Surgery today at 21st in INK

Latest update - As the situation was getting deteriorated the care-seeker has decided to go ahead with the operation in INK today itself - We tried NIMHANS and BIN- but it would have been a while before the operation could have been arranged.

Regarding financials -

2 lakhs (Rs 61000 from the CM Fund and rest from Public Donations and online donations etc) has been raised, which is needed for the current operation -.. Another 1.5 lakhs will be required within 15 days for another small operation provided this operation is successful. Thanks for all your support

Update from Oncology-Radiotherapy - Post 3

Sorry for the delayed reply. I have gone through the case and the following are my observations :

HME / HMO is a condition of benign recurrent bone tumours. Chance of malignant transformation is < 5% (mainly to osteo or chondrosarcomas).

A genetic testing for EXT1 and EXT2 should be done.

Surgery - repeated is the only known treatment with local excision preserving limb function as much as possible.

There is per se NO role of Radiation or Chemotherapy (and therefore of the Oncologist). Only if there is consequent malignant transformation, conclusively proven by biopsy with Immunohistochemistry, can an Oncological intervention be made.

My suggestion is to go ahead with surgery and a good Orthopaedic Surgical opinion beforehand.

Regards, 

---------------------------------
DR. ABHISHEK BASU
MBBS, MD, DNB (Radiotherapy), PDCR

Assistant Professor,
Department of Radiotherapy,
R. G. Kar Medical College & Hospitals,
Kolkata.
West Bengal, India.

Update from Mission Arogya/Arogya UDHC Physician Network - Post 2

Once we at Arogya HomeCare (https://www.facebook.com/arogyahomecare), Mission Arogya (https://www.facebook.com/missionarogya) , Kolkata Medical Emergency System (KMES) (https://www.facebook.com/kmes.in) got involved, we have taken it up first to ensure OPTIMAL treatment keeping all logistical and financial constrain in mind.

This is a quick update from Mission Arogya's ArogyaUDHC program - The case has been shared among the ArogyaUDHC network of physicians, which is a global network of > 1500 physicians.(https://www.facebook.com/groups/tabularasa/ : details: http://www.missionarogya.org/p/arogyaudhc.html ). 

According to the Physician group, no clinically approved medication is still available for this rare disease - the disease is rather managed over a long period of time primarily via pain management and occasional surgeries. But the physicians are also of the opinion that for different reasons, "it seems that (care-seeker) has not gone though any long term planned medical treatment / management apart from recurrent surgery."

The treatment should have started long ago (may be from his childhood) under Pediatric Orthopedic to keep this under control. But they also realize that care-seeker is under lots of pain and his left side is getting paralyzed - though as none of them have seen him physically, they cannot understand the severity (May be the latest MRI report will help).

Based on the current MRI, CT and XRAY report done in March 2017, according to the physician network the following are the only two options :

1. If the pain is unbearable and left side continue to deteriorate the only option is to get the operation done ASAP. 

From one physician - 

" It might be a tough operative procedure. Instead of general orthopaedic surgeon he should be operated by  spine surgeon (either orthopaedic or neuro surgeon). INK is best for that in kolkata. I dont know any specialized spine surgeon in Govt domain. U may enquire at Bangur institute of Neurology" 

2.. If care-seeker can withstand the pain, then his treatment should start in the Orthopedic department for long-term management of his disease, preferably in a Tertiary hospital so that a holistic treatment can be done under the same roof most affordably. It has been decided that the best place with be PG Orthopedic Department along with BIN for long term management of this rare disease

But it's also true that care-seeker's condition is deteriorating every day - So while we at Mission Arogya, keep on working on option 2, it seems the operation might be needed to be done in INK, Kolkata ASAP - INK being a private hospital will require 3.5 to 5 lakhs to do the operation. As such we are also sharing the Milaap crowd-funding appeal. https://milaap.org/fundraisers/saverameez

P.S: Few important points to note for transparency :

1. Mission Arogya, Kolkata Medical Emergency System and Services - KMES or Arogya HomeCare (or it's founders) are not financially responsible for this fund raising. We are just sending it to our friends and donors worldwide , so that they can donate to the bank account of care-seeker and his friends/families directly

2. We as an organization, are ensuring the OPTIMAL treatment is being done and the care-seeker get cured quickly and start his PhD work. For our own selfish reason, we need this young scientist to be cured completely, so that he can achieve many things for the betterment of humanity.

3. I personally believe, care-seeker and his well wishers should approach INK and request them on humanitarian ground , to reduce the cost of operation, as I see some areas of fee reduction/waiver. (This is a purely personal opinion and not endorsed by any of my organization, namely Mission Arogya, Arogya HomeCare, KMES , Arogya MedTech, R3G Foundation etc.) 

