@susanlurding
I’m sorry to hear about your suffering.
I have had some trigeminal nerve pain and post herpetic pain (affects my scalp, eye, lips, chin, etc.).
I’m not sure what tests/treatments you have already had or medications you are taking. I read through the links below and they provide a good overview of options. It is mentioned there is no cure for it but treatments to help relieve symptoms.
I pray that you are able to get options to help relieve some of your suffering.
Very odd. I'd written up a fairly long post on one treatment that worked for me. But it seems there is no way to find it, or retrieve it. Does anyone think it just got deleted since someone didn't agree with it??
I wanted to update it, since I found an effective treatment with no medication that I could write up. But, I wanted to UPDATE what I already wrote. OTOH, if content just gets obliterated, I'm not going to waste my time. Is there some system to retrieve what I wrote and posted about TM??
I have had severTN for3 years.It was from shingles. it affects the entire left side of my head and face, even into my mouth and nose. I have tried everything I have heard of or told about by near pain management doctors, but nothing has worked. Does anyone know anything about the surgery that Mayo info talks about. The surgery that goes thru small hole in skull and put buffers between the trigeminal nerve and the others on top of it. This info said that was the only cure. I am praying for death I am in such pain. Only the thought of my dog being alone keeps me alive. If you know anything that has helped ANYoNE with this ,please let me know
I have had severTN for3 years.It was from shingles. it affects the entire left side of my head and face, even into my mouth and nose. I have tried everything I have heard of or told about by near pain management doctors, but nothing has worked. Does anyone know anything about the surgery that Mayo info talks about. The surgery that goes thru small hole in skull and put buffers between the trigeminal nerve and the others on top of it. This info said that was the only cure. I am praying for death I am in such pain. Only the thought of my dog being alone keeps me alive. If you know anything that has helped ANYoNE with this ,please let me know
Very odd. I'd written up a fairly long post on one treatment that worked for me. But it seems there is no way to find it, or retrieve it. Does anyone think it just got deleted since someone didn't agree with it??
I wanted to update it, since I found an effective treatment with no medication that I could write up. But, I wanted to UPDATE what I already wrote. OTOH, if content just gets obliterated, I'm not going to waste my time. Is there some system to retrieve what I wrote and posted about TM??
How disheartening for you, daaboss😳! I totally empathize and commiserate.
I can only share what I've learned over the past year when aiming to post on this site:
Generally, my posts get "loaded" rather quickly and fully. However, from time to time, if I have a medium to lengthy post, the little "wheel" (what shows on my computer, anyway; not saying that it shows on everyone's screen) just spins and spins and spins...and all too often does NOT stop even after leaving it alone for several minutes, so I've had to get out of the site altogether. THAT results in wiping out what has taken my time, energy, and effort from showing up on this site! YES, devastatingly upsetting! GONE!
🖥. So this is what I learned to do:
As I type up my comments, developing responses to members, I COPY AND PASTE onto a word document page opened on my extra screen to my right. As a writer, I could not live without that extra monitor since I use it for many purposes. So having cut/pasted what I'm attempting to post to this site, I complete my comments and press REPLY. If things go right, it will successfully upload and post😁! If not, I have not lost what was composed since I have followed the aforementioned process.
WHAT NEXT? This is what I then do:
I'll go through what I saved and fine tune it without eliminating what I perceive is important/necessary. SAVE that, COPY/PASTE onto the mayo connect screen (in the section that it's meant to appear), then again press REPLY. Generally, I have success😁!
🤔BUT WHAT IF STILL NOT LOADING?
Then I've (on at least 2 occasions) DIVIDED THE POST and labeled Part A, upload that, and then Part B, and uploaded also by pressing REPLY each time. EACH part has a notation at the very start, informing the person to whom I'm replying, or even just a "general post" that I've divided the response into labeled Parts A and B. Why do this? Because then my lengthy post gets uploaded and "transported through" with BOTH SECTIONS successfully uploaded👍🏼😊.
