Hello all I am a newby

[kewlbutterfly]

Hello everyone,

My name is Rachel I am married and have 3 children. I have been diagnosed with both Trigeminal Neuralgia Type 1 and 2 (aka Typical and Atypical) and had MVD surgery on 8-28-06 at OHSU in Portland, Oregon. Unfortunately, the surgery did not work.:( I have a continous pain that is dull and I also get shocking pain with things as simple as cold drinks or cold AC or even brushing my teeth. I feel all alone as no one I know has this and it gets old to my hubby hearing that I am in pain all the time.

I have tried Trileptol, Neurontin, and Tegretol. All have not worked and have caused bad side effects. Is there anyone who has gone through this and had something work?

I have not tried acupunture but some people swear by it. I don't know though. All I know is I am in extreme pain all the time and the doctors have put me on OxyContin until they can find something else to try. AGGGGHHHH! This is such an aggrevating thing to go through, I would not even wish it on my worst enemy. I can see why in the 1800's this was known as the "Suiside Disease."

I want all those who are considering going through MVD procedure that it is worth it, even if it doesn't work. I can at least say that I tried. OHSU is an awesome hospital to have it done at, I suggest Dr. Kim Burchel since he does hundreds of MVD's a year.

I wish the best for everyone in here and you are all in my prayers! I hope to get to know you all, as it is good to talk to someone who is going through the same thing.

Take Care,

[KIMMERS]

Hi Rachel,

Welcome to BT. I am so sorry that your MVD didn't work. I have had a failed MVD also. But, I've also had a successful MVD. I feel as though sometimes we repeat our history, but then we get newbies that don't know us. I had the pleasure of meeting Dr. Burchiel at TNA's national conference in Oregon just last month. Unfortunately there are no guarantees on these surgeries. I currently have two peripheral neuro-stimulators to help me control my pain. I take maintenance medication but the stimulators help me tremendiously. If you would like to know more about them, I would be happy to tell you.

I hope you find a way to have some pain free days.

Kim

[kewlbutterfly]

Yes, I would like to know more about the peripheral neuro-stimulators. Is this something that a Neurosurgeon would place? or a pain management physician? Do you have Type 1 or Type 2? I am just so tired of being in pain. What do you use for back up pain? Does this damage the nerve? Dr. Burchiel did not want me to have any damaging done to the nerve since I am so young. Thank you for your help, I will do some more checking in to those. Thanks again!

[jenlw]

Hi there, I have tried quite a few meds also! I have tried tegretol, lamictal, amytriptyline. at the moment I'm on epilim and neurontin, this combinations seems to be working well in terms of pains control. I have atypical tn and everyone is different so it's hard to tell what will and wont work, it's really just trial and error! I hope you find something that helps, feel free to email or talk to me or someone else, we are all more than happy to help! :)
Jen

[ella138]

Hi Rachel
I'm sorry you are going through so much right now, I am glad you found us though. Although we have loving families and friends who really do care and try hard to be there for us, they just can't really know what you are going through. Many times I found myself suffering in silence because I was so tired of hearing myself complaining. I didnt want anyone to get "desensitized" to my problem and pain, just because I kept repeating it and complaining.
You will get none of that here, We all know and we all care.
I had a sucessful MVD about 15 months ago, but it took 3-4 months for the pain to go away. I was very upset because I thought it didnt work, but then one morning I woke up and realized I'm not getting zapped anymore. So all I'm saying is the body does some strange things when it comes to healing and you never know? Your surgery is not that old. Did your surgeon find a compression when he went in? How long have you had TN?
I did go the acupuncure route. I tried it for the full recommended course of treatment (I think it was 10) and it did absolutely nothing for me. That's not to say it doesnt work on others. I know I was willing to try anything!
I think you should look into the neurostimulators that Kim was talking about. She's the expert on those.
We are always here when you need to talk, vent, a cyber hug etc., and we all really do understand what you are talking about and experiencing both physically and emotionally.

[baywatcher]

Rachel, I'm sorry your MVD hasn't helped you - although as Ella said, it may take a little time for the pain to be relieved. You might try searching this site for a post on advice to caregivers and family members. Tracy (Tots) posted it a short while ago and I thought it was a great aid to communication. I know how tough it must be, even for those who love us, to understand the effects of the constant pain. While we hate to hear of another person suffering from tn, we do enjoy the support we get from the other forum members - come on back and add your voice to the group. Nancy

[ToTs11]

Hi Rachel,
Welcome to the forum, though sorry you find you have to be here due to your pain.
Here is the post Nancy mentioned (also posted in newbie stickie) you could print it off and show your husband.
Stick with us, we all understand what you are going through.

