Hydrocefalus. Čo viete o tejto chorobe?

@lenka23011992 dobry den, mam chlapecka prvorozeneho kterymu byl diagnostikovan hydrecefalus v 35tt tehotenstvi, po narozeni cisarskym rezem sel 7den na magnetickou rezonanci, vzapeti na operaci kde mu byl zavedeny schunt a budou mu za chvili tri roky vyviji se s malym spozdenim, ale na to ze nam dr rikali ze bude jen lezet tak nastesti se to nepotvrdilo, ted tu lita, porad si povida. Museli jsme tedy chodit na konroly, drive byli co mesic ted co ctvrt roky museli jsme i cvicit Vojtovu metodu, myslim ze na to jake jsme meli nervy a problemy vse dopadlo dalo by se rict na vybornou. drzim vam palecky ta vam vse dobre dopadne

Ahojte mamicky.
V juli sa nam narodil maly Lucas. Byvame v USA. V 20. tyzdni mi povedali, ze ma Spina Bifida. Na ultrazvuku bolo vidiet Chiari malformation a clubbed feet. Robili mi amniocentezu, magneticku rezonanciu a mnozstvo ultrazvukov. Odporucili mas do Philadelphie, ale tam mi operaciu nechceli spravit. Sli sme teda do Cincinnati. 28. maja mi robili prenatalnu operaciu. Robili mi rez ako pri cisarskom, vybrali maleho, zasili mu chrbatik a vlozili ho naspat. Tehotenstvo pokracovalo do 33. tyzdna, vtedy sa moj Lucas narodil. Ma sa vyborne. Dycha a papa sam, hybe nohami a prstami. Jazva sa my pekne hoji, este robime catching, ale o taky mesiac to uz nebude potrebne. Zajtra ideme koncne domov.

Preklep, jazva sa mu, nie my pekne hoji.

@kristeena Tak to je paráda, to sa myslím na Slovensku vôbec nerobí. Aspoň som o tom ešte vôbec nepočula. Má aj hydrocefalus, alebo sa mu nevyvinul?

@kristeena Čítam ,to čo sa Vám stalo s úžasom,že aj také veci doktori dokážu. Ja som čakala chlapčeka ,do 29týž. bol úplne zdravý ,no potom sa mu začala hromadiť v hlavičke tekutina,teda hydrocefalus.No u nás,ani v Čechách nič také ,ako operácia dieťatka ešte počas tehotenstva neni možná.Naliehala som na lekárov aj na Slovensku aj v Čechách ,či by sa nedal malý operovať ešte vo mne,aby sa mu hydrocefalus nezhoršoval a neutláčal ešte viac mozgové tkanivo,no všade mi povedali,že také dačo sa nedá,skôr nevedia robiť....

@montek
ano, aj ja ked som ziskavala info, tak som citala forum, kde na otazky mamiciek so spina bifida, hydrocefalom a chiari malformation, odpovedal popredny slovensky odbornik - neurochirurg a tvrdil, ze sa to nikde nerobi, ze to nie je technicky mozne.
LOL
prenatalna operacia vo vseobecnosti, nielen sb sa robi uz cez 30 rokov. v r. 2003 sa zacala studia, kde sa vsetky nemocnice v usa dohodli, ze okrem troch nemocnic - UCSF (San Francisco, CA), Vanderbilt (Nashville, TN), CHOP (Philadelphia, PA) nebudu ziadne ine vykonavat fetalnu operaciu pre spina bifida
mala trvat 10 rokov, ale kvoli ohromujuco dobrym vysledkom skoncila skor, v r 2008!
super, ze?
tolko moj uvod
viac na spinabifidaassociation.com
tu som to skopirovala - vysledky
Surgery of Fetus Reduces Spina Bifida Complications

The Management of Myelomeningocele Study (MOMS) is a study funded by the National Institutes of Health that was started in 2003 to compare prenatal surgery (surgery before birth) with postnatal surgery (surgery after birth) in children who had myelomeningocele (MMC), a form of Spina Bifida. Experimental studies had suggested that closing the opening on the back before a baby with MMC is born is associated with better neurological outcomes. Recently, some findings from the study were published in the New England Journal of Medicine. Click here for article (PDF)

