人工耳蝸

DaisyWong

有冇過來媽咪可以分享吓，我阿B可能需要做這手術，個心   :cry:  

dream_cool00

DaisyWong
我bb2 months old剛剛check 到右耳聽唔到野，我周圍揾耳鼻喉医生，結果佢幫唔到我仲waste左我成萬蚊，，其實bb細做可以幫到佢同正常人一樣聽野，我好明白你心情，但bb要我地幫佢，我地要積極d,唔好比bb知我地唔開心。係呢，你bb係邊隻耳有事，你又点肯定佢有事呢？

稚言治語

子喬媽媽：

如果醫生叫子喬做，那照做便可。

植入人造耳蝸之後，很多小朋友都可以"重獲"聽覺(當然需要訓練﹗)，對學習、溝通、語言發展、社交等都是很好的。

angelmamamia

Dear Daisy,

My dear Angel had an operation for her ear when she is still about 2 years old. The operation is called "cochlear implant", I think it is very similar to the operation that your doctor mentioned to you!

At first, I was as sad as you are, but thanks god that the doctor can realize her problem so early and did the operation. She is now 6 years old now.....that's a long road to run! And she is a lovely and socially active girl now... :

Which hospital are you going to have the operation?
Personally, I have very good impression to the Prince of Wales hospital.....the team of doctor are very good to my girl ....and they are very careful . They will refer the kids after operation for detailed "Ear-nose-throat" doctors' follow up and for speech therapists' follow up!
One more thing, after the surgery, the kids will always need speech therapy, I have a very good suggestion (who teach my girl before when she works in the hospital), she's now a professor in CUHK and very experience in teaching children with ear problem/hearing problem....

No worries, god will lead us the way

MarchK

Hi Daisy,

其實有機會做呢個手術係件好事,我從"聽障家長聯會"中認識幾位做咗手術的小朋友同家長,佢哋做完手術後聽得多咗,可以開口講嘢. 不過部份人做完會成日頭痛.我知"聾福"有做過對做咗人工耳蝸手術後的調查/問卷,都幾詳細,你可以問吓佢可唔可以fax俾你.

DaisyWong

Hi BK mums,

多謝大家嘅回應. 其實我地唔係100%抗拒人工耳蝸手術, 不過教處聽力學家話bb戴耳機後, 表現理想(我地都咁覺得佢對聲音敏感佐), 佢話人工耳蝸手術會係marginal case.  

但瑪麗就話睇bb ABR TEST RESULT, 覺得應該要做(當然仲要做一連串test再決定）, 所以我地咪十五十六囉

angelmamamia　：　可唔可以多d上嚟share吓, 前路好似
仲好慢長

MarchK　：　你bb而家點呀?

Thx.
Daisy

angelmamamia

Dear Daisy,
Yes, the road is very long........but give more confidence to our kids and ourselves!

hm....in your case, that's quite difficult to decide because that's a marginal case! But I think just let the doctors to perform some more tests!! Actually, cochlear implant is a surgery....if not necessary, it will be better not to have it!

And after the cochlear implant, though Angel can detect the sounds, she has very strange speech sounds....like some strange machine...doctors said that's the negative sides for artificial cochlear!!
She's still learning the proper tones of Cantonese from her speech therapist!

Of cause I will and do like to share more with you!
I will support you anyway....
Be positive!!
Angel Ma

MarchK

Daisy,

栗子唔用耳機都聽到"聲音"(高音同低音都有反應),但都唔知係好定壞消息! 聽力學家話他對聲音有反應,但可能聽到o既"聲音"會失o左真,唔同一般人所用收到o既聲音.呢種叫做"神經性失聰"(AN),接收到聲音,但個腦分析/分辨唔到聲音,所以人工耳蝸對他來說作用不大/無咩效.最後可能要用手語溝通.

