Kei te puta mai tētahi wāhanga o tō roro ki roto i tō angaanga? Me ako tātou mō te Chiari Malformation!

He mamae te upoko, he mamae hoki te kaki i ētahi wā? Kei te ahua rānei koe kei te ngaro tō taurite, kei te hikoi haere rānei me te whakaaro kei te hinga koe? Kāore pea ēnei mea i te tūpono noa iho. I tēnei rā ka kōrero tātou mō tētahi āhuatanga uaua, engari kāore i te mōhiotia e te tini o te tangata. Ko te Chiari Malformation tēnā. Kaua e manukanuka, me kōrero noa iho tātou.

He aha te mate pukupuku Chiari?

I te whakarapopototanga, ko te mate Chiari he āhua e pana ana te kiko roro kei muri o tō angaanga, kei raro, ki raro, ka tipu haere i te taha o tō taurakira. Whakaarohia tō angaanga he whare. I ētahi wā, kāore e ranea te wāhi mō tō roro ki roto i taua whare. Ina tupu tēnā, ka pana tetahi wāhanga o tō roro, inā koa tō roro iti, mā roto i tētahi whakatuwheratanga tūturu kei te pūtake o tō angaanga - e kiia ana ko te foramen magnum - ka pana ki raro, ki raro hoki ki tō taurakira.

He wāhanga tino nui tō roro iti o tō roro. He maha ngā mea e whakahaere ana i tēnei mate, tae atu ki ngā nekehanga uaua, te tū, te taurite, te kōrero, me te taunga . Nō reira, ina pā tēnei mate ki te roro iti, ka tīmata te puta o ngā tohu e pā ana ki tēnei mate. Hei tauira, ko ngā mea pēnei i te ngaronga o te taurite.

Ina pēhia tetahi wāhanga o te roro ki raro pēnei, ka pēhi ki te turanga o te angaanga. Ka āraihia te rere o te wai cerebrospinal (CSF). Ka tiakina e tēnei wai tō roro me tō taurakira, ka tohatoha i ngā matūkai me ngā matū, ā, ka tangohia ngā para. Nō reira, ina whakararuhia te rere o tēnei wai, ka puta he maha ngā raruraru.

He aha ngā momo o te mate Chiari?

He maha ngā momo matua o tēnei mate. Kia tirohia tātou he aha ēnei:

• Momo mate Chiari 0: He tino onge tēnei. I tēnei momo, he iti noa iho, he kore rawa rānei e puta mai ētahi wāhanga o tō roro iti ki roto i te pūaha i te pūtake o tō angaanga (foramen magnum). Heoi, he iti noa te pupuhi. Ko ngā tohumate ka puta mai i te rere rerekē o te wai roro iti (CSF) e tata ana ki te pūtake o tō angaanga.

• Te momo mate Chiari I: Koinei te momo tino noa. Koinei te wāhi e pana ai te wāhanga o raro o te roro iti ki roto i te whakatuwheratanga i te pūtake o te angaanga (foramen magnum). Ko te tikanga ka puta tō taurakira mā roto i tēnei whakatuwheratanga. Ko ētahi tāngata he momo I kāore pea he tohu. Ka puta pea ngā tohu i te wā taitamariki, i te wā rānei e pakeke haere ana.

• Momo tuarua o te āhua o Chiari:Ka puta tēnei i te wā o te kukunetanga, i te wā e whanake ana te pēpi i roto i te kōpū. I konei, ka whanake rerekē te cerebellum me te take roro, ka puta he pēhanga ki roto i te angaanga. He maha ngā wā ka puta tahi tēnei momo me te myelomeningocele, he momo kino o te spina bifida. Ko te Myelomeningocele he āhuatanga e kore ai e kati tika te taurakira me te awa tuaiwi i mua i te whānautanga o te pēpi. Ka katihia te tuaiwi mā te pokanga i muri i te whānautanga, engari ka puta pea ngā āhuatanga pēnei i te pararutiki.

