My Mom before she died was in pain most of the time. She told me years ago she believed that the perms she was getting made her Neuralgia worse. Mine was really bad at the time so I stopped getting perms for myself. It did seem to help some. For me if I am around strong chemicals it does seem to make it worse. I am now 58 and in the past couple of years it has been worse when I do go through a neuralgia episode. Normally for me it last about 2 weeks. Thanks so much for sharing about your Mom. She is in my prayers.
Arlene
pamcliff said:
Arlene,
We have not been able to determine anything that triggered my mom's pain. Her episodes over the past few years only lasted a few weeks. But she has now been in pain since the first part of July, almost three months. She is 68 years old. I wonder if her age is contributing to the severity of her case.
Arlene said:
When I was diagnosed by the ENT Dr. so many years ago, he did tell me you will probably never meet another person with the same type I have. Well the internet was not around then. How long do you go between pain? I am usually good until I catch a cold. As soon as the cold starts going away the pain starts. But stress can also seem to activate it. How about you?+
Bill said:
To Arlene's comment about the ENT Dr...It was an ENT that diagnosed my GN several years ago.
Not all are non-believers.
I have had other docs look at me like I'm crazy. One neurologist at Duke University said I had "phantom pain". He was very rude and basically accused me of being a hypochondriac.
It's been a real struggle and god bless you folks and this forum.
We have not been able to determine anything that triggered my mom's pain. Her episodes over the past few years only lasted a few weeks. But she has now been in pain since the first part of July, almost three months. She is 68 years old. I wonder if her age is contributing to the severity of her case.
Arlene said:
When I was diagnosed by the ENT Dr. so many years ago, he did tell me you will probably never meet another person with the same type I have. Well the internet was not around then. How long do you go between pain? I am usually good until I catch a cold. As soon as the cold starts going away the pain starts. But stress can also seem to activate it. How about you?+
Bill said:
To Arlene's comment about the ENT Dr...It was an ENT that diagnosed my GN several years ago.
Not all are non-believers.
I have had other docs look at me like I'm crazy. One neurologist at Duke University said I had "phantom pain". He was very rude and basically accused me of being a hypochondriac.
It's been a real struggle and god bless you folks and this forum.
They reference TN on the site but I know they have helped folks with GN
pamcliff said:
Laura said:
Good luck to your mom and family. The MVD surgery had totally fixed my problems. Please consider that if she is a surgical candidate. They get right in there and fix exactly what is wrong...it's brain surgery though, so carries risks, but living in that hell isnt living. Also make sure you are in a place with much experience in this. I traveled to UPMC because they had such a good reputation with this surgery. Thank goodness my insurance was taken there.
Thank you so much for this information Laura. I'm already looking to find the next step for my mother if this Gamma Knife doesn't help. Her blood pressure is starting to go sky high, she's loosing too much weight and I'm afraid her body can't stand much more of this. I'll be checking to see if anyone in the Southeast performs MVD.
A friend of mine had that procedure about 6 years ago and it did not cure him. He has just had the surgery that puts the sponge between the nerve and blood vessel (don't know what it is called) and he came out of surgery pain free. That was in August and he still has had no pain. I have been trying to get someone to do something for me and of course, there's a waiting time of 3 weeks to see a neurologist, then I am sure I will have to undergo MRI and Ct and anything else they can come up with before they will refer me farther. Then it will probably be another month for that appointment. I am so frustrated.
Bless your heart, Regina. We have had the same problem with getting appointments. Also waited two days to get a return phone call from a nurse when my mom had a severe reaction to Tegretol. We just decided to take her off it ourselves, then two days later the drs office calls and says "stop taking it immediately"! Ugh!
The Gamma Knife has relieved my mother's pain a good bit, but not totally. She had gotten to the point that her voice was almost completely gone. It came back within two days after the treatment. Now she has "episodes" of the pain, instead of continual pain and it is less severe. Of course, we don't know what the long term results will be.
She began suffering with what I'm calling a "nervous breakdown" a week after the treatment. Brain scans were done about a week ago and they don't show any sign of damage from the Gamma Knife or of dementia, etc. The neurologist thinks she is just having extreme anxiety as a result of all the pain and trauma she has been through. (She has always been an anxious person.) I don't think this was caused by the Gamma Knife procedure and from what I've seen, it was very safe. It does still seem experimental for GPN treatment, so if you are a candidate for the MVD surgery. It may be your best bet, when you consider the success stories I've read here. God Bless You I hope you are pain free soon.
Regena Jones said:
A friend of mine had that procedure about 6 years ago and it did not cure him. He has just had the surgery that puts the sponge between the nerve and blood vessel (don't know what it is called) and he came out of surgery pain free. That was in August and he still has had no pain. I have been trying to get someone to do something for me and of course, there's a waiting time of 3 weeks to see a neurologist, then I am sure I will have to undergo MRI and Ct and anything else they can come up with before they will refer me farther. Then it will probably be another month for that appointment. I am so frustrated.
Thank you for your reply. I can understand someone having a nervous breakdown with GPN. My pain is not nearly as bad as it was 6 years ago just more often. If I had to live with the worst pain everytime I swallow, I would go crazy. 6 years ago my neurologist did not think I had GPN because he said it was too rare. He treated me for it anyway with meds just to see if it would go away. It did. I still think he thought it was in my head. Drs. can be so insensative sometimes. We have no alternative but to do what they say while we are suffering. I will pray for your mother. Seems prayer is all we can really count on. Thanks again.
Thanks Laura. That is what my friend had and he said he woke up from surgery pain free and is still pain free. That gives me hope if I have to go that route.
I have mentioned many times in this forum that I am a huge advocate for this surgery…I can’t say it enough. Knowing how much people with GPN suffer when there is a surgery to instantly fix it upsets me. I know some people may not be surgical candidates, but for the rest I say have the surgery NOW! don’t waste your time with meds that help a little and other treatments that don’t work. The thing with this disease that stops people from getting the surgery, in my opinion, is the way the pain will go away for long periods of time…the person is always thinking that “this time it won’t come back!” however, it always does. I got my life back instantly from surgery and just cannot recommend it enough.
Where did you have your surgery? I'm sure you've posted that before, but...
I've been terrified of the surgery. I consulted with two surgeons and got two opinions on the procedures--one recommended the decompression and the other wanted to clip the nerve. That scared me...
My friend had the surgery in Birmingham, Al. with Dr. Guthrie. Can't find his first name, but he is also an oncologist who does brain surgery for tumors.
I had the surgery at the University of Pittsburgh Medical Center…they are fantastic there. Please read about my surgery on here. They decompressed my 5th, 9th, and 10th cranial nerve and cut the nervous intermedius. I had both GPN and Geniculate neuralgia that is why they had to cut the one. This is the best treatment for this! I was scared for years and put it off…I wish I had just had it done. It was an instant fix. Pain is gone and I feel great!
Keep spreading the word Laura. I so wish the doctor's would have gone ahead and given my mother the MVD surgery, but it seems that many surgeons hold that for a final option. (I would have pushed for it, but my father is first in charge of her health care and he wanted her to go through something less invasive.) But I agree with you...if someone is physicaly able to have the surgery, then why not go ahead and do what works up front and stop the pain for good.
Laura said:
I had the surgery at the University of Pittsburgh Medical Center...they are fantastic there. Please read about my surgery on here. They decompressed my 5th, 9th, and 10th cranial nerve and cut the nervous intermedius. I had both GPN and Geniculate neuralgia that is why they had to cut the one. This is the best treatment for this! I was scared for years and put it off...I wish I had just had it done. It was an instant fix. Pain is gone and I feel great!