Feeling 5 years after operation


#1

It has been 5 years now from the time of my operation.
The pain is gone but the left side is partially numb. It feels like I just returned from the dentist and is half numb from novacaine all the time.
Question: Every now and then I get this more intense feeling. It is like a violin string being plucked (vibrations). Covers the eye, nose, upper cheek, gums. Lasts about a minute or less. Do others have that???


#2

What type of operation did you have???


#3

Decompression of the trigeminal nerve.

Ken

-----Original Message-----
From: seatac98 [mailto:trigeminal-neuralgia-cpt3507@lists.careplace.com]
Sent: Thursday, May 31, 2007 8:10 AM
To: kmyers@umn.edu
Subject: Re: [trigeminal-neuralgia] Feeling 5 years after operation


#4

They call the operation MVD. That is all I recall at the moment.

Ken

-----Original Message-----
From: seatac98 [mailto:trigeminal-neuralgia-cpt3507@lists.careplace.com]
Sent: Thursday, May 31, 2007 8:10 AM
To: kmyers@umn.edu
Subject: Re: [trigeminal-neuralgia] Feeling 5 years after operation


#5

My husband had an MVD in 2000 and his pain came back after 14 months
of blessed complete relief. Now, you said that you have numbness
from the surgery? It sounds to me like they may not have found the
compression and severed the nerve - this is typical course of action
for MVD when they don’t find the compression unless you specifically
ask them not to sever it. If the nerve was severed or damaged, the
strange sensation could be anesthesia dolorosa (AD) creeping in -
kind of like phantom leg pain on an amputee. Let me say that I have
no medical training - but I have immersed myself in learning all I
can about TN since my husband was diagnosed with it about 10 years
ago - he is now 42.

So, yes, the pain can come back and it also can change and come back
differently. I recommend that you look into UCC or find a
neurologist or pain specialist (these are great!) that you really
like and be sure to find one who is knowledgeable and listens to you.

Best,

Denise in Oregon

On May 31, 2007, at 8:17 AM, culinarychef1 wrote:


#6

I have “tics” on the left side whihc is numb from a thermocoagulation rhizolysis done in 79.
The pain guy believes they are from anaesthesia dolorosa and not the TN.
 my tn has been burned and cut at the tract so is, for all intents and purposes, dead.)

Carol Jay Levy
author A PAINED LIFE, a chronic pain journey
member, cofounder, PWPI, Persons With Pain International
member U.N. NGO group, Persons With Disabilities

-----Original Message-----
From: culinarychef1 trigeminal-neuralgia-cpt3507@lists.careplace.com
To: leejcaroll@aol.com
Sent: Thu, 31 May 2007 8:24 am
Subject: [trigeminal-neuralgia] Feeling 5 years after operation


#7

You will find a lot of info and responses also at the yahoo trigeminal neuralgia support group. (re MVD, etc

Carol Jay Levy
author A PAINED LIFE, a chronic pain journey
member, cofounder, PWPI, Persons With Pain International
member U.N. NGO group, Persons With Disabilities

-----Original Message-----
From: culinarychef1 trigeminal-neuralgia-cpt3507@lists.careplace.com
To: leejcaroll@aol.com
Sent: Thu, 31 May 2007 11:17 am
Subject: Re: [trigeminal-neuralgia] Feeling 5 years after operation


#8

I also am not a medical person but -
If they severed the nerve that is malpractice. The nerve is never severed from an mvd, When they do that, whihc is rare, it is done much further down, such as at the tract which is done thru the back of the neck.
Trauma to the nerve may be the cause of your numbness.

Carol Jay Levy
author A PAINED LIFE, a chronic pain journey
member, cofounder, PWPI, Persons With Pain International
member U.N. NGO group, Persons With Disabilities

-----Original Message-----
From: OregonDenise trigeminal-neuralgia-cpt3507@lists.careplace.com
To: leejcaroll@aol.com
Sent: Thu, 31 May 2007 12:54 pm
Subject: Re: [trigeminal-neuralgia] Feeling 5 years after operation


#9

Thanks for your ideas. They did find a nerve that was dented from the artery pushing against it. They also found a nerve growing through the artery. He said he wished he had the camera set up as it was very unusual. No nerves were cut, but they did have a mess to untangle and said that it is possible that some damage may have taken place (temporarily they hoped but it doesn’t appear that way). Minor in relation to the pain I had.

