihu e nānā i loko o ka ihu a me nā lua sinus.
- ʻIke PET: Hiki ke hoʻohana ʻia kēia e ʻike inā loaʻa nā hunaola kanesa ma nā wahi āpau o ke kino.
Ma hope o kēia mau hoʻokolohua, inā he kānalua ke kauka, e lawe lākou i kahi ʻāpana ʻiʻo a nānā iā ia e hoʻoholo pono inā he maʻi ʻaʻai ia. Ua kapa ʻia kēia he biopsy .
He aha nā pae o Esthesioneuroblastoma?
ʻO ke kahua o ke kanesa kahi ʻano hana e hoʻoholo ai i ka mamao o ka laha ʻana o ke kanesa a me kona ʻano. Hoʻohana ʻia kēia kahua e hoʻolālā i ka mālama ʻana a wānana i ke ala e hiki mai ana o ka maʻi (prognosis). ʻEhā mau kahua nui o ka esthesioneuroblastoma:
- Pae A: Ua ulu nā hunaola kanesa i loko o kahi puʻupuʻu i loko o ka lua ihu.
- Pae B: Ua pālahalaha pololei ke kanesa mai ka lua ihu a i loko o nā sinuses ihu.
- Pae C:Ua pālahalaha ke kanesa mai ka lua ihu a me nā sinuses a i nā maka a i ʻole ka lolo.
- Pae D: Hōʻike nā hoʻokolohua ua pālahalaha ke kanesa i nā ʻāpana ʻē aʻe o ke kino, no ka laʻana, nā lymph node ma ka ʻāʻī, ka iwi iwi, a i ʻole nā māmā.
He aha nā lāʻau lapaʻau no ka Esthesioneuroblastoma?
Hana pinepine nā kauka i ke ʻoki kino e wehe i kēia mau puʻupuʻu kanesa. Aia kekahi mau ʻano hana ʻoki kino like ʻole:
- ʻO ke ʻoki endoscopic: Pili kēia i ke kau ʻana i kahi kāmela liʻiliʻi a me nā mea hana ma o ka ihu e wehe i ka puʻupuʻu me ka ʻole o ka hana ʻana i kahi ʻoki waho.
- ʻO ke ʻoki kino Craniofacial: He ʻoki kino paʻakikī kēia. Pili ia i nā ʻāpana o ka maka a me ke poʻo.
- Craniotomy: Pili kēia i ka wehe ʻana i kahi ʻāpana o ke poʻo a me ka wehe ʻana i nā ʻōpū e hoʻopuni ana i ka lolo.
Ma waho aʻe o kēia mau hana ʻoki, aia kekahi mau lāʻau lapaʻau ʻē aʻe:
- Lapaʻau radiation: Hoʻohana ʻia kēia lāʻau lapaʻau e luku i nā hunaola kanesa e waiho ʻia ma hope o ke ʻoki ʻana.
- Chemotherapy: Hoʻohana ʻia kēia lāʻau lapaʻau ke hiki ʻole ke wehe palekana i nā ʻōpū ma o ke ʻoki ʻana.
ʻEhia ka lōʻihi e ho'ōla ai mai ke ʻoki kino?
Aia nō ia i ke ʻano o ke ʻoki kino āu e hana ai. Akā, ma ka maʻamau, pono ʻoe e noho i ka haukapila no ʻelua a ʻelima mau lā. Ma hope o kēlā, e hoʻi ʻoe i ka home a hoʻomau i kou hoʻōla ʻana. Hiki ke hala i hoʻokahi a ʻelua paha mahina no ka hoʻomaka ʻana o ka radiation therapy.
He aha nā hopena ʻaoʻao o nā lāʻau lapaʻau?
Hiki i ke ʻoki kino, ka radiation therapy, a me ka chemotherapy ke loaʻa nā hopena ʻaoʻao like ʻole.
- Nā hopena ʻaoʻao o ke ʻoki kino: Hiki ke loaʻa ka ʻeha, ka ihu paʻa, a me nā hopena i ka anesthesia.
- ʻO nā hopena ʻaoʻao maʻamau o ka chemotherapy a me ka radiation therapy e komo pū me ka luhi, ka maʻi kahe, ka nausea, a me ka luaʻi.
ʻAʻole like kēia mau hopena ʻaoʻao i nā kānaka a pau. Hiki i kekahi poʻe ke loaʻa iā lākou me ka ʻino loa, aʻo kekahi poʻe e ʻike iki aku iā lākou.
