I saw neurosurgeon, Mr Suttner, at Glasgow Southern General Hospital today. He said I was an ideal candidate for MVD surgery which could be carried out in the next couple of weeks. He explained in great detail the pros and cons and was open and honest about the risks. I told him I needed to discuss it with my family. I have accepted there is no cure for TN only various forms of pain relief. However, the quandary I have in deciding whether to have the operation is that I have had no pain whatsoever since 28 December 2010. Prior to that, the pain was horrendous, requiring hospital admissions. I know the pain will reappear at some point. I have no obvious side effects from the meds although my next round of blood tests may tell me otherwise. I kind of wish I had some pain at the moment which would make the decision easy. Ultimately, the decision will be mine and mine alone. I just wondered if anyone had any thoughts that would assist.
I understand the what ifs and whens we live with. It is the worst dread in the world waiting for the next round. Only you and your doctor can make the choices. I wish you the best on this one.
I think I'm just trying to delay the inevitable by taking the cowards way out and getting someone else to make the decision for me. The neurosurgeon has given me a couple of months to make up my mind after which I would need to go through the whole referral process again. I think I may take some time to reflect on things rather than jump straight in. If I was in pain there would be no hesitation.
Regard
Jim Bobbie said:
I understand the what ifs and whens we live with. It is the worst dread in the world waiting for the next round. Only you and your doctor can make the choices. I wish you the best on this one.
It is a very tough decision to make. I had MVD surgery 7 months ago and so for it has been a life changing one for me. I have not had any TN pain since surgery. However, it does take time to fully recover from the surgery. After the surgery it takes time for the nerve that has been damaged to heal. I was having terrible shocks and taking a lot of medication to control them and I found the surgery to be the best opportunity for me to stop the pain and fear of attacks. Also, I have read several articles and I was told by my surgeon that it is better to have MVD surgery closer to the time when the pain started than waiting for years.
The surgery has given me my life back. I don't have to live in fear of the next sudden attack. I am still slowly weaning off of the medication I was on, because I was having to take so much. Also make sure you have a very good neurosurgeon who has performed MVD surgeries before and one who seems to really care about helping you. For me surgery was worth it. Good Luck on your decision and put it in God's hands and trust in him that is what I did and he took care of me.
I think I'll probably take the two months to decide. Its great to hear a success story. It's another piece of information for me to consider over the next couple of months.I have an appointment with my dentisit this morning. As well as being a dentist, she's also a highly regarded surgeon (not a neurosurgeon). So I 'll get more info from to help the decision making process along. Of course, if the pain returned tomorrow, it would be a done deal.
Thanks for taking the time to reply
Jim
Linda Kindle said:
It is a very tough decision to make. I had MVD surgery 7 months ago and so for it has been a life changing one for me. I have not had any TN pain since surgery. However, it does take time to fully recover from the surgery. After the surgery it takes time for the nerve that has been damaged to heal. I was having terrible shocks and taking a lot of medication to control them and I found the surgery to be the best opportunity for me to stop the pain and fear of attacks. Also, I have read several articles and I was told by my surgeon that it is better to have MVD surgery closer to the time when the pain started than waiting for years.
The surgery has given me my life back. I don't have to live in fear of the next sudden attack. I am still slowly weaning off of the medication I was on, because I was having to take so much. Also make sure you have a very good neurosurgeon who has performed MVD surgeries before and one who seems to really care about helping you. For me surgery was worth it. Good Luck on your decision and put it in God's hands and trust in him that is what I did and he took care of me.
One of the difficulties that TN patients deal with, is that TN pain tends to be erratically progressive. That is, especially in the early stages of the disorder, it may go into spontaneous remission for periods of weeks up to a year or two. There is also emerging evidence in medical literature that when TN pain persists and is not effectively managed, it can "evolve" in meaningful ways, becoming more difficult to treat by both medication and surgery. At one time, it was generally agreed that probabilities of surgical success tended to drop for patients who have any form of TN (typical or atypical) for longer than seven years. I am not sure that agreement is quite so wide spread at present, given the additional research published by bodies such as IASP. But the trend is still acknowledged.
On the up side, MVD is generally recognized as the gold standard of best practice for correction and management of Type 1 ("Typical") TN, with its volleys of lightning-strike jabs. For experienced surgical teams which frequently do the procedure, the success statistics in Type 1 TN exceed 90% and probability of severe post-op side effects is less than 10%. The qualifications on this observation are significant, however: "experienced" generally means teams that do at least five to ten MVDs every month. The last place you want to be is on the front end of somebody's learning curve. Likewise, it is reassuring (though not considered medically necessary) if a compression of the nerve has been confirmed by a trigeminal protocol in sub-millimeter resolution MRI imaging performed both with and without contrast agent.
Post op recovery can vary between patients. Some people wake up within hours totally pain free. Others may require weeks to months of recovery, depending on the degree of damage that has occurred before the surgery is performed. Likewise, there are some indications that early pain recurrence may be more likely when the compressing blood vessel is a vein rather than an artery.
I wish you well with the decision, in whichever direction it takes you. If I were advising a close family member with circumstances similar to those you describe, I would first ask how long your Type I TN pain persisted prior to the present remission. If that period was five years or longer, i would support a decision to seek the surgery.
Sorry for the delay in replying, I've been off enjoying myself, golf, golf and more golf. I've decided to go ahead with the MVD. In fact I can't believe I was hesitating given the pain I was in last October and the distress it caused my family. I've asked the surgeon for a couple of months leeway to which he has agreed as I've some important family occasions coming up (and the golf season; might live to regret it).
Many thanks for your continued wisdom
Jim
Richard A. "Red" Lawhern said:
Jim,
One of the difficulties that TN patients deal with, is that TN pain tends to be erratically progressive. That is, especially in the early stages of the disorder, it may go into spontaneous remission for periods of weeks up to a year or two. There is also emerging evidence in medical literature that when TN pain persists and is not effectively managed, it can "evolve" in meaningful ways, becoming more difficult to treat by both medication and surgery. At one time, it was generally agreed that probabilities of surgical success tended to drop for patients who have any form of TN (typical or atypical) for longer than seven years. I am not sure that agreement is quite so wide spread at present, given the additional research published by bodies such as IASP. But the trend is still acknowledged.
On the up side, MVD is generally recognized as the gold standard of best practice for correction and management of Type 1 ("Typical") TN, with its volleys of lightning-strike jabs. For experienced surgical teams which frequently do the procedure, the success statistics in Type 1 TN exceed 90% and probability of severe post-op side effects is less than 10%. The qualifications on this observation are significant, however: "experienced" generally means teams that do at least five to ten MVDs every month. The last place you want to be is on the front end of somebody's learning curve. Likewise, it is reassuring (though not considered medically necessary) if a compression of the nerve has been confirmed by a trigeminal protocol in sub-millimeter resolution MRI imaging performed both with and without contrast agent.
Post op recovery can vary between patients. Some people wake up within hours totally pain free. Others may require weeks to months of recovery, depending on the degree of damage that has occurred before the surgery is performed. Likewise, there are some indications that early pain recurrence may be more likely when the compressing blood vessel is a vein rather than an artery.
I wish you well with the decision, in whichever direction it takes you. If I were advising a close family member with circumstances similar to those you describe, I would first ask how long your Type I TN pain persisted prior to the present remission. If that period was five years or longer, i would support a decision to seek the surgery.