My Blepharospasm Journey 5: The Treatment - Botulinum Toxin

In modern medicine, there is no cure for blepharospasm. But there are ways to manage the symptom. The most common one is the botulinum toxin injection. Ever heard of botox? People take botox injection for beauty purposes. But for blepharospasm patients, it is a live saver. Unfortunately, it is not the case for me.

Remember that blepharospasm means your eyelid muscle is too active that it squeezes a lot until you cannot open your eyelid in a normal way. So injecting botox around the eyelids will help to weaken the muscles around the eyes. After a few days, it will help the person to be able to open their eyes more comfortably. The botox effectiveness usually last for 3 months. Hence, after 3 months, the patient should take another shot. That is basically the lifecycle. So every 3 months, you need to see your doctor to have the injection. If your effectiveness last earlier that 3 months, you still need to wait until 3 months for the next shot to ensure that the botox has fully worn off from your body. 

Now the problem is every person is not the same in terms of the amount of botox and the pattern of injection. The doctor must be very expert and experienced to guess the right pattern for the patients. Even so, there is no guarantee. So it is a trial and error. Based on my reading on the internet and support groups, there are people who are very lucky to get the positive result the first time. But mostly they found the right pattern after 2 or 3 times. There are also patients who waited until 5th time. But there are also patients who have tried many times and finally have to accept the fact that botox is not for them.

I think I am one of them. I have taken botox for 4 times. That is equivalent to one year period. (You can only retry after 3 months). Each time, my effectiveness only lasted for 1-2 weeks. My doctor said, there is no point to continue if it does not help me. So that is the end of me visiting my neurologist.

But I am still hopeful. There are other alternatives that I can try.

I have improved a lot!

Di saat saya kata saya nak start keluar join semula program taman, saya dipertemukan dgn ticernina, jiran yg buat rawatan bekam, urut, akupunture, refleksologi. Dia kata, meh dia cuba buat rawatan.

Di saat saya kata saya kena start teruskan hidup with the new condition, accept, adapt and jalan terus, Allah angkat sakit saya hingga 70% improvement! Subhanallah! Allah Maha Berkuasa atas segalanya... huhuhu..

My Blepharospasm Journey 4: 2nd Opinion

Pada mulanya saya bercadang untuk mendapatkan second opinion di International Eye Specialist Center (ISEC) berdasarkan recommendation daripada Dr Saf, my ex-schoolmate who is an eye specialist. Dah appointment tapi selepas tu dapat recommendation daripada Abg Thor who is also an eye specialist in Unisza. (Sorry tak tau ejaan sebenar abd thor, tapi macam tu la bunyinya hehe). Abg Thor suruh ambik video of my eyes. Dia kata macam bukan blepharospasm. Untuk mengesahkan lagi, dia recommend untuk ke HKL jumpa neuro-ophtalmologist.

Saya jumpa Dr Nurul Ain di HKL. Dia pun kata macam bukan blepharospasm. Sebab mata saya tak spasm. Cuma nampak susah nak angkat kelopak mata. They called it droopy eyelids atau ptosis. Maybe because saya pun complain heaviness in the eyelids. Bukan spasm. Macam-macam test kena buat. Mula-mula buat test untuk vision.. rabun jauh, rabun dekat, rabun warna, dilation, tracking. So far ok. Then dr buat beberapa test untuk MG.  Saya buat 'ice pack testing'. Letak ice kat mata. Kalau MG, sepatutnya lepas letak ice beberapa minit, mata akan boleh dibuka atau improve. Kemudian ambil darah. Tapi result darah kena tunggu next follow up. Saya juga kena ambil darah kat lab luar. Yang ni sebab nak buat test darah yang melibatkan immune system. Kenapa lab kat HKL tak boleh buat ya? saya lupa reason dia hehe. Nasib baik ada Lablink Medical Laboratory depan Hospital Tawakkal, tak jauh dari HKL. Boleh lah selesaikan dalam satu hari tu. 

