Three Surgeries in One Month

Since my previous blog update on 9th January 2016, I have discussed further with my neurosurgeons and understood my situation better.

Here is a summary of what we are going to do.

On 12th January 2016, we will remove a growing tumor from the front, right side of my brain’s cerebral cortex, which is near the motor center of my brain. The sheer size of it has been causing me moderate headaches when I get stressed or tired. While speaking with a doctor here at the NIH, I also realised that this tumor has been affecting my left leg control. For awhile now, I have been using my right leg to support my weight and exert strengh, while my let leg merely follows after. This is a symptom of the tumor compressing motor neurons in the brain that control the left side of my body.
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Surgery risk is remote for this tumor and my surgeons are confident that I will emerge fine and well.

After removing this brain tumor, we will proceed to perform another surgery days later – to remove a tumor from my right hand’s middle finger, which hurts me by itself. This procedure might be done without sedation.

Then, we will perform a third surgery, two weeks after the first surgery. The third surgery is to remove a growing Vestibular Schwannoma from the right side of my brain’s temporal lobe. This tumor is also called the Acoustic Neuroma.

I first had this tumor on this side removed back in 2004. More than ten years later, now, a new tumor of its kind has grown in the same location, which has been causing me to choke more over the past one year.

While the first removal in Los Angeles in 2004 could be done without damaging surrounding tissues, a second surgery in this location carries higher risks this time. There is a real concern for possible facial nerve paralysis and worse swallowing function.

But the consequences of delaying this VS tumor removal is even worse – diffuculty in breathing, as it has already pushed my brainstem out of line.

In times like this, I have to muster all the faith I can, and hold on tightly to hope.

Lord. grant me the strength to accept the things that I cannot change, courage to change those that I can, and wisdom to tell the difference.

By the way, you can send flowers to my room to keep me compsny during the next few weeks while I am here. I love roses and daisies.

Send to:

Ming Niang (Yvonne) Foong
Room 7-3628SW (B)
National Institutes of Health Clinical Center
10 Center Drive
Bethesda, MD 20892
USA

Brain surgery planning for NF2 – Slow and Steady wins the race.

I am currently in Bethesda, Maryland, to receive medical treatments. Arrived in Washington D. C. On 5th January 2016 and stayed at the Bethesda Court Hotel for 2 nights. On 7th January, I checked out of the hotel and moved to stay in the Safra Family Lodge within the NIH campus where I was supposed to stay for the next three nights.

Today, on the morning of 8th January 2016, I came over to the Clinical Center – underwent Opthalmology examinatioms and learned that my right optic nerve has become very faint, which may be why my vision is now more difficult and blurry. My right eye is also producing discharge so a sample of the discharge was taken and sent for laboratory tests to ascertain the cause.

In the afternoon, a pre-op MRI was done to evaluate my brain more thoroughly than the one I did in Malaysia last October. The new MRI showed that there is another brain tumor beside the one we were originally concerned about, that could also be affecting my vision, so we did an additional CT scan of the brain, and tomorrow, we will do a second brain MRI to evaluate further and determine which tumor we need to remove first.

Besides these tumors at my cerebral cortex, MRI also showed that an Acoustic Neuroma in my right auditory canal is now compressing my brainstem and may be the reason I choke on food and liquid more frequently than before.

Tomorrow’s further MRI evsluation will help us decide which tumor we ought to address first, in the order of priority ly and necessity.

My Neurosurgeon this time will be Dr. Prashant Chittiboina MD. From Lousiana State University.

I miss eating Gumbo!

Surgery will take place on 12th January 2016 in the U.S. National Institutes of Health Clinical Center.

Ye

Listen to my story at HSG Community Charity Carnival, Taman Yarl

Dear all supporters and friends of the Neurofibromatosis in Malaysia cause.

This Sunday on 13th December 2015, a community charity carnival in Taman Yarl will be raising funds to help my cause named Works of Gratitude, build an NF foundation in our country.

I will also be giving a 1.5 hour talk about my life and journey as an NF patient, and what led me to want to build a foundation and help other patients in need.

Do come attend the talk if you can, and have some fun at the carnival too.

Talk time: 11.30am till 1pm

Venue: Hall 1

Carnival hours: 11am till 5pm

Address: His Sanctuary of Glory, 10 Jalan Awan Berarak, Taman Yarl, 58200 Kuala Lumpur

Hope to see you there!

Audrey fixes me and helps us raise funds for charity

Audrey Yeoh and Yvonne Foong 5th Sept 2015

Audrey Yeoh and Yvonne Foong 5th Sept 2015

In the 1st week of September 2015, I visited the ancient temples of Prambanan and Borobudur in Central Java, where I walked much more than I normally did, and on challenging terrains – especially in Prambanan. By the end of Day-2, my legs hurt badly and felt as though they were out of alignment. Nevertheless, I persevered despite the pain and climbed up to, at least the first level of Borobudur on Day-3. That strained my legs and muscles even further, but I must see these UNESCO world heritage sites after coming all the way from Kuala Lumpur.

