mid-thirties was initially treated in 2006 for depression and mood swings. Nobody realised that she was actually suffering from MS. Her family was naturally extremely concerned about her. In 2009, after several sessions of psychiatric counselling and psychotherapy, a doctor suggested she get an MRI test done. It was then that Sonia learnt she had MS.
As Sonia was a family friend and knew I also had the same disease, she got in touch to ask what she could do in order to get better.
I told her to have faith and shared all the information I had and lessons learnt on my MS journey. Of course, just like the most of us, she also couldn’t resist doing her own ‘research’ on the disease on the Internet.
In 2010, Sonia forwarded me an e-mail which detailed how an Italian doctor named Paolo Zamboni had been getting dramatic results with a new type of treatment – Chronic Cerebro–Spinal Venous Insufficiency (CSSVI) for MS.
This treatment was discovered by Dr Zamboni in 2009. He had put forward the idea that many types of MS are actually caused by a blockage of the pathways that remove excess iron from the brain – and by simply clearing out a couple of major veins, the root cause of the disease could be eliminated.
Dr Zamboni had personal reasons to find a cure as his wife was also suffering from MS. While reading everything he could on the subject, Dr Zamboni found a number of century-old sources citing excess iron as a possible cause of MS. It was also cited that 90 per cent of people with MS have some sort of malformation or blockage in the veins that drains blood from the brain.
This information gave Sonia hope and she sent me many videos and articles by people all over the world eulogizing this treatment, which seemed like a miracle to many MS patients. Sonia also decided to go ahead with the option of CSSVI.
CSSVI hadn’t been approved of by neurologists and many patients on the Internet wrote that this was because the neurologists were not exploring the option properly. In fact, many comments on the Internet forums seemed to be written by people dejected that there was no formal approval from medical bodies for CSSVI.
* The US Food and Drug Administration (FDA) in 2012 had actually issued a warning about this controversial and experimental vein procedure for people with MS. This FDA warning said it had received reports of one patient who had died from bleeding in the brain and one patient who had suffered paralysis after the treatment. The FDA report mentioned that serious complications had been reported after patients took CSSVI, some of them being:
Injuries to veins
Blood clots in the jugular vein
Cranial nerve damage
Abdominal bleeding
The fact was that there was no formal approval because the treatment had major health risks. Still, since there were so many positive reports as well, I consulted my neurologist, Dr Mukherjee about it. He said many people had asked him about this treatment but he personally would not recommend it because of the high level of risk. Dr Mukherjee spoke to me at length about this treatment and convinced me that I should not even think about putting my life in jeopardy.
After speaking to him, I tried to convince Sonia not to go ahead with this treatment. She however remained adamant and found a doctor in Bengaluru, willing to operate on her. The doctor himself promised no miracle and only told Sonia this treatment ‘may’ work for her. At that point, I silently noted the use of the word ‘may’. If a surgeon himself is not sure about a certain surgery perhaps the burden falls on the patient to really think about whether such kind of a surgery should be explored at all.
In the weeks after the surgery Sonia was made to follow a specific diet and routine but her condition did not improve at all leaving her disappointed and disillusioned by the whole experience. As family and friends we were just grateful that her condition did not worsen after this controversial procedure.
Stem
As Sonia was a family friend and knew I also had the same disease, she got in touch to ask what she could do in order to get better.
I told her to have faith and shared all the information I had and lessons learnt on my MS journey. Of course, just like the most of us, she also couldn’t resist doing her own ‘research’ on the disease on the Internet.
In 2010, Sonia forwarded me an e-mail which detailed how an Italian doctor named Paolo Zamboni had been getting dramatic results with a new type of treatment – Chronic Cerebro–Spinal Venous Insufficiency (CSSVI) for MS.
This treatment was discovered by Dr Zamboni in 2009. He had put forward the idea that many types of MS are actually caused by a blockage of the pathways that remove excess iron from the brain – and by simply clearing out a couple of major veins, the root cause of the disease could be eliminated.
Dr Zamboni had personal reasons to find a cure as his wife was also suffering from MS. While reading everything he could on the subject, Dr Zamboni found a number of century-old sources citing excess iron as a possible cause of MS. It was also cited that 90 per cent of people with MS have some sort of malformation or blockage in the veins that drains blood from the brain.
This information gave Sonia hope and she sent me many videos and articles by people all over the world eulogizing this treatment, which seemed like a miracle to many MS patients. Sonia also decided to go ahead with the option of CSSVI.
CSSVI hadn’t been approved of by neurologists and many patients on the Internet wrote that this was because the neurologists were not exploring the option properly. In fact, many comments on the Internet forums seemed to be written by people dejected that there was no formal approval from medical bodies for CSSVI.
* The US Food and Drug Administration (FDA) in 2012 had actually issued a warning about this controversial and experimental vein procedure for people with MS. This FDA warning said it had received reports of one patient who had died from bleeding in the brain and one patient who had suffered paralysis after the treatment. The FDA report mentioned that serious complications had been reported after patients took CSSVI, some of them being:
Injuries to veins
Blood clots in the jugular vein
Cranial nerve damage
Abdominal bleeding
The fact was that there was no formal approval because the treatment had major health risks. Still, since there were so many positive reports as well, I consulted my neurologist, Dr Mukherjee about it. He said many people had asked him about this treatment but he personally would not recommend it because of the high level of risk. Dr Mukherjee spoke to me at length about this treatment and convinced me that I should not even think about putting my life in jeopardy.
After speaking to him, I tried to convince Sonia not to go ahead with this treatment. She however remained adamant and found a doctor in Bengaluru, willing to operate on her. The doctor himself promised no miracle and only told Sonia this treatment ‘may’ work for her. At that point, I silently noted the use of the word ‘may’. If a surgeon himself is not sure about a certain surgery perhaps the burden falls on the patient to really think about whether such kind of a surgery should be explored at all.
In the weeks after the surgery Sonia was made to follow a specific diet and routine but her condition did not improve at all leaving her disappointed and disillusioned by the whole experience. As family and friends we were just grateful that her condition did not worsen after this controversial procedure.
Stem
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