My doctor has decided that i am on too many meds so by the end of the week said He is referring me to have a Nerve Block. Has anyone else had this? is it effective? has anyone else heard of this?
Looking forward to your comments
nadeem
Nadeem,
Nerve blocks are a catch 22. They have a high rate of working, but for how long is the question. Some people they work for months and when the pain gets worse they get another, but others (myself included) it only works for days or a week.
Be sure to go to someone who knows the anatomy very well.
a nerve block made my pain much, much worse. and we are talking about a simple lidocaine injection. i believe it injured my nerve.
vesper
Hi Nadeem,
I’ve had many nerve blocks, they were given to me by an anesthesiologist who specialises in pain, through the pain clinic I attend. He is a brilliant doctor and each nerve block successfully stopped the pain attacks, always felt like I was coming home from a dentist appointment as it’s like having a local anesthetic, my face and jaw were numb for a while but I was pain free each time at least for a few days afterwards. So, that’s my experience with them. Not pleasant experience having the needle in my face, but was far preferable to the pain the TN was giving me before that.
Cheers ~ Kerry.
hey all, my consultant got it wrong, he sent me for a nerve block but when i got to the hospital they said they couldnt give me one because it needs to be properly booked in etc. So im back to my episodes of pain now. !
guys im having a nerve block tomorrow, i have got to be at the hospital at 7am - im so scared please tell me ill be ok and it will work
As Vesper and others have commented, Nadeem, the record of outcomes for nerve block is more than a little mixed. They do seem to help some patients, some of the time. But persistence of the blocking effect can vary sharply between patients. I’ve heard from some who get no pain relief at all after the first 24 hours, and from some who have weeks to a few months of relief.
One thing that is worth discussing with your medical care provider, though: some professionals who use this procedure believe that more than one nerve block over a period of a few days may be needed by some patients, in order to create a cumulative effect that blocks break-through pain. So it would be well to ask your provider whether he or she has seen this kind of cumulative effect.
I’m coming into the middle of this discussion thread. So please pardon me for offering my two cents a bit late. Likewise, would you mind briefly reviewing just what meds you are on, that your doctor considers “too many”?
Regards and best,
Red Lawhern, Ph.D.
Master Information Miner
Richard thanks so much for your comment, i did not have the nerve block after all as i was told my face will be numb for a year and that scared the hell out of me. Im back to square one.
on 1500mg tegratol
225mg lamogtrigine
150mg of procabaline
hope that helps
Nadeem said:
Richard thanks so much for your comment, i did not have the nerve block after all as i was told my face will be numb for a year and that scared the hell out of me. Im back to square one.
on 1500mg tegratol
225mg lamogtrigine
150mg of procabaline
hope that helps
Nadeem, did you intend “Pregabalin?” I don’t see web references to “procabaline”. The former is the generic form of Lyrica, and is most often prescribed for management of fibromyealgia, diabetic neuropathic pain, or post herpetic neuralgia. Both your Tegretol and your Lamotrigine are at dose rates close to the maximum recommended daily dose. So I can well understand if you feel drugged out at times.
Concerning facial numbness: I’m a bit puzzled over your reference to an expectation of facial numbness for a period of a year. In 15 years of talking to face pain patients, I’ve never heard of a case where nerve block was used, in which it was effective for more than four to six months. The more typical response curve is more like 4 to 6 weeks before a repeat of the procedure is needed to maintain pain control.
Likewise – and this is not to trivialize your attitude or opinions in this matter – let’s presume that a year of facial numbness is a possible outcome. As long as the tearing reflex in your eye doesn’t get compromised, my baseline reaction would be “okay… so WHAT? Wasn’t pain relief what you were looking for in the first place?”
Expand on your thinking about this, if you wish.
Go in Peace and Power,
Red
Richard, Thank you again for your reply. Yes i did mean procabaline, and yes the foil also does say Lyrica, i apologise for my spelling but i dont feel right at the moment. I have constant druggy feeling at the moment.