Below is a little journal I kept. Not that you desire to read it, but a couple people have said it was a good review with a little humor and that I should share it.
Ken

An overview of my Trigeminal Neuralgia experience & my MVD Operation:
Ken Myers
Hi-
I’m dictating this into the computer so it will go faster. I apologize if there are any typos from dictating. I hope this will explain a little bit about the ailment I suffered from and the treatment I received. It was called TN (Trigeminal Neuralgia). Let me know if you have any question after reading about the experience.

In the spring of 2002 I had a funny feeling that started as a small tangle at the corner of my mouth (left side) every time I touched the spot. It grew within a few days to be very distinct electrical shocks like a battery shock. These shocks spread to encompass my tongue, cheek, and jaw. The intensity of the shocks also grew. There was no pain when I was sleeping which is how this particular oddity operates. During the day though, there were a large number of attacks that I would suffer from. Triggers of the attacks were talking, shaving, eating, and brushing my teeth. The massive attacks lasted from about 15 seconds to 31 minutes was the longest. Once the pain intensified to the highest level, I stopped eating regular meals. I pureed foods and tried to suck it through a straw and hold the straw as far back to my mouth to bypass the trigger area. I came to find that after a big and lengthy attack, the pain would totally stop and I could eat. At those times I would shove food down quickly and the family would just kept bring food until the electrical shocks started again (that would be normally 3-15 minutes; one time I was normal for 90 minutes). I felt like a pig at a trough but I also knew that it may be the last time I’d be eating for some time so I made the best of eating after every attack. We always had food ready for me. The attacks felt like nails being driven into the jaw, massive electrical shocks that just keep coming, and then my face would heat up. After experiencing this I understand why the ailment had such a high suicide rate. Depending on the severity (mine was severe) a person starts to limit themselves in their activity. I could not shave, brush my teeth, eat, our talk without a small attach that felt like an electrical lock jaw and could have a big attack at any time, so it becomes difficult to do much around others.
Well, at first I was told it was a tooth problem and that I needed a root canal. This is a very common diagnosis it appears. Unfortunately, it is also 100 percent incorrect. After the root canal, things just continued to get worse, as if that were possible. I went back to the dentist a week later and he took very close look and indicated that the tooth was dead. I told him (talking like a ventriloquist, which is also typical of the person with this ailment), that I did not question that the tooth was dead, but that the pain keeps getting worse. He thought there was a possibility that it could be neurological. He said he would write me a reference but it would take a couple days. I told him that I didn’t have a couple days and immediately jumped in the car and drove to a neurologist. The nice young lady at the neurologist office told me that she could get me an appointment in three months. I looked at her square in the eyes and asked her to look at me and how bad I looked. I told her that I hadn’t eaten hardly a thing in seven days, that I look like crap, that I have limited physical strength at this point, can’t do my job properly and honestly don’t believe I can make it that long with what I was eating. She told me to have a seat. She had me in within five minutes or less. The doctor said it was a good thing I came in. The doctor asked me to describe what I was feeling. After brief explanation, he stepped out and brought me a copy of what it sounded like I had. It was so close to my exact words that he felt there was no question as to want I had. He started me immediately on several medications attempting to find out what medication or combination of medications would work the best. They are the same medications that they use for epilepsy. After a couple weeks I seemed to respond some to a common epilepsy medication. He then started increasing the amounts of medication slowly over a couple weeks looking for that perfect amount that would eliminate my symptoms. After hitting the maximum dosage that a person should take, and only finding relief of about 50 percent it became obvious that this was not a long-term solution. The side effects were interesting as well. I basically felt like I was walking through a cloud all the time and concentration was very difficult. Though I have to admit, a 50 percent reduction in pain allowed me to obtain basic nutrients needed so that I would stop losing weight. This particular ailment will typically respond a little better to the medication for some people. In those cases, the individuals will reduce the medications slowly every six months until the pain starts to be felt again. The goal is to see if the pain has gone away totally. If so, and the person can do without medication until the pains returned. This ailment will go into remission but is guaranteed to return just as bad or worse.
Since the medications were not working for me, I had to decide between going on full-time disability as I would not be able to perform my job and uncertain what jobs I could perform, or look at more drastic means of correcting this. Essentially the cause is an artery behind the brain that is pinching the nerves. I had three options. I won’t explain each one other than to say that two of them were not as radical but had a much lower success rate and some had very nasty side effects. I went to the third choice of having brain surgery. This is a decision that was difficult to make because of the medications. It was hard to clearly evaluate each option and feel like you knew what you’re doing. Once I decided to go forward with the operation, I felt at peace.
