Hi Mitzi....He works on the Costa Del Sol....He is based in Fuengenrola...but travels along the coast where he is needed...He drives 70 kilometres to see me once a month.....
Mitzi said:
CAROL, where is DR. LOPEZ located? What is his title, or can you please share his website so that I can be able to find him. I'm in Orlando, FL USA. Thank you, Still in my prayers,
Hi "mom" my coworker had MVD done on both sides of her face 7-8 months apart, they were able to see the artery touching the nerve on the first MRI, but not for the other side of her face, but she insisted for the MVD and her Dr. looked around until he found the culprit, which was a vein and severed the vein and now she is completely painless on both sides of her face, so she says and she looks a lot happier lately. The information for this Neurosurgeon is posted here under the Drs Tab above. God luck
bedrestmom said:
"Red,"
I thank you for your reply.
I am still fairly new to these forums, although I have had a failed MVD, and a failed Gamma Knife procedure in the last year.
I was becoming disheartened by what seemed almost to be "arguing" between members. That does little to help any of us.
I would like to reply to one of your final comments.
I live in the Twin Cities metro region of Minnesota. I have access to both the U of Minnesota hospitals, as well as the Mayo. I am under the care of a NS at Mayo (Dr. Pollack,) who is regarded as "one of the top" in this field.
Unfortunately, he is also the one recommending a nerve destruction procedure. He outright refused to concede that maybe something was missed on the MVD, or that perhaps a new vessel was involved. He even refused to grant me a new MRI to look at the trigeminal nerve.
My point is this: these guys stick together!
I have been working with neurosurgeons for years, as my oldest son has Chiari Malformation and has had three major brain surgeries. It was almost impossible to get anyone in MN to look at him after his first failed surgery, because his NS is so well respected and regarded. We now travel to Chicago for ALL of his NS care...an 8 hour drive away. (On a good day!) It was challenging, to say the least. Even the Chicago NS admits to being "friends" with my son's first surgeon. Thank God, he was also willing to work with him. (And found direct evidence of mismanagement of his care.)
I am in the process of trying to find another NS to work with me. Obviously, I cannot go to the Mayo. When I contacted the U of MN, I was told by the admitting nurse practitioner that I "already have the top NS in the state," (for TN.)
Great. Thanks alot!
I have one final hope, but I know that I need to be cautious...it's very hard for these doctors to go "against" the opinion of another doctor that they see with regularity.
Pleae know that these comments are not intended as argumentative, but rather to share my own experience. For people who live in rural areas, I would imagine that access to neurosurgical care for something this specialized would be incredibly challenging.
Richard A. "Red" Lawhern said:
Do your own research, and bring it back to your doctor for assessment and reaction. If the doctor refuses to work with you or criticizes your Internet research as a useless waste of time, then find somebody else, drop these neanderthals like a hot rock and send letters of complaint to every hospital where they have admission privileges. They shouldn't be in practice.
Carol this is dreadfull . But you seem like a fighter reminds of me have to give it a go as if you dont then you will never know I didnāt go in to having an MVD lightly it took 2 years I keep waiting for th TN to go away as I had been told it could go into remission for yearsā¦ Iām 7 days. Post op still have nigling pains every know and then and donāt know if this will get worst and still have double vision which the dr said would go and itās only seven days Iām so worried things will be the same but if they are at least I have tried as if I hadnāt I would forever had been thinking what if, and if my fait is to have TN then I will have to go In search of new drugs thank you for the post x
You are welcome Victoria...as you say,,if you dont try..you will never know the outcome.....Iv resigned my self to having this as well...If you didnt...you could become so totally depressed....
You have to give MVD time to work...I guess after any surgery we expect the miracle of pain and drug free life...Im sure that some people have a good recovery period..Its only been 7 days for you....Im sure after a few weeks you will feel much much better....I hope so anyway...you take care and rest a lot....xxxx
I think this is the one I was thinking about having I thought they burn the nerveā¦
I dont know if they burn t...but they definitely cut mine...I cant say how your outcome would be...but I do know that down here in Spain they do not use this procedure because of the problems that arise with it....If I knew then what I know now...there is no way I would have let him near my nerve ...or my worst enemy's nerve....Good luck tho....whatever you decide to do...please please...talk to your surgeon...take care xx
"Burning the nerve" as a term is very imprecise. It is sometimes applied by patients to describe the controlled lesioning process that occurs with RF Rhizotomy. Cutting the nerve, however, is medically referred to as "sectioning" -- and it's a much different procedure with much higher risks of intense deafferentiation pain later on.