I wake up, take my pills, feel zombiefied till my next dose and so on. Very rarley do I feel like I am on planet eartch these days. I tried to lose 100mg of tegratol last night as I was pain free for 2 days and assumed I had recovered, but this morning i felt twitiches and immediatly went back to my 500mg dose for the morning. I feel pain free, but i feel so zombiefied and sick its unreal.
as for the nerev block, I was told it would last a year and for the whole time the nereve block would work, so would the numbness of my face. i had the decision to make then and there and I know how depressing a numb face for the period of the nerve block working would make me. Id have a numb face forever as id have to keep going back for a block. I am in a very horrible situation at the moment 
Nadeem, I’ve talked to hundreds of patients over the past 15 years. This is a decision that is up to you, of course. I respect that. But I can tell you from deep experience of other people that facial numbness is a BLESSING by comparison to the zombie-like state you’re going through now. You’re not alone in your reaction to Tegretal and Lamictal, either: tens of thousands of folks have the same level of side effects you do.
Your call, of course.
Regards, Red
of course, “numbness” is a subjective description. it cannot be predicted with any reasonable guarantee to a patient before a procedure commences. sensory aberrations can be as disturbing and bothersome as pain. numbness can hinder the need to speak, chew, eat or drink properly. some people would prefer pain over losing the ability to perform these everyday abilities. choosing “numbness” is not a light decision. and there are plenty of stories where the numbness came and the pain never left.
also, we must consider the language being used by the medical practitioner. “nerve block” may be communicated to the patient, but in reality could mean “rhizotomy.” particularly with an explanation of a year long numbness, this would lead one to believe the treatment is destructive. we also know (you especially, red) treatments are not standardized for quality or failsafes among medical practitioners. how many rhizotomies only leave a patient numb for a year?
a nerve block should never leave a patient numb for a year. all destructive procedures leave a subjective amount of permanent numbness.
vesper
Richard A. “Red” Lawhern said:
Nadeem, I’ve talked to hundreds of patients over the past 15 years. This is a decision that is up to you, of course. I respect that. But I can tell you from deep experience of other people that facial numbness is a BLESSING by comparison to the zombie-like state you’re going through now. You’re not alone in your reaction to Tegretal and Lamictal, either: tens of thousands of folks have the same level of side effects you do.
Your call, of course.
Regards, Red
Hi Vesper,
If I may, I must beg to differ with you on a couple of nuances here – intending no discourtesy, I assure you.
While it is of course possible that people in pain might confuse the words Rhizotomy versus Nerve Block, I find it less believable that a licensed doctor would. The two are not really comparable, nor do they involve the same chemicals or processes. Glycerol Rhizotomy is a very different animal from nerve block administered with Lidocaine. That said, I suppose it is possible that a doctor might use one of these terms intending the other. But I’ve never heard of such an instance.
Likewise, the destructive procedures don’t produce problematic numbness in all patients, any more than they result in persistent pain relief for all patients. As you note, there is a very wide range of patient outcomes, and medical practice hasn’t yet advanced to a state where doctors can reliably predict how a specific individual is going to respond to treatment.
Regarding the issues of numbness, it may be that you and I have talked with different people, and observed different samples of the patient population. I can’t say this is universally true, but in 15 years, I do not recall meeting a patient who voiced the opinion that persistent facial numbness was a problem that outweighed pain relief. Not one, out of more than 2,000 communications. And these exchanges included a subset of patients who experienced difficulties with speech or chewing. The general responses have been to the effect of “I’m having some problems with side effects of the procedure, but those are outweighed by getting a lot of my life back on pain free days.”
Numbness is doubtless a subjective issue, as you note, Vesper. However, I would be quite interested in hearing from people for whom persistent facial numbness or problems with bite, swallowing, etc., seem to outweigh the value of pain relief. This is a perception I haven’t seen represented in the people I’ve talked to.
Go in Peace and Power,
Red
Pat I am so sorry to hear what has happned to you. Its awful and my heart really goes out to you. Im very grateful for helping me. I didnt have the nerve block in the end and im now on a waiting list for Gamma Knife treatment which is less invasive. What do you reccomend?
