I'm starting this discussion for those like me that turned to this website for information. First, it appears there are surgeons who do things very differently so I'll share my experience in Coloraro. I started with tooth pain about 11-12 years ago. The attacks would last onto two weeks and a couple times a year. When nothing showed up dentally, I had a stress test to rule out heart issues ( lower jaw pain in women can be a sign of heart attacks). All of these were negative. In 2008 the pain escalated and so I had a root canal and then an MRI which didn't show the vessel compression but I was still diagnosed in 2009 with TN. The first neurologist would only agree to put me on tegretol for the rest of my life. I refused for attacks that happened 2-3 times per year. By 2012 I couldn't take it anymore - stress at work and my business travel put me over the edge so I started the Tegretal under a new neurologist. By the way, I discovered altitute aggravates this condition. We could never get the drugs to stop the symptoms and they had progressed to all three breanches of the nerve. She did another MRI using a specific protocol and that showed a loop on both sides even though symptoms on the left only. I also had typical and atypical symptoms. I saw Dr. J. Prall head of neurosurgery at Littleton and he specializes in all forms of TN treatment. I decided to have the MVD because I thought that'd give me the best chance of full relief. I had the surgery on 11/28/12 and here is what I found. No PICC line, just an IV. Very little of my hair was shaved - no more than an inch from the top of my ear to the bottom behind the ear - easy to cover. Dr Prall said he never saw a case like mine, 4 veins pressuring the nerve, 1 behind, 1 looped, 1 along the side and 1 on top. He didn't feel it was safe to use Teflon pad so he cut and cauterized all 4 veins (the most you can do). this wasn't something we had discussed before surgery but I do think it gives me the best chance of a full long term recovery. Because of how much he had to move the nerve I had a lot of nausea that I hadn't expected. It is improving in that I don't need drugs to control it anymore but I don't have much of an appetite and food is just starting to taste normal. I'm drinking real ginger to help that. Also unexpected is the amount of neck pain from the odd angle your head is held as well as the movement in the neck muscles to get in. In addition, I had air (you can call me an airhead) and blood that led to headaches all over, including the right side. I've been warned I'll have a lot of tingling and numbness on the left side (stiffness also is present) and that may last for months due to the movement of the nerve. So far no electrical shocks or TN pain. I ended up in ICU for 2 nights. Apparently as long as there's vomiting along with headaches they have to keep your blood pressure elevated to 140-160 to get enough blood flow to the brain while also keeping your head elevated to 30 dgrees - something else I wasn't aware of. I also have some numbness/tingling on both ring fingers as well as involuntary twitches which seem to be improving. I'll try to keep posting so people have a good feel of the long term success and impact of this procedure.
Thank You. I am hungry for information because I believe I am headed for surgery. There are a number of reasons why surgery seems the best for me. I was just diagnosed with TN on November 1 and that was 10 days after my first symptom. I had already been to my dentist and an endodontist and had been on 500 mg of amoxycillin for possible abscess. The second dentist would have done a root canal, but after talking it over with her and based on having had several abscesses before U declined. Two days later I had an appointment with a General Practitioner and he diagnosed based on my symptoms. So I feel very fortunate to have gotten a jump on getting to a positive result. So many have had to wait so long to find out what was really going on.
After seeing my GP, I have been on an adventure of pain and medication and limited success. I am currently on gabapentin 1200 milligrams and the pain is still intense at times. I am working on acupuncture with a specialist in pain--out of 5 treatments one seemed miraculous but the others have done nothing. So doesn't look like that is working for me. I had some spiking 10 episodes on saturday night that had me weeping and writhing from pain and frustration. None since then that severe.
I have my first appointment with a neurologist tomorrow. I have marshalled 8 pages on data about frequency, severity, length of spiking, trigger points, pain points, time of day etc. I don't expect them to be read because they are not that well organized. But I think it is important that the Dr. know I am working the problem. I am working on a better way or organizing the information. I have two different apps on my iPhone to gather date. One is just a counter and the second is a pain calendar. I haven't been able to get the pain calendar data readable on my computer. Once I master that I can do graphs to illustrate pain levels etc.
As I read the amazing stories here, I thank you all for providing insights into what is possible, what are the risks and in this case some real review of outcomes.
I have one question, did you ask you surgeon how many procedures they have done before and the success rate? If I get to surgery I would like to have this information.
The reason I am looking for surgery is maybe similar to grandmasdream story-- I want to keep my cognitive abilities and I think I am at risk if I need high level of dosage to keep the pain in check. My sister had a different but highly painful condition and she turned to narcotics and spent much of her last 5 years of life zoned out. That is not what I am looking for and that is not an acceptable life outcome for me.
In fact, if I have to accept some pain to keep my ability to think and problem solve as sharp as it currently is--that would be my choice. The dilema I currently have is this level of gabapentin has had some minor affect on my memory and at the same time the pain level is so high that I can't work as I usually do. That is a bummer of a combo.
