Koj tus me nyuam lub hlwb puas muaj teeb meem? Cia peb kawm txog Porencephaly.

Nws yog ib qho ib txwm muaj uas yuav xav tias koj lub nra hnyav heev thaum cov kws kho mob qhia koj txog teeb meem nrog koj tus menyuam txoj kev loj hlob ntawm lub hlwb. Qee zaum, cov lus ntawd, cov mob ntawd, yog qhov txawv heev rau peb. Zoo, muaj ib qho mob tsis tshua muaj hu ua Porencephaly uas koj yuav tsis tau hnov ​​​​dua, tab sis nws yog ib qho tseem ceeb kom paub txog. Cia peb tham txog qhov no yooj yim, hauv txoj kev uas koj tuaj yeem nkag siab, puas yog?

Qhov no hu ua porencephaly yog dab tsi tiag?

Hais yooj yim xwb, porencephaly yog ib qho mob tsis tshua muaj uas cov hnab dej lossis cov cysts, lossis cysts, tsim nyob rau hauv tus menyuam lub hlwb hemispheres vim yog kev puas tsuaj. Qhov kev puas tsuaj no feem ntau tshwm sim thaum tus menyuam tseem nyob hauv plab lossis tsis ntev tom qab yug los. Xav txog nws, peb lub hlwb yog ib yam nyuaj heev. Thaum lub cyst tsim nyob rau hauv nws, nws tuaj yeem cuam tshuam rau kev loj hlob thiab kev ua haujlwm ntawm lub hlwb. Qhov no tuaj yeem ua rau qee tus menyuam muaj teeb meem hais lus lossis lwm yam kev puas tsuaj ntawm lub paj hlwb .

Tus mob no feem ntau tshwm sim li cas?

Qhov tseeb, tus mob no hu ua Porencephaly yog ib qho mob tsis tshua muaj . Tsis muaj cov ntaub ntawv tseeb txog pes tsawg tus menyuam hauv ntiaj teb muaj tus mob no. Tab sis nws tuaj yeem cuam tshuam rau cov ntxhais thiab cov tub ib yam nkaus.

Puas muaj cov hom mob porencephaly tseem ceeb?

Yog, muaj ob hom tseem ceeb ntawm qhov no.

• Kab mob Porencephaly uas tau txais: Qhov no yog hom kab mob uas feem ntau tshwm sim. Nws yog tshwm sim los ntawm kev puas tsuaj rau lub hlwb thaum lub sijhawm tus menyuam lub hlwb loj hlob.
• Kev mob qog nqaij hlav caj ces (genetic Porencephaly): Qhov no yog ib qho mob tsis tshua muaj. Nws tuaj yeem tshwm sim los ntawm kev hloov pauv caj ces .

Vim li cas qhov no thiaj tshwm sim rau peb tus menyuam? Yog vim li cas?

Muaj ntau yam ua rau qhov no. Cov laj thawj no kuj sib txawv nyob ntawm ob hom uas peb tau tham ua ntej.

Cov Ua Rau Muaj Genetic

Txawm hais tias tsis tshua muaj, qhov mob no tuaj yeem tshwm sim los ntawm kev hloov pauv, lossis kev hloov pauv caj ces, hauv qee cov noob caj ces (piv txwv li, cov noob caj ces 'COL4A1' lossis 'COL4A2 '). Cov noob caj ces no tseem ceeb heev rau kev tsim cov protein uas muab lub zog rau ntau yam nqaij hauv peb lub cev. Yog li, yog tias muaj qhov tsis zoo hauv cov noob caj ces no, nws tuaj yeem cuam tshuam rau cov qauv ntawm cov nqaij thiab ua rau muaj tej yam zoo li cov cysts uas tau hais hauv lub hlwb.

Cov laj thawj tau txais

Qhov no yog hom mob uas feem ntau tshwm sim. Qhov uas tshwm sim ntawm no yog tias cov ntshav ntws mus rau lub hlwb ntawm tus menyuam raug cuam tshuam. Qhov no tuaj yeem tshwm sim los ntawm qee yam zoo li mob stroke , tsis muaj oxygen mus rau lub hlwb, lossis los ntshav hauv lub hlwb. Qhov kev puas tsuaj no tuaj yeem tshwm sim thaum tus menyuam tseem nyob hauv plab, thaum yug los, lossis ntev tom qab yug los.

