He aha ka Hemangioblastoma? E kamaʻilio kākou e pili ana i ia mea!

Ua lohe paha ʻoe i ka huaʻōlelo 'Hemangioblastoma'? He mea paʻakikī paha ke kani ʻana, akā he ʻano puʻupuʻu liʻiliʻi ia e hiki ke ulu i loko o ko kākou kino, ʻoiai ma ka lolo, ke kaula kuamoʻo, a i loko paha o ka maka. Mai hopohopo, e kamaʻilio maʻalahi mākou e pili ana i ia mea, ma ke ʻano hiki iā ʻoe ke hoʻomaopopo.

He maʻi ʻaʻai anei kēia?

Makaʻu koke ka poʻe he nui ke lohe lākou i ka huaʻōlelo 'tumor', me ka manaʻo, "ʻAuē, ʻaʻole maopopo iaʻu inā he maʻi kanesa kēia." Hauʻoli wau e haʻi aku iā ʻoe, ʻaʻole kēia 'Hemangioblastoma' he maʻi kanesa. Ma ke ʻano lapaʻau, he mau maʻi ʻino a "ʻaʻole malignant" kēia. ʻO ia hoʻi, ʻaʻole lākou e laha i nā wahi ʻē aʻe o ke kino e like me ke kanesa.

Eia nō naʻe, ʻoiai ʻaʻole kēia he maʻi kanesa, hiki iā lākou ke hana i kekahi mau pilikia liʻiliʻi. ʻO kekahi, i kekahi manawa ʻoi aku ma mua o hoʻokahi o kēia mau puʻupuʻu i loko o ke kino. ʻO kekahi kumu, i ka ulu mālie ʻana o kēia puʻupuʻu, hoʻomaka ia e kaomi i nā ʻiʻo koʻikoʻi a me nā aʻalolo a puni. ʻO ia ka manawa e hoʻomaka ai nā ʻano hōʻailona āpau e ʻike ʻia. Ua like ia me ka loaʻa ʻana o kahi mea nui i loko o kahi lumi liʻiliʻi a ʻaʻohe wahi lawa no ke koena.

ʻO wai ka mea i ʻoi aku ka paʻakikī ke hoʻomohala i kēia?

I kēia manawa, ke noʻonoʻo nei paha ʻoe, "ʻO wai ka mea i ʻoi aku ka paʻakikī o ka loaʻa ʻana o kēia?" ʻOiaʻiʻo, hiki ke ulu kahi maʻi i kapa ʻia ʻo 'Hemangioblastoma' i loko o kekahi kanaka, i kēlā me kēia makahiki. Eia nō naʻe, e like me nā nānā ʻana a nā kauka, ʻoi aku ka maʻamau o kēia maʻi i waena o nā ʻōpio .

Eia kekahi, aia kekahi hihia kūikawā ʻē aʻe. ʻO ia ka maʻi genetic i kapa ʻia ʻo `Von Hippel-Lindau (VHL) disease`. He ʻano laha ʻole kēia, he ʻano hoʻoilina. ʻOi aku ka nui o ka poʻe me ka maʻi `(VHL)` i ka loaʻa ʻana o nā puʻupuʻu `Hemangioblastoma` ma mua o nā poʻe ʻē aʻe. E noʻonoʻo wale, e like me nā helu helu, ma kahi o 60% o ka poʻe me ka maʻi `(VHL)` hiki ke loaʻa i kēia mau puʻupuʻu i loko o ka maka. Eia kekahi, ma kahi o 80% i ʻōlelo ʻia he hiki ke loaʻa i kēia mau puʻupuʻu i loko o ka lolo a i ʻole ke kaula kuamoʻo. No laila, aia kahi pilina nui ma waena o ka maʻi `(VHL)` a me `Hemangioblastoma`.

Pehea ka hopena o ka hemangioblastoma i ke kino?

I kēia manawa, e nānā kākou pehea e pili ai kēia puʻupuʻu i ko kākou kino. Hoʻoholo nui ʻia kona hopena e ka wahi o ka puʻupuʻu a me kona nui.

