We are patients living with Trigeminal Neuralgia, here for your support.
I Haven't Been On Living with TN much...
Hello Everybody,
It's been quite awhile since I last logged on. I was trying to avoid thinking about TN at all. Since my MVD I was pain free for 8 - 10 weeks. I am about 16 weeks post-op and I have some TN pain again. It's not bad, just achey, like a toothache, or roof of mouth ache, or a little zap to the cheek, but nothing that requires medication. It is just more of an annoyance than anything else.
I'm still so happy I did the surgery. My life has changed so much. It is hard to believe how much the pain and the medications impact your life to such a great extent. I knew I was having a very difficult time on the medications, but now that I've gotten completely off of the med's it's unbelievable. I feel alive again! It's like every day is a miracle.
My TN pain is very mild at this point and I may be experiencing pain for any number of reasons. The TN could be back; it could be phantom pain; it could be the nerve healing. I already went to the dentist to confirm nothing was wrong with my teeth and they were okay.
My TN was caused by a very large vein pressing against the trigeminal nerve. The surgeon cauterized it to make it smaller and pushed it back away from the nerve; as well as wrapped the nerve in teflon. However, MVD is not as successful with veins as it is with arteries, (I think it's called arteries). The surgeon said if my pain gets untolerable again, they will go back in and see if there is an artery back behind the nerve. They did not see one while they were in there, but sometimes it's not obvious.
I'm very happy with the results and I would do the MVD again. I have to admit I'm still a bit nervous and have some anxiety over the mild pain I have. I can't help but be afraid my face will be hit again. I don't think about it most times except for when I have the little reminder pains. This is one of the reasons I have not been on this TN website. I don't want to think about it at all!
I visited with my nurse last week over a non-related to TN problem and she reminded me that I need to be on this website anyway. She said I can offer support & hope for others as well as the same in return for me.
I'm busy with work again... full-time plus. I guess I'm trying to make up for lost time. I've taken off in the RV a few times. I went to the coast and it was wonderful to experience the wind again without pain...
Anyway, I'm here and I'm okay.... and I'm glad this website is here for everybody.
Kimberley
It's been quite awhile since I last logged on. I was trying to avoid thinking about TN at all. Since my MVD I was pain free for 8 - 10 weeks. I am about 16 weeks post-op and I have some TN pain again. It's not bad, just achey, like a toothache, or roof of mouth ache, or a little zap to the cheek, but nothing that requires medication. It is just more of an annoyance than anything else.
I'm still so happy I did the surgery. My life has changed so much. It is hard to believe how much the pain and the medications impact your life to such a great extent. I knew I was having a very difficult time on the medications, but now that I've gotten completely off of the med's it's unbelievable. I feel alive again! It's like every day is a miracle.
My TN pain is very mild at this point and I may be experiencing pain for any number of reasons. The TN could be back; it could be phantom pain; it could be the nerve healing. I already went to the dentist to confirm nothing was wrong with my teeth and they were okay.
My TN was caused by a very large vein pressing against the trigeminal nerve. The surgeon cauterized it to make it smaller and pushed it back away from the nerve; as well as wrapped the nerve in teflon. However, MVD is not as successful with veins as it is with arteries, (I think it's called arteries). The surgeon said if my pain gets untolerable again, they will go back in and see if there is an artery back behind the nerve. They did not see one while they were in there, but sometimes it's not obvious.
I'm very happy with the results and I would do the MVD again. I have to admit I'm still a bit nervous and have some anxiety over the mild pain I have. I can't help but be afraid my face will be hit again. I don't think about it most times except for when I have the little reminder pains. This is one of the reasons I have not been on this TN website. I don't want to think about it at all!
I visited with my nurse last week over a non-related to TN problem and she reminded me that I need to be on this website anyway. She said I can offer support & hope for others as well as the same in return for me.
I'm busy with work again... full-time plus. I guess I'm trying to make up for lost time. I've taken off in the RV a few times. I went to the coast and it was wonderful to experience the wind again without pain...
Anyway, I'm here and I'm okay.... and I'm glad this website is here for everybody.
