Yes, I do wish there was one pill to make us pain free. I would just Hope and Pray I wouldn't have a allergic reaction to it, lol. I don't take Lyrica or the other meds you mentioned but I am going to ask my Neurologist about them when I go back the end of the month.
xxOxx
Carol, I take Lyrica and it does seem to work.... I have to take from 450mg to 600mg a day...but it's the only meds that have helped me.
Carol Harmer said:
Are any of you on Lyrica.....I was on such a large dose of Gabapantin...and I have to say the Lyrica is better...I dont feel so woosy and confused....and I also take Trilptel....its in a bottle and you can take 20mls a day...and Amiltripaline.....you can take loads of that...Im on 150mgs..but Dr said if really bad pain...take 200g..I think its a case of suck it and see...
Dont you all wish there was one pill that you could take to make us pain free...I do....I wonder if someone really famous got this..would there be more research done...we need a voice....a famous voice.... someone that will get people to listen to us xxx
Mitzi said:Bonnie, when I thought the Trilepta wasn't working, and I was only taking 150 mg, instead of upping the mg, the Dr. changed it to Gabapendin 300 mg. It felt like my cheek was on fire every couple for minutes for about 30 seconds, which was something I had not felt before. It was so bad that I had to stop taking it and go back to taking the few Trileptas I had left in my cabinet and call the Dr. to tell Him to prescribe the Trilepta again just to give me a few more mgs. Now I'm on 300 mg of Oxcarbazepine twice-a-day, although the electricity chocks on my lip and part of my cheek get worst before it gets better, especially when I say down, it seems to be working at least 75 to 90% better than before. All of this to say that maybe the reason for your constant cheek burning may be due to the gabapentin.
Maddy said:
Please excuse me if this is a stupid question, but that is what these drugs do, make it hard to think rationally.
Did you have the tooth surgically removed and that is what started all this? "OR"
Did you already have TN and had the tooth surgically removed which caused you the constant burning?
Hang in there,
xxOxx
Bonnie said:Your story really gives me something to think about. I am in constant burning pain in my lower right side of my face, chin, mouth, tongue, gums and teeth due to having a tooth surgically removed. I was having thoughts of some type of hopeful surgery to make it better as I am not getting any relief from my meds. I am currently on 3600 mg of Gabapetin and lidoderm 5% patchs. I have asked my neuro for something to add to it to help but she says "there's nothing else". REALLY tired of hearing that. I am depressed and just want to scream at people... PLEASE LISTEN TO ME. I believe there is some type of med out there that would help me to manage my pain more. I am taking your story to heart. Thank you for posting and God bless you. I will keep you in my prayers. Bonnie
Hi Carol, I have a question. Did you start a lawsuit against this Doctor for malpractice? Because he did not tell you what the consequences would be for cutting the nerve.
No I didnt....and the reason for not doing so was that I would have to hire a French lawyer to sue a highly regarded French proffessueur and it just wouldnt have happened....The French close ranks...and no one has ever been able to sue or take to court any French Dr...This man was Director of Surgery and head of Neurosurgery...Trust me...I would not have stood a chance..It would have cost me 1000's to get absolutely no where... I did enquire about it when I was first diagnosed with ATN...because a French dentist caused this....but was told in no uncertain terms to try and sue the dentist was a waste of time....so I knew I had absolutely no chance of even trying to sue the surgeon....
To be fair...It would only have dragged on for years anyway...and would have meant me keep returning to France...I dont ever want to go there again....and want to try and move forward and live with the damage he has caused me...Because also he did not speak English....they could say that he told me...but my interpreter got it wrong....who knows...who cares...Iv got it..and nothing can be done to fix it...so I have closed that door and moved on.....sadly...xx
Carol I so admire your attitude and Jerri's and the attitude of everyone else you is coping and getting on with life with AD xxx
Cleo said:
Tens of thousands of successful rhizo procedures for tn is bunk!
Richard A. "Red" Lawhern said:Cleo, there are tens of thousands of people who have had successful rhizotomy procedures which reduce pain by disrupting the outer layer of the trigeminal nerve with a controlled lesion (they do not cut the nerve). So on this one I must suggest that your generalization is over-broad, and is NOT in the interests of many TN patients.
Regards, Red
Cleo said:Any lesion on the nerve will result in the most wicked pain known. compression without actual destruction is most likely the better type to live with. the key to success is when the nerve is not scathed in the wreckage of the vein or whatever is in its path along the tn branch.