Selepas beberapa minggu, saya datang kembali untuk follow up. Semua test yang telah dibuat termasuk blood test menunjukkan tiada unsur-unsur penyakit yang melibatkan masalah immune atau antibodi. Jadi kemungkinan besar bukan MG. Dr Ayn mencadangkan untuk berbincang dan evaluate further dengan neurologist. Cuma beliau kata queue panjang di HKL. Beliau recommend untuk jumpa Prof Rabani di HUKM. 

Di HUKM, mula-mula kami berjumpa Dr Chee Yong Chuan. Sewaktu saya menceritakan segala sejarah masalah saya, Prof Rabani pula join. Kami ulang lagi cerita. Kemudian Prof Rabani panggil seorang lagi doctor yang pakar dalam movement disorder, kalau tak silap namanya Dr Shahrul Azmin. Kena ulang balik medical history. Sampai Dr Chee tu pun dah hafal, dia yang terangkan kat Prof-Prof tu. Jadi kami dalam bilik tu macam sedang dalam meeting dengan doctor-doctor ni. Bayangkan tiga orang sekali yang cuba diagnose saya. Tapi yang paling bestnya, bila saya kata ini untuk dapatkan second opinion dan bila bagitau nama Neurologist saya ialah Prof Goh, mereka semua hands down. Mereka semua kenal Prof Goh. Mereka kata Prof Goh tu level sifu/otai neurologist kat Malaysia ni. Hehe.. mana la kami tau. Berani pulak kita mintak 2nd opinion kepada Prof Goh punya diagnosis ya.. hehhe.. Tapi doctors kat HUKM pun professional, tidaklah mereka terus setuju saja dengan Prof Goh. Tapi dalam sessi tu tak dapat kata putus. Mereka minta saya bagi MRI result dari UMSC, dan mereka akan bawa kes ini untuk perbincangan lanjut dalam neurology department. Mereka juga ambil video saya untuk dibincangkan.

Beberapa hari kemudian, saya dimaklumkan yang mereka setuju dengan diagnosis Blepharospasm. And they said that I can continue with Prof Goh, and that I am in a good hands. :) 

Alhamdulillah saya terima diagnosis ini dan boleh focus kepada treatment untuk blepharospasm. Mungkin apa yang memeningkan doktor-doktor ialah tak nampak mata saya spasm atau twitching. Mata saya lebih kepada eyelid heaviness yang menyebabkan saya susah nak buka mata. Kenapa botox injection tak berkesan? Melalui pembacaan saya, ia memerlukan the right dosage and the right spots to inject. Dan setiap orang injection pattern dia tak sama. So kena trial and error. Lagi pulak kena tunggu 3 bulan baru boleh re-try balik. Saya ada join blepharospasm support group dalam Facebook. Banyak juga information dan pengalaman orang lain yang saya dapat. Ada yang kali ke 4 atau 5 baru dapat the right patterns. Ada juga yang memang botox injection not effective on them langsung. Jadi saya tak akan berputus asa. Saya akan teruskan lagi injection sehingga dapat the right pattern untuk saya, insya allah.

Injection saya yang ke-2 dan ke-3 pun masih tak beri improvement kepada saya. Dan semakin lama mata saya semakin susah nak buka mata. Kalau saya cuba buka mata menggunakan tangan, baru nampak spasm tu. Mata saya cuba melawan untuk tutup semula.

Dan kini baru saya akui kehebatan Prof Goh hehe. First time jumpa saya dia terus boleh diagnose dengan betul based on his obervation. Takde blood test, ice pack test. Dia cuma buat physical examination. Memang betul-betul otai. Subhanallah semuanya kurniaan Allah.. Tapi belum cukup otai sebab dia belum jumpa the right pattern untuk saya. Dan injection ini pun sebenarnya bukan cure, tetapi lebih kepada manage. Perlu diambil setiap 3 bulan. Semoga Allah permudahkan segalanya.

Sementara itu, saya juga cuba rawatan alternatif lain seperti rawatan islam, acupuncture, homopathy dan neuroplasticity. Saya harap rawatan alternatif boleh cure masalah saya ini. Insya allah...