Thaum lub hlwb tsis muaj oxygen los yog los ntshav, cov kua dej uas puv nkaus (cysts) yuav tsim ntau dua los hloov cov ntaub so ntswg ntawm lub hlwb ib txwm muaj. Qhov no yog qhov tseeb tshwj xeeb yog tias koj muaj cov yam ntxwv hauv qab no:

• Haus dej cawv los yog siv yeeb tshuaj thaum cev xeeb tub. Qhov no yog ib yam uas yuav tsum zam.
• Kab mob ntshav qab zib thaum cev xeeb tub. Yog tias koj muaj tus mob no, koj yuav tsum ua raws li koj tus kws kho mob cov lus qhia kom meej.
• Cov kab mob hauv leej niam thaum cev xeeb tub.
• Cov kab mob uas tshwm sim tom qab tus menyuam yug los.
• Kev raug mob thaum yug me nyuam.
• Lwm yam ua rau cov ntshav tsis txaus mus rau lub hlwb suav nrog qee yam kab mob ntshav thiab cov kab mob metabolic .

Qee zaum, cov kws kho mob tuaj yeem tau txais lub tswv yim ntawm qhov ua rau muaj qhov teeb meem raws li qhov chaw uas cov cysts nyob, lawv qhov loj me, thiab lawv kis tau dav npaum li cas.

Cov tsos mob ntawm tus mob no yog dab tsi? Peb yuav paub nws li cas?

Cov tsos mob ntawm tus kab mob porencephaly yuav txawv ntawm ib tug me nyuam mus rau ib tug me nyuam. Lawv kuj txawv ntawm qhov hnyav npaum li cas thiab thaum twg lawv pib. Kev puas tsuaj ntawm lub paj hlwb nyob ntawm seb cov cysts nyob qhov twg hauv lub hlwb thiab lawv loj npaum li cas. Qhov no zoo ib yam li mob stroke.

Nov yog qee cov tsos mob uas feem ntau tshwm sim:

• Kev hais lus qeeb thiab hais lus qeeb. Qee zaum, tib neeg yuav tsis hais lus tau thaum lawv laus zuj zus.
• Kev loj hlob ntawm lub cev qeeb. Piv txwv li, pib taug kev lig.
• Kev loj hlob ntawm kev xav qeeb.
• Kev loj hlob ntawm zej zog qeeb.
• Lub taub hau loj dua los yog me dua piv rau qhov loj ntawm lub cev.
• Cov leeg nqaij tsis muaj zog (Hypotonia). Tus menyuam lub cev yuav zoo li qaug zog heev.
• Kev tsis muaj zog hauv lub cev.
• Teeb meem ua cov ntaub ntawv kev xav. Piv txwv li, kev hloov pauv hauv txoj kev uas tib neeg teb rau kev kov lossis suab.
• Qaug dab peg. Qhov no yog qhov peb paub tias yog qhov haum.

Qhov tseem ceeb yog tias tsis yog txhua tus menyuam muaj cov yam ntxwv no. Tej tus menyuam tsuas muaj ib lossis ob tug ntawm cov yam ntxwv no xwb, thaum lwm tus muaj ntau yam.

Qhov no ua rau muaj teeb meem dab tsi ntxiv?

Qee zaum, qhov porencephaly no ua rau cov kua dej nyob ib puag ncig lub hlwb thiab tus txha caj qaum ua pos huab, uas txhais tau tiasCov kav dej uas cov kua dej cerebrospinal (CSF) ntws tuaj yeem raug thaiv. Qhov no ua rau cov kua dej sib sau ua ke thiab tsim kev nyuaj siab nyob ib puag ncig lub hlwb. Qhov no hu ua hydrocephalus . Yog tias qhov kev nyuaj siab no nce ntxiv, cov tsos mob uas twb muaj lawm yuav hnyav zuj zus lossis cov tsos mob tshiab yuav tshwm sim. Piv txwv li, mob taub hau, ntuav, thiab teeb meem pom kev yuav tshwm sim.