• Te momo mate Chiari III: He tino onge hoki tēnei, ā, koinei te momo mate Chiari tino kino. I tēnei take, ka puta mai ētahi wāhanga o te cerebellum me te take roro mā roto i tētahi kōhao rerekē i te tuarā o te angaanga (ehara i te foramen magnum). Hei tāpiri, ka puta mai hoki ētahi o ngā kiriuhi e karapoti ana i te roro, i te taurakira rānei mā roto i tēnei kōhao. Ka puta he pupuhi i te tuarā o te angaanga, e kiia nei ko te encephalocele . Ka puta mai i te momo III ngā tohu kino, e morearea ana ki te ora, ka tīmata i te wā tamarikitanga. Tērā pea he raruraru pūnaha io, he ngoikoretanga ako, me ngā mate hopuhopu kei roto i ēnei tamariki. He maha ngā wā ka hiahiatia he pokanga mō tēnei.

• Te momo whā o te mate Chiari: He tino onge hoki tēnei. Koinei te wāhi kāore anō kia tino whanake te roro iti, kua ngaro rānei ētahi wāhanga o te roro iti. He kino rawa atu hoki tēnei momo, ā, ka noho hei mea mōrearea ki te ora i te wā e pēpi ana.

He pēhea te noa o tēnei āhuatanga?

E ai ki ngā rangahau, tata ki te 1 i roto i te 1,000 tāngata i te Hononga o Amerika anake ka pāngia e te Chiari Malformation. Heoi, tera pea he nui ake te kitea o tēnei mate nā te mea kāore he tohu o ētahi tāngata, ka puta rānei ngā tohu i te hunga taitamariki, i te hunga kaumātua rānei.

He aha te āhua o te mate Chiari?

Mena kei a koe te Chiari Malformation, ka pāngia pea koe e ngā tohu penei:

• Ko te āhua o te mamae o te upoko he mamae koi, he mamae wero, inā koa ki te tuara o te upoko, te kaki, ngā pakihiwi rānei. Tērā pea ka kino ake tēnei mamae i te wā e maremare ana, e tihe ana rānei .
• Ngā raruraru ki te taurite me te taunga. Tērā pea ka wiriwiri koe i a koe e hikoi ana, me te mea kāore he mana whakahaere.
• Te whanoke me te pororaru (te āhua e hurihuri ana tō taiao).
• Te ngoikore o te uaua.
• Te ngenge o ngā ringa, o ngā waewae rānei, te wera rānei o ngā maihao, ngā kapu o te waewae, ngā ngutu rānei.
• Te āhua nei kei te pekepeke te pao o tō ngākau (palpitations).
• Te kore moe me te ngenge mau tonu.

He aha atu ngā tohu o te mate Chiari Malformation?

Anei ētahi atu tohu noa:

• Ngā Huringa Tirohanga: Te tirohanga takirua, te tirohanga pōuri, ngā nekehanga kanohi rerekē, me te aro ki te mārama.
• Ngā raruraru whakarongo: Te tangi o ngā taringa (tinnitus) te ngaronga rānei o te rongo.
• Ngā uauatanga ki te horomi: te pupuhi o te huware, te ruaki, te āhua kua purua tō korokoro, e uaua ai te kai, te inu, me te kōrero.
• Te korokoro.
• Te kore e taea te whakahaere i te mimi, i te tūtae rānei.
• Te hemo.
• Te uaua ki te manawa i te wā e moe ana (sleep apnea).

He mea nui: Ka rerekē pea ēnei tohu i ia tangata, i ia tangata. Kāore he tohu o ētahi tāngata, he ngawari noa iho ngā tohu o ētahi, ā, he tino kino ngā tohu o ētahi. Tērā pea ka pāngia ētahi e ngā tohu mai i te whānautanga mai. Tērā pea ka puta ake ngā tohu i ētahi i muri mai, i te mutunga o te tamarikitanga, i te pakeketanga rānei. Tērā pea ka memeha haere, ka memeha haere hoki ngā tohu i roto i te wā.