Love Tracy.
Caring for someone with Trigeminal Neuralgia

This article is written for the benefit of those people who are caring for a sufferer of TN. It describes the very worst circumstances because it is at those times that your help and understanding are most needed. Fear not, it is by no means all doom and gloom! Thankfully, there should be long periods of remission, new drugs are coming onto the market with fewer side effects, and many TN sufferers obtain complete and long-lasting or permanent relief from surgery. But if your partner or loved one is having a rough time just now, we hope the following may be of help.

It is sometimes very difficult to be sympathetic or understanding when a person has a long-standing illness or pain, particularly - as the case of a TN sufferer - they may look perfectly well and healthy. A vicious wound or a broken or disjointed limb has a visual impact and elicits more sympathy than does a hidden pain, but the suffering can be as bad, if not worse. At least with a severe cut or a broken arm, the sufferer (and the carer) knows that, given time and the right treatment, the injury will heal and life will get back to normal again. TN is an invisible disability and, sadly, the prognosis for TN is not so good. Often the outlook is that it will get worse, not better.

TN is unpredictable. It can sometimes be triggered, for example, by a facial movement, such as smiling or chewing, or by the lightest touch or even a cold wind or a draught. On other occasions, though, the same “trigger” will have no affect at all. It’s therefore easy to believe the sufferer is “putting it on”, making a fuss or deliberately avoiding a situation. This is not the case.

There may be times of complete remission, possibly even for years, but these are likely to lessen with time. TN is a progressive disease that requires surgical intervention or treatment with powerful drugs. The drugs can have unpleasant side effects and often the dosage needs to be increased. The surgical procedures can be a frightening prospect. This adds another spectrum to the illness – that of fear and very often of depression.

It is hard enough coping with someone in pain, but even more difficult if that person is fearful and possibly depressed. You may think the sufferer is becoming “paranoid” that the pain might return. The pain is quite literally unbearable and debilitating – like a jolt of lightening – and can be quite terrifying. As you have probably heard or read, it is described as possibly the world’s worst pain. It can be fleeting and so sudden that it’s almost over before it’s begun, leaving the person momentarily frozen with shock. But the jolts can be “zapzapzap” continuously, which is totally incapacitating. The aftermath of what feels like several thousand volts jazzing through your face or head can leave you weak and petrified to move for fear of triggering another attack. Yes, the sufferer is quite likely to be paranoid that the pain might return. TN does that to you!

The person you care for may have difficulty in talking, eating, smiling and laughing. They may suffer facial twitching and/or involuntary head jerks. Additionally, high doses of medication may make them mentally slow, forgetful and confused. They may be exhausted and depressed. Not good company all round really!

You might find you have to sacrifice activities that you both once enjoyed together. If the TN sufferer is badly affected by movement of the mouth, they may not be able to talk and can often be unwilling to join in a social occasion. (They are even seemingly unresponsive to their nearest and dearest, but not through choice.) If they have difficulty eating and drinking, they will be reluctant to go out for a drink or a meal. If their TN is triggered by cold or wind on the face, they may avoid going outside, and so become reclusive.

This makes life harder for all concerned and it is important that the carer does not also become isolated and uncommunicative. Both of you need the friendship and company of others. Unlike, for example, migraines or MS, TN is a little-known disease and will require explanations. You will need to make sure your wider family and friends are aware of the situation and ensure they are supportive too.

If you are looking after or even just visiting someone who is affected in this way, remember that your care and attention is invaluable. They may not be able to express their gratitude, but it will be immense, you can be sure of that. At times when their pain is severe, try not to engage them in long conversations (you may only get a grunt by way of a response!), but just your presence and kind words will do much to alleviate their distress. Try not to make them feel as if they are a burden (even if they are!). Little acts of kindness and words of encouragement mean so much.

Try to accept the fact that they will have good and bad days, and do your utmost to be there for them on the bad days as well, even if it isn’t much fun! It also helps if you can learn as much as possible about their problems so that you can explain the situation to others, hopefully eliciting their sympathy and help – thereby lightening your own load. Also, the interest you have shown by taking the trouble to broaden your knowledge will be greatly appreciated.