He aha nā pilikia o ka mālama ʻana?
I kekahi manawa, hiki ke loaʻa nā pilikia ma muli o ka mālama ʻana. Hiki ke loaʻa kēia mau mea, ʻoiai me ke ʻoki ʻana:
- Ka maʻi ʻana.
- Ke kahe koko nui ʻana.
- Ka nalowale mau o ke ʻala. ʻIke ʻoe, aia kahi pilina nui ma waena o ko kākou ʻala a me ko kākou ʻono. No laila, inā nalowale kou ʻala, e nalowale paha kou ʻono.
- Ka liki ʻana o ka wai Cerebrospinal (CSF). ʻO kēia ka wā e liki ai ka wai pale e hoʻopuni ana i ka lolo a me ke kaula spinal mai ka ihu.
- Ua maloʻo a ʻāpiki hoʻi ka wai kahe o ka ihu.
Inā loaʻa kekahi mea e like me kēia, pono ʻoe e hoʻomaopopo koke i ke kauka.
He aha ka wānana no ka Esthesioneuroblastoma i nā pākeke?
ʻO ka wānana o kahi maʻi he kuhi a ke kauka no ke ʻano o ka hopena o ka maʻi iā ʻoe ma hope o ka mālama ʻana. ʻAʻole like kēia no nā kānaka a pau. Aia ia i kekahi mau kumu. Eia kekahi laʻana:
- Aia ma hea i loko o ke kino ke kanesa?
- Inā ua pālahalaha ke kanesa i nā ʻāpana ʻē aʻe o ke kino.
- ʻEhia ka nui o ka puʻupuʻu i wehe ʻia i ka wā o ke ʻoki ʻana.
- Nā ʻano o nā hunaola kanesa i ʻike ʻia ma nā hōʻike hoʻokolohua.
Inā he mau nīnau kāu e pili ana i ka nānā ʻana i kou kūlana, e kamaʻilio me kāu kauka lapaʻau a me ke koena o kāu hui lapaʻau. ʻIke maikaʻi lākou iā ʻoe a me kou kūlana.
He aha ke ʻano o ka Esthesioneuroblastoma i nā keiki?
E like me nā pākeke, hilinaʻi ka nānā ʻana no nā keiki i ko lākou kūlana kikoʻī, me ka wahi o ka puʻupuʻu, nā ʻano o nā hunaola kanesa, inā ua pālahalaha ke kanesa, a me ka nui o ka mea i wehe ʻia i ka wā o ke ʻoki ʻana.
He aha ka nui o ke ola no ka esthesioneuroblastoma?
Hoʻomaulia nā kauka i kēia mau helu ma muli o nā ʻike o ka poʻe me ka maʻi. I ke ʻano o kēia maʻi, ua manaʻo ʻia aia ma waena o 50% a me 90% o nā maʻi e ola ana i ʻelima mau makahiki ma hope o ka hōʻoia ʻana.
Akā, mai hopohopo a huikau paha i kēia mau helu 'helu ola'. He mau kuhi wale nō kēia. ʻO ia hoʻi, ua hoʻokumu ʻia lākou ma nā ʻike o haʻi. ʻO ka mea i ʻoiaʻiʻo no lākou, ʻaʻole paha ia he ʻoiaʻiʻo nou. Inā he mau nīnau kāu e pili ana i kēia, mai makaʻu e kamaʻilio me kāu kauka. E wehewehe ʻo ia i kēia mau kuhi iā ʻoe a pehea e pili ai i kou kūlana.
Hiki i ka Esthesioneuroblastoma ke lilo i mea make?
ʻAe, hiki ke make . Hiki i ka Esthesioneuroblastoma ke pālahalaha i nā māmā a i ʻole nā ʻāpana ʻē aʻe o ke kino. Hiki nō hoʻi ke hoʻi mai ma hope o ka mālama ʻana a ulu ma nā wahi ʻē aʻe. ʻO ka Esthesioneuroblastoma i pālahalaha (metastatic) a i ʻole ua hoʻi mai (recurrent) hiki ke hoʻoweliweli i ke ola inā ʻaʻole i ʻike mua ʻia. ʻO ia ke kumu he mea nui loa ka loaʻa ʻana o nā nānā mau. Hiki i kāu kauka ke hana i nā hoʻokolohua a ʻike koke i ke kanesa.
Āhea wau e ʻike ai i kaʻu kauka?