He aha ngā take o te mate kiri Chiari?

Ka puta tēnei āhuatanga ina panaia te wāhanga o raro o tō roro ki roto i te awa tuaiwi, ki te foramen magnum rānei (te wāhi e tūtaki ai te roro me te taura tuaiwi). Ko te tino take o tēnei he rerekētanga o te whanaketanga hanganga o tō roro me tō taura tuaiwi. Ko te tikanga he iti ake te rahi o te angaanga i te wāhi kei reira te cerebellum i te mea e whakaarohia ana. Ka pēhia taua wāhanga o te roro, ka tupu te cerebellum ki raro i tētahi wāhi kāore i te tumanakohia. He maha ngā wā ka puta tēnei i te wā e whanake ana te kukune.

Ko te nuinga o ngā mate Chiari he whānautanga mai. Heoi, ka puta pea ngā tohu i muri mai i te oranga. Tērā pea nā te whakarerekētanga ira i tukuna iho mai i tō whānau, he mea rānei ka puta noa i muri i te haputanga.

Heoi, he tino onge te whanaketanga o te mate Chiari i roto i te tangata kāore i whānau mai me tēnei mate i muri mai i te oranga. I roto i ēnei āhuatanga, ka rerekē te āhua o te angaanga, o te tuaiwi rānei nā ēnei take e whai ake nei:

• He pukupuku roro.
• He pūkahukahu.
• He toto totoka (Hematoma).
• Te mate waikura (hydrocephalus).
• Te toto toto tiketike o roto o te angaanga, te puku roro hē rānei.

I ētahi wā, ka puta te mate Chiari me ētahi atu mate hauora, pēnei i:

• Te mate Goldenhar.
• Akondroplasia.
• Ngā mate hononga honohono pērā i te mate Ehlers-Danlos.
• Te uaua o te tuaiwi.

He aha ngā āhuatanga mōrearea mō te mate Chiari Malformation?

Ka pāngia te tangata katoa e tēnei mate, engari ki te pāngia tētahi o tō whānau e tēnei mate, ka nui ake te tūponotanga ka pāngia koe e te mate Chiari malformation.

He aha ngā raruraru ka pā mai i te Chiari Malformation?

Ka pā mai pea ngā raruraru hauora nui me ngā whakaroa whanaketanga i te mate Chiari. Ko ētahi o ngā raruraru ko:

• Te Waikura: He mate morearea tēnei. Koinei te wā e kohikohi ai te wai cerebrospinal (CSF) i roto i tō roro. Ka puta tēnei ina kore e taea e te CSF te rere tika. Ina kohikohi te CSF, ka piki ake te pēhanga i roto i te angaanga. Ka raru pea te mahi hinengaro me te āhua o te upoko . Ki te kore e rongoatia, ka morearea pea. Ko tēnei raruraru ka kitea nuitia i roto i te momo mate Chiari II.

• Syringomyelia me Hydromyelia: Ina kore e rere tika te wai cerebrospinal (CSF) i waenganui i tō roro me tō taurakira, ka taea te kohikohi i roto i te taurakira. Ka taea e tēnei kohikohinga wai te kino i te taurakira, ā, ka puta ngā tohu pēnei i ngā raruraru nekehanga me te taurite, te mamae, te ngoikore o te uaua, te māuiui o te uaua, te ngoikore, te heke o te aro ki te wera me te makariri, me te ngaronga o te mana whakahaere o te pūkahukahu me te puku .

• Te mate taura here: Ko ngā tamariki i whānau mai me te myelomeningocele (he momo spina bifida kino rawa atu) ka nui ake te mōrearea ki te whakawhanake i te mate taura here i a rātou e pakeke haere ana. Ka puta tēnei ina piri te taura tuaiwi ki te taura tuaiwi nā te mea he kiriuhi i muri i te pokanga tuaiwi. Ka taea e tēnei āhuatanga te whakararu haere i ngā io ka pā ki ngā uaua o te tinana o raro me ngā waewae. Ka pā hoki ki te mahi o te whekau me te mimi.