I have to agree with Cleo ..after talking to my surgeon here in Spain...this time a well reputed Neurosurgeon...He said he would never advise severing the nerve in anyway shape or form....or doing anything to damage it Rhiztomy included.......His MVD sucess rate is 95%....but he does not use Teflon...he considers it danerous and outdated and says that this is perhaps why so many MVD fail first time round...He too knows the dangers of surgical titanium thus dosnt use it...or titanium surgical staples...he glues round the wound..and instead of titanium he uses bone....His name is Benjamin Lopez...please look him up and read some of his work...It is eye opening....
Cleo said:
Tens of thousands of successful rhizo procedures for tn is bunk!
Richard A. "Red" Lawhern said:Cleo, there are tens of thousands of people who have had successful rhizotomy procedures which reduce pain by disrupting the outer layer of the trigeminal nerve with a controlled lesion (they do not cut the nerve). So on this one I must suggest that your generalization is over-broad, and is NOT in the interests of many TN patients.
Regards, Red
Cleo said:Any lesion on the nerve will result in the most wicked pain known. compression without actual destruction is most likely the better type to live with. the key to success is when the nerve is not scathed in the wreckage of the vein or whatever is in its path along the tn branch.
Cleo, you are entitled to your opinion -- but you are not entitled to represent it as truth to people who may be helped by surgical procedures such as rhizotomy. Either provide definitive reports from medical literature, or put it where the sun don't shine!
Regards, Red
Cleo said:
Tens of thousands of successful rhizo procedures for tn is bunk!
Richard A. "Red" Lawhern said:Cleo, there are tens of thousands of people who have had successful rhizotomy procedures which reduce pain by disrupting the outer layer of the trigeminal nerve with a controlled lesion (they do not cut the nerve). So on this one I must suggest that your generalization is over-broad, and is NOT in the interests of many TN patients.
Regards, Red
Cleo said:Any lesion on the nerve will result in the most wicked pain known. compression without actual destruction is most likely the better type to live with. the key to success is when the nerve is not scathed in the wreckage of the vein or whatever is in its path along the tn branch.
thank you for sharing your story Carol. You are a strong amazing individual with so much life in you!
Thank you Betty...Much appreciated.....I used to be stronger....and had much more life in me.....but I am getting there again....I will not be beaten....well fingers crossed....x
Betty said:
thank you for sharing your story Carol. You are a strong amazing individual with so much life in you!
Excuse me for asking...but have you had any of these surgical procedures for your TN or do you have ATN...and if so did you find these surgical procedures helped you...Or are you taking the medication...and that is helping you through TN or ATN....or have you had MVD and are now cured....well not cured exactly ...but you know what I mean....I dont think we are ever cured..but I was interested as to what you had...and how you have coped with it..and by what means...
Richard A. "Red" Lawhern said:
Cleo, you are entitled to your opinion -- but you are not entitled to represent it as truth to people who may be helped by surgical procedures such as rhizotomy. Either provide definitive reports from medical literature, or put it where the sun don't shine!
Regards, Red
Cleo said:Tens of thousands of successful rhizo procedures for tn is bunk!
Richard A. "Red" Lawhern said:Cleo, there are tens of thousands of people who have had successful rhizotomy procedures which reduce pain by disrupting the outer layer of the trigeminal nerve with a controlled lesion (they do not cut the nerve). So on this one I must suggest that your generalization is over-broad, and is NOT in the interests of many TN patients.
Regards, Red
Cleo said:Any lesion on the nerve will result in the most wicked pain known. compression without actual destruction is most likely the better type to live with. the key to success is when the nerve is not scathed in the wreckage of the vein or whatever is in its path along the tn branch.
Carol Harmer said:
Excuse me for asking...but have you had any of these surgical procedures for your TN or do you have ATN...and if so did you find these surgical procedures helped you...Or are you taking the medication...and that is helping you through TN or ATN....or have you had MVD and are now cured....well not cured exactly ...but you know what I mean....I dont think we are ever cured..but I was interested as to what you had...and how you have coped with it..and by what means...Richard A. "Red" Lawhern said:
Cleo, you are entitled to your opinion -- but you are not entitled to represent it as truth to people who may be helped by surgical procedures such as rhizotomy. Either provide definitive reports from medical literature, or put it where the sun don't shine!
Regards, Red
Cleo said:Tens of thousands of successful rhizo procedures for tn is bunk!
Richard A. "Red" Lawhern said:Cleo, there are tens of thousands of people who have had successful rhizotomy procedures which reduce pain by disrupting the outer layer of the trigeminal nerve with a controlled lesion (they do not cut the nerve). So on this one I must suggest that your generalization is over-broad, and is NOT in the interests of many TN patients.
Regards, Red
Cleo said:Any lesion on the nerve will result in the most wicked pain known. compression without actual destruction is most likely the better type to live with. the key to success is when the nerve is not scathed in the wreckage of the vein or whatever is in its path along the tn branch.