Tsis tas li ntawd xwb, vim tias mob porencephaly tuaj yeem ua rau qaug dab peg, cov menyuam no yuav muaj feem mob qaug dab peg ntau dua. Ib txhia menyuam kuj tseem yuav mob cov leeg nqaij spasticity , uas yog ib qho mob uas cov leeg nqaij tawv thiab tawv.

Cov kws kho mob kuaj mob li cas?

Feem ntau, cov menyuam yaus uas muaj tus kab mob porencephaly qhia cov tsos mob ntawm tus mob tsis ntev tom qab yug los. Muaj ntau tus menyuam yaus raug kuaj pom tias muaj tus mob ua ntej lawv muaj ib xyoos. Qee zaum, cov cysts no tuaj yeem pom ntawm daim duab ultrasound ua ntej yug menyuam thaum tus menyuam tseem nyob hauv plab. Hauv qhov no, tus kws kho mob tuaj yeem kuaj pom tus mob ua ntej tus menyuam yug los.

Yuav kom paub tseeb tias kuaj tau tus mob, tus kws kho mob yuav tsum tau saib cov duab ntxaws ntxaws ntawm koj tus menyuam lub hlwb. Yuav ua li no, koj lossis koj tus menyuam yuav tsum tau kuaj xyuas zoo li no:

• Kev kuaj mob ultrasound.
• Kev luam theej duab CT.
• Kev kuaj MRI.

Puas muaj kev kho rau qhov no? Yuav ua li cas thiaj tswj tau qhov no?

Yog hais qhov tseeb, tsis muaj tshuaj kho tau tus kab mob porencephaly. Txawm li cas los xij, muaj ntau txoj hauv kev los tswj nws cov teebmeem. Kev kho mob feem ntau yog tsom mus rau kev txo cov teeb meem ntawm lub paj hlwb uas tshwm sim.

Piv txwv li, yog tias koj muaj tus mob uas peb tau tham txog, hydrocephalus, cov kua dej ntau dhau uas tau sib sau ua ke nyob ib puag ncig lub hlwb tuaj yeem raug tshem tawm.

Nov yog qee cov kev kho mob uas tuaj yeem pab tus menyuam:

• Tshuaj tiv thaiv qaug dab peg. Tswj qhov pib ntawm qhov mob.
• Tshuaj kho kom cov leeg nqaij nruj dua.
• Tshuaj kom txo qhov mob.
• Kev Kho Mob Lub Cev: Ua kom cov leeg ntawm lub cev muaj zog thiab ua kom yooj yim txav mus los.
• Kev kho mob hais lus. Kov yeej qhov teeb meem hais lus.
• Kev kho mob ua haujlwm: Xyaum ua tej haujlwm txhua hnub ntawm koj tus kheej.
• Qee zaum kev phais kom tshem tawm cov cyst tuaj yeem ua tau.
• Kuj tseem yuav phais kom cov kua hauv lub hlwb ntws tawm ntau dhau los tshem tawm cov kua hauv lub hlwb txha caj qaum ntau dhau.

Qhov tseem ceeb yog tias tsis yog txhua yam kev kho mob no yuav tsum tau kho rau txhua tus menyuam. Cov kws kho mob yuav txiav txim siab seb yuav kho qhov twg zoo tshaj plaws raws li tus menyuam tus mob.

Yav tom ntej yuav zoo li cas rau ib tug me nyuam uas muaj tus mob no? (Kev kwv yees)

Qhov no nyuaj hais me ntsis. Vim tias qee tus menyuam uas muaj tus kab mob porencephaly muaj teeb meem ntawm lub paj hlwb. Tab sis qee tus menyuam tuaj yeem ua neej nyob li qub yam tsis muaj teeb meem dab tsi. Qhov hnyav ntawm cov tsos mob sib txawv ntawm ib tus neeg mus rau lwm tus.

Yav tom ntej ntawm ib tug me nyuam nyob ntawm seb cov cysts hauv lub hlwb loj npaum li cas, lawv nyob qhov twg, pes tsawg lub cysts, thiab lawv cuam tshuam li cas rau txhua tus me nyuam. Txawm li cas los xij, yog tias kuaj pom thaum ntxov thiab kho thiab kho kom zoo, ntau tus me nyuam tuaj yeem ua lub neej zoo thiab muaj txiaj ntsig.