Thanks
Nadeem 
Pat Akerberg said:
My heart goes out to you, Nadeem, and the conflicted place that you are in. Excuse my coming in at midpoint of this discussion but it is one that interests me a great deal as I was just to see a pain doctor who wanted me to consider a nerve block. Since I already have significant numbness as a result of nerve damage done via an MVD that I had 8 months ago; I am very skeptical and leary of such a procedure for my circumstances.
What I what to convey relative to this discussion is that I find the numbness a source of daily torment and would rather have lived with the TN pain that I had. It was intermittent (and horrible when it came). The painful numbness that I now have is constant with no let up. As a result I cannot chew (have lost 25 lbs.), cannot talk (have lost a lucrative consulting career), have lost my social life (eat, talk, drive) and cannot drive due to the medications (lost my independence). The losses involved in quality of life are devastating. If I had a do over I can say without reservation that I would never have consciously chosen this torture. My situation is one that defies all of the conventional wisdom, like: make sure you pick a surgeon who has done many MVD’s (mine does 5/week), make sure you have visible compressions on your 3-T thin slice MRI (I did), do the MVD surgery before any other intentional nerve destructive procedures (I did), and preferably do the MVD before living with TN for more than 8 years (I did it the first year) and make sure you thoroughly research and understand all of your options and their risks (I did that - all of the science pointed to an MVD as the least destructive, with painful numbness as an outcome occuring less than 1% of the time). And yet here I am now with a severely diminished life and a neurosurgeon who dropped me cold when I had complications. Now no other surgeon wants to deal with my situation and literally none of the 6 neurologists I’ve seen know how to.
My point is that no one can possibly know or predict what is or isn’t going to happen to someone else with any of these procedures. The best advice that I can offer when struggling with all of the wrenching decisions that those of us with TN and other related face pain are faced with is after you’ve done all of the so called “right” things that conventional wisdom suggests, then it’s time to go deep within and listen to your inner guidance until you begin to feel some semblence of peace about your decision. THAT step is just as important if not more so. My decision was driven by a great deal of fear unfortunately that never left me right up to the surgical table. In hindsight I wish I had listened to that fear that was trying to signal me instead of all of the rest.
Nadeem, do you have someone who can accompany you to your doctor appointments and ask clarifying questions and/or advocate for you? Sometimes it helps to have such a person with you because the medications can really do a number on our heads and mess with the decision-making process. I wish you the best,
Pat
I would like to echo and reinforce Pat Ackerberg’s very well thought out suggestions. I hesitated to say very much the same things when I first read of your initial decision to consider Gamma Knife, Nadeem. As Pat notes, the decision ultimately is yours. But I would hope that you inform yourself seriously before you allow a doctor to do a procedure that I am convinced there is a strong probability you will later regret.
Pat is exactly on-target with her observations concerning Gamma Knife. Based on 15 years of research and talking with facial pain patients, if a family member or close personal friend were to ask me for an opinion on the procedure, I would say very much the same things she has: GK is neither “non-destructive” nor “non-invasive”. It also has a poor record of long term pain relief – with fewer than 25% of all patients receiving relief for longer than five years. A study illustrating this range of outcomes is prominent in the “News” section of the home page of the Trigeminal Neuralgia Association at http://www.tna-support.org. Please READ it.
If you (or someone you trust who isn’t in pain) need to research outcomes with medical and surgical procedures, there is a wealth of information at both the TNA website and my personal website. You can start with the following links.
http://www.lawhern.org/pain-bookmarks.htm
http://www.fpa-support.org/learning/articles.html
I wish you wellness. Go in Peace and Power
Red Lawhern, Ph.D.
Master Information Miner
Hi Pat,
so nice of you to message. Im ok at the moment. Im waiting for my MRI which is tomorrow and ive been referred to the Sheffield Gamma Knife centre.
How are you?
x
Pat Akerberg said:
Nadeem,
Since you haven’t posted for awhile I am concerned about you and just wanted to check in and let you know that. I know how hard this pain is to cope with and am hoping that you know there are people here who you can talk to or reach out to for support. We all have our times when we need to lean on each other. Pls. take care.
Pat