My Blepharospasm Journey 3: Myasthania Gravis atau Blepharospasm

Selepas surgeri, alhamdulillah mata kiri saya dah tak rasa berat lagi. Saya boleh buka mata seperti biasa. Namun selepas sebulan, saya mula merasa berat di kelopak mata kanan saya. Alamak, takkan jadi sebelah kanan pulak.

Semasa follow up appointment dengan Dr Faizal, kami berbincang tentang mata kanan saya. Beliau juga buka semula file MRI saya. Beliau kata sebelah kanan ok, tak ada looping salur darah yang menyentuh saraf seperti yang sebelah kanan. Beliau mula suspect Myastenia Gravis.

Myasthenia gravis (MG) is a long-term neuromuscular junction disease that leads to varying degrees of skeletal muscle weakness.^[1] The most commonly affected muscles are those of the eyes, face, and swallowing.^[1] It can result in double vision, drooping eyelids, trouble talking, and trouble walking

(definition from wikipedia)

Kemudian Dr Faizal telah refer saya kepada Neurologist, Prof Goh Khean Jin.

Apabila berjumpa Prof Goh, beliau suspect keadaan saya sebagai Blepharospasm. Tapi beliau minta saya monitor lagi selama sebulan kerana mungkin juga keadaan ini adalah side effect daripada prosedur surgeri yang saya lalui.

Maka saya pun dapat sambung lagi MC selama sebulan. Dalam tempoh itu, vertigo saya semakin pulih, alhamdulillah. Telinga kiri saya semakin boleh dengar alhamdulillah, namun belum back to 100%. Telinga kiri saya ni, sebenarnya dia boleh dengan walaupun kurang sikit, tapi dia tak boleh capture apa orang cakap. Macam dengar radio rosak, macam tulah. Kalau kat tempat yang banyak bunyi atau background sound lagi la saya tak boleh tangkap apa orang cakap. Contohnya kat restoran kan kadang-kadang bising. Orang sebelah cakap pun saya tak boleh nak dengar. kalau dalam keadaan macam tu, telinga kiri saya macam tertutup. Apa-apa pun, alhamdulillah masih boleh dengar. 

Selera makan saya juga semakin ok. Namun mata kanan saya semakin ketara susah nak buka. Dan yang menyedihkan ialah mata kiri saya juga kembali jadi berat dan susah nak buka. Jadi sekarang, dua-dua mata problem. 

Selepas sebulan, kami jumpa Prof Goh semula. Selepas beberapa pemeriksaan, Prof Goh confirm saya ada blepharospasm.

Blepharospasm is a neurologic disorder affecting the muscles controlling your eyelids. It starts off as twitching and can progress to not being able to open your eyes. Injections help many people get relief. Advanced cases may require lifestyle changes due to limited vision.

(https://my.clevelandclinic.org/health/diseases/21546-blepharospasm)

Penyakit ini tiada ubat, namun kita boleh control dengan botulinum toxin injection. Terus kami schedule untuk injection. Saya dapat the first injection pada bulan Sept 2021. Dalam masa seminggu, alhamdulillah mata saya kembali normal. Boleh buka besar. Happynya saya masa tu. Namun kegembiraan itu hanya sementara. Selepas seminggu happy, ia kembali menjadi sebelum ini. Dapatlah merasa nikmat melihat seperti biasa selama seminggu. Tapi injection tu hanya boleh buat 3 bulan sekali. Jadi kalau saya ambik injection pun hanya effective selama seminggu je. 2 bulan 3 minggu lagi saya perlu hadap masalah ini.

Waktu itu, kerja saya ke laut, study saya pun saya kena drop subject, Saya cuba jugaklah maintain 1 subject. Untuk kerja saya masih MC. Saya mula memikirkan untuk apply MBO. Sebab saya tak tau keadaan saya ni sampai bila. Kasihan juga kat bos. Dah la saya baru tukar kerja lepas tu MC lama. Saya mula berbincang dengan HR. Saya juga cuba yakinkan suami. Mula-mula suami keberatan. Dia minta saya apply unpaid leave saja. Tapi saya macam nak juga cuba apply MBO sebab lagipun saya rasa kerja sekarang pun semakin stress. Sebenarnya saya pun tak tau mana tindakan yang terbaik. Tapi saya teruskan juga isi borang MBO. Tiap hari saya doa kat Allah, kalau MBO tu yang terbaik untuk saya, approvekan lah. Kalau tak approve, maksudnya memang itu bukan untuk saya dan saya akan minta unpaid leave saja. 

