Thursday, November 5, 2009

Cari teman 'senasib'

Pengen banget bisa kumpul2 sama teman di indonesia senasib sependeritaan, dengan sesama acoustic neuroma'ers dan sesama penderita lumpuh wajah(facial paralysis)
Selain bisa sharing dan supaya kita merasa punya teman senasib dan tidak merasa menjadi orang dengan muka paling aneh sedunia :P

Selama ini ketemunya sama bule2 aja, itu juga sangat membantu sekali, apalagi kalo ketemu sama teman sebangsa, senegara dan sebahasa ya....
Udah bikin group facial paralysis (lumpuh wajah) indonesia, di FB, semoga ada yang nyangkut deh...

Sunday, November 1, 2009

dealing with facial numbness :(

My face on AN side numbness right after surgery, docs explained that it's due to trauma of sensation nerve, because the tumor was sticky on that nerve.

Dokter bilang bahwa sensation nerve (N.V) itu salah satu saraf yang besar, dan yang terganggu karena operasi kemarin hanya sedikit, jadi kemungkinan besar bisa recover, recovery nya bisa s/d 2 tahun lamanya, mudah2an aku bisa me yaa Allah...

Muka kebas sebelah berasa aneh, kalo gatel trus digaruk ga ngaruh gatelnya tetep...hilks...tapi kalo ada jerawat dipipi muka sebelah kiri trus dipencet ga sakit lho...hehehe..., yang bahayanya kehilangan kontrol mata, karena mata aku kering, biasanya kontrol yang utama justru dari rasa perih dimata, karena mata juga ikut ga berasa skarang kontrolnya cuma warna, kalo mata udah memerah...buru2 pake tetes mata...wah...cape baget...mudah2an Allah SWT memberi aku extra kesabaran dalam menjalani ujian ini, aamien...

Saturday, October 31, 2009

Now that I found you stay...

Tadinya bikin blog ini buat catatan tentang my journey w/ AN, tapi kok malahan pengen curhat about anything else? heu heu... ;)

Duh...udah lama ga dengerin can't take my eyes off of you...,jadi flash back ke 12 tahun yang lalu...remembering someone that really matter to my life, I have story about this song, especially the lyrics... my own story I guess...and this song was the soundtrack of the movie we watched at our first date,

At long last love has arrived…and I thank god I’am alive

Your just too good to be true…,

I need you baby to warm my lonely night

Oh pretty baby don't bring me down I pray...

Now that I found you stay...

Let me love you baby..let me love you...

Thursday, October 29, 2009

Always dzikrullah...

Bismillahirrohmanirrohiim..., lagi nunggu kiddoz parkir di dago asri, dapat tempat lumayan adem dibawah pohon. Miqdad lagi jum'atan, naila lagi di warnet facebook-an ma temen2nya. Tergiur juga nih denger cerita temen yang keranjingan film serial korea, kan asyik tuh sambil nunggu gini nonton film, tapi teringat nasihat guru kita abu amr, jadikan setiap aktivitas kita berdzikir sama Allah SWT, so..mendingan kita terusin hapalan, ayo mulai..Al Mursalaat..audzubillahiminnasyaithaanirodzim...

Wednesday, October 28, 2009


Kenapa baru kini aku menyadari bahwa selama ini aku telah banyak salah menapaki jalan?

Kenapa baru kini aku menyadari betapa bodohnya aku dulu?

Kenapa semua ini baru kusadari pada saat aku tidak bisa berbalik dan merubah jalanku?

Kini aku hanya bisa tertunduk dan menyadari bahwa ini semua adalah takdir dari-Mu yaa Allah yang maha mengetahui yang terbaik bagi hambanya.

-dalam kesedihan karena bandung ceudeum banget..hiks..

Innallaaha ma'ashabiriin...

Its not easy at all for me having paralized face with no sensation on one side, blurry vision and single side deaf, after 3 years i'm just hanging in there...try to grateful for many many other good things that Allah SWT gives to my life.

Pada saat hati tak bisa berkompromi susah untuk berikhlas, berusaha memfokuskan pikiran pada hal yang lain, bersabar dan berpikiran positif bahwa Allah pasti akan memberikan reward atas semua ini dan insha Allah jadi penggugur dosa2 aku ,aamien... innallaaha ma'ashabiriin...

