Our trip began on a very difficult path, we flew 9 hours to Amsterdam and had no down time before catching our next 9 hour flight to India. This totalled over 20 hours of continuous travel and then we had over a three hour drive from Mumbai to Pune. It was actually good that we arrived after midnight because we basically missed the traffic that would have otherwise turned the 3 hour drive into a 6 hour drive! So we finally arrived at the hospital sometime after 3:30 am, completely exhausted and looking forward to some real sleep on an actual bed. Our first impression was one of disgust, we were taken to our room on the 6th floor only to find it filthy as though they hadn’t known about or prepared for our arrival at all! I however was not prepared to deal with the situation until the following day after we had gotten some rest. I at least had a real bed, not comfortable or clean but it was a bed, Lorelei was not as lucky as she only had a thin foam mattress, 2” at the most placed on a plywood bed frame. At the time it didn’t matter, sleep was all we cared about. I was shocked when hospital staff began coming into our room within only hours…I thought to myself seriously, get the hell out!! After our long journey we were given less than 3 hours of uninterrupted rest and this is how our hospital experience began and to be honest it never really got much better. My expectations that were based on pictures and claims from the CCSVI website were quickly squashed and replaced by the reality that we were completely mislead. This hospital was nothing like the pictures or description provided on the website or anything remotely similar to descriptions made by previous patients. There was no clinic to speak of, we had a room and that was it. There were no other patients except one woman whose room was on the 9th floor. Thank God that we had someone else undergoing the treatment at the same time even though we were completely isolated from each other. Meeting Lesley and her caregiver Kim literally kept us from going crazy but the only time we had to communicate was during cross over times for our physiotherapy and beyond that the only time we saw each other to visit and offer each other support was when Kim would bring Lesley down to our room. I wasn’t permitted to bring my scooter (which I understand their reasoning why) so I had no mobility and wasn’t even given access to a wheelchair. Therefore the only time we had to visit was when Kim brought Lesley down to the 6th floor because Lesley fortunately had her own wheelchair. We were completely isolated and the concept of a clinic did not exist! The only accurate comparison to how we were forced to live would be going to prison, and I’m not kidding or exaggerating. This is not at all what we were lead to believe as it was clearly stated on their website that patients and their companions are admitted to the clinic’s own wing within the hospital for the patient’s specific medical therapy, this is how I envisioned the “clinic” setting to be. There were many other statements from the website that were completely false. For example: “The multi-cuisine dining facility serves a wide variety of north Indian, south Indian apart from traditional Indian meals and snacks. For an occupant of a deluxe room, the elegant interiors and the view of an adjacent terrace garden are designed to make his or her stay not just comfortable but also pleasurable.” Completely false statements, our stay was the furthest thing from comfortable and pleasurable as you can get! I can also assure you that I would have rather eaten food from any North American prison than the hospital food we were served. Another lie from the website states “All meals are catered on the ward; snacks are available on the ward 24/7. All cuisine is North American, unless the group decides they would like to sample some Indian cuisine”. Requests that we made for North American food came to us inedible most of the time. We ingested the food for sustenance only, it was terrible!
Another false statement “The hospital itself is a multi-specialty facility that is centrally located in the city and outfitted with state-of-the-art infrastructure complete with an eminent panel of multi-specialty physicians. International Services for a global patient population ensure that distance and language are not obstacles to receiving world-class care”. For starters hardly any staff spoke English, let alone fluently, communication was a huge barrier! Another huge barrier to understanding was the fact that none of the staff, that I met, knew what multiple sclerosis is! Nobody really knew why we were there, what the effects of the disease are or the limitations that MS places on our bodies. It became extremely annoying being asked everyday what MS is and trying to get staff to understand the effects it has on our bodies.
I honestly didn’t see one thing that I could class as “state-of-the-art”. On the contrary everything I saw and experienced was completely antiquated from the blood pressure monitors to the physiotherapy equipment. Not to say that things were not functional but far from state-of-the-art! The only doctor that I can ever recall introducing themselves to me and their role or specialty was Dr. Malik. Thank God again for this man; he was the only aspect of our entire experience that I can say was excellent. He is an interventional radiologist but essentially seemed to run the entire program, without him we would have completely lost it! As for a team of other specialists…who knows who or where they were. The medical team tab from the website lists only two doctors and is listed as “Archive for Medical Team” whatever that means. Dr. Alurkur is listed as an Interventional Neuro-Radiologist and he was named in my angioplasty report as the doctor who performed the venoplasty however it was signed by someone else for: Dr. Alurkur. I was never introduced to him or any other doctor other than Dr. Malik.