ʻOi aku hoʻi, inā ulu kēia puʻupuʻu i loko o ka lolo a i ʻole ke kaula kuamoʻo, hiki iā ia ke ālai i ke kahe o ka `Cerebrospinal fluid (CSF)`, he mea nui ia no ko kākou lolo a me ke kaula kuamoʻo. ʻO kēia `(CSF)`, ma ka ʻōlelo maʻalahi, he wai maopopo e like me ka wai e hoʻopuni ana i ko kākou lolo a me ke kaula kuamoʻo, e hāʻawi ana iā lākou i ka palupalu a me ka hānai. Inā ālai ʻia kēia kahe `(CSF)` e kahi puʻupuʻu, hiki ke piʻi aʻe ke kaomi i loko o ka lolo, e hana ana i nā hōʻailona e like me ke poʻo ʻeha nui. Eia kekahi, ma muli o kahi o ka puʻupuʻu, hiki ke ʻomi ʻia nā aʻalolo ma ia wahi, e hana ana i nā aʻalolo.

Pehea ka maʻamau o kēia?

ʻOiaʻiʻo, ʻaʻole ʻo 'Hemangioblastoma' he ʻano maʻamau o ka puʻupuʻu. Inā mākou e lawe i ka huina o nā puʻupuʻu e ulu ana i loko o ka lolo, ʻo 'Hemangioblastoma' ka helu no 0.5% o lākou, he pakeneka haʻahaʻa loa ia, ma kahi o hoʻokahi i loko o ʻelua haneli. Inā mākou e lawe i nā ʻano puʻupuʻu e ulu ana i loko o ke kaula kuamoʻo, ma kahi o 2%. Inā mākou e nānā i nā helu helu ma kahi ʻāina e like me ʻAmelika, ua ʻōlelo ʻia he 24 mai loko mai o 100,000 mau mākua i loaʻa kekahi ʻano puʻupuʻu i loko o ka lolo a i ʻole ka ʻōnaehana nerve. No laila, he pakeneka liʻiliʻi loa ʻo 'Hemangioblastoma' o lākou. No laila, ʻaʻole kēia he maʻi e hoʻopilikia i nā mea āpau.

He aha nā hōʻailona?

ʻOkoʻa iki paha nā hōʻailona o kēia puʻupuʻu 'Hemangioblastoma' ma muli o kahi e ulu ai. E nānā kākou pehea e hana ai.

Inā loaʻa iā ʻoe ka hemangioblastoma o ke kaula spinal:

Inā ulu kēia ʻōpū i loko o kou iwi kuamoʻo, ke kaula aʻalolo i loko o kou iwi kuamoʻo, hiki iā ʻoe ke ʻike i nā hōʻailona e like me kēia:

• Ka paʻa ʻana o ka ʻōpū a i ʻole ka hoʻōki ʻana i ka ʻōpū.
• Ka paʻakikī o ka mimi ʻana (paʻa ʻana o ka mimi) a i ʻole ka hiki ʻole ke kāohi i ka mimi ʻana (ka incontinence o ka mimi).
• Ka manaʻo o ka mae a i ʻole ke ʻūlū ʻana ma nā lālā a i ʻole nā ​​​​​​ʻāpana o ke kino.
• Ka nāwaliwali o nā ʻiʻo , i kekahi manawa e paʻakikī ai ka hele ʻana.

Inā he Hemangioblastoma kou i loko o ka lolo:

Inā ulu kahi puʻupuʻu e like me kēia i loko o ka lolo, ua manaʻo ʻia he puʻupuʻu lolo. A laila e ʻike paha ʻoe i nā hōʻailona e like me:

• Hiki ke loaʻa nā pilikia kaulike , e like me ke kanaka ʻona.
• ʻO ke poʻo pinepine, i kekahi manawa ʻoi aku ka ʻino i ke kakahiaka.
• Ka luaʻi a ka luaʻi paha , ʻoiai i ke kakahiaka.

Inā he hemangioblastoma kou ma ka retina:

Inā ulu kahi puʻupuʻu ma ka retina, ʻo ia ka papa o nā ʻiʻo ma ke kua o ka maka e hoʻopaʻa ana i nā kiʻi a mākou e ʻike ai, ua manaʻo ʻia he puʻupuʻu maka. Eia kekahi mau mea e hiki ke hana:

• Ka wehe ʻana o ka retina, hiki ke alakaʻi i ka nalowale o ka ʻike.
• Ka nalowale mālie a piha paha o ka ʻike .
• ʻEha a me ka pehu ʻana o nā maka.

He aha nā kumu?