Puas tiv thaiv tau tus kab mob Porencephaly?

Qhov mob no yeej tsis tuaj yeem tiv thaiv tau tas li. Vim tias nws nyuaj rau peb tswj cov yam uas tshwm sim los ntawm cov yam ntxwv caj ces. Txawm li cas los xij, kev xeeb tub kom noj qab nyob zoo tuaj yeem txo qhov kev pheej hmoo ntawm koj tus menyuam kom muaj tus mob no rau qee qhov.

Nws yog ib qho tseem ceeb heev uas yuav tsum tsis txhob haus dej cawv lossis siv yeeb tshuaj ntau dhau thaum cev xeeb tub. Yog tias koj muaj ntshav qab zib thaum cev xeeb tub, ua raws li koj tus kws kho mob cov lus qhia kom zoo. Koj kuj yuav tsum sim tiv thaiv koj tus kheej ntawm kev kis kab mob.

Kev mob qog nqaij hlav caj ces (genetic porencephaly) yog ib qho mob uas qee zaum yuav kis tau rau ib tug menyuam yog tias ib tug ntawm cov niam txiv muaj cov noob caj ces hloov pauv . Kev kuaj noob caj ces tuaj yeem pab txiav txim siab seb koj lossis koj tus khub puas muaj cov noob caj ces. Kev tham nrog tus kws pab tswv yim txog noob caj ces tuaj yeem pab koj nkag siab txog koj qhov kev pheej hmoo ntawm kev kis cov noob caj ces mus rau koj tus menyuam.

Lub sijhawm twg ntxiv uas koj yuav tsum mus ntsib kws kho mob?

Yog tias koj tus menyuam tau kuaj pom tias muaj lossis xav tias muaj porencephaly, koj yuav tsum mus ntsib kws kho mob tam sim ntawd yog tias muaj cov tsos mob hauv qab no tshwm sim lossis hnyav zuj zus:

• Mob taub hau
• Ntuav
• Teeb meem nrog kev sib npaug lossis kev sib koom tes
• Qaug dab peg/mob taub hau
• Kev tuag tes tuag taw ntawm ib feem ntawm lawv lub cev
• Kev hloov pauv ntawm qhov muag pom kev

Cov lus nug tseem ceeb uas yuav nug tus kws kho mob yog dab tsi?

Koj tuaj yeem nug cov lus nug rau tus kws kho mob xws li:

• Yog tias peb muaj ib tug me nyuam ntxiv, muaj feem ntau npaum li cas uas tus me nyuam ntawd yuav muaj tus kab mob porencephaly?
• Puas yog ib lub tswv yim zoo rau peb tsev neeg mus kuaj noob caj noob ces?
• Puas yog kuv tus menyuam yuav tsum tau phais kom tshem tawm cov cysts lossis cov kua dej ntau dhau ntawm nws lub hlwb?
• Cov kev kho mob zoo tshaj plaws los pab kuv tus menyuam daws teeb meem kev loj hlob qeeb yog dab tsi?

Thaum kawg, ntawm no yog cov niam txiv hais li cas ... (Cov Lus Coj Mus Tsev)

Kab mob Porencephaly yog ib yam mob tsis tshua muaj. Cov menyuam uas muaj tus mob no muaj peev xwm muaj kev tsis taus ntawm lub cev thiab lub hlwb, qee zaum tsis hnyav, qee zaum hnyav heev. Tab sis nco ntsoov, yog tias kuaj pom thaum ntxov thiab kho thiab kho mob tsim nyog, ntau tus menyuam tuaj yeem ua neej zoo, zoo siab, thiab vam meej. Koj tsis nyob ib leeg, cov kws kho mob, cov kws kho mob hlwb, thiab ntau lwm tus neeg nyob ntawd los pab koj thiab koj tus menyuam. Qhov tseem ceeb tshaj plaws yog tsis txhob tso tseg kev cia siab thiab muab kev hlub, kev saib xyuas, thiab kev txhawb nqa rau koj tus menyuam uas lawv xav tau.

Kab mob Porencephaly , cov kab mob hauv lub hlwb, cov kab mob thaum yau, cov kab mob caj ces, cov kab mob ntawm lub paj hlwb, kev loj hlob qeeb