I can’t really understand how they can find any validity to their clinical results, everything is subjective. I was never evaluated by a neurologist, or anyone for that matter. They have no base line parameters established so I’m not sure how they can evaluate outcomes. The use of EDSS scores is one comparative evaluation that is used but again no one evaluated me especially nobody with the proper credentials of a neurologist. All they had to go on is what I told them my EDSS score was and I was not seen by any doctor who could clinically confirm my score. This brings into question the follow up scores that are being reported, who are the doctors assessing EDSS scores for post procedure reporting? This rating scale is also quite subjective and is known to not be a precise measurement of ones entire disability and is often criticized for being insensitive to clinical change and consistency between evaluators. There are several other methods used to quantify various aspects of disability however I was not evaluated for anything! The use of MRI scans is also used to evaluate disease status but does not represent a clear indication of disability but does provide a clear and accurate measurement of disease activity. I don’t understand why an MRI is not taken before the start of treatment and followed up by another 3 to 6 months post procedure. It has been stated and inferred that the treatment “turns off” the disease but I can’t see any validity to such a statement without proper evaluation of MRI data.
This is only a very brief account of some of the issues we faced at Inamdar hospital, there are SO MANY MORE but I don’t want this blog to turn into a book! The so called “clinic” was not the only problem or misrepresentation we encountered, there are many others! Again I expected based on the website consultation with surgeons upon returning home in post-period. I knew this wasn’t going to happen based on the fact that I never met or spoke to any surgeons while at the clinic! I was also promised “Follow-up web-based software for all patients to answer surveys at intervals, upload ancillary medical information, ask questions of any of the specialists involved in your care, and a chat feature to communicate with any other patients of CCSVI Clinic to compare notes and for support”. I’m told this is coming but patients have been told this for well over a year, starting with the first patients to enter the program yet nothing has happened.
I suspect that when they moved the program from Noble Hospital to Inamdar things fell apart. I honestly don’t trust their explanations for having to move which is a problem for me as one of the clinics basic claims is to operate the program under a policy of complete transparency. I can tell you that very little of their operation is run with complete transparency. We know that Regentek is the lead investigator for the study but this is apparently where their role ends. I have huge questions regarding the involvement of the many other parties involved with the program like the role of the hospital, who runs CCSVI Clinic, are there any conflicts of interest involved just to name a few. This is a very convoluted organisation and I believe it has been purposely set up this way. As an example, taken directly from the CCSVI Clinic website is a disclaimer which states: “CCSVI Clinic is in the business of facilitating travel and hospitality only. Any and all medical services are provided by medical professionals who are not in the employ of CCSVI Clinic Inc. and CCSVI Clinic does not recommend, endorse or provide any specific test, analysis, products, or procedures of a medical nature”. Where is the transparency in that, just who is responsible for the treatments, the patients, following proper protocol etc? This is just not right and trust me, this is only the beginning. I have examined the guide lines and requirements for the practice of cell based medicine as outlined by the ICMS (International Cellular Medicine Society) and I take no delight in stating my opinion that the CCSVI Clinic violates and or is in non-conformance with many of these guidelines.
If I were to go through all or even half of our experiences in India, this blog would turn into a book. There are many things yet to discuss that I will make the subject of future blogs but I had one main purpose for this blog and that is to inform any new or prospective patients of the reality they can expect from Inamdar hospital. I would not recommend anyone go to this facility under its current operating parameters. The experience of my wife and I was a living hell and I would hate to see anyone else pay such a large amount of money and be mislead by the outrageous misinterpretation of the program and facilities. Understanding full well the feelings of desperation and hope, I can’t blame anyone for still wanting to proceed but at least now you have and informed and realistic view of what to expect. As I stated at the beginning, my intent here is not to disparage the program, its vast potential or the amazing results that have been reported but everyone deserves the truth. I think the clinic was on the right track operating from Noble hospital but things have fallen apart since moving to Inamdar. There is a substantial amount of work to be completed before this clinic is even close to being acceptable in my opinion. Perhaps they have even started to correct some of the problems but I guarantee there is a long way to go. What my wife and I went through (to be guinea pigs) caused a lot of stress to my mind and my body! We are all aware that stress is a very bad condition for MS and I am thoroughly disgusted that I was subjected to this kind of treatment. Through it all we decided to keep the negative experience hidden from our family and friends, we figured there was no point in spreading the worry back home. We knew we were still receiving prayer and had faith that our own specific prayers would bring us home safe.