Kimberley
Replies to This Discussion
-
Permalink Reply by A. Angline on -
Hi Kim,
I am glad to read that you are doing well. When I came to this site, your story, is one of those that help me solidify my decision to go forward with MVD. I certainly understand you anxieties and fears. Since my surgery, I had little flickers, flashes and sticks of pains and the thought always runs through mind... hmmmm....what if?; is it real? Thus far, based on the all positive outcome from my surgery, I am convinced that it just part of the healing process./
I think it is natural that we don't want to revisit the pain. I spoke to my surgeon about this topic. Prior to my surgery I found it difficult to find many success stories. When I asked my doctor about this subject, he replied that most people, once they are pain free, like to move away from it. I think his observation is correct. I chuckled when you said you might be trying to make up for lost time . It's my experience too! Already, there are days when I feel a little like the Looney Tunes cartoon character, 'TAZ" :)
Sometimes when I look back o the worst, I am totally flabbergasted by the insidious and pervasive impact of TN on every aspect of my life. I went back to work full-time 2 days ago. Today, I am exhausted, but it feels good. I am certain I did too much, but it felt WONDERFUL to get and do some of the things I love. It is exciting and exhilarating.
I am glad you posted, I think that absence of "regulars" on the site could be a good sign. Everything and everyone has a purpose and a season. I am smiling now thinking, that this is second time that your post arrived just at the right time for me.
I think it happens all the time. That's the joy of really living is knowing that life may not always give us what we want, but if our minds and hearts remain open, life will always give us what we need. We never know when our personal story my be the wind that propels the sail of another. Thank you for being an inspiration to me and pushing me along in my journey to end the pain.
~Stay blessed and pain free~
Peace and tenderness sent your way,
Aleshia
-
Permalink Reply by A. Angline on
-
Aleshia said:Hi Kim,
I am glad to read that you are doing well. When I came to this site, your story, is one of those that help me solidify my decision to go forward with MVD. I certainly understand you anxieties and fears. Since my surgery, I had little flickers, flashes and sticks of pains and the thought always runs through mind... hmmmm....what if?; is it real? Thus far, based on the all positive outcome from my surgery, I am convinced that it just part of the healing process/
I think it is natural that we don't want to revisit the pain. I spoke to my surgeon about this topic. Prior to my surgery I found it difficult to find many success stories. When I asked my doctor about this subject, he replied that most people, once they are pain free, like to move away from it. I think his observation is correct. I chuckled when you said you might be trying to make up for lost time . It's my experience too! Already, there are days when I feel a little like the Looney Tunes cartoon character, 'TAZ" :)
Sometimes when I look back on the worst, I am totally flabbergasted by the insidious and pervasive impact of TN on every aspect of my life. I went back to work full-time 2 days ago. Today, I am exhausted, but it feels good. I am certain I did too much, but it felt WONDERFUL to get back to doing some of the things I love. It is exciting and exhilarating.
I am glad you posted, I think that absence of "regulars" on the site could be a good sign. Everything and everyone has a purpose and a season. I am smiling now and thinking that this is second time that your post arrived just at the right time for me.
I think it happens all the time. That's the joy of really living is knowing that life may not always give us what we want, but if our minds and hearts remain open, life will always give us what we need. We never know when our personal story my be the wind that propels the sail of another. Thank you for being an inspiration to me and pushing me along in my journey to end the pain.
~Stay blessed and pain free~
Peace and tenderness sent your way,
Aleshia
Please Like Us On Facebook and Follow Ben's Friends On Tumblr and Twitter
To Support LivingwithTN.org, Click an Ad. Or Two.
Powered by Bensfriends.org
This community is part of the Ben's Friends network of patient communities. Learn more at bensfriends.org.
Patient Communities
Acute Disseminated Encephalomyelitis (ADEM)
ADHD/ADD
Adrenoleukodystrophy (ALD)
Amyloidosis
Arteriovenous Malformation (AVM)
Ataxia (International)
Ataxia (U.S.A.)
Atrial Septal Defect
Brain Aneurysms
Charcot Marie Tooth (CMT)
Chiari Malformation
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Crohn's Disease
Disabilities
Eagle Syndrome
Erythromelalgia
Fabry
Fibromyalgia
Glossopharyngeal Neuralgia(GPN)
Lupus
Multiple Myeloma
Myositis
Narcolepsy
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Synovial Sarcoma
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases
© 2012 Created by BensFriends.org