Members of SBA's Professional Advisory Council (PAC) have reviewed these outcomes for both historical and future perspective for the Spina Bifida community. A summary of the outcomes from the study is provided below and a fuller commentary can be downloaded by clicking here.
Origins of the Study
MOMS was a scientific study designed to compare surgery before birth (also called prenatal, maternal-fetal and in-utero surgery) and surgery after birth (also called postnatal surgery) in children with Spina Bifida. It came about because doctors had noticed that nerve function in babies with Spina Bifida seemed to worsen as a pregnancy progresses. This observation suggested that the damage to the nerves of those with Spina Bifida may be a two-part process: some damage occurring when the spinal cord and associated nerves do not develop fully in the first month of the pregnancy with additional damage occurring throughout the pregnancy.

Early studies done in animals seemed to confirm that the amount of nerve damage could be lessened if the open spine was closed early in a pregnancy. This led researchers to want to compare the safety and effectiveness of prenatal and postnatal surgery.

It was determined that the study would seek to enroll 200 women who were carrying a baby affected by myelomeningocele (MMC), the most severe form of Spina Bifida. The affected pregnancies would all be diagnosed with Spina Bifida by ultrasound between the 19th and 25th weeks. In 100 cases the opening in the spine would be closed between the beginning of the 19th and the end of the 25th week of pregnancy. In the other 100 cases, the baby would have surgery to close the opening in the spine after they are born. Participating women were not "selected" for one type of surgery or the other, but rather were to be randomly assigned to one of the groups.

Over 1,085 women were screened for participation and 299 were referred to one of the three study centers for further screening. Women could be excluded from the study for maternal, obstetric, or fetal reasons; the most common of which were maternal obesity, a prior history or risk factor indicators for pre-term birth, or severe spine curvature or other anomalies not associated with Spina Bifida in the fetus. Enrollment concluded at the end of 2010 with 183 women participating in the study.

Findings
On February 9, 2011, the New England Journal of Medicine published the results of the MOMS trial. Below is a breakdown of the outcomes.

Positive Outcomes

Outcome Finding Implication
Hydrocephalus Ventricular shunts were placed less often (40%) in those treated surgically in the prenatal period than in those who had not received prenatal surgery (82%). Since the presence of hydrocephalus is associated with many negative outcomes in individuals with MMC such as learning problems and more dependence, this outcome may have significant positive implications for the future of these children.
Chiari Malformation The children who had prenatal surgery had less evidence of hindbrain herniation (downward displacement of the back of the brain) (64%) than those who had surgery after birth (96%). This suggests that closing the opening on the back before the baby is born equalizes the pressure between the brain and the lower spinal column, which allows the brain to develop in a more normal location. This may be linked with better learning in the future, but it is too early to tell.
Mobility The children who had prenatal surgery were more likely to be walking independently (42%) than those who had surgery after birth (21%). Also, children who had prenatal surgery had better motor function than what would be expected based on the level of the opening of the back. This suggests that closing the back early may prevent some secondary damage (e.g., from the spine being exposed during the entire pregnancy), which preserves nerves that are important for movement.
Intelligence No difference was found between the two groups. The follow-up was short, so this may change in the future.
Urological function These results have not yet been reported. Stay tuned!
Negative Outcomes

Outcome Finding Implication
Premature delivery Premature births (with respiratory problems) were more common in the prenatally treated group (13% were delivered before 30 weeks of gestation). The average age at delivery was 34.1 weeks for babies who had prenatal surgery compared with 37.3 weeks for those who had surgery after birth. Premature delivery is associated with serious problems such as difficulty breathing and even cerebral palsy.
Pregnancy complications One-third of mothers who had prenatal surgery had thinning of the uterus or an abnormal opening (dehiscence) where surgery was performed. Other complications included decreased fluid in the uterus, and problems with the membranes surrounding the baby. These complications may affect the mothers' ability to have subsequent pregnancies.
Tethered spinal cord Infants in the prenatal-surgery group underwent more procedures for delayed spinal cord tethering. Tethering of the spinal cord (tying down from scars) can cause additional loss of function; this could negate the advantages in mobility that were associated with prenatal treatment.
The Study in Perspective
This study is a major milestone in the treatment of children with MMC, and used methods that maximize our trust in the findings (being both valid and reliable). However, the follow-up of the babies at this point is short–many of the results were noted for children at their first birthday. Time is necessary to see how well the positive differences hold up, and to see if side effects might occur. The surgery that was performed requires a tremendous amount of training on the part of the surgeons, as well as a large support team to provide care for the unborn baby and mother after surgery. This type of surgery cannot be performed in any community hospital. The costs of the intervention when compared to the benefits have not yet been discussed. This may be important when trying to decide what type of care should be funded. Finally, the mothers who were chosen for this study were chosen to ensure the best outcomes. The findings cannot be applied to those mothers who did not meet the criteria of the study (e.g., those who are obese).

