My wife have a rare tumor in her brachial plexus, doctor suspect could be Liposarcoma. We started with Dr. Lee Moon Keen (MK Lee) from Pantai, after some examination she told us the condition was uncommon and referred us to Dr. Rajesh Singh from Sunway Medical for prognosis.

Dr. Rajesh sent my wife for MRI scan, after reviewing the report he said it could be a low grade cancer, the lump was sitting on top the nerve resulting to pain and discomfort on my wife's left arm, neck, back scapula plus she's also losing strength and sensation on her left arm & fingers, muscle wasting can also be seen on her palm.

He told us this is a complex issue because it involves the brachial plexus and nerve, I ask for a direction on what to do next, he then referred us to Professor Dr. Zulmi Wan at Pantai and told us this Professor is an expert on such cases.

Has anyone heard or seen this Professor before? She's very worried and hope to seek treatment ASAP. May I know which is the best Orthopedic surgeon in Kuala Lumpur.

This post has been edited by Xccess: Sep 1 2023, 07:36 AM

Latest update. Under the advice of Professor Zulmi Wan, we proceed to Kuala Lumpur Medical Sport Centre for another round of MRI with better resolution. I must say the radiologist (Dr. Low) is very professional in her analysis including written report.
Based on her finding, it's unlikely a case of Liposarcoma as image of the mass is fuzzy, there's also appeared to have some kind of scarring. She suspected this could be a case of Desmoid Tumor. Next is back to Professor to schedule a biopsy.

This post has been edited by Xccess: Sep 1 2023, 07:35 AM

Noted. Will update after biopsy.

Latest update. Surgical Biopsy done on 9th October 2014 at Pantai Bangsar, operation was carry out by a hand surgeon (Dr. Iskandar) and Professor Dr. Zulmi Wan. We be getting the result later today.

Cost for surgical biopsy is around RM7,000.00.

Insurance rejected the claim as the first doctor made some mistake in his report. We will submit the claim ourselves.

Ok, back from Hospital with biopsy report. We were told due to the small samples submitted, they were unable to get a very accurate results. An operation had been arranged, they will remove the tumor and submit a portion for analysis. Operation cost around 25K - 30K.

Interpretation from biopsy:
Features are suggestive of Hibernoma. However due to small size of the biopsy, hence not representative, an atypical lipoma or well differentiated liposarcoma in other areas cannot be excluded.
To correct clinically.

If this is indeed Hibernoma then treatment will be straight forward, surgical removal with no radiation therapy needed as it's a benign tumor.

This post has been edited by Xccess: Sep 1 2023, 07:37 AM

Operation lasted 5 hours, tumor successfully removed. Thanks to Professor Dr. Zulmi Wan and Dr. Iskandar, process took longer than anticipated because tumor was growing inbetween nerves and muscles thus have the trace them individually.

Tumor was broken into several sections in order to safely remove as not to disrupt the nerves. Photos of the operations was taken and shown to me, I will try to get it from the doctor so can post it here.

All tumors sent for examination, result will be release next week.

Operation cost RM25,500.00

This post has been edited by Xccess: Nov 11 2020, 11:36 PM

Thanks. Already discharged today and resting. Can see sensation improvement on her fingers. Road to recovery takes at least several months.

Thanks! Just got back from hospital today, went to remove stitching and last follow up will be next week. Tumor examination report came in today, all are non- cancerous cells (Fibrous and benign fats aka hibernoma)

Doctor can't explain why fibrous tissues and fats can grow in this area (Supraclavicular). It's very rare indeed and caught them by surprise, nevertheless everything went smoothly and we are both very grateful to Professor Dr. Zulmi Wan and Dr. Mohd Iskandar.

This post has been edited by Xccess: Oct 21 2014, 03:26 PM

Incision was done between collar bone and trapezius(Back shoulder muscle).

6-7cm

Ya, doctors need sufficient open area to traced individual nerves and making sure no damage is inflicted during the process.

Thanks! Total damage is close to RM 40k including X-Rays, 3 x MRI, consultation, biopsy, operation & medication.

This post has been edited by Xccess: Oct 23 2014, 09:49 PM

Thanks, she recovering well. Only complaint is tightness and some swelling on the wound which is normal. I'm sorry about your case, just be positive.

Doctor may require you to go for MRI, if you have a choice, take the MRI at KL sports medical centre. My wife went for a total of 3 MRIs, 1 at Pantai Hospital, 1 at Sunway Medical and last one at KL Sports Medical. As according to our surgeon, first 2 MRIs were not good enough due to poor resolution, the one from KLSMC is the best. High resolution is needed as surgeons needs to know where tumor is sitting and if there's a clear margin etc.

If we knew earlier, we wouldn't have wasted 4K for the 2 MRIs. MRI for her neck at KLSMC cost around 1.7K.

In the progress of seeking treatment, we have visited few hospitals. IMHO Pantai Bangsar Hospital KL is the best based on our experienced. Sunway Medical gave us the most headaches due to lack of coordination resulting to extended waiting time, we won't use this hospital again. Also visited Price Court and Gleneagles, not much comment as only short consultation.

If yours is Adrenal Andenomas then chances of non-cancerous tumor are high. Consult a specialist or you'll be referred to several doctors before finding one that know what's going on.

Do keep us posted, stay positive and brave the battle.

This post has been edited by Xccess: Oct 13 2015, 11:04 PM

-Deleted due to double entry-

This post has been edited by Xccess: Oct 25 2014, 02:41 PM

Ya, that's because tumor is compressing the nerve thus causing pain and numbness. Her left vision can goes blurry at times.

This post has been edited by Xccess: Oct 13 2015, 11:06 PM

You referring to my wife? She's not a smoker.

Everyone need at least a hospitalization coverage. You may want to consider Takaful insurance for hospitalization in future (not for this adrenal mass coverage).

I had cancelled my Great Eastern and AIA, took up Takaful as they are more straight forward with less hassle. Even doctors from Pantai Hospital agreed Takaful is better.

Went hospital today to remove all bandages. Wound is recovering well, still some stiffness and swelling around that area which is normal. Next will have to attend 6 sessions (Twice per week) of Ultrasound Therapy, this will help soften the tissues.



This post has been edited by Xccess: Oct 13 2015, 11:07 PM

I had also received the operation photos but won't show it here as the content is too graphic.

Yes, wound healing pretty well. Been feeding her Josephine Pineapples, it helps reduced swelling, inflammation and aid recovery. All she need now is to attend 6 sessions of ultrasound therapy to loosen stiff area and some physio.

This post has been edited by Xccess: Oct 13 2015, 11:08 PM