I've on rare occasion run into what has happened to you: A brief to medium post which (on my screen) shows that it has been uploaded HAS NOT! So my time, effort, etc was a waste, making me feel not only frustrated, but also augmenting the negative thoughts that I have toward the inescapable technology eccentricities🤨. If I'm undergoing an especially difficult pain episode (due to a plethora of medical issues) then I just GIVE UP because the stress of the situations inflict the intensity of my pain. NOT worth it, so I chuck it out of my mind altogether. YES, there appears to be "something" that can happen between my pressing REPLY and whatever gremlins may interfere with successful transmission🤣. I'm not a tech enamored person, just respect what I've learned to do and how helpful those offerings are to my interests in writing, research, etc., and the ability to participate in the only 2 media applications that I've chosen: this site, and Next Door. I do not use any other, not FB or Twitter, or any other. NO participation in any of those.
I've applied to this posting, the steps described above of having copied/pasted onto word document blank page on right-hand screen( do have a very long computer table). WORTHWHILE for me. You can perhaps try it out with what you offer to the site. I agree with you that it can be confusing trying to navigate this site. ONLY RARELY has the "Edit" mode been offered and I have edited when possible. Don't understand why it's so randomly and inconsistently offered...
I hope you have better luck with future postings. You certainly have my support and understanding with what you experience. 👍🏼💻🖥
I have had severTN for3 years.It was from shingles. it affects the entire left side of my head and face, even into my mouth and nose. I have tried everything I have heard of or told about by near pain management doctors, but nothing has worked. Does anyone know anything about the surgery that Mayo info talks about. The surgery that goes thru small hole in skull and put buffers between the trigeminal nerve and the others on top of it. This info said that was the only cure. I am praying for death I am in such pain. Only the thought of my dog being alone keeps me alive. If you know anything that has helped ANYoNE with this ,please let me know
Yes if I write a really long post I will even copy it and email to myself, or sometimes put it in a Google doc. The non stop spinning wheel has only happened maybe three times in two years and each time it was for a long post, but that may be coincidence. I don't blame the site. The Internet can be capricious.
Hey, thanks so much?
However, I can't find a method of finding these. How did you do it? Just searching for @daaboss?? I could also see how you might do that with an external search engine, combining Mayo with my ID.
Now --- I think I may have discovered something that might be effective for a lot of folks. It is easy cheap, fast, and 100% safe. So, I REALLY think this should be prominently posted. In fact, I'd suggest a special post like this for each condition: "FAQ -- Acceptable User's Answers". "While not definitive, many of these are anecdotal, and so you should not rely on any of these answers." Here's my short version:
TM solution:
Apply enough heat to the area, with a handheld showerhead running slow, but fairly hot water up into the ear area. My last bout seemed to have responded better by concentrating on my jaw bone itself, near the ear. Don't burn yourself though -- If you can't leave the water running on your arm for 5 minutes, then it is too hot. I got relief that was 100%, pain free in 20 minutes, and it did not reoccur. As mentioned elsewhere, for me at least, the only other effective treatment was about 12 mg of hydrocodone. Hot water is cheaper, easier, safer, and faster. Before I got it so I think I can reliably work 100% of the time, it took me 4-5 different instances. At first years ago, I had tried a low fan setting hair dryer. That just didn't work--at all. It is impossible to get enough heat transferred to where it was effective, using a hair dryer. Water is safer and much more effective.