Regards, Red
Richard A. "Red" Lawhern said:
"Burning the nerve" as a term is very imprecise. It is sometimes applied by patients to describe the controlled lesioning process that occurs with RF Rhizotomy. Cutting the nerve, however, is medically referred to as "sectioning" -- and it's a much different procedure with much higher risks of intense deafferentiation pain later on.
Regards, Red
Did you mean to add something here, Carol?
Regards, Red
Carol Harmer said:
Richard A. "Red" Lawhern said:"Burning the nerve" as a term is very imprecise. It is sometimes applied by patients to describe the controlled lesioning process that occurs with RF Rhizotomy. Cutting the nerve, however, is medically referred to as "sectioning" -- and it's a much different procedure with much higher risks of intense deafferentiation pain later on.
Regards, Red
Yes I did....but it seems to have disappeared.....
I will write it again 2rw ..cant do it now
Richard A. "Red" Lawhern said:
Did you mean to add something here, Carol?
Regards, Red
Carol Harmer said:
Richard A. "Red" Lawhern said:"Burning the nerve" as a term is very imprecise. It is sometimes applied by patients to describe the controlled lesioning process that occurs with RF Rhizotomy. Cutting the nerve, however, is medically referred to as "sectioning" -- and it's a much different procedure with much higher risks of intense deafferentiation pain later on.
Regards, Red
Cleo, et al,
There is a bit less in the article you have quoted from, than meets the eye. The report deals with 42 patients who had "peripheral trigeminal nerve injuries caused by maxillofacial trauma" -- basically neuropathy patients who were injured and had chronic neuropathic pain as a direct outgrowth of the injury. None of these patients was dealing with trigeminal neuralgia as such. Unless there is a discrete and repairable injury to the nerve, microsurgery of this type cannot be applied. Most TN patients do not fall into this category.
Regards, Red
Hi Carol,
I too suffer from AD and TN. I had and MVD where my dr. partially severed the nerve and I had complete relief from my TN for 6 years. Then my nerve regenerated and my TN returned with a vengeance. A 2nd MVD could not be done so I had a balloon decompression done which left me with AD and TN since 2006. I finally was just able to go back to work in Sept 2011 not because I was cured but I just got used to the pain. Now I am off work again due to being very sick since Feb of this year. I have been running a fever and other symptoms. The Dr. believes I may have Addison's disease as well as cancer. I have been out of work since June of this year and my TN and AD are worse.
However like you what doesn't kill me makes me stronger, I must be one strong woman but I'm ready for all these health challenges to stop!
If you need to chat let me know!
Oh God I am so sorry that you are suffering so much....makes me feel stupid that Iv been upset about my health problems...There is something I will say...I was told last year I had bowel cancer...when in fact I didnt...seems the cocktail of drugs I was on gave false readings in a blood test...but you know that kill me kill me now expression, I did wonder what on earth I had done wrong in a previous life to have all this shite.....I dont think Iv met any other person on here who has AD.....Id never heard of it....how the hell does it happen...and why does it happen...How can you have an operation that you think that will help you and then find out it not only dosnt. but makes you worse...I to have been told the ATN will come back and that there is no more that can be done...My surgeon also gave the grim news that as I would have to increase the dose of meds, or take other meds, it will affect my organs....I mean what is all this about....why is the outlook so dire...why isnt there any happy news about AD, ATN TN...So many people have this MVD only to have to have another months or years later.....Why isnt something being done on the research side, that will help to combat this once and for all...I dont want to read papers with statistics on it...I want action !!!!!...You know If I didnt run my own company , and I had the resources to be able to give up work..I would be battering down doors asking for answers....Ok its a rare disease...but it affects many many thousands of people....so it needs addressing...whats the point of making new meds if they ruin your liver and kidneys...I dont get it....So you get TN ATN AD and anyreleif given destroys your liver and kidneys over a period of years...Great if you are 80...but Im not ...Im 56..and a very active young outlook 56...I dont want to be sicker in 10 yrs time because of the drugs......its a catch 22.....Iv only had AD since