I ka hapanui o nā hihia, he paʻakikī ke loaʻa kahi kumu maopopo a kikoʻī no ka ulu ʻana o ka `Hemangioblastoma`. ʻO ia hoʻi, hiki iā lākou ke hana me ke kumu ʻole (sporadic). Eia naʻe, e like me ka mea i ʻōlelo ʻia ma mua, ua ʻike ʻia aia ma kahi o hoʻokahi o nā maʻi ʻehā i loaʻa kahi maʻi genetic i kapa ʻia ʻo `Von Hippel-Lindau (VHL)` e hoʻoulu ai i kēia puʻupuʻu. ʻO ia hoʻi, ʻoi aku ka nui o ka pilikia o ka poʻe me `(VHL)` i ka ulu ʻana o kēia puʻupuʻu.

Pehea ʻoe e ʻike ai i kēia? (Diagnosis)

Inā loaʻa iā ʻoe kekahi a ʻoi aku paha o nā hōʻailona i ʻōlelo ʻia ma luna, ke ʻike ʻoe i ke kauka, e nīnau mua ʻo ia iā ʻoe e pili ana i kāu mau hōʻailona. E nīnau pū ʻo ia e pili ana i kāu mau kūlana olakino ʻē aʻe a inā paha i loaʻa i kekahi o kou ʻohana nā kūlana like (mōʻaukala ʻohana). A laila, hiki ke hana ʻia kekahi mau hoʻokolohua e hōʻoia i ka hōʻailona a hoʻoholo i kahi a me ka nui o ka puʻupuʻu.

• CT scan (Computed Tomography scan): Hoʻohana kēia i kahi moʻo o nā kukuna X a me kahi kamepiula kūikawā e lawe i nā kiʻi ʻokiʻoki o nā ʻiʻo like ʻole i loko o ke kino.
• MRI (Magnetic Resonance Imaging): Hoʻohana kēia i nā kahua magnetic ikaika a me nā nalu lekiō e hana i nā kiʻi maopopo a kikoʻī o nā ʻōpū a me nā ʻiʻo palupalu i loko o ke kino. He hoʻāʻo koʻikoʻi loa kēia no ka ʻike ʻana i nā maʻi e like me ka hemangioblastoma.
• Angiography: ʻO kēia ke komo ʻana i kahi waihoʻoluʻu kūikawā i loko o kahi kīʻaha koko e ʻike maopopo ʻia ai nā ʻōpū e like me ka hemangioblastoma i loko o nā kīʻaha koko ma kahi X-ray a i ʻole MRI/CT scan. Ma muli o ka ulu ʻana o kēia mau ʻōpū i loko o nā kīʻaha koko (nā ʻōpū vascular), hiki i kēia hoʻāʻo ke hāʻawi i kahi manaʻo maikaʻi o ko lākou lako koko.

He aha ka lāʻau lapaʻau?

ʻAe, e nānā kākou i nā lāʻau lapaʻau i loaʻa no ka 'Hemangioblastoma.' Hoʻoholo ʻia ke ʻano lapaʻau e nā kumu he nui, e like me ka nui o ka puʻupuʻu, kona wahi, a me kou olakino holoʻokoʻa.