Hei tāpiritanga, ka pāngia tō wairua e ngā tohu o te mate Chiari malformation, inā koa mēnā he mate moe kore koe, he ānini nui rānei. Tērā pea ka pāngia ētahi tāngata e ngā āhuatanga pēnei i te pouri . Mēnā kei te pāngia tō wairua e tēnei āhuatanga, kōrero ki tō tākuta, ki tētahi kaitohutohu hauora hinengaro rānei.

Me pēhea te tautuhi i te mate Chiari Malformation?

Ka tātaritatia tēnei mate e te tākuta i muri i te whakamātautau tinana katoa. Ka tirohia e tō tākuta tō nekehanga, tō taurite, me ō kare ā-roto i ō ringaringa me ō waewae . Hei tāpiri, ka rapua e rātou ngā tohu o ngā raruraru mahara, ngā wero ako, me ngā whakaroa whanaketanga o ngā tamariki.

Hei whakaū i te mate, ka whakahau te tākuta i ngā whakamātautau whakaahua hei tango pikitia taipitopito o tō roro me tō taurakira. Kei roto pea i ēnei:

• Matawai MRI (Atahanga Āhua Matū): Ka taea e tēnei te kite mārama i ngā kiko ngohengohe me ngā wheua. Ka āwhina i te tākuta ki te kite i tō roro, tō taurakira, me te wai cerebrospinal (CSF). Ka taea hoki te kite i te tawhiti kua uru atu te cerebellum ki te awa tuaiwi.
• Cine MRI: He rite tēnei ki te MRI noa, engari mā tēnei ka taea e te tākuta te kite i te tauira rere o te wai cerebrospinal (CSF) huri noa i te turanga o te angaanga.
• Matawai CT (Tomography Rorohiko): Ka āwhina te matawai CT ki te tautuhi i ngā raruraru o ngā wheua o te turanga angaanga me te tuaiwi.
• Hiko-X: Ka tangohia ngā hihi-X hei tirotiro mō ngā āhuatanga rerekē o ngā wheua o te angaanga me te kaki.

I ētahi wā, ka kitea anō ngā āhua kino o Chiari i te wā o ngā whakamātautau ultrasound i mua i te whānautanga , arā, he whakamātautau e whakamahi ana i ngā ngaru oro hei hanga whakaahua o ngā kiko ngohengohe.

Mena kāore he tohu o te mate Chiari, tera pea ka kitea koe kei te mate koe i tēnei mate ina whakamātauhia he whakaahua mō tētahi take kāore e pā ana ki tēnā.

Me pēhea te rongoā i te mate Chiari Malformation?

Ka whakawhanakehia e tō tākuta he mahere maimoatanga i runga i te kaha o ō tohumate. Mēnā kāore he tohumate, kāore he maimoatanga e hiahiatia ana. Ka aroturukihia tō hauora e tō tākuta mā te whakamahi i ngā matawai MRI auau.

Mō ngā tohu ngawari pēnei i te mamae o te upoko, te mamae kaki rānei, ka taea e koe te whakamātau i ēnei mea:

• Te tango i ngā rongoā whakamamae mamae, i ngā rongoā rānei hei āwhina i te whakahaere i ngā tohumate.
• Te whai wāhi atu ki te mirimiri, ki te whakaora tinana rānei.
• Te whakawhāiti i ngā mahi ā-tinana pērā i te hiki taumaha.
• Te whakamahi i ngā taputapu pēnei i ngā taputapu whakarongo, i ngā mōhiti rānei hei āwhina i te hunga e ngoikore ana te whakarongo, te tirohanga rānei.