I have had severTN for3 years.It was from shingles. it affects the entire left side of my head and face, even into my mouth and nose. I have tried everything I have heard of or told about by near pain management doctors, but nothing has worked. Does anyone know anything about the surgery that Mayo info talks about. The surgery that goes thru small hole in skull and put buffers between the trigeminal nerve and the others on top of it. This info said that was the only cure. I am praying for death I am in such pain. Only the thought of my dog being alone keeps me alive. If you know anything that has helped ANYoNE with this ,please let me know
I have had the Laproscopic Micro Vascular Decompression you are probably referring to. I had it done 7 years ago. I had a very speedy recovery and after 10 days they said I could even drive within a 5 mile radius. I had virtually no pain and only needed a half does of morphine the first two days in the hospital. ICU 1st night then regular room the 2nd night before going home. The doctor used bone putty, no metal plate needed as the opening ing was very small. My husband was working but his two sisters and my best friend came to hang with me the first 10 days because there is a risk of stroke so they wanted to make sure I wasn't alone. I did have fatigue for a ot a month but nothing debilitating. I had this done by a Dr Johm YK Lee at Penn Medicine in Philadelphia. He placed a teflon pad between the nerve and an artery and also the nerve in a different spot rubbing on a vein. Unfortunately my TN is back after I severely broke a tooth and it was pulled. The pain is now where you describe and Dr Lee is suggesting Gamma Knife procedure. I'm not sure if I will do this. I am 70 now and am having trouble with oxcarbazapine side affects sso I'm kind of between a rock and a hard place. Hope this helps.
Very odd. I'd written up a fairly long post on one treatment that worked for me. But it seems there is no way to find it, or retrieve it. Does anyone think it just got deleted since someone didn't agree with it??
I wanted to update it, since I found an effective treatment with no medication that I could write up. But, I wanted to UPDATE what I already wrote. OTOH, if content just gets obliterated, I'm not going to waste my time. Is there some system to retrieve what I wrote and posted about TM??
Please rewrite your info about your treatment. I am new to this forum so I do not know what happened to your post. however, I beg you to write it again. This is selfish for me to ask you to rewrite, butI have tried so many treatments that haven't worked, I will try anything to stop this pain I have had now for 3years. Thank you so very much, and I am glad hear you are better. Susan Lurding
I was hoping that you were better, but sounds like you will have to move. Have you tried earplugs? This disease not only causes us excruciating pain, but costs every dollar we have get rid. of it. I just sent you a Good Thought, hope it works. Susan Lurding
I have had the Laproscopic Micro Vascular Decompression you are probably referring to. I had it done 7 years ago. I had a very speedy recovery and after 10 days they said I could even drive within a 5 mile radius. I had virtually no pain and only needed a half does of morphine the first two days in the hospital. ICU 1st night then regular room the 2nd night before going home. The doctor used bone putty, no metal plate needed as the opening ing was very small. My husband was working but his two sisters and my best friend came to hang with me the first 10 days because there is a risk of stroke so they wanted to make sure I wasn't alone. I did have fatigue for a ot a month but nothing debilitating. I had this done by a Dr Johm YK Lee at Penn Medicine in Philadelphia. He placed a teflon pad between the nerve and an artery and also the nerve in a different spot rubbing on a vein. Unfortunately my TN is back after I severely broke a tooth and it was pulled. The pain is now where you describe and Dr Lee is suggesting Gamma Knife procedure. I'm not sure if I will do this. I am 70 now and am having trouble with oxcarbazapine side affects sso I'm kind of between a rock and a hard place. Hope this helps.
thank you smooch. this info was exactly what I was looking for. Did you find out about this procedure from Mayo or from the doctor in Philly? I liven Louisville KY and go to UofLouisville pain management. I am scheduled for a pain stimulator implanted in my spine, but I had the trial of this and did not get much relief. However, it is my last hope. I've had nerve blocks, and seems like a hundred other treatments and take Lyrica and Cymbalta, along with Hudrocodone10. My daughters and I keep investigating all things we hear of. My daughter talked to a nurse about the gamma knife. The nurse said her father had this and it did not work for him, so I haven't planned it. It also has a short time of relief...I think it is 2 years. I am78 years old and hurt so bad I don't care whether I make it to 79. thank you so much for this info. I am calling my doctor on Monday to see if I can get this here in Louisville. thanks again for taking your time to do this. Susan Lurding. ps: did your insurance payoff this?
