Are we neglecting the important issues pointed out by Peter Jeneta the pioneer in MVD?

I have been operating on the patients of trigeminal neuralgia for nearly 10 years and I have seen much and heard so many stories. There is no joy more than watching a TN patient getting complete pain relief without medicines. MVD is the king of the modalities that can be offered to the TN patients PROVIDED THE SELECTION OF THE PATIENT IS CORRECT AND THAT IT IS DONE IN TIME.
MVD is the most misunderstood and the most misinformed procedure.
If the rules are broken the results can suffer.
Dr Jeneta has written very clearly about this and my relatively small experience with about 120+ TN patients also confirms this.

  1. MVD has a success rate of more than 96 percent IF DONE IN TIME.
    It has been found that the failure rates in MVD are higher if the pre-operative disease duration is more
    and if a destructive procedure like RFLG has been done before.

  2. There is a misconception that the surgery is dangerous in age group 60+ patients. On the contrary, as Dr Jeneta poits out and our experience corroborates with that, this surgery is technically easier in this age group as there is cerebellar atrophy and a lot of space is available for
    surgical manipulations.

  3. Results of this surgery are definitely more superior in the hands of someone interested in this surgery and who performs it regularly. The complication rate also goes down significantly.

  4. It is presumed that to prescribe drugs first and advise surgery years after the drugs have stopped acting
    is the right way in chronology. We need to question that. We may be delaying surgery at the time when it is most likely to be CURATIVE and biding time with brain and nerve numbing medications. Delayed surgeries are known to be less CURATIVE than early surgeries.

  5. It is my humble advise to all the TN patients to go through the drug interactions and side effects of long term drug therapy as intensely as they ask about the complications of surgery.

Dr Jayadev Panchawagh

Dear Ro,
I am sorry that i almost forgot that this is a universal community. I was writing from the point of the Indian perspective. And I agree that the patients are confused. If you take a random survey of non neurological doctors, very few will know what MVD means and what the other modalities mean.
I have been trying to educate the Indian public by writing in the news papers and distributing the articles about the disease.
In India, the problem is different. Many do not ask questions to the doctors and presume that all the medical practitioners are necessarily benevolent.
RFLG is the radiofrequency lesion generation in the trigeminal ganglion to burn the nerve fibres.
What i meant was that this is a destructive procedure unlike MVD and if done before MVD, REDUCES THE CHANCES OF SUCESS OF MVD.
Another point in was about the chronology of the treatment modalities. It is always easier to convince the patient that the first line should be drugs for many months. What is not told is that this period reduces the chances of success of future operative procedure if needed. With this knowledge the patiet could choose.
This actually opens up a whole chapter in medical ethics and we have to remember that patient is also an important part of the whole affair. Both the doctor and the patient are human and necessarily have limitations. However each expects the other to be perfect like a machine.
I will write to you my thoughts regularly as i think the members will also know the other side.
with regards,
jayadev

No, gamma knife and cyber knife are both radiation induced destructions of the part of the nerve. In RFLG, a needle is passed into the ganglion and radiofrequency current is passed through the needle. This heats-up the tip of the needle, but in a much more controlled fashion than the electrical current. This procedure destroys the pain fibres.
All these procedures are in the end aiming to destroy a part of the nerve fibres.
It is a good procedure as a second line and we have a machine with us for RFLG with quite a few number of cases to quote.
take care
regards
jayadev

I am creating my personal web-site but it is taking me too long as it needs quite concentrated efforts. I am a little computer illiterate. As soon as it is ready i will send the link to all the members as i am loading a section on TN in it. By the way, the livingwithtn website is very well made and extremely interactive.
I will try to load some TN patient feedbacks on the site.
jayadev

Dear Jayadev,

I also want to thank you for joining with us here and contributing your precious time to everyone here as well. You are a dedicated Doctor who obviously cares deeply about the patients in your care - and that is a rare thing to see, you should be extremely proud of your accomplishments.

We here have a large group of people with many variations to our TN disorder / illnesses. But in the main, I will agree that it is rare to meet a fellow sufferer whose Neurologist has recommended surgery as a first line treatment.

I live in Queensland, Australia.From my personal perspective, I was never told that surgery was an option. I’m 36 and have had TN for more than 12 years, though I was not diagnosed till it became quite severe in 2003. My TN went bilateral in 2007. In 2008, I also developed Occipital Neuralgia. So for 6 years, I’ve been on the medication regime. My Neurologist when I asked his opinion on seeing a Neurosurgeon to consult on possible surgical answers - said to me that there was no point - that surgery could not help me. That surgery would not relieve any of my pain. He did not elaborate.

In 2007, when my TN went bilateral, I consulted the Neurosurgeon who first confirmed the diagnosis of TN for me. Her 10 minute consult cost me a great deal of money and she told me she could not help me, and referred me back to a different Neurologist - who assessed me and said - yes you have bilateral TN. Keep taking your meds, thank you for coming and he then escorted me out the door…

As you may imagine, I have been frustrated at every turn. As Ro also said - a major difficulty is finding a good Doctor who specialises in these areas - my Doctors tell me that TN is common - yet if it is so common - why then do not more doctors have knowledge enough to help us. It is depressing.

I have gained entry into a pain clinic, the pain doctor there - his specialty is Anesthetics and pain management. He is to perform a diagnostic nerve block procedure on me in about 2 weeks time. If this is effective he wants to do this RFLG procedure you speak of. I do not want this - but he insists that he cannot treat me for TN until I have at least had it confirmed by the diagnostic nerve block first.

I am sorry if my post does not make sense - I am not feeling too good at the moment. My face hurts, my medications do not help the pain and I am feeling light headed right now as well. Thank you for reading this and for being here.

Kind regards,

Kerry.

Dear Kerry,
Thank you for your mail. I congratulate you for being a brave patient.
By the way, I had never heard so many informal patient perspectives and it is an enriching experience for me as a neurosurgeon. My patient consultations are, across the table, quite formal and as I understand from all of you, even my patients may be perceiving them to be very dry.
In the least, it may give me some perspective in future and I will try to be more more humane to my patients. Please remember that your doctors cannot let the emotional part of the pain of the sufferers to affect them lest it clouds their decisions, though they may be feeling deeply for you.
Bilateral TN is a difficult disease to treat and I think your pain management doctor is doing the best he/ she can. I wish you all the luck in the treatment you are scheduled to undergo.