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

Thanks for the update. Let us know ya once diagnosis completed so that we can learn and know more also this type of tumor.

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.

Covered by insurance medical card?

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

Hope she is fine and speedy recovery

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

Good to hear that

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

Wow, long big stitch

Good to hear that it is non-cancerous cell

Total cost how much for this whole thing?

wow..hibernoma will also cause pain. glad all is ok.

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

glad to hear everything is good, and wow 40k
hope your wife has a speedy recovery !
How is she doing so far ?

I recently found an adrenal mass, near my right kidney , i got diagnosed at SJMC since i live in subang so is quite convenient.
Now just waiting to find out what kind of cancer i have.

Test , scans and biopsy cost a bomb -.- , hopefully no more inconclusive results =/

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

No insurance card covered? Last time I went to SJMC for endoscopy also. Quite expensive. But fortunately covered by company medical card.

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

sadly no

SJMC is pretty pricey , test and scans are expensive enough already, cant imagine the actually operation or treatment .

Will do my best to stay positive

are you a smoker before you got this surgery?

Yes, staying positive helps because good positive emotion help immune system to be stronger.

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.

That's fast recovery with minimum scar I would say

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

Another extremely rare tumor here, though yours is benign.

Based on the medical literature of about 80 to 90 cases of hibernoma
worldwide every 15 years since 1985 of which about :

10 percent are in the neck; and

2 percent in the supraclavicular region.


My guess is that there are currently just about 250 cases worldwide, with perhaps -

25 in the neck, and

5 supraclavicular.


This means that your wife's case is probably just the 5th or 6th reported
in the literature. You ought to contact Medline to update their database.


Your surgeons must have been very skilled to remove such a rare and
precariously located tumor without incident. Gracee of the other thread with
the similarly very rare adrenal and kidney tumor ought to consult them.




Case of hibernoma in the right supraclavicular fossa.

'' To our knowledge, only three cases in the supraclavicular fossa
have been documented. ''


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3822477/




The morphologic spectrum of hibernoma:
a clinicopathologic study of 170 cases.


http://www.ncbi.nlm.nih.gov/pubmed/11395560




'' Review of the world literature reveals about 80 cases, but only six
hibernomas in the cervical region have previously been reported. ''

http://www.ncbi.nlm.nih.gov/pubmed/4056584




'' Review of the world literature reveals only 40 cases .... ''

http://www.ncbi.nlm.nih.gov/pubmed/950863





This post has been edited by Tham: Nov 2 2014, 12:23 PM

Yes, Bro. Very rare case indeed as I'm aware she could be the number 5-6 person with such tumor as I have done enough research thus putting our faith in the hands of Professor Dr. Zulmi Wan and Dr. Iskandar. Not only skillful, both are friendly and humble. Before I met Professor Zulmi, I have been warned not to be fool by his appearance. He don't look anything like your everyday Doctor, infact he is more like a regular uncle in his 60s you'll find around coffee shop, always smiling and very casual.

His advice is very straightforward as he said there's no point beating around the bush under such circumstances. I'm aware of Gracee's condition but both of them are hand surgeons, not sure if they can help.

Grace, Please read the message from Tham above. I'm not sure you want to consult the doctor that performed the operation on my wife. My wife's case is very rare, she could be the 6th person in the world to get such tumor. These 2 surgeons did a good job. Just sharing opinion.

Bro, how can I get in touch with Medline?

Technically, the surgeons would have to submit a report on her case
to a medical journal, after which the abstract or full text would appear
on Pubmed after it has been approved and published.

Their database would then be updated with their study, which will appear
in their search engine.

Medline is a database of medical studies, or abstracts rather, published in
journals worldwide. Pubmed is the name of their search engine which
searches this database.

http://www.ncbi.nlm.nih.gov/pubmed


Full-text articles, if free, are found in PubMed Central, or PMC.

http://www.ncbi.nlm.nih.gov/pmc/



But anyway, you could give feedback, write on their Facebook page, or
twitter to inform them of your wife's case.


http://www.ncbi.nlm.nih.gov/About/glance/contact_info.html

http://apps.nlm.nih.gov/mainweb/siebel/nlm/index.cfm

https://www.facebook.com/ncbi.nlm

https://twitter.com/ncbi





This post has been edited by Tham: Nov 1 2014, 09:45 PM

I had highlighted my wife's case in a email to them. Let's see what's their respond.

only 6th person diagnosed with this tumor? That's extremely rare indeed.

Yeah good to submit the info to them for research purpose.

I've seen most of the orthopaedic surgeons, they are all very good at their job.

Hope your wife is doing much better now

She's getting better, operation was a success. Another 2 months with light exercises and therapy, she'll fully recover. Thanks

Can consider Subang Jaya Hand Centre.
Their website is http://subangjayahandcentre.com/