HELP....Possibly MVD may not be for me and its booked for Feb 20th

Comment

Comment by Cleo on February 6, 2012 at 1:03pm

http://www.endoexperience.com/documents/3706350.pdf

Comment by Cleo on February 6, 2012 at 12:53pm

I know i just recently met someone on this site who may be nerve damaged by a laser treatment but I never met anyone on this site or any site in 10 years who has claimed cure of tn by laser treatment. If it was caused by a dental procedure? It it not considered a disease! It is considered direct nerve trauma...

Comment by Carol Harmer on February 6, 2012 at 10:58am

Thank you Tammy again.....You are right..This disease is awful...and so many people suffer from it...I will say some little prayers for you and your mum..and too all TN and ATN suffers anywhere xxx

Comment by Carol Harmer on February 5, 2012 at 10:55pm

Hi Tammy....thank you for your input..Sadly I am in Europe...I live in both France and Spain...and sadly they are not as up to speed with TN or ATN any really any form of Nuralgia....but possibly one day they will catch up to the States....

Comment by Carol Harmer on February 4, 2012 at 10:34am

I have since found out the there is a test called MELISA which can determine if you are allergic to metal used in surgical procedure...Sadly this is not available in the UK but it is used in the US and Europe...so anyone who ..like me...has this allergy can have this simple test done to see if we can ever have titanium used in a surgical procedure...If you test positive you need to carry a card warning of this...just in case..please God it dosnt happen....but just in case you are involved in an accident of any description and cannot tell Drs and surgeons that you cannot have surgical titanium implants....good luck xx

Comment by Carol Harmer on February 4, 2012 at 10:30am

I totally agree what you have said bet6252..and I cannot tell you how happy I am that you have had a positive story to tell...but I believe that everyone should be aware of all the facts going into such invasive surgery...Trust me when I tell you that had I been offered the operation when I was in hospital three weeks ago I would have said YESSSSSSSSSSSSSSSS.....a 1000% yes...BUT....after getting home and having MRI etc etc and seeing the surgeon who really gave me less than 10 mins before booking me in for a MVD...trough a translater..as he is French...I did look into it a bit more...discovered this site...discovered that for TN type 2 it can be a bit hit and miss...and also discovering that the titanium used in surgery of this kind has 4% nickel in it....and I am alergic to Nickel...so my condition would have been made so much worse...Also no one bothered to take my medical history, and I had shingles...Herpes Zoster...on both side of my face less than a year ago...Through this site I discovered it was actually dangerous to have the operation with this virus still in your body...So I really have not ruled out  MVD a bit further down the line...but it will be with a surgeon I trust...A surgeon I can understand....and more importantly a surgeon who is aware of all my medical history before he operates....I am so pleased that you are pain free...this is what we all want with type 1 and type 2 TN.....I really hope that you continue to get better and that you are rid of this horrible afflication for the rest of your live...take care...

Comment by bet6252@yahoo.com on February 4, 2012 at 9:58am

Carol, being 1 month post op for MVD surgery, I can honestly say that to date I am so pleased with the results.  I too found this support group  almost too late.  I also had to try not to let all the negative comments concerning this procedure change my opinion from having the surgery.  I was determined to have it done and let God handle the rest.  I have not had any pain since the surgery, I do have some twinges in my lower lip but my doctors said that would also be gone and just to give it time.  I have only taken 1 carbotrol since i weened myself off  it.  The doctor sent me home with a whole bottle , just in case.  I cannot tell you how happy i am.  I had a root canal and the dentist hit a nerve  in the back of my mouth and found out after the surgery that it was a main artery hitting the blood vessel that was causing all the pain.  thus TN.....I would recommend this surgery to anyone who suffers with this type of condition.  I was really scared and afterwards was in ICU for 2 days , but only stayed in the hospital for a total of 4 days.  The pain from the scare is almost gone and to me the worst part of the operation was getting rid of all the nausea and dizziness that followed for about 3 weeks after....still feeling a little bit from both but i can tell it's getting better.  I have had TN for over 2 years and i don't know why i waited so long.  I feel like i have my life back and optimistic about the future with my hubby and all 9 of my grandchildren that i love so much.  Hope my story helps you some.  Yes quit reading all the negatives on some blogs..plus also remember people like me do care that people who have this condition really do get better and that we have to do this for ourselves.  Would i do it again...in a heart beat..!!!!God is good and he used this great surgeon to help me get better...take care and God Bless.

Comment by Carol Harmer on February 3, 2012 at 11:11pm

Thank you Gloria, Jackie and Richard....I appreciate you all taking the time to answer this...You know I wonder how many MVD operations actually have gone wrong due to Titaniem/Nickel allergies...I have read on this site about people waking up and over time the pain has gotten worse...This allergy could well be the reason....I know how it affects me..just on my wrist and ears...can you possibly imagine have that in your head and not being able to get rid of it.....

I rang my Dr yesterday and explained the Nickel allergy and he told me to stop going on the internet and being a scare mongerer and to trust my surgeon .. who knows best...I have now cancelled my MVD.. !!!! I have made appointment with Neurologist in Spain who specialises in TN and ATN  and will continue with drug therapy....I am just so sad that so many patients would have been hurt by Drs ignorance....when a little bit more digging into patients history would have exposed the allergies they have...I do know however that being admitted from A&E in severe breakthrough pain...I would not have made the connection between Titanium plate and Nickel....I really wouldn't have cared...I was in so much pain......This is why this site has been invaluable to me....It has stopped me making a life changing decision on having surgery..which would have failed...for all the wrong reasons.....I thank you all so much for this.....

Comment by Richard A. "Red" Lawhern on February 3, 2012 at 8:14am

Based on your input, Carol, and that of another member, Tinkerbell, I have added a cautionary note to our Face Pain Info section indicating that candidates for MVD should communicate to their doctors concerning allergies to titanium, nickel, and heavy metals.  I have also expanded this note for dental procedures in another section.

   About Major Dental Procedures:   Many members of Living with TN report that their pain emerged after major dental work, or surgery to correct TMJ Disorder or bite problems.   Such trigeminal pain is probably best characterized as "iatrogenic trigeminal neuropathic pain" rather than "trigeminal neuralgia".  Thus it is particularly important for patients to insist that dental specialists provide conclusive radiological imaging which confirms the presence of such mechanical disorders, before having surgery which may cause permanent damage while failing to address an underlying problem which is neurological in origin rather than mechanical or dental.  Also of concern,  some patients are allergic to metals commonly used in corrective or reconstructive surgery to the face -- particularly titanium or the nickel used in hardening titanium. If you know that you have allergies to metals, then tell  your dentist in advance of any facial surgery to correct for bite or TMJ issues. [Discovery Credit:  Carol Harmer and Tinkerbell, members of Living With TN]

Comment by Jackie on February 3, 2012 at 7:41am

Oh gosh Carol! So many people will be surprised at the nickel in titanium, now we see why it is so important to be your own best advocate with our health. 

The comments about your mental health and the French Dr are not rare. Red calls it lazy doctoring, and I agree. That Dr has done you a huge disservice.

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