• ʻOki ʻoki kino: ʻO kēia ke ʻano hana i ʻōlelo pinepine ʻia e nā kauka. Ma kēia, hana ke kauka a kahu maʻi paha i kahi ʻoki ma ka ʻili a hoʻohana i nā mea hana ʻoki e wehe i ka puʻupuʻu. ʻO ka pahuhopu nui ma ʻaneʻi, ʻo ia ka wehe ʻana i ka nui o ka puʻupuʻu e like me ka hiki me ka hoʻēmi ʻana i ka hōʻino ʻana i nā ʻiʻo olakino a puni, ʻoiai nā aʻalolo.
• Lapaʻau radiation: I kekahi manawa, inā ʻaʻole hiki i ke ʻoki kino ke wehe loa i ka puʻupuʻu, a inā ua hoʻi mai ka puʻupuʻu, hoʻohana ʻia ka radiation therapy. Pili kēia i ka hoʻohana ʻana i nā kukuna radiation ikaika a pololei loa e luku i nā hunaola puʻupuʻu a hoʻemi paha i ka puʻupuʻu. Aia nā ʻano hana kūikawā no kēia i kapa ʻia ʻo stereotactic radiosurgery. ʻO ka lōʻihi a me ka nui o ka radiation therapy i hāʻawi ʻia ma muli o nā mea e like me ka wahi o ka puʻupuʻu a me kou mōʻaukala lapaʻau i hala.
• Nānā: I kekahi manawa, inā liʻiliʻi loa ka puʻupuʻu, ʻaʻohe hōʻailona, ​​a inā ʻo kahi o ka puʻupuʻu e hoʻoweliweli loa ai i ka wehe ʻana iā ia ma ke ʻoki ʻana, hiki i nā kauka ke ʻōlelo aku ʻaʻole ʻoe e hana i kekahi mea i kēia manawa, akā e makaʻala iā ia me nā scan MRI maʻamau a me nā kipa hahai. ʻO kēia ke ʻike inā e nui ana ka puʻupuʻu a inā he mau hōʻailona hou kāu. Inā he nui kāu mau puʻupuʻu a ke ulu mālie nei lākou, makemake paha ʻoe e noʻonoʻo i kēia ʻano hana.
• Lāʻau lapaʻau:Ke hana ʻia nei ka noiʻi ʻana i nā lāʻau lapaʻau e hiki ke hoʻōki i ka ulu ʻana o kēia mau puʻupuʻu a hoʻēmi paha iā lākou. ʻOi loa aku no ka poʻe me ka maʻi `(VHL)`, ke hōʻike nei kahi lāʻau lapaʻau i kapa ʻia ʻo `(Belzutifan)` i nā hopena holomua no nā puʻupuʻu e pili ana i `(VHL)`, me `Hemangioblastoma`. Eia nō naʻe, he mau lāʻau lapaʻau hou kēia, ʻaʻole kūpono no nā mea āpau, a pono e lawe wale ʻia ma ke ʻōlelo aʻo a ke kauka.

Hiki ke ho'ōla loa ʻia?

He nīnau koʻikoʻi kēia no nā poʻe he nui. He ʻokoʻa kēlā me kēia maʻi me ka 'Hemangioblastoma', no laila he paʻakikī ke hāʻawi i kahi pane hoʻokahi no kēlā me kēia.

E noʻonoʻo, inā hoʻokahi wale nō puʻupuʻu 'Hemangioblastoma' o ke kanaka, a hiki ke wehe loa ʻia me ka palekana me ke ʻoki ʻana, he haʻahaʻa loa ka manawa e ulu hou ai ma kahi hoʻokahi. ʻO ia hoʻi, he kiʻekiʻe ka manawa e ola ai.

Akā, hiki i kekahi poʻe ke loaʻa i nā puʻupuʻu he nui ma mua o hoʻokahi (ʻoi aku ka poʻe me VHL). A i ʻole, aia paha ka puʻupuʻu i loko o ka lolo a i ʻole ma kahi ʻāpana koʻikoʻi e paʻakikī ke wehe. I ia mau hihia, ʻoi aku ka paʻakikī o ke kamaʻilio ʻana e pili ana i ka ho'ōla piha ʻana. No laila, he mea nui e kamaʻilio me kāu hui lapaʻau e pili ana i ka mea e manaʻo ai ma muli o kou kūlana.

Aia kekahi mau kumu pilikia ʻē aʻe?

ʻAe, e like me kā mākou i ʻōlelo ai i nā manawa he nui ma mua, inā loaʻa iā ʻoe ke ʻano genetic ʻo `Von Hippel-Lindau (VHL)`, ʻoi aku ka nui o kou pilikia o ka loaʻa ʻana o `Hemangioblastoma`. No laila, inā ʻike ke kauka iā `Hemangioblastoma`, ʻoiai inā he ʻōpiopio ʻoe a he nui nā puʻupuʻu, hiki iā lākou ke hoʻāʻo no ka maʻi `(VHL)`.

He aha ka wānana no ka ho'ōla hou ʻana?

ʻO ka wānana no ka hemangioblastoma ma ke ʻano laulā he maikaʻi, ʻoiai inā hiki i ka hui lapaʻau ke wehe loa i ka puʻupuʻu. Eia kekahi, inā ʻaʻole i hoʻoulu ka puʻupuʻu i nā hōʻailona lōʻihi, e like me ka hōʻino mau ʻana o ke aʻalolo, kiʻekiʻe ka manawa e hoʻōla ai.