Berbincang dengan Prof Goh untuk dapatkan surat sokongan, beliau pun kata kes ni susah nak dapat MBO ni sebab ianya tidak melibatkan nyawa. Tapi saya rasa ada strong justification sebab kerja saya melibatkan computer. Memang directly affected. 

Alhamdulillah, selepas melalui beberapa prosedur di pihak TM, akhirnya pada 1 Disember 2021, saya melepaskan jawatan saya di TM. Dalam keadaan yang masih PKP dan sebagainya, tak dapat lah saya berjumpa dengan officemate masa saya hantar passkad dan laptop saya pada 30 Nov. (Maisara escort saya pegi office). 

(photo: last day in TM)

Sementara itu, bagaimana dengan keadaan saya ni? Botox injection nampaknya tak effective. Keluarga cadangkan saya pergi hospital lain for 2nd opinion.

Bila nak sambung My Blepharospasm Journey?

Oh i need to continue my series of My Blepharospasm Journey. But I was just taken over by kemalasan... hehe. 

This Friday will be my 4th injection. During my previous consultation with Prof Goh, he said he want to try adding more injection points above my eyebrows. Let's pray that it works. I desperately need it to work because my convocation is coming next month. Otherwise, i might need to apply for special needs student so that i will not stumble on the stage.. hehe..

My Blepharospasm Journey 2: Hemifacial Spasm

Apabila keadaan semakin meruncing, saya mengajak suami untuk berjumpa lagi dengan Dr Faizal untuk mencari kepastian tentang keadaan saya ini. Dr Faizal membuka semula fail MRI saya. Dr Faizal kata ada salur darah yang tersentuh pada saraf muka saya. Bila salur darah pulsating, saraf akan triggered dan menyebabkan involuntary twitching pada bahagian mata.  Jadi kemungkinan inilah yang menyebabkan mata kiri saya rasa macam nak tertutup saja. 

"What you have here is potentially a Hemifacial spasm."

" Jadi macamana nak baikkan ni, doktor?"

"Boleh try makan ubat. Tapi ada satu lagi cara yang lebih effective ialah kita buat minor surgery. Simple saja prosidurnya"

Beliau lalu mengeluarkan model kepala manusia.

"Kita tebuk sikit kat belakang telinga ni. Lepas tu kita akan masukkan teflon untuk pisahkan blood vessel daripada saraf tadi. Supaya nanti bila salur darah tu berdenyut atau mengembang menguncup, dia takkan terkena salur darah yang menyebabkan twitching pada mata kiri. Awak stay hospital 2 hari untuk prosedur ni, then saya bagi MC 2 minggu"

"Saya bagi dulu ubat, tengok macamana. Awak cuba google Hemifacial Spasm. Cuba tengok sama tak dengan apa yang awak alami ni. Procedure yang saya cerita tadi namanya Micro Vascular Decompression (MVD). Cuba study dulu these two things. Apa-apa keputusan terserah kepada awa sebab awak yang menanggung sakitnya."

Seminggu selepas perjumpaan dengan Dr Faizal tu saya telah buat keputusan untuk meneruskan dengan prosedur MVD. Kerana makan ubat tak jalan. Sebab saya semakin stress tak boleh buat kerja. Sebab saya kalau boleh nak settlekan masalah ni sementara saya baru nak start kerja baru, sebelum saya betul2 masuk gear. Sebab sementara anak-anak semua ada kat rumah, lepas surgery ada la ramai kat rumah boleh tolong jaga saya.

Pada tarikh 26 Jun 2021, saya telah ditolak masuk ke operation theatre. My first ever experience. Prosedur berjalan lancar alhamdulillah. Tapi bila sedar, telinga kiri saya tak dengar. Bila saya buka mata pulak, semua benda berpusing. Saya mengalami vertigo yang teruk. Ada beberapa kali juga saya muntah. 