Monday, October 19, 2009

New treatment offers hope for facial paralysis patients

by Lt. Col. Lesa Spivey
59th Medical Wing

1/14/2009 - SAN ANTONIO (AFNS) -- Patients seeking help for facial paralysis have a new treatment option available now offered by doctors at Wilford Hall Medical Center at Lackland Air Force Base, Texas.

Col. (Dr.) Alan Holck and Maj. (Dr.) Manuel Lopez are among only a few military or civilian surgeons in the country who perform a recently developed procedure called temporalis tendon transfer to treat patients suffering from facial paralysis due to conditions such as trauma, tumors, strokes, cancer, some surgeries and Bell's palsy.

The only other physicians who offer this treatment practice at Johns Hopkins Hospital in Baltimore.

The temporalis tendon transfer surgery can be performed in cases where injury to the facial nerve cannot be repaired or the nerve will not naturally recover. The procedure is relatively simple and straight forward. Only taking about 90 minutes to perform using one small incision (three centimeters), the surgery involves taking the muscle (the temporalis tendon) that controls movement and clinching of the jaw and re-inserting it into the musculature of the mouth (corner of the mouth) to restore movement and function.

The process of this dynamic muscle transfer is a promising option for facial reanimation in patients for whom nerve repair, grafting and nerve transfer are not possible.

"Loss of the facial nerve can be devastating and life-changing. The nerve provides motor movement to the face (overall facial animation). It allows you to smile, chew, close your eyes and raise your eyebrows," Dr. Lopez said.

"From the top of the face down, the problem usually starts at the brow which causes problems closing the eye," Dr. Holck said. "Subsequent drying of the eye can result in infections and loss of vision. The midface droops. The corner of the mouth also descends and, therefore, drinking becomes a problem. Patients will drool and have difficulty eating. Food tends to get lodged in their mouths. You become almost a social leper because you don't want to go out and keep having to get up to go wipe your mouth. And among other issues, the tip of the nose deviates and so it is really a problem. It is most importantly a functional issue but also has a devastating cosmetic component."

In addition to the temporalis tendon transfer, Dr. Holck and Dr. Lopez complete their comprehensive treatment by performing any necessary static procedures (pulling, tightening and lifting parts of the face) that do not involve muscles or nerves. Static procedures elevate and give symmetry to the face.

"An operation we'd do commonly is to elevate the eyebrow and that is a static elevation in which we restore symmetry from a droopy eyebrow to a more symmetric eyebrow. The upper eyelid generally doesn't close when you have a facial paralysis so what we do is put a weight, either platinum or gold, in the upper eye, to help the eyelid close to protect the eyeball. The lower eyelid generally won't have tone either (when the nerve is no longer functioning) so we elevate the lower eyelid to narrow the space between the two, for better closure, and we support it. Those are all standard procedures we've been doing as part of our comprehensive treatment," Dr. Lopez said.

The doctors have been performing the temporalis tendon transfer surgery for 16 months and have successfully treated nine patients.

The course of treatment for each patient is determined by a complete, individualized facial assessment in which each patient's deficits are determined.

"No one gets a blue-plate special," Dr. Holck said.

Milan Maymar, a cancer survivor, has benefitted from the successful treatment he received from Dr. Lopez.

"I was very skeptical at first. After consulting five plastic surgeons, Dr. Lopez was the sixth doctor I came to for help. Dr. Lopez' upbeat attitude, encouragement, skills and confidence quickly made me believe it was possible that something could be done to help me. Now that I've had the treatment, my speech has improved and my eye functions better. The results were even better than I anticipated," Mr. Maymar said.

When asked why only a small number of patients have been treated so far, the doctors said the numbers are not greater due to lack of awareness that the treatment is available. Many times, patients are turned away by other facilities and told there is nothing that can be done for them. However, Wilford Hall's team of doctors wants to get the word out and encourage others needing treatment to seek help.

Historically, the treatments for facial paralysis have not been great or long-lasting. But this new procedure, the temporalis tendon transfer, has proven to be a more efficient and effective method. The surgery takes minimum time to perform and the recovery is rapid with dramatic improvement expected within the first week.

"Patient satisfaction has been tremendous," Dr. Lopez said. "We're passionate about it. Just being able to restore function back to them is extremely rewarding for us."