When I returned home to Malaysia in the evening of Day-4, I messaged my friend on Whatsapp immediately and made an appointment with her for the following day.

She was Audrey, and she’s a rolfer. I needed her to fix me, as I could hardly stand steadily or walk straight.

When I met Audrey at her office in Taman Tun Dr. Ismail the next day, Audrey restored my lower body’s midline and centered me, by placing her palm underneath my sacrum. I felt heat, and then, viola, I could walk steadily again!

After my body structure was restored using rolfing techniques, Audrey checked what else I needed and moved to my abdomen. There are surgery scars here from the years of 2004 and 2006. Doctors removed the mastoid of my head to access my brain back then. After surgery, they took some fat from my abdomen to replace the removed mastoid before adding a titanium plate as well.

The fat removal was deep and caused adhesion to other layers of my muscles plus my small intestines. Audrey remedied this by placing the pad of her index finger against my skin and traced it along the scar. I felt as though a knife was cutting thru me. Audrey relieved the internal adhesion with just her finger pad against my skin!

Prior to that visceral manipulation, my small intestines were all crammed up. With the relieve, I could feel my physical energy flowing throughout my body much better. The relieve improves my digestion too.

On my very first visit with Audrey at the end of July, she fixed a problem I had obliviously been living with since my first spine surgery at age 16. Some nerves at my upper thoracic spinal cord were injured in surgery. These nerves connect to my right leg muscles. I feel as though the nerves were tightened and shortened ever since. Over time, my right leg became out-turned and I began to put more weight on this leg than the other to compensate for the new walking difficulty.

Audrey noticed my leg was out-turned by observing how I walked. So she fixed it. By holding my foot with one hand and my thigh with the other, she ‘reprogrammed’ my fascia at the hip joint, so that my leg ‘remembered’ it’s original position and slowly moved back by itself over the next few days.

Sounds like magic, right? These techniques are called rolfing and visceral manipulation, of which, Audrey is naturally good at.

My schoolmate, Kim Tan, also came along after our Borobudur trip as her legs were also hurting. Kim was impressed by how much Audrey could fix in one short session!

Apart from fixing us, Audrey is also helping my team and I to raise funds for building a charity foundation in Malaysia. We need a total of RM1million to set it up, so Audrey decided to help us, by offering her services to FIVE people, at a package price of RM2,500.00 per individual, for ten sessions of Rolfing and, if needed, Visceral Manipulatiom.

Ten sessions can fix a lot! So you will definitely get your money’s worth.

The five people who take up her offer will, in effect, help us raise a total of RM10,000.00 for charity.

If you are keen, please message Audrey on Whatsapp directly to check whether she can treat your condition. She will reply you whenever she can.

Audrey Yeoh +6012-3233218

For info about the foundation, visit www.WorksofGratitude.com

How to seek financial aid – know what you need first

Yesterday, a Malaysian woman messaged me on Facebook asking for advice on acquiring financial aid to seek treatment for her rare disorder called Superior Mesenteric Artery Syndrome.

Basically, her GI tract and associated organs hurt badly whenever she eats. It started happening in the recent few years out of a sudden. She went to see numerous and various local medical specialists to find out what was going on, but none could be sure what was causing her problem. The above-mentioned diagnosis was only suggested to her after two years of intensive searching. One doctor she saw at the University of Malaya Medical Center performed gastric-bypass surgery on her, but the procedure did not help her condition, so she continued to live in agony. She lost a lot of weight from the lack of food and nourishment.

She looked up her condition on the internet and learned that there are medical doctors who specialize in the treatment of this disorder overseas – such as the John Hopkins and Mayo Clinic in North America. She sought me out to ask if there are any organisations she can approach to get financial aid for treatment overseas.

My advice for her is to first send her medical reports to the doctor she wishes to be treated by, at these institutions. Many American doctors are willing to evaluate international cases without the patient’s presence. If the doctor is truly experienced in treating the condition, he/she would most likely be able to make accurate judgement through radiology imaging, lab reports, medical history and what symptoms that the patient states she has. The cost for this initial consultation or advice-seeking would just be a couple of hundred Ringgit, if not for free.

After the experienced doctor evaluates the patient’s case, he/she would typically recommend a treatment plan. When a treatment plan is in place and agreeable, the doctor would then put the patient through his/her surgery counselor, or nurse practitioner, who will proceed to get a price quote from the affiliated hospital.

Only after the patient knows the treatment plan and how much it costs, can the patient apply for financial aid from governmental or non-governmental institutions.

It is common for people to assume that they first need to have the money before going to the surgeon. This is a mistaken assumption. We first need to know what exactly do we need the money for and how much, before others will give us the money.