February...and I have to say its knocked me for six...more than the ATN....but to have both since 2006...Im amazed you have managed to stay so positive.....but then seriously....what the hell can you do....suicide ?? not a hells chance for me....so we manage ...somehow....I have good and bad days.....but I cant just go to bed on my bad days...I have a business to run....which involves extremely long 16hr days....trading the worlds financial markets.. and also helping clients worldwide to trade these markets....God some nights when Iv finished at 10pm...my partner helps me to bed...and I take 3 Xanax tabs, and that puts me to sleep....thats the only way I can sleep..Xanex...without them...god knows....Iv got Morphine here...but how the hell can I work and take morphine....So I take nothing, except the cocktail of Lyrica, Triliptal, etc etc...and even that I dont take 3 times a day...I keep it at 2 so I can function as best I can in my job....My heart goes out to you...You have suffered so much more than I have...and It has nearly broken me this year let me tell you...Iv cried...ranted and raved.....been depressed....been angry...I cant imagine what you must be feeling to have these added illness out upon you.....No one said life was fair....but c'mon , you do need a break....and Im here if you ever want a chat as well...you take care xxxxxxxx
Bump..
I also had my nerve cut back on 10/23/12. My neurosurgeon told me up front in Tn there are NO guarentees ever! Nothing is 100%. He cut a large portion of my sensory nerve to intentionally make my face numb. Permantely numb. He performed a crainiotomy w open partial rhizotomy. Itās not been 3 months and the beast is back!! Eye pain, migraines along w a harp stabbing aching throbbing burning upper cheek and face 
would I do it again in a heart beat if I thought I could get any relief!! I do not regret it at all. The final surgery would be cutting the motor cortex and recutting the sensory nerves. I had two friends who had that done bc their nerves fused back together (yes it can happen) he said the only way to stop pain completely is to cut both of them but its irreversible and the last straw so to speak
. Well I had a craniotomy w an open partial rhizotomy and a large portion of my nerve was cut he explained it before and after he said he took more than he normally would so a rhizotomy can involve cutting a chunk out of the nerveOne small correction, please: neurectomy involves cutting the nerve, but Rhizotomy and Balloon Compression merely introduce a controlled lesion or scar, leaving most of the nerve pathway in place and unblocked. Particularly with Type II (Atypical) TN, a large number of neurosurgeons have strong reservations about any of these "destructive" procedures, unless there is evidence in imagery of some discrete nerve compression by a vein or artery. Neurectomy is particularly problematic because it introduces a significant risk of deafferentiation pain -- which is even tougher to treat than the usual garden variety TN or trigeminal neuropathic pain.
Regards,
Red
Cleo said:rhizotomy- balloon decompression- neurectomy are known as nerve cutting procedures.
My neurosurgeon is tops in the US and there is no one else I would trust except maybe his partner to operate on me, so much I drove 8hrs to have him perform my surgery. Dr. John Tew @ Mayfield Clinic in Cincinnati is my hero!! Yes I have reacuring pain but thatās typical me. My case is not a normal one. I have intractable TN meaning I donāt respond to meds, procedures or in most cases surgery. My life will forever be altered bc of TN
Jeanette -- please get a professional physician's second opinion before you have nerves cut. The risks of that operation can be horrendous. There is a form of pain called "deafferentiation" which may set in when the nerve is totally severed. It can be described as something that happens in the central nervous system when it loses continuity with the sensory nerves at the periphery. That last straw can REALLY get to be the last straw...
Regards, Red
Redā¦I have to agree with youā¦this has ruined my lifeā¦and I struggle every day nowā¦I thought I could beat thisā¦now I know I canātā¦
Richard A. āRedā Lawhern said:
Jeanette ā please get a professional physicianās second opinion before you have nerves cut. The risks of that operation can be horrendous. There is a form of pain called ādeafferentiationā which may set in when the nerve is totally severed. It can be described as something that happens in the central nervous system when it loses continuity with the sensory nerves at the periphery. That last straw can REALLY get to be the last strawā¦
Regards, Red
Carol how are things with you, I and I am sure others often think of you. xx