I look forward to hearing more about your results as your recovery continues. Thank you so much for sharing your experience. It;s valuable information. Anne
artana said:
Thank You. I am hungry for information because I believe I am headed for surgery. There are a number of reasons why surgery seems the best for me. I was just diagnosed with TN on November 1 and that was 10 days after my first symptom. I had already been to my dentist and an endodontist and had been on 500 mg of amoxycillin for possible abscess. The second dentist would have done a root canal, but after talking it over with her and based on having had several abscesses before U declined. Two days later I had an appointment with a General Practitioner and he diagnosed based on my symptoms. So I feel very fortunate to have gotten a jump on getting to a positive result. So many have had to wait so long to find out what was really going on.
After seeing my GP, I have been on an adventure of pain and medication and limited success. I am currently on gabapentin 1200 milligrams and the pain is still intense at times. I am working on acupuncture with a specialist in pain--out of 5 treatments one seemed miraculous but the others have done nothing. So doesn't look like that is working for me. I had some spiking 10 episodes on saturday night that had me weeping and writhing from pain and frustration. None since then that severe.
I have my first appointment with a neurologist tomorrow. I have marshalled 8 pages on data about frequency, severity, length of spiking, trigger points, pain points, time of day etc. I don't expect them to be read because they are not that well organized. But I think it is important that the Dr. know I am working the problem. I am working on a better way or organizing the information. I have two different apps on my iPhone to gather date. One is just a counter and the second is a pain calendar. I haven't been able to get the pain calendar data readable on my computer. Once I master that I can do graphs to illustrate pain levels etc.
As I read the amazing stories here, I thank you all for providing insights into what is possible, what are the risks and in this case some real review of outcomes.
I have one question, did you ask you surgeon how many procedures they have done before and the success rate? If I get to surgery I would like to have this information.
The reason I am looking for surgery is maybe similar to grandmasdream story-- I want to keep my cognitive abilities and I think I am at risk if I need high level of dosage to keep the pain in check. My sister had a different but highly painful condition and she turned to narcotics and spent much of her last 5 years of life zoned out. That is not what I am looking for and that is not an acceptable life outcome for me.
In fact, if I have to accept some pain to keep my ability to think and problem solve as sharp as it currently is--that would be my choice. The dilema I currently have is this level of gabapentin has had some minor affect on my memory and at the same time the pain level is so high that I can't work as I usually do. That is a bummer of a combo.
I look forward to hearing more about your results as your recovery continues. Thank you so much for sharing your experience. It;s valuable information. Anne
Hi grandmasdream,
Thank you for sharing your experience . Your symptom is very much like mine- starting with toothache , went for root Canal treatment … My artery loop around my nerve. Currently I am on remission , but I continue to come to this site to gather information.
Regards and best wishes,
Seow
Artana,
I am the bread winner in our family and I found the tegretol made me seriously depressed and couldn’t bear the thought of another drug. On top of that our new CEO seemed to want to dump us expensive long-term employees (I’ve been there 29 years). I also couldn’t take watching my condition continue to destroy my family so I felt relief when surgery finally became an option. I was nervous about doing the MVD first even though the surgeon suggested the less invasive gamma knife. I do high level insurance claims so I have yet to see a rhizotomy be successful longterm and the gamma knife’s injury to the nerve seemed too close to that for me. I’m glad I did what I did because that’s the only way the involvement of 4 veins would have been discovered with the gamma knife. My advice is to research as much as you can, find good providers but ultimately do what’s right for you. Good luck and find those doctors/advocates.
If you could let me know what the numbness and tingling in your fingers had to do with it I would appreciate it. I have both numbness and pain in my hands since the surgery 6 weeks ago. I was also in ICU for about 24 hours, I vomited off and on for 18 hours, due to my allergy to general anesthesia.
I have minimal TN pain anymore, just a more of an annoyance here and there, but I have an appointment with a neurologist coming up due to the pain and numbness in my hands...its incredibly hard just to type this and takes forever. I am curious as to what you were told.
I had my surgery in October and I will say, it was at about 5 weeks post op that I began to feel really good, then this issue started with my hands, but I dont regret surgery one bit.
I am glad that this is working for you and you are feeling better, I also think its great that you want to keep everyone up to date, this group needs more sucess stories on here!
Wendy
I took an entire binder of all my records, doctors visits and drugs with me to every appointment and consult I had. I think its a great idea what you are doing, I do think we are taken more seriously when we show that we are informed. On the flip side, if a doctor didnt care at all about my file, I knew he or she wasnt taking me seriously.
I understand you not wanting to continue a life with the meds, thats why I had the MVD as well. I could not function or perform my job
Wendy
artana said:
Thank You. I am hungry for information because I believe I am headed for surgery. There are a number of reasons why surgery seems the best for me. I was just diagnosed with TN on November 1 and that was 10 days after my first symptom. I had already been to my dentist and an endodontist and had been on 500 mg of amoxycillin for possible abscess. The second dentist would have done a root canal, but after talking it over with her and based on having had several abscesses before U declined. Two days later I had an appointment with a General Practitioner and he diagnosed based on my symptoms. So I feel very fortunate to have gotten a jump on getting to a positive result. So many have had to wait so long to find out what was really going on.