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Very odd. I'd written up a fairly long post on one treatment that worked for me. But it seems there is no way to find it, or retrieve it. Does anyone think it just got deleted since someone didn't agree with it??
I wanted to update it, since I found an effective treatment with no medication that I could write up. But, I wanted to UPDATE what I already wrote. OTOH, if content just gets obliterated, I'm not going to waste my time. Is there some system to retrieve what I wrote and posted about TM??
@daaboss
Here is a link to your comment in May. You find it under your account (you’ll find your discussions, comments, etc.).
https://connect.mayoclinic.org/comment/1064404/
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1 Reaction@daaboss
Here is another link later in May.
https://connect.mayoclinic.org/comment/1075784/
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1 ReactionHow disheartening for you, daaboss😳! I totally empathize and commiserate.
I can only share what I've learned over the past year when aiming to post on this site:
Generally, my posts get "loaded" rather quickly and fully. However, from time to time, if I have a medium to lengthy post, the little "wheel" (what shows on my computer, anyway; not saying that it shows on everyone's screen) just spins and spins and spins...and all too often does NOT stop even after leaving it alone for several minutes, so I've had to get out of the site altogether. THAT results in wiping out what has taken my time, energy, and effort from showing up on this site! YES, devastatingly upsetting! GONE!
🖥. So this is what I learned to do:
As I type up my comments, developing responses to members, I COPY AND PASTE onto a word document page opened on my extra screen to my right. As a writer, I could not live without that extra monitor since I use it for many purposes. So having cut/pasted what I'm attempting to post to this site, I complete my comments and press REPLY. If things go right, it will successfully upload and post😁! If not, I have not lost what was composed since I have followed the aforementioned process.
WHAT NEXT? This is what I then do:
I'll go through what I saved and fine tune it without eliminating what I perceive is important/necessary. SAVE that, COPY/PASTE onto the mayo connect screen (in the section that it's meant to appear), then again press REPLY. Generally, I have success😁!
🤔BUT WHAT IF STILL NOT LOADING?
Then I've (on at least 2 occasions) DIVIDED THE POST and labeled Part A, upload that, and then Part B, and uploaded also by pressing REPLY each time. EACH part has a notation at the very start, informing the person to whom I'm replying, or even just a "general post" that I've divided the response into labeled Parts A and B. Why do this? Because then my lengthy post gets uploaded and "transported through" with BOTH SECTIONS successfully uploaded👍🏼😊.
I've on rare occasion run into what has happened to you: A brief to medium post which (on my screen) shows that it has been uploaded HAS NOT! So my time, effort, etc was a waste, making me feel not only frustrated, but also augmenting the negative thoughts that I have toward the inescapable technology eccentricities🤨. If I'm undergoing an especially difficult pain episode (due to a plethora of medical issues) then I just GIVE UP because the stress of the situations inflict the intensity of my pain. NOT worth it, so I chuck it out of my mind altogether. YES, there appears to be "something" that can happen between my pressing REPLY and whatever gremlins may interfere with successful transmission🤣. I'm not a tech enamored person, just respect what I've learned to do and how helpful those offerings are to my interests in writing, research, etc., and the ability to participate in the only 2 media applications that I've chosen: this site, and Next Door. I do not use any other, not FB or Twitter, or any other. NO participation in any of those.
I've applied to this posting, the steps described above of having copied/pasted onto word document blank page on right-hand screen( do have a very long computer table). WORTHWHILE for me. You can perhaps try it out with what you offer to the site. I agree with you that it can be confusing trying to navigate this site. ONLY RARELY has the "Edit" mode been offered and I have edited when possible. Don't understand why it's so randomly and inconsistently offered...
I hope you have better luck with future postings. You certainly have my support and understanding with what you experience. 👍🏼💻🖥
-
Like -
Helpful -
Hug
1 ReactionYes if I write a really long post I will even copy it and email to myself, or sometimes put it in a Google doc. The non stop spinning wheel has only happened maybe three times in two years and each time it was for a long post, but that may be coincidence. I don't blame the site. The Internet can be capricious.