Sehingga hari ini, saya masih trauma apabila teringat keadaan post-surgery saya masa tu. Tobat la saya... huhu...Awal-awal tu memang saya tak boleh buka mata sebab pening yang amat. Saya tak boleh berdiri/berjalan sebab pening dan tak balance. Telinga kiri pulak tak dengar.  Akhirnya daripada sepatutnya 2 minggu MC, saya telah mengambil masa lebih kurang sebulan setengah untuk recover vertigo saya dan boleh berjalan semula tanpa bantuan. Pendengaran saya pula alhamdulillah bertambah baik tapi tak pulih 100% sampai sekarang. Dr kata mungkin ada tersentuh saraf pendengaran sebab saraf tu memang dekat-dekat. 

Mata saya pulak....

My Blepharospasm Journey 1: How it started

The Headache

It's all started with headache. I don't know if it's related but that is how my problem started. I had frequent headache. It happened maybe once  a month. Usually it was triggered when I missed my afternoon nap or I missed my 10am tea break. When my headache happened, it was only on the left side. And the headache made my left eyelid felt heavy. Sometimes I just couldn't open my left eye. It felt like something was sitting above my left eyelid. And usually I would felt nausea. Mabuk. Ini yg paling tak tahan sebab bila rasa mabuk tu yang tak boleh buat kerja tu. But all these would go away if I sleep. And this has been going on for 10 years... opss... Yeah, I just managed :)

Until Covid came knocking at my door..

The Covid-19

I had Covid in February 2021 when there were no vaccine yet. My symptom was mild alhamdulillah. I thought it was a normal fever because I did not have any close contact to any Covid patient. We were strictly at home  during MCO at that time. Merasa la duduk di MAEPS seminggu. My husband who was also positive did not have to go to MAEPS because he has no symptom during our checkup at CAC. The kids were all negative alhamdulillah. So they were the ones who took care of dad during that trying times, with humaira and maisara were just a few weeks before SPM. Kesian diorang. Nasib baik sempat habis kuarantin before the SPM.

When I recovered from COVID  the headache became more frequent. And when it happened, one night of sleep was not enough to make it go away like before. Sometimes it prolonged until 2 days. I thought it might be also caused by too much screen time and too much work. We were working from home with endless meetings, slides, presentations, etc. I was involved with 2 big projects (Stellar, SNI) which requires me to work a lot with documentations - process simplification, business requirement gatherings. I was also in my 3rd semester of my master study. So with all those assignments, projects, work tasks, slides, etc, I might have overworked myself a bit, now that I looked back. And the headache came unpredicted unlike before. It was not because of lack of food or lack of sleep. It just came whenever it wanted. Managing my headache was getting more challenging.

Occipital Neuralgia

When it becomes more frequent and more unbearable, I set an appointment with Dr Nor Faizal, a neurosurgeon in UMSC. Why neurosurgeon? Actually he is my husband's friend. So it was easy to get his advice even prior to our meeting with him. I had MRI in March. Alhamdulillah there were no abnormalities such as tumor or anything else. After further physical examination, I was diagnosed with Occipital Neuralgia. 

Occipital neuralgia is a distinct type of headache characterized by piercing, throbbing, or electric-shock-like chronic pain in the upper neck, back of the head, and behind the ears, usually on one side of the head. Typically, the pain of occipital neuralgia begins in the neck and then spreads upwards. (definition by The National Institute of Neurological Disorders and Stroke (NINDS))

I was prescribed with Cereblex, a type of pain killer. But it did not help my headache. After further consultation, I decided to get the nerve block injection. It was a very quick procedure. I was injected at the back of my head. The medicine was injected directly into my occipital nerve at two spots. I was dizzy for a few minutes, but that was all. I was on MC for 4 days if I am not mistaken. Yeah my head was kind of feeling numb and funny for a few days. Macam sengal-sengal gitu. Alhamdulillah after that, my condition has improved a lot. The headache has gone. 