ʻOiai ma hope o ka wehe ʻia ʻana o ka puʻupuʻu, pono nō ʻoe e ʻike i kāu kauka no nā nānā maʻamau . Hiki i kēia mau nānā ke komo pū me nā mea e like me ka MRI scan. E kōkua ka hana ʻana i kēia i ka ʻike a me ka mālama ʻana i nā hoʻi hou ʻana (ʻoi aku hoʻi i ka poʻe me VHL) i ka wā mua. No laila, ʻo ka hahai pono ʻana i nā ʻōlelo a kāu kauka a me ka hele ʻana i nā keʻena lapaʻau i ka manawa kūpono he mea nui loa ia no kou olakino.

He aha nā nīnau āu e nīnau ai i ke kauka?

Inā he hemangioblastoma kou, a manaʻo paha he hoʻokahi kāu, he mea maikaʻi ke nīnau i kāu kauka i nā nīnau e like me kēia:

• "He aha ke kumu kūpono loa o koʻu mau hōʻailona?"
• "He aha ka manawa kūpono e loaʻa ai iaʻu kekahi maʻi olakino ʻē aʻe (no ka laʻana, ka maʻi VHL) i hoʻoulu ai iaʻu i ka `Hemangioblastoma`?"
• "He aha nā koho lapaʻau no kaʻu 'Hemangioblastoma'? He aha nā pōmaikaʻi a me nā pōʻino o kēlā me kēia lapaʻau?"
• "He aha nā hopena ʻaoʻao e hiki iaʻu ke manaʻo ma hope o kēia mau lāʻau lapaʻau?"
• "He aha ka manawa kūpono e ulu hou ai kahi 'Hemangioblastoma' ma hope o ka wehe ʻana i ka puʻupuʻu?"
• "ʻEhia pinepine e pono ai iaʻu ke hele mai no nā hoʻokolohua kino?"

He mea kōkua nui ia iā ʻoe ke loaʻa kahi ʻike maopopo o kou kūlana ma ka nīnau ʻana i kēia mau nīnau. Mai makaʻu e kamaʻilio me kāu kauka e pili ana i nā mea āpau ma kou manaʻo, ʻaʻohe mea liʻiliʻi. A laila wale nō e hiki ai iā ʻoe ke loaʻa ka lāʻau lapaʻau maikaʻi loa.

E hoʻomanaʻo ma ke ʻano he hōʻuluʻulu manaʻo (Leka Lawe-Home)

ʻAe, e hōʻuluʻulu kākou i nā mea a kākou i kamaʻilio ai.

ʻO ka Hemangioblastoma kahi puʻupuʻu ʻaʻole kanesa (benign) e hana ʻia mai nā kīʻaha koko. Loaʻa pinepine lākou i kou lolo, ke kaula spinal, a i ʻole ka retina .

I ka ulu ʻana o kēia puʻupuʻu, hiki iā ia ke paʻi i nā ʻiʻo a puni a hoʻoulu i nā hōʻailona neurological.

ʻO ka hapa pinepine, e wehe nā kauka i ka puʻupuʻu me ke ʻoki ʻana. Inā wehe loa ʻia ka puʻupuʻu, haʻahaʻa ka manawa e hoʻi hou mai ai . Eia nō naʻe, ʻoi aku ka nui o ka pilikia o ka poʻe me nā maʻi genetic e like me `Von Hippel-Lindau (VHL)` i ka hoʻomohala ʻana i kēia mau puʻupuʻu, hiki paha i nā puʻupuʻu he nui, a ʻoi aku ka nui o ka hoʻi hou ʻana mai.

No laila, inā loaʻa iā ʻoe kekahi o nā hōʻailona i ʻōlelo ʻia ma kēia ʻatikala, ʻoiai inā hoʻomau a ʻoi aku paha ka ʻino, ʻoi aku ka maikaʻi o ka ʻike koke ʻana i ke kauka no ka ʻōlelo aʻo. E hoʻomanaʻo, ʻo ka mua o ka hōʻailona ʻana, ʻoi aku ka nui o ka holomua o ka lāʻau lapaʻau. Mai hopohopo, me ka mālama pono ʻana a me ke alakaʻi ʻana, hiki ke mālama ʻia a ola pono ʻia kēia mau kūlana.

ʻhemangioblastoma , nā puʻupuʻu lolo, nā puʻupuʻu kaula kuamoʻo, nā puʻupuʻu maka, Von Hippel-Lindau, nā puʻupuʻu maikaʻi ʻole, nā puʻupuʻu aʻa koko