Thank you for a strong warning that I am certainly taking to heart.
Carol Harmer said:
Maddy…I had a tooth removed…6 years ago…and in a space of 8 months has a further 2 removed…by the same dentist…and when the last of my upper back teeth was removed and the pain was worse than before…I knew something was wrong…I thought I was going mad…but it was a year on before I was finally diagnosed with TN1 and 2…so I believe…strongly…that it was having that first tooth removed that started this chain reaction…To make matters worse…I didnt even have a toothache…it was a routine 6 month checkup…
Bedrestmom… I think I could actually cope with the numbness…when I have had a few hours (normally when Iv got thats it…have another pill) of pain free moments…the numbness is there…but you can cope with that…BUT…then the pain comes back quite quickly…and you are thrown once more into this 24/7 relentless pain…releived only by swallowing copious amounts of medication combined with Xanex to sleep…Tonight has been bad…4 hrs sleep…then it wakes you up…and thats with the amount of meds I take !!! I am lucky tho…I just come to my office and work…and thats how I cope with the pain…I work through it…
Cleo…my NS down here who has spent many hour with me in tears since having my nerve cut…has said…categorically …that any interference with the nerve…be it cutting it…compressing it…or whatever…can cause…not always…but too high a % for him ever to inflict that on another human being…such savage pain… permanently …for life…for ever…till you die …pain…that he would never contemplate doing these procedures…and after being a NS for 25 years.specialising in TN…I go along with him…Imagine…if you have TN1 and 2…can you honestly…in your heart…imagine a pain worse than that…well enter the nerve cutting surgeons…If someone had told me a year ago that there was a worse pain than what I already had…I would have laughed at them…well…this is worse…and for that reason…I would scream…rant and rave…at any one who was contemplating having this done…NO NO NO NO…dont do it…even if 1% of procedures ended up with chronic AD…its too many…and why would any reputable NS refuse to do it…because of the problems it can cause…which leave you worse off…Listen…we are all here on this site for one reason and one reason only…Its a support group for those with this disease…I found this site too late…a series of errors led me to where I am now…Its too late for me…but its not too late for any of you that were possibly thinking that cutting the nerve would solve your problem…It dosnt…and if any of my fellow TN sufferers can believe this…it can actually make your prior TN pain pale into insignificance…and I for one wouldnt not wish that on my worst enemy…
Thank you for all your well wishes…love and support…xxx
I am very sorry to hear of your ordeal, I am not sure however, if the nerve is cut that you still have pain.
I will pray for you. I first had Gamma Knife, and that only helped me for about 6 months, and then it came back with a vengeance. But I remember researching this subject to death first, and then it took some time before I decided in favor or MVD.
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,
Carol: I am uncertain if you were addressing me personally when you wrote "Excuse me for asking...but have you had any of these surgical procedures for your TN or do you have ATN." But I'll try to address your question.
I am the spouse of a TN/ATN patient whose combination of Typical and Atypical symptoms presented first in 1996. She has since developed pain of differing types on both sides of her face. Carbamazepine (Tegretol) was successful in managing the pain when we learned that she had this disorder. She was later assisted by a neurologist at her own initiative in 2002 to transition from Tegretol to Neurontin. Her intention was to reduce the burden on her liver (Carbamazepine is metabolized in the liver, and Neurontin is not). She has had relatively few side effects from a stable dose of 2700 mg/day (800 mg with meals, 300 mg at bed time), other than occasional word-finding difficulty. She hasn't had any of the surgeries. She has also been through Post Herpetic Neuralgia in a case of Shingles. Treatment with anti-virals and Neurontin was successful in putting the PHN back into remission, though she continues to deal with the pain she had before Shingles.
I have also been active as a patient advocate and online research analyst for chronic facial pain patients since 1996. I was webmaster for the TN Association for three years. I have corresponded with well over 3,000 pain patients, family members and physicians during that time, and published on the Web in multiple venues, including Allegheny General Hospital, Web MD, and a now-defunct website called "facepain.com" (the latter with Cindy Fleishman, a long-term chronic face pain patient). I wrote almost all of the Wikipedia entry for Atypical Trigeminal Neuralgia. I have researched and written a lot of the information materials indexed from our page menus here at Living With TN. Thus I believe I have some credible understanding of the state of medical knowledge and patient experience in this disorder.
From that background, I offer the following assertions that center on the current thread:
(1) Peripheral neurosurgery - of which RF Rhizotomy is one variety - may be an appropriate step for TN patients who have been unsuccessful in finding a medication solution and whose quality of life has been deeply impacted by untenable levels of pain.