Te pokanga mō te hapa o Chiari

Mēnā he kino rawa te āhua o te kiri Chiari, me mahi pea te pokanga. He maha ngā kōwhiringa pokanga:

• Craniectomy: Ka tangohia e te taote pokanga tētahi wahi iti o te wheua mai i tō angaanga hei whakamama i te pēhanga ki te roro, hei āwhina hoki i te rere o te wai cerebrospinal (CSF).
• Te tango i te pēhanga o te fossa o muri: Koinei te tikanga e whakamahia ana hei rongoā i te mate Chiari. Ka tangohia e te taote pokanga tetahi wāhanga o te tuara o te angaanga (e kiia nei ko te fossa o muri) hei whakamama i te pēhanga ki te roro, hei hanga hoki i te wāhi nui ake mō te roro.
• Te tango i te laminēti:I runga i te kaha o te mate Chiari, ka tangohia e te taote pokanga tētahi wāhanga iti o ngā wheua e hipoki ana i tō tuaiwi hei whakaora i te rere o te wai cerebrospinal (CSF) me te hanga wāhi nui ake mō te taurakira.
• Duraplasty: I roto i tēnei pokanga tango pēhanga, ka whakatuwherahia e te taote pokanga te dura (te kiriuhi o waho o tō roro). Kātahi ka tuitui te taote pokanga i tētahi pāti hei whakanui i te kiriuhi, kia nui ake ai te wāhi mō te roro. Ka whakanuia e tēnei tikanga te rohe, ā, ka whakaitihia te pēhanga ki runga i te roro.
• Te Hikohiko: Hei hanga i te wāhi nui ake, hei tuku hoki i te wai cerebrospinal (CSF) kia rere, ka whakamahia e ngā taote pokanga he iti noa te hiko hei whakaiti i tētahi wāhi iti o tō roro e kiia nei ko ngā tonsil cerebellar. Ka whakaitihia ēnei tonsil me te kore e kino te roro, ngā io rānei.
• Te whakanoho i te shunt: Mena he hydrocephalus tōu, ka whakanohoia e tō taote pokanga he shunt, he ngongo rānei, ki roto i tō angaanga hei kohi i te wai cerebrospinal tāpiri (CSF). Ka mimiti tēnei wai mai i tō angaanga me tō roro ka kohia ki tētahi atu wāhanga o tō tinana.

He pānga taha kei te rongoā?

I mua i te tīmatanga o te maimoatanga, ka kōrero tō tākuta ki a koe mō ngā pānga taha o te maimoatanga kia taea ai e koe te whakatau whai whakaaro mō tō hauora. He mōrearea ngā pokanga katoa. He nui ake te mōrearea o te pokanga i tō roro me tō angaanga nā te mea e tata ana ngā tapahi me ngā tikanga ki te roro. Tērā pea me nui ake ngā pokanga i a koe e pakeke haere ana.

Kia pēhea te tere o taku pai ake i muri i te maimoatanga?

I runga i te mahere maimoatanga e whiriwhiria ana e koe me tō tākuta, tera pea ka tere te whakaora i ngā tohu ngawari i muri i te tango i ngā rongoā whakamamae mamae, i muri rānei i te haere ki te rongoā. Ka roa pea te whakaoranga mai i te pokanga mai i ētahi wiki ki ētahi marama. Tērā pea ka kite koe kua memeha haere ō tohu, kua tino heke rānei i muri i te pokanga.

He mate kino te Chiari Malformation?

I ētahi wā, ka tino kino te mate Chiari, engari kāore i te katoa. I te nuinga o te wā, ka whānau mai ngā pēpi me te mate Chiari. Heoi, kāore e kitea tonutia ngā tohu, ā, ka roa pea te tātaritanga, i te mutunga o te tamarikitanga, i te pakeketanga rānei, ina tonoa e te tākuta he whakamātautau whakaahua mō tētahi take kāore e pā ana.

Ahakoa kāore he rongoā katoa mō te mate Chiari, ka taea e ngā maimoatanga pēnei i te pokanga te āwhina i te whakahaere i ō tohu, te pupuri i a koe kia ora, me te ārai i ngā raruraru morearea.