To be in the company of a fellow sufferer is comforting beyond belief, but better still is to be with a loved one who has done everything possible to really understand the problem and is patient and sympathetic.

The more you read up on the subject, the better will be your understanding of what the sufferer is going through and the more you will be able to help and advise them. The best starting point would be the book, Striking Back – The Trigeminal Neuralgia and Face Pain Handbook, written by an American neurosurgeon and a journalist and former sufferer, which is available direct from the TNA-UK at £16.50 including p&p.

The pain may strike when talking, so be aware that conversation may be halting or may cease altogether for a while. If it strikes during mealtimes, eating may be slow or hesitant. If you are in company when this happens, you should be aware that your partner may have “seized up” and it would be helpful if you could take over the conversation until he/she recovers or explain to friends why your nearest and dearest has stopped “mid chew”, so to speak. Eye contact messages between you, or hand gestures, will become more important. You may even spot the flinch or hear the intake of breath. Try to pick up on these signals quickly and take appropriate steps to prevent your partner having to suffer embarrassment or further unnecessary pain in trying to explain why they cannot talk or why they are taking so long over their meals.

The sufferer may find it almost unbearable to wash their face or clean their teeth properly. You might have to put up with someone who has bad breath and whose personal hygiene leaves something to be desired. It isn’t their fault and this situation will be temporary!

In the case of couples, the disease may also have an affect on the intimate side of the relationship since the sufferer will not want to kiss or be kissed, have their face or head stroked or, sometimes, risk a hug. This loss of intimacy may appear to be a form of rejection. Please don’t misconstrue it as such. The sufferer may yearn for physical or intimate contact but be frightened that it may trigger a jolt of intense pain. It can almost seem like a form of aversion therapy to have an electric shock when partaking of a pleasurable pastime!

Because the anti-epileptic drugs are designed to suppress electrical impulses firing in the brain, they also have the same deadening effect on other brain functions, such as memory and thought processes. If the TN sufferer is on high doses of medication, their memory could be badly affected. They may have trouble with word recall, they may repeat themselves, forget important dates or arrangements, appear confused or muddled. To some this is a great source of embarrassment and it can make them very self-conscious, as well as being unimaginably frustrating! You may need to be their memory, their prompt and their organiser. Try not to take over the organisation of their lives, but if you are able to “catch them when they fall” and not get irritated at their forgetfulness or temporary stupidity, it would be a great help. The medication may also make them extremely tired and sleepy. The more sleep they are able to get, the better, so try to be understanding about this, too. They may be struggling to achieve simple daily needs while experiencing overwhelming fatigue.

In an emergency, it is possible to get immediate (but, of course, temporary) relief from a “nerve block”. It is always a good idea to write or type out notes about the patient’s TN medical history to take along to a hospital or pain clinic because this is invaluable and even the best carer cannot be expected to remember it all.

The sufferer may have visited several practitioners over many years, been disbelieved and patronised, they may have tried dozens of treatments and therapies, been nauseated and debilitated by the medication, they may have lost their quality of life, suffered desperation and disillusionment.

As a carer, you will need to be protective and supportive. You will need a positive attitude and perseverance. You will need compassion, patience and sensitivity. Doctors, neurologists, neurosurgeons and fellow sufferers are all looking for ways to find a cure. You can help.

Good luck!

[macy]

Rachel,
Welcome !! Sorry you need us, but since you do, Glad you found us. You will find a lot of support here. It is better than any medicine. This group has gotten me through some rough times. We all understand each other better than any one else ever could.
I do not know if Lyrica will work for you, but it has done miracles for me since I started taking it in July. I still need a small dose of Tegretol as a booster, but so far, I am pain free. I was on Neurontin before and it had stopped working. I kept increasing the dosage and all that did was cause my ankles, gums, and who knows what else to swell up like baloons. Lyrica does not do that and I have not had to increase the dosage since I started it. I have decreased the amount of Tegretol I was taking to 1/4 the amount. I have not heard from many people on Lyrica, but for me it works and I was in a lot of pain before I began taking it.
Stay with us. Someone will help you.
Macy:)

[kewlbutterfly]

Thank you to all that have replied!!! I have been keeping track of everything and appreciate all you guys/gals have done to make me feel not alone!