Reference

Adzick NS, et al.; the MOMS Investigators. A Randomized Trial of Prenatal versus Postnatal Repair of Myelomeningocele. N Engl J Med. 2011 Feb 9. [Epub ahead of print]

ak niekto potrebuje preklad, nie je problem, dajte vediet,
pekny den

ups, je to spinabifidaassociation.org
sorry

@kristeena ahoj moj maly ma meningomyelokelu chrbat ani rebra nema rozstiepeny mame rok nemame hydrocefalus a stvornozkujeme odmala cvicime vojtovku mame trochu nizsi tonus ale chodit budeme 🙂

ahojte mamini mate neaka skusenosty s hydroc.u dirtsta.ale takeho ze nema tlak v hlavicke a ze nema ziadne problemi..dakujem

Ahojky, prosím o radu. Kamarádka je ve 32 tt a na ultrazvuku jí zjistili, že má miminko zvětšenou jednu mozkovou komoru. Rozmezí má prý být 7 - 8 mm a on má 10 mm. V pátek jde na konziliární UZ a má z toho opravdu strach.
Prosím, setkala jste se s tím některá a můžete napsat o co vlastně jde ☹

Děkujeme moc!

Ahoj mam synceka vola sa Samko narodil sa s krvacanim do mozgu a ma Hydrocefalus moj syncek uz ma tri roky a stale nesedi klasicky iba na kolienkach a nevie chodit boli sme uz aj v rehabilitacnom centre Tetis ale moc nam to nepomohlo cvicime snym Vojtkovu metodu.Taktiez nam zistili ze Samko ma skratene slachy na nozickach nevedl by mi niekto poradit co by sme este mohli vyskusat.Samko je nase slniecko je velmi rozumni a vie vela basniciek a pesniciek.Vcera mi moj maly Samko povedal prvy krat mama nauc ma chodit a mna to velmi zabolello pri srdiecku spravila by som cokolvek pre jeho zlepsenie a preto ak viete niekto poradit co este skusit alebo mate podobny problem budem rada ak mi odpisete mamina Helka a Samko 🙂

Ahojte...som 38tt a od 26 tt pozoruju zvacsujuce sa komorky...uz je potvrdeny hydrocefalus a len budeme cakat kym sa maly narodi... komorky mame 21mm..zatial nevieme ci sa k tomu este nieco pridruzi..ale dufam ze uz stavi aj to s cim musime teraz zit...
ja by som sa chcela spytat ake velkosti komorok mali vase deticky a ako sa vam vodi?
Dakujem

@laura1983 ahoj, tretia komora: 15,5 mm, Po pôrode mal operáciu,hlavička ešte stále rastie,maličký sedí (od 11.mesiaca), a teraz už spraví aj prvé kroky (ešte našou pomocou, samozrejme) .

Dakujem... co myslis tym ze hlavicka rastie? Som rada ze teda sedkate..prajem vela uspechov... bojim sa strasne sa bojim :'(

@laura1983 Ahoj ,ja som čakala chlapčeka ,bol zdravé dieťa ,až v 29tt mi zistili hydrocefalus.Vo všetkých správach čo mám doma,je len spomenuté obojstranný hydrocefalus 6mm mozgové tkanivo... Hore hlavu,treba aj sa snažiť myslieť pozitívne ,aj keď to niekedy nejde...

