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