25 Year Male - Case History from 2010 till date (March 2017) - 1st Post

From childhood the care-seeker , a 26 years old young scientist from Kolkata , is suffering from a rare disease called HME (Hereditary multiple exostoses)/ Hereditary Multiple Osteochondromas. The disease was first diagnosed in CMC vellore in 2010 when care-seeker was in 1st year of his college. But no report is available from 2010. Due to certain logistical and financial reason only an operation took place in his leg but no long-term management plan was started or followed upon.

In 2015 when care-seeker started his PhD, the bony lump reappeared in his left neck/shoulder area causing complete paralysis. Again they traveled to Vellore but for an unfortunate event he never reached vellore ( His father expired on the way to Vellore in Train). Ultimately in 2015 Dec in Institute of Neurosciences in Kolkata this rare disease was confirmed and another operation happened in 2015 end - the neck dissection operation to remove a bony tumour was successful and he got back sense in his hand and leg.  A molecular genetic testing of the EXT1 and EXT2 genes is available to confirm the diagnosis but it's quite costly and from the observation of bony lumps , the disease diagnosis is almost a certainty.."Also known as diaphyseal aclasis - It is a rare medical condition in which multiple bony spurs or lumps (also known as exostoses, or osteochondromas) develop on the bones of a child. HME is synonymous with multiple hereditary exostoses and multiple osteochondromatosis, which is the

preferred term used by the World Health Organization." 

Ref: 

https://rarediseases.org/…/hereditary-multiple-osteochondr…/
https://rarediseases.info.nih.gov/…/hereditary-multiple-ost…
https://ghr.nlm.nih.gov/…/hereditary-multiple-osteochondrom…
https://www.ncbi.nlm.nih.gov/books/NBK1235/

Now cut to 2017 

==============

In Feb, 2017 the lump is again back on the left neck, with severe vengeance, causing a complete paralysis in the left side of this young guy requiring another costly operation. The incidents unfolded as below in the own word of care-seeker (I am doing a little edit for brevity): 

“On 2010, when I was in my college first year, my right side leg got extremely swollen up. Local doctors had done lots of check-ups and diagnosed it as CANCER. They mentioned that I have to get my leg amputated. So, me and my father left for CMC Vellore in 2011. DR. V.T.K TITUS did an operation and saved my leg and I survived. But we can’t pay for the whole treatment cost, and so the reports etc, remained with Vellore. I don’t have any record of it but, I can recall that he might have told that it is HME (some type of tumor in bone). After coming back from Vellore, though I had occasional swelling up in different parts of the body, I was neglecting it, as the pain was not unbearable. In 2015, I completed my M.Sc and started Phd. But in middle of 2015 (August) my left side neck got extremely swollen up and the pain became unbearable. So, we (me, my father and mother) again travelled to CMC vellore. But during the train journey, my father expired due to a massive heart attack and so we had to come back. My left side was starting to get paralyzed and so I visited Institute of Neuroscience kolkata and was treated by Dr Bose and DR. CHRISTOPHER GERBER. They did a neck dissection operation to remove a bony tumour – it helped, my pain got reduced and my paralysis was gone. But again this February 2017, my left hand got paralyzed. My left side neck, where operation had been done, is swollen up again. I visited INK and they mentioned that an urgent operation needs to be done (Attached) and that needs to be done by 24th March. The operation will cost 3.5 Lakhs which is difficult for me but my friends and families are trying best to arrange it. But also they mentioned that this operation is not a complete cure. This may come back. I am really, really confused? Please guide me" 

The latest reports and prescriptions from INK is attached here:

Also attaching all the slides soft-copy - as clear as possible -

My observation :

Based on my discussion with the care-seeker and after going through the prescriptions and EBM based study from internet, it seems his treatment for HMO/HME has never been started back in 2011. This may be due to financial and logical constrains after the Vellore treatment. The current treatment and the operation seems to be symptomatic – the pain killers cannot help him and the nerves are being impacted causing paralysis. So the operation is being done. In my opinion, a holistic treatment plan should be done starting from the bone and treating the problem not the symptom.

But on the other hand the young guy is going through quite a bit of pain and left side is getting paralyzed – he is really concerned that he may lose his left side and obviously the stress and anxiety is causing the situation to deteriorate.

Under this circumstances, please suggest what will be the best way moving forward?

The minimal first thing that I am looking from the group is starting his long term treatment in Kolkata keeping in mind the paralysis issue of his left side. It will be ideal if it is in Govt Setup in Kolkata, due to the person's financial condition.