@laura1983 obvod hlavičky má teraz ako trojročné, a ono má iba rok 😠 ale ako montek napísala, treba sa snažiť myslieť pozitívne, detičky sú bojovníci

Nam hlavicka zatial nerastie..je uplne normalna..ale uz aj tretiu komorku mame zvacsenu... sa mi zda ze to z hydrocefalusu prekategorizovali na ventromega..nieco zvacsene komorky..
na veci to nic nemeni ale sme boli v nemocnici v dubline dneska kde sa na nas chysta cely tim odbornikov..dodava to vela energie.. aj optimizmu..ale je dobre s niekym sa podelit o myslienky a vidiet ako sa dari druhym detickam 🙂.

@laura1983 Mne doktor v 30tt povedal,že má hlavičku zväčšenú len ako o týždeň staršie mimčo,čo ma potešilo.No v zápätí mi doktor vysvetlil,že tým ,že malý nemal hlavičku moc zväčšenú,tak mu to viac tlačilo na mozog. Takže mu to viac utlačilo mozgové tkanivo,asi je lepšie keď hlavička rastie aj do väčších rozmerov ,rozostupujú sa švy a neni taký tlak v hlavičke...

Ahojte dievcata....ja mam dvojicky dcerky a jedna z nich ma trojkomorovy obstrukcny hydrocefalus....zistili mi to v 28tt a riadne ma to sokovalo a aj som si riadne poplakala.....ale bola som rada ze mi to povedali a vedela som to hned ako keby som sa to mala dozvediet az po porode....Mala si toho vytrpela bola asi na piatich operaciach ...pri prvej jej zaviedli shunt do hlavicky ale potom sa to nejak stale upchavalo tak musela ist na dalsie...dnes ma kuriatko moje nieco cez rok a je v podstate v poriadku.Zienky nebojte sa ....presne ako ste tu spominali deticky su bojovnici...ja to sama vidim na malej.My sme mali stastie a dakujem panu bohu za to na dobrych lekarov,ktory jej pomohli a neustale sa snazia pomahat.

@laura1983 neboj sa keby tam nieco este bolo tak si myslim zeby ti to lekari povedali...aj ked clovek nikdy nevie...drzim vam palceky a verim ze to bude dobre 😉

@ montek..aj ja som tiez na to myslela ze to mozno nie je az take plus..ale je ako je a budeme musiet bojovat 🙂

Dievcata dakujem vam za odpovede ste zlate 🙂 a cecily vy mate aj suntik zavedeny?

@laura1983 ahoj, nie, zatiaľ nemá(dúfam,že ani nebude). Pondelok ideme do Bratislavy na kontrolu k dr.Hornovi, uvidíme,čo povie.

Hmm..prepac ak sa vela pytam... vies preco mu hlavicka stale rastie? Ta komorka je stale rovnaka? A inac prajem vela stastia na kontrole 🙂

@06 Katka..Katka a ty aj vies rozmer komorky alebo komorok..fakt sorry ak sa vela pytam ale snazim sa co najviac dozvediet..

@laura1983 to je v pohode ze sa pytas....ja som sa nemala s kym takto porozpravat a popytat sa iba s manzelom a blizkymi...vela krat mi manzel musel urcite veci vysvetlit lebo ja som to stale nemohla pochopit...nie neviem ake mala komorky...len viem ze lavu mala vacsiu ako pravu....akurat dnes sme boli na kontrole a mame ist za pol roka aj s CT vysetrenim....ak nebudeme musiet ist skor co ja verim a dufam ze nebudeme.....Niektore deticky ten shunt po case nepotrebuju...ten likvor ktory sa im tam hromadi si moze po case sam najst niekde cesticku a v pohode sa zacne sam vstrebavat....Ak mas este nejake otazky kludne sa pytaj, ak budem vediet a moct tak odpoviem....Drzkajte sa 🙂

@laura1983 rast hlavičky je normálna vec, ako rast iných častí tela. u malého ale rastú aj komôrky ☹ ,aj teraz už sú nad patologickými hodnotami .dnes sme dostali správu od doktora, mám baliť veci ☹ , pondelok možno aj tam zostaneme na operáciu,ale verím,že to tak nebude.

@cecily ahoj ...neviem ci dobre chapem,ma tvoj syncek hydrocefal?ak ano preco mu potom nezaviedli shunt?ved ten likvor sa mu tam musi potom ukladat nie?alebo jemu len rastu komorky?

@cecily tak to mi je naozaj luto ☹ ake su to patologicke hodnoty? Boze drzkajte sa 🙂