(2) Prevailing medical opinion is that the destructive procedures (generally, RF Rhizotomy, Balloon Compression, Glycerol Rhizotomy or Gamma Knife / Cyber Knife), are significantly less effective for Atypical TN than for Typical TN, and may indeed add damage to an already damaged nerve. I've heard several neurosurgeons state that they would not use any of these procedures as anything more than a last-chance high risk attempt to control pain that is otherwise uncontrollable. A few neurosurgeons regard Gamma Knife as outright "barbaric" in the residual damage that it can create in adhesion to the nerve near the target zone.
(3) That being said, the consensus is that MVD is the "gold standard of practice" against which all other procedures are compared for surgical management of TN. Some neurosurgeons won't do MVD with ATN patients either. Others regard the procedure as appropriate for anyone who has a component of trigeminal pain which presents as Typical TN, even if ATN symptoms are present and dominate the patient's pain experience.
(4) Medical opinion is almost universal that neurectomy - the total severing of the nerve or of a downstream branch of the nerve - is neither medically appropriate nor safe for TN patients of either type. The risk of deafferentiation pain or anesthesia dolorosa is significantly higher with neurectomy than with any of the other procedures used against TN.
(5) Even with MVD where there is MRI evidence of a vascular compression before the procedure, there are risks, some of which are significant. Small numbers of patients experience CNS fluid leaks, meningitis, hearing loss, loss of blink reflex (with a risk of corneal ulcers), persistent and bothersome numbness, or anesthesia dolorosa. The highest reported statistic I have seen on AD in reaction to an MVD have been on the order of 4% in retrospective reviews of over 1500 patients. If other members have seen medical literature sources with a higher number, please forward references.
(6) Overshadowing all of these trends, is a remarkable and persistent lack of consensus among many practitioners in the medical community. Some practitioners persist in the barbaric practice of labeling trigeminal pain as a potentially "psychogenic" disorder, despite a total lack of evidence that any such medical entity actually exists. Everybody seems to be wrestling with the need to differentiate between TN, Trigeminal neuropathic pain, various forms of headache, and symptoms of TMJ disorder. Treatment options are different for these variants on face pain, so diagnostic labels are important. A similar lack of consensus prevails with regard to measures of success in surgery, rendering comparison of study results difficult or impossible. Among researchers in evidence-based medicine, it is frequent to hear the phrases "evidence is weak" or "quality of investigation was low".
(6) Some practitioners and no few patients accuse others of "fudging their numbers to make themselves look good." This is a hard accusation to refute. But as one who has read possibly hundreds of papers in this area of medical literature, my personal belief is that such occurrences are an exception rather than the rule. That doesn't mean that financial self interest or simple human arrogance don't operate among doctors. They certainly do. But I would regard it as a profound mistake to project from the bad experiences of a few people to indict an entire profession with distrust.
This is a basis for my consistent emphasis of the need for patients to form a teaming relationship with doctors who propose to treat them. 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.
Regards and best,
R.A. "Red" Lawhern, Ph.D.
Resident Research Analyst, LwTN.
Mitzi..He is based in Spain ..on the Costa Del Sol....I will try an find his website for you and post it on here....He is a fantastic surgeon.....and has actually given me hope....when all else failed...
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,
The trouble is...they cut the nerve....and sometimes ...like in my case....you get Anethesia Dolorosa which in actual fact is worse the TN and ATN....that was the problem....xx
Al Hodge said:
I am very sorry to hear of your ordeal, I am not sure however, if the nerve is cut that you still have pain.
I will pray for you. I first had Gamma Knife, and that only helped me for about 6 months, and then it came back with a vengeance. But I remember researching this subject to death first, and then it took some time before I decided in favor or MVD.
"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.
Perhaps it may seem like a small step, Mom, but there is still something you can do. Look up the doctor who has refused to reconsider his own performance, in some of the doctor rating services that are beginning to abound on the Net. Rate his care and don't pull punches. If you wouldn't refer a friend to this doctor, then say so.
That said, there are nuances here of which we need to be careful. Refusing to do another MRI is generally regarded as poor practice. But with a case as complex as yours, it is arguable that even a FIESTA MRI is likely to encounter artifacts in the image which render the procedure less than useful.
Especially if you are dealing with ATN rather than TN, if you've already had a failed MVD and a failed Gamma Knife, then just about the only option left among the surgical procedures may prove to be one of the "destructive" procedures (by which I infer you mean Rhizotomy). It's not an optimal solution. But there ARE no "optimal" solutions after an MVD has been unsuccessfully attempted and the water has been further muddied by residual of damage and nerve adhesions (aka "arachnoiditis") created by a Gamma Knife procedure.
I wish I had more to offer you.
Go in Peace and Power
Red