The Dengue Fever

It was Ramadhan. Suddenly I felt that I am having fever. It lasted for 4 -5 days. Oh no.. it can't be Covid again. After blood test, it was confirmed that I had dengue. I was admitted in Columbia Asia Hospital for 5 days. My mom said "Kok ada je ko ni. Hari tu baru kena covid, ni denggi pulak". "Habis tu macamana mak, mana iza tau" Well, my mom wasn't saying that because she was angry but because she pitied me.

To make things worse, I was actually just being promoted to a new post in a new division. I had to postpone reporting duty to the new supervisor as I was on long MC. Bad first impression huh.

Heavy Left Eye

Not long after I recovered from dengue, a new problem started which was my left eyes. Remember when I said that when I had headache, my left eyes would felt heavy. Yes it happened again but this time it was without the headache. During this time, my overall health was not very good too. I think my body still not fit after covid and then dengue. My weight was just at 43 kg (my normal weight is 48kg). I lost my appetite. I always felt macam nak demam, badan dedar2 and sometimes palpitation. Selalu rasa kebas-kebas badan/bahu. Senang kena cramp kat kaki, tangan, kadang kat jari pun boleh cramp. Sometimes I felt irregular heartbeat sampai buat checkup dengan cardiologist. But my heart was fine.

My condition get worse day by day especially the eyes. After some time, it was not just the eyelid, but I felt burning sensation at the back of my eyes and around the left side of my head. I really struggling with works and my study because of this. During work, I need to hold my left eyes open to look at the computer. Whenever I had chance, I would lie down and close my eyes praying that it will go away. My work was very slow. There are a lot of things that I cannot do as productive and effective as before. Just imagine what my new boss would think of me. huhu.. I was really in stress mode. 

Is it because of long covid? nerve problem? immune system problem? 

Blepharospasm

 So, it is blepharospasm.

After a series of consultations from neurosurgeons, neurologist, ophthalmologist, neuro-ophthalmologist, movement disorder specialist, from UMSC, HKL, HUKM and Unisza Hospital (if we includes online consultations), it is agreed that the problem that I am having with my eyes is called Blepharospasm.

You might notice that I am always with my eye shades on lately. I have difficulty to open my eyes, I cannot lift my eyelids. My eyes can only open about 5-10 percent. So most of the time I just look down. If I want to look to the front, I need to 'mendongak', or force open my eyes using my fingers. (Yup, suddenly  you might imagine how Mr Bean using matchstick to keep his eyes open :) )

Ujian Allah datang dalam bermacam-macam bentuk untuk melihat sejauh mana kita sabar dan redha. Ya Allah, banyaknya pengajaran dan kesedaran yang saya dapat melalui ujian ini. Subhanallah, setiap kudrat kita walau sekecil mana, walau hanya untuk mengangkat kelopak mata adalah dengan izin Allah. Rupa-rupanya kita ini sangat lemah. Ya Allah.. Masya allah saya sangat bersyukur walaupun ujian ini telah merubah kehidupan saya namun saya sangat-sangat bersyukur kerana Allah masih izinkan saya untuk melihat.. walaupun dengan kepayahan. Ya Allah.. Alhamdulillah Ya Allah... Walaupun saya bagaikan OKU, nak berjalan pun kena pegang tangan orang, namun badan saya sihat, makan saya berselera, tidur saya lena.. ya allah.. masya allah... subhanallah.. alhamdulillah... banyaknya lagi nikmat yg Allah beri yang mungkin adakalanya saya terlupa untuk mensyukurinya.

Benar bagai di kata. Dalam ujian ada nikmat. Betapa banyak nikmat yang saya terima dan yg saya baru sadari, Subhanallah.. ianya satu pengalaman hidup dan satu turning point yang saya amat2 syukuri. 

Subhanallah.. Alhamdulilah... Allahu Akbar..

Ah.. cerita ini sebenarnya sangat panjang.. Nantilah saya nukilkan di lain masa insya allah..

Acupuncture

Hari ni ke Pu Jian Medical Center, Puchong. Mencuba rawatan acupuncture untuk masalah mata saya.

Ikhtiar. Insya allah