This blog is already so long but there is still so much that needs to be said but I’ll end with an even more concerning piece of news. Upon my return home I was already scheduled for an MRI, this took place exactly 23 days after my last stem cell transplant. I didn’t receive the results until 17 days later when I had an appointment with my neurologist but I knew before then that something wasn’t right. Approximately two weeks before this I began to notice new symptoms developing, the left side of my body was going numb and my balance was deteriorating. I had been warned that this type of response is common when new neural pathways are opening so I wasn’t too concerned and kept up with physio therapy and exercising. By the time my appointment rolled around the symptoms had escalated, these were new symptoms and I was sure that I was having an attack! How could this be possible, the stem cells are supposed to “turn the disease off”! Well it didn’t work for me; my MRI showed a new enhancing T2 hypereintense lesion and my neuro knew that I was in the midst of an attack. He offered me a prescription for high dose prednisone but I declined in favour of just monitoring things for a while as my symptoms were not really problematic at the moment. I reported my suspicions of an attack to the lead researcher from Regenetek on May 14th and again on May 17th with MRI evidence of an attack but did not get a response until May 19th. The response I received was one of scepticism reiterating that this was a normal response and virtually every patient thus far has had similar experiences. I replied saying that I was convinced that I was having an attack, after having so many attacks over the last 17 years (too many to count) I knew exactly what was happening in my body. Things started to worsen over the weekend of the 18th and 19th, the numbness was spreading to my right side, my legs now felt as if they weighed 100 pounds each making walking EXTREMELY DIFFICULT and I couldn’t feel the left side of my ass! Well I could feel it but it felt as if my left butt cheek and foot belonged to someone else. I was extremely concerned with the rapid progression of my symptoms over the last two days and was now desperately wishing I had taken the prednisone prescription. I’d been in this position before and had the disease flatten me to the point of crawling; I needed to know from the lead researcher what would happen to the stem cells if I was on a high dose course of prednisone! I didn’t hear back from him until the 21st, the day I had mentioned in my email that I would be filling the prednisone prescription unless he could provide me with some very compelling reasons why I shouldn’t. Fortunately the rapid progression of my symptoms subsided by the 21st and I had to make the call on my own to not start the prednisone. I did send another email stating that I needed to speak with the lead researcher very soon and got a reply that he would call me on the 22nd. Well that call never happened until the 23rd at which time I was informed that the prednisone would essentially damage the stem cells to the point of being non functional. I had been waiting for this information since my first contact on May 14th, I got the answer 10 days later, unacceptable and bordering on incompetence if not negligence. He knew that I would lean towards the drug if my condition worsened yet he neglected to inform me of the negative consequences of taking the prednisone. So I never did use prednisone but this was my decision based on instinct and what little information I could garner from Google. I must still be positive and believe that the stem cells will kick in once this attack has subsided a little. I am very surprised that the stem cells haven’t had a positive reaction because they are meant to be attracted to areas of inflammation and trauma in the body. I don’t want to wreck the chance that the stem cells are still alive and waiting to work but I do wish I had the prednisone. I have always responded well and at the moment I need something in the absence of any action from the stem cells. My condition has become much worse over the last several days, it’s not good but at this point I think I’ll have to suck it up and just deal with it! I just have to pray that things won’t progress to the point of not walking at all. I feel so tired and can’t do anything that requires me to exert any energy. My balance has deteriorated big time and I seem to be very clumsy, to the point that I have difficulty using cutlery. Overall I’m just not a very happy camper at the moment. I won’t let my faith in the treatment and the stem cells fade away, my faith in God and his plan is more powerful than anything that is happening.
I do apologize for the length of this blog but there is so much to relate and so much more to follow. I have topics that can keep this line of discussion going for many more blogs and there will be many to follow. Again the intent behind this blog is not to create doubt and worry in the minds of patients or their families; the objective is to relay truth about my experience and to prospective patients. We all deserve to know the truth and not be mislead into such an important decision based on inaccurate information.
My story will continue so until next time,