Hey, thanks so much?
However, I can't find a method of finding these. How did you do it? Just searching for @daaboss?? I could also see how you might do that with an external search engine, combining Mayo with my ID.
Now --- I think I may have discovered something that might be effective for a lot of folks. It is easy cheap, fast, and 100% safe. So, I REALLY think this should be prominently posted. In fact, I'd suggest a special post like this for each condition: "FAQ -- Acceptable User's Answers". "While not definitive, many of these are anecdotal, and so you should not rely on any of these answers." Here's my short version:
TM solution:
Apply enough heat to the area, with a handheld showerhead running slow, but fairly hot water up into the ear area. My last bout seemed to have responded better by concentrating on my jaw bone itself, near the ear. Don't burn yourself though -- If you can't leave the water running on your arm for 5 minutes, then it is too hot. I got relief that was 100%, pain free in 20 minutes, and it did not reoccur. As mentioned elsewhere, for me at least, the only other effective treatment was about 12 mg of hydrocodone. Hot water is cheaper, easier, safer, and faster. Before I got it so I think I can reliably work 100% of the time, it took me 4-5 different instances. At first years ago, I had tried a low fan setting hair dryer. That just didn't work--at all. It is impossible to get enough heat transferred to where it was effective, using a hair dryer. Water is safer and much more effective.
I have had the Laproscopic Micro Vascular Decompression you are probably referring to. I had it done 7 years ago. I had a very speedy recovery and after 10 days they said I could even drive within a 5 mile radius. I had virtually no pain and only needed a half does of morphine the first two days in the hospital. ICU 1st night then regular room the 2nd night before going home. The doctor used bone putty, no metal plate needed as the opening ing was very small. My husband was working but his two sisters and my best friend came to hang with me the first 10 days because there is a risk of stroke so they wanted to make sure I wasn't alone. I did have fatigue for a ot a month but nothing debilitating. I had this done by a Dr Johm YK Lee at Penn Medicine in Philadelphia. He placed a teflon pad between the nerve and an artery and also the nerve in a different spot rubbing on a vein. Unfortunately my TN is back after I severely broke a tooth and it was pulled. The pain is now where you describe and Dr Lee is suggesting Gamma Knife procedure. I'm not sure if I will do this. I am 70 now and am having trouble with oxcarbazapine side affects sso I'm kind of between a rock and a hard place. Hope this helps.
Please rewrite your info about your treatment. I am new to this forum so I do not know what happened to your post. however, I beg you to write it again. This is selfish for me to ask you to rewrite, butI have tried so many treatments that haven't worked, I will try anything to stop this pain I have had now for 3years. Thank you so very much, and I am glad hear you are better. Susan Lurding
I was hoping that you were better, but sounds like you will have to move. Have you tried earplugs? This disease not only causes us excruciating pain, but costs every dollar we have get rid. of it. I just sent you a Good Thought, hope it works. Susan Lurding
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Helpful -
Hug
1 Reactionthank you smooch. this info was exactly what I was looking for. Did you find out about this procedure from Mayo or from the doctor in Philly? I liven Louisville KY and go to UofLouisville pain management. I am scheduled for a pain stimulator implanted in my spine, but I had the trial of this and did not get much relief. However, it is my last hope. I've had nerve blocks, and seems like a hundred other treatments and take Lyrica and Cymbalta, along with Hudrocodone10. My daughters and I keep investigating all things we hear of. My daughter talked to a nurse about the gamma knife. The nurse said her father had this and it did not work for him, so I haven't planned it. It also has a short time of relief...I think it is 2 years. I am78 years old and hurt so bad I don't care whether I make it to 79. thank you so much for this info. I am calling my doctor on Monday to see if I can get this here in Louisville. thanks again for taking your time to do this. Susan Lurding. ps: did your insurance payoff this?
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1 Reaction