但暫時仲係估估O下,要BB到兩歲多先確定到他弱聽o既情況!希望有轉機啦! 有時我仲有幻想,會唔會有奇蹟出現,他只係個腦未發育好,遲o的會無事.

DaisyWong

Hi angelmamamia,

瑪麗嚟緊會同BB安排一連串評估，睇吓到時點講啦。BB呢排開始好抗拒戴機，之前都仲可以分散佢注意力，快手快脚攪掂，但而家佢一見到我哋坐近佢有所行動，就會狂拎頭，佢又咁細，想同佢講道理都唔得。

我哋而家上緊EETC，一星期一次，遲d有需要揾私人教授，再揾你幫手。我想問戴機同做人工耳蝸，係日常生活同聽聲方面，會唔會有好大分別? 係咪有好多地方要特別注意?  我哋之後會見遺傳科，因為我都好想知BB點解會咁，醫生話都唔知原因，你哋之前有冇去做過呀？

Hi MarchK,

栗子應該仲好細，點解可以知佢分辨唔到聲音嘅意思? 唔好太過担心，俾太大壓力自己，bb仲咁細，好多嘢都可以發生呢！

christyts

原文章由 DaisyWong 於 06-1-21 22:06 發表
有冇過來媽咪可以分享吓，我阿B可能需要做這手術，個心   :cry:    

如果醫生提議植入耳窩，就應該把握機會趁早做。如生理情況許可，最好於學前植入。曾經接觸過部份聽障生因錯過了在年幼植入耳窩的黃金檔期，所以一直所聽到的聲音都是模糊不清，以至其言語表達也只能依樣發出那些模糊不清的發音(如「老師」聽作「澳He」，說話時也只能依樣說「澳He」)，旁人根本無法理解溝通，對學習、工作、社交，以至自我價值觀都有終生的嚴重影響。

也有接觸過在入學後(如小學)才接受手術的聽障生，他們都反映適應期是很痛苦和漫長。因為手術前所學到的，在手術後要重新學一次(如跟他們說「老師」，他們會完全摸不著頭腦，因為一直聽到的都只是「澳He」)，你可以想像情況就像突然置身於另一個語言的外國地方，聽不明也說不準。

另一方面，也有其他重要的考慮，如所用耳窩的種類，維修費用和地方(有些是在外國的！)；此外，還需要有心理準備，他日若不幸遇上意外而牽涉腦部的話，植入的耳窩也會有受影響的可能……

個人建議，如果小朋友評估後發覺有中度至深度的聽障，就應該好好考慮接受手術了。有不少聽障生的家長都反映聽力不單止會慢慢下降，有少部分深度聽障生是一覺醒來，連剩餘的聽力都失掉。而有些聽力下降或全失是連聽力學家都不能解悉的，只知道壓力大是其中一個影響因素。

抱歉好像說了很多恐嚇的說話，只是從個人經驗知道，學前的治療和訓練對聽障生是很決定性的。切記和家人細心商量和與醫生好好溝通。加油！

MRS.MAK

My bb is profound hearing loss. However, after wearing hearing aids, she response quite well to sound. She is less than one year old. If she can learn how to speak with the hearing aids, do u think she should have 植入耳窩??

christyts

如果雙耳都Profound，而醫生又同意，就應該考慮植入。

因為雖然耳機或FM機都能令弱聽童對聲音產生反應，但他們所聽到的其實是十分有限，除前文所提及的情況外，很多高頻音(如英文的s/t音)，他們是可以完全聽不到的，而且說話時的聲調也會有偏高的情況。另一方面，一些複習的語句(尤其是英語及數值)，單靠耳機是聽不清的(如3414這數值)，只能依靠唇讀去理解。有些聽障童是因為要用心聽和專心讀唇太費神，索性把耳機關掉的情況也是有的。所以深度聽障對學習和工作表現、社交都有大的負面影響。

趁孩子還小，要是經濟情況許可，請找醫生好好商量吧！