The operation was performed at the Mayo hospital on July 11th 2002. The family took be down and stayed with me as I was very limited in my driving abilities. They offered free massages at the hotel as most of the clientele were patients at Mayo. They actually do this in the lobby. After the young man finished with me I asked him when the last time was that he received massage. Since it had been several weeks, I offer to give him one. Of course my girls were embarrassed because Dad once again was doing odd things in public. I have found over the years that anything and everything I do in public is an embarrassment to my girls.
Well, one of the first things I found upon entering Mayo that morning is that it is OK to be a cross dresser. They take each person into a small room and put female hosiery on you. When you explain that you are not into this type of thing, they try to give you some gobbledygook on how this is important for recovery and preventing blood clots. I question this and think it is possible the nurses do this just for a good laugh, but I did put them on. Then they take you into the preparation area on a cart. The room was filled with high-tech machines and many people on carts. They drug you up a little and then have different people stop by every two minutes and quiz you as to why you are there and exactly where they are supposed to operate. I considered taping a note to my head and just hoping they would let me rest and meditate prior to the operation. Everyone was very nice. Once I was taken to the operating room I assume my doctor was one of the individuals in the room. It’s hard to say because they all had masks on and I couldn’t see lips move when they talked to me. The operating room appeared to have a temperature of about 32 degrees Fahrenheit. They put a very warm blanket on me and then knocked me out.
When I woke up I was in intensive care. Gail was with me and assured me all went well. I asked her one question. I knew prior to the operation that I would have to plan my questions to be short and clear because I would phase in and out for a while. The question I asked was “snip snip”. The nurse thought I was really losing it, but Gail understood. She responded quickly telling me that they did not have to cut the nerve. This is one of the possible options if they were not able to find the problem area in my head. Apparently during the operation they not only found that problem but also a major mess to try and correct. The doctor came out in the middle of the operation to explain to Gail how severe it was and they wished they had had a camera running as this was very unusual. Well, once they had everything untangled, they stuffed my head with Teflon pads to help prevent this problem in the future. Then mixed up some plastic to fill the hole and used staple gun to seal the scalp.
So I went in on Thursday morning, and left Sunday by noon. They said I could stay another day if desired but I chose to go home. The service is great, the food is great, and the staff was great. The only serious problem that happened was when the nurse came in to remove the catheter. As it turns out she was only 21. I expressed concern as I had a daughter the same age. There is no question in my mind that she was not concerned, tossed the covers up, smiled and said take a deep breath. The first day out of Intensive Care I had to be wheeled around in a wheelchair. Of course once again, you can’t take me any place without problems. On the elevator I would call to others for help and sound pretty sad. I would tell them that my wife had then put computer chips in my head to control me. The males would laugh and the females wanted to hit me but didn’t dare since I was all bandaged up. All the staff at the hospital were great! They have a small white board in your room and they write their name on it. They know you are recovering and are lucky to remember your own name.
Once home, it took two weeks for me to start feeling a little bit normal. The brain was obviously swollen and my balance was off some. After some recovery time (six weeks), I was back to work with a slightly reduced load for the fall. I had another person take my 5 hour lab as I was not sure that I could stand that long. All my other classes where one - three hours in length and much more manageable.
During the first couple weeks at home I found I liked it very quiet, not too much motion and didn’t like to watch television. It seemed to be too much data or activity.
They said if I can go one year without the pain returning, I should be good for life. A very few number of patients have the pain return and it requires a second operation. At this point, I feel very good but have some numbness on the left side of my face. That includes the left side of my tongue and gums. It’s not totally numb, but more like you just went to the dentist. I would bite my tongue every now and then simply because it gets in the way and I don’t realize it. Not a bad taste but a little tough. Of course Gail was very happy because since the left side of my lips is numb, I need to kiss twice as long to receive the same feeling (sorry for the jokes).
I went back to the doctor after three months and then after six months. Everything appears great and I should be good to go forever. I am very pleased with the choice I made.

-----Original Message-----
From: OregonDenise [mailto:trigeminal-neuralgia-cpt3507@lists.careplace.com]
Sent: Thursday, May 31, 2007 11:55 AM
To: kmyers@umn.edu
Subject: Re: [trigeminal-neuralgia] Feeling 5 years after operation