No ka mea hiki ke hoʻi hou mai ka esthesioneuroblastoma, pono ʻoe e hoʻolālā e ʻike i kāu hui lapaʻau ma ka liʻiliʻi hoʻokahi manawa i ka makahiki no ke koena o kou ola. E nānā lākou i kou olakino holoʻokoʻa. Hiki paha iā lākou ke hana i nā hoʻokolohua kiʻi e ʻike ai inā ua hoʻi mai ke kanesa.
He aha nā nīnau e pono iaʻu e nīnau aku i kaʻu kauka?
No ka mea, he maʻi laha ʻole ka esthesioneuroblastoma, ʻaʻole paha ʻoe i ʻike nui e pili ana i ia mea. Eia kekahi mau nīnau hiki iā ʻoe ke nīnau i kāu kauka:
- ʻEhia ka nui o ka puʻupuʻu i loko o koʻu ihu?
- E pono anei iaʻu ke ʻoki kino?
- He aha ke ʻano o ke ʻoki kino e pono ai iaʻu?
- Inā hana ʻia ke ʻoki kino iaʻu, e hoʻi hou mai anei koʻu ʻala?
- He aha nā koho ʻē aʻe i ke ʻoki kino?
- ʻEhia ka lōʻihi ma hope o ka mālama ʻana e pono ai iaʻu e hele mai no nā hoʻokolohua lapaʻau?
He maʻi ʻaʻai laha ʻole ka Esthesioneuroblastoma e ulu ana i loko o ka ihu. Hoʻomohala ia i ka hala ʻana o ka manawa. I kekahi manawa manaʻo ka poʻe ʻaʻole koʻikoʻi nā hōʻailona e like me ka ihu paʻa, ke kahe koko o ka ihu, a me ka nalowale o ke ʻala e kamaʻilio ai me ke kauka.
ʻOiaʻiʻo, i kekahi manawa he kahe koko ka ihu. Akā inā e kahe mau ana kou ihu, ʻaʻole e hoʻomaikaʻi kou ihu paʻa, a i ʻole manaʻo ʻoe ua nalowale kou ʻala, pono ʻoe e kamaʻilio me ke kauka. Hiki iā ia ke nānā i kou kūlana a paipai i nā hana aʻe.
Nā mea nui loa āu e hoʻomanaʻo ai (Leka Lawe-Home)
ʻAe, ke lana nei koʻu manaʻo ua maopopo iā ʻoe i kēia manawa ka mea a mākou i kamaʻilio ai, ʻo Esthesioneuroblastoma. ʻO ka mea nui e hoʻomanaʻo ai, ʻo ia kēia mau mea:
- He maʻi kanesa laha ʻole kēia: no laila, mai makaʻu ke lohe ʻoe i kēia inoa.
- E makaʻala i nā hōʻailona: Mai hoʻokuʻu i nā mea e like me ka ihu paʻa mau, ke kahe pinepine ʻana o ke koko, a me ka emi ʻana o ke ʻala e like me ka mea maʻamau, ʻoiai inā hoʻomau lākou.
- He mea nui ka ʻike mua ʻana: E like me nā maʻi āpau, hoʻonui ka ʻike mua ʻana i nā manawa kūpono o ka mālama ʻana.
- Nā hoʻokolohua lapaʻau maʻamau: ʻOiai ma hope o ka lāʻau lapaʻau, he mea nui e hana i nā hoʻokolohua maʻamau e like me ka ʻōlelo a kāu kauka, no ka mea, hiki i kēia maʻi kanesa ke hoʻi hou mai.
- E hilinaʻi i kāu kauka: E kamaʻilio me kāu kauka e pili ana i nā nīnau a hopohopo paha āu. ʻO lākou ka poʻe hiki ke hāʻawi iā ʻoe i ka ʻōlelo aʻoaʻo maikaʻi loa.
E hoʻomanaʻo, ʻo ʻoe ka mea e pono e hopohopo nui e pili ana i kou olakino. Inā manaʻo ʻoe i kekahi mea ʻē, ʻoiai ka mea liʻiliʻi loa, ʻaʻole loa e lohi ke ʻimi i ke kōkua lapaʻau.
ʻEsthesioneuroblastoma , Esthesioneuroblastoma, Ka maʻi ʻaʻai ihu, Poho o ke ʻala, Koko ihu, Ka maʻi ʻaʻai poʻo a me ka ʻāʻī, Lapaʻau ʻana i ke kanesa
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