He aha te tirohanga mō te heke mai me tēnei āhuatanga?

Ko tō tirohanga ka whakawhirinaki ki te kaha me te momo o te mate Chiari. He mea nui kia mahi tahi koe me tō tākuta me te tīma tiaki. Ka taea e rātou te aroturuki i ō tohu me te whakatau i te mahere maimoatanga pai rawa atu māu.

He aha te roanga o te oranga o te tangata e pāngia ana e te mate Chiari?

Mena kāore he tohu, he iti noa iho rānei ngā tohu i muri i te tātaritanga o te mate Chiari, tera pea he roa te roa o tō oranga . Ka mate pea koe i ngā tohu kino me ētahi momo mate Chiari. Kōrero ki tō tākuta mō ngā mea ka tumanakohia i muri i te tātaritanga.

Ka taea te ārai i te mate Chiari Malformation?

Kāore anō kia mōhiotia he huarahi hei ārai i tēnei āhuatanga i tēnei wā.

Mena kei te whakaaro koe kia hapu, kōrero ki tō tākuta mō ngā huarahi hei pupuri i te hauora pai. Tērā pea ka tūtohu tō tākuta kia kai koe i ngā huaora pēnei i te waikawa folic i ia wā, i ia wā . Ka taea e tēnei te whakaiti i te mōrearea o te whānautanga o tētahi pēpi me te spina bifida. Tērā pea ka tūtohu tō tākuta kia whakamātauria he whakamātautau ira , kia mārama ai koe ki tō mōrearea o te whānautanga o tētahi pēpi me tētahi mate ira.

Āhea ahau me toro atu ki te tākuta?

Tirohia te tākuta mēnā ka pāngia koe e ngā tohu o te mate Chiari, mēnā rānei ka kino haere ō tohu. Mēnā he tamaiti tāu he mate Chiari, ā, kāore i te kitea ngā tohu tipu e tika ana mō tōna pakeke, kōrero ki tā rātou tākuta. I muri i te pokanga, mēnā ka kitea e rātou ngā tohu o te mate, pērā i te mamae nui, te pupuhi, te patunga pokanga rānei kāore e ora , waea atu ki tō tākuta.

Āhua ohorere! Mena ka pāngia koe, tō hoa aroha rānei e te mate haurangi mō te wā tuatahi, waea atu ki ngā ratonga ohorere ā-rohe, ki te 1990 rānei i taua wā tonu.

He aha ngā pātai me pātai atu e au ki taku tākuta?

• He aha te momo mate Chiari kei a au?
• He aha te momo maimoatanga e taunaki ana koe?
• Kia pēhea te auau o ngā matawai MRI hei aroturuki i tēnei āhuatanga?
• E taunaki ana koe kia pokanga?
• He pānga taha kei te rongoā?
• Ka pā tēnei ki aku tamariki ā muri ake nei?

Hei whakamutunga, ngā mea hei maumahara (Karere hei tango ki te kāinga)

He rerekē te pānga o te mate Chiari ki te katoa. Tērā pea kāore he tohu, he ngawari noa iho rānei, kāore e tino pā ki ō mahi o ia rā. Tērā pea ka pāngia ētahi e ngā tohu kino, he maha ngā wā ka ngoikore, ā, me pokanga. Ko te rongo pai, he maimoatanga kei reira mō ētahi momo o tēnei mate hei āwhina i te whakaiti i ngā tohu me te ārai i ngā raruraru e morearea ana ki te ora.Ki te kore ō tohu e pai ake, e kino haere rānei, e pāngia rānei koe e ngā raruraru pēnei i te mate pāwera i muri i te pokanga, me waea atu ki tō tākuta. Kaua e manukanuka, mā te tohutohu hauora tika me te tautoko, ka taea e koe te noho angitu me tēnei mate.

Te Kore o te Hanga o Chiari, Te Mate Roro, Te Roro Matua, Te Mamae o te Upoko, Te Pūnaha Roro, Te Wai o te Roro Matua