ELLA138,

In answering to your questions:

I had Dr. Kim Burchiel at OHSU in Portland, OR do the surgery. He said that I had two different areas of the trigeminal nerve that were compressed and also I had extensive adhesions that were removed at the base of the trigeminal nerve. He said the adhesions would be there only from some sort of head trauma, maybe as a child. He told me before surgery that I only had TN type 2 and then after they told me I actually have TN types 1 and 2. I am a natural born researcher and as soon as I started with pain and going in and out of the E.R. I started looking online and knew it was TN type 2. My pain started July 6, 2006 at 6am, I remember this cause I woke up from sleep in EXTREME pain. It was like a bad earache that would not go away, I went to the doctors and she said "You're okay, no ear infections" but thanks to her she did further investigation into my pain. July 2006 went to have my teeth checked out by the dentist and he recomended root cannels on two of my teeth. I saw my neuologist July 17, 2006. He had me get an MRI that proved I had TN. My neurologist then sent me directly to Dr. Kim Burchiel and met him on August 1, 2006. Surgery was on August 28,2006. I am going to give the surgery more time to heal though. I pray that the pain goes away.

I have also tried Triletol, Tegritol, Neurontin and so far nothing else. I am now seeing a Neuropathic Pain Management specialist, so hopefully he can find something that will work on me.

Thank you,

Rachel

[ella138]

Rachel, what stands out to me in your posts is
a. You had an excellent surgeon
b. he did find 2 compressions
c. you have not had TN all that long (compare to most people before they are diagnosed)
d. he found adhesions on the trigeminal nerve.
e. your surgery is only 2 months old

This tells me you still have a chance. The surgeon you had is experienced and knows his TN stuff. He did his job in there and relieved the compressions. The fact that your nerve was not compressed for too long before the surgery means there should be no significant indentation in the myelin sheath (the protective coating around the nerve). The adhesions he found may be the only wrench in this mystery. However, if he says you have had them since childhood, and you have had no reaction from them until this past summer, maybe they are not part of the equation. :confused:
I think you need to give yourself more time to heal. Believe me when I tell you that I know this is easier said than done, however what choice do you really have. It took me and others (like Kathy) over 3 months for the pain to deminish. Of course there could be other things going on in your nerves, but you can only work with the information you have and all the information you have so far, points to a good possibility of a decent outcome.

[JeanC]

Hi, Rachel,

I'm so sorry you're still in pain after surgery, but don't give up hope - it may just not have kicked in, yet, especially considering all you had going on in there.

I just wanted to quickly tell you about the very active TNA Support Group in Portland. I don't know how close or how far you are from Portland, but since you had your surgery there, I assume not too far. They helped put on the TNA Conference last month (as Kim mentioned), that was hosted by your surgeon and OHSU. As I remember, Ruth Purchase was turning over leadership to, I think, Brenda Dengo, but here's what's in the TNA's list -

Support Group -
Ruth Purchase
503-842-4938
email: pacificnwtna@hotmail.com

Telephone Support -
Enterprise, OR
Molly Murrill
541-426-3749
email: hubenme@uci.net

Portland, OR
Brenda Dengo
503-591-5451

If you email, put "TNA" in the subject line, so they know what you're emailing about (and you don't end up in a spam folder! :eek: ). There are plenty of TN'ers in the Northwest so you are most definitely not alone - not to mention the family you've just found here at BT. :)

Holler if I can give you any other pointers. Give Brenda or Ruth or Molly a call - they're all very nice and helpful and they know from experience what you're going through. I hope things improve for you soon!

Jean

[kewlbutterfly]

I am still going to wait and see what happens it maybe that the nerve is just aggrivated from surgery. I still would have done it over again because there is that chance for the MVD to work. I see Dr. Burchiel in November so I will see what he thinks.

Thank you all for your posts and the support you have shown for myself and others.

Thank you!!

[irishchick]

Hi Rachel, I had the MVD in March 2005, and it took 6 months for the pain to go away (for the most part). I still get twinges, especially with increased stress. I didn't go off of TN meds until 7 months later. Now I am on no meds other than for daily headaches from the surgery.

I hope that you are in this category and it is simply a matter of time for you as well. I was on neurontin and tegretol, at times combined with baclofen (which was the catalyst for settling attacks down).

My doc (same as Ella's) indicated that he expected me to wake up pain free, so I was really discouraged that it "didn't work" after going through **** for the surgery. I dont' know how long most neurosurgeons track their patients to get an accurate success rate, but I think it should be for at least 6 months, so that if you are not immediately pain free, there is still hope.

Thinking of you and sending healing vibes your way!

karen