After seeing my GP, I have been on an adventure of pain and medication and limited success. I am currently on gabapentin 1200 milligrams and the pain is still intense at times. I am working on acupuncture with a specialist in pain--out of 5 treatments one seemed miraculous but the others have done nothing. So doesn't look like that is working for me. I had some spiking 10 episodes on saturday night that had me weeping and writhing from pain and frustration. None since then that severe.
I have my first appointment with a neurologist tomorrow. I have marshalled 8 pages on data about frequency, severity, length of spiking, trigger points, pain points, time of day etc. I don't expect them to be read because they are not that well organized. But I think it is important that the Dr. know I am working the problem. I am working on a better way or organizing the information. I have two different apps on my iPhone to gather date. One is just a counter and the second is a pain calendar. I haven't been able to get the pain calendar data readable on my computer. Once I master that I can do graphs to illustrate pain levels etc.
As I read the amazing stories here, I thank you all for providing insights into what is possible, what are the risks and in this case some real review of outcomes.
I have one question, did you ask you surgeon how many procedures they have done before and the success rate? If I get to surgery I would like to have this information.
The reason I am looking for surgery is maybe similar to grandmasdream story-- I want to keep my cognitive abilities and I think I am at risk if I need high level of dosage to keep the pain in check. My sister had a different but highly painful condition and she turned to narcotics and spent much of her last 5 years of life zoned out. That is not what I am looking for and that is not an acceptable life outcome for me.
In fact, if I have to accept some pain to keep my ability to think and problem solve as sharp as it currently is--that would be my choice. The dilema I currently have is this level of gabapentin has had some minor affect on my memory and at the same time the pain level is so high that I can't work as I usually do. That is a bummer of a combo.
I look forward to hearing more about your results as your recovery continues. Thank you so much for sharing your experience. It;s valuable information. Anne
Hi Wendy,
I haven't had a chance to discuss this with the surgeon yet because I don't have a follow up until next week. It almost always happens at night while I'm sleeping on my back so it's not nearly as severe as what you're going through and my heart goes out to you. I would double check with your doctor to make sure you're cervical (neck) isn't still causing problems. Since I do insurance claims many times these symptoms can come from an aggravation between c6-c7. Since they keep our neck in such an awkward position a specialist may be able to determine if that is impacting you long term.
Let me know whatyou find out.
crashgirl said:
If you could let me know what the numbness and tingling in your fingers had to do with it I would appreciate it. I have both numbness and pain in my hands since the surgery 6 weeks ago. I was also in ICU for about 24 hours, I vomited off and on for 18 hours, due to my allergy to general anesthesia.
I have minimal TN pain anymore, just a more of an annoyance here and there, but I have an appointment with a neurologist coming up due to the pain and numbness in my hands...its incredibly hard just to type this and takes forever. I am curious as to what you were told.
I had my surgery in October and I will say, it was at about 5 weeks post op that I began to feel really good, then this issue started with my hands, but I dont regret surgery one bit.
I am glad that this is working for you and you are feeling better, I also think its great that you want to keep everyone up to date, this group needs more sucess stories on here!
Wendy
OK, it's just over a week so I thought I'd add an update. The headaches in the forehead area are getting much better. The incision is really beginning to bother me - most times it just itches which I know means it's healing, but yesterday it really started to burn. My husband keeps checking it and no oozing, redness or other signs of infection. I had a stressful conversation about my job with my brother yesterday - have decided I still need lots of time to accept the unfairness of it all and need to keep that topic off limits! I had to lay down because the conversation made my head pound and later that day my left ear started to burn similar to the atypical symptoms I had in my face. I avoid bending down as that pressure seems to bother me. I was given very little restrictions when I left the hospital and I also find that frustrating - it seems to be trial and error. If it hurts don't do it, if it doesn't ok. Only thing is no driving on narcotics. While no vomiting, the nausea has just started to subside, you would have thought I could have lost more than the 5 pounds I did with the difficulty I have had eating. I'll update after my two week follow up and best to all of you.
Here is hoping for a good update. I am so amazed by courageousness of you and others who have had to go through so much. Anne
I do insurance claims too!! I am automotive though..an appraiser out on the road, so you can understand why I went with the surgery. I do have an appointment on January 8th with a Neurosurgeon for head and neck at Hopkins to discuss the MRI i will be getting next week. I think something slipped too, I can feel a pinch under my shoulder blade and I think all I really need is a good chriopractic adjustment and I will be good, I just dont want to go to a chiro until I talk to this neurosurgeon.
Keep your chin up , I didnt get many instructions either for home care, but I did start to feel human again after a month, and was feeling great until my arms started this crap. You will be jumping around for joy before you know it
Wendy
Grandmasdream said:
Hi Wendy,
I haven't had a chance to discuss this with the surgeon yet because I don't have a follow up until next week. It almost always happens at night while I'm sleeping on my back so it's not nearly as severe as what you're going through and my heart goes out to you. I would double check with your doctor to make sure you're cervical (neck) isn't still causing problems. Since I do insurance claims many times these symptoms can come from an aggravation between c6-c7. Since they keep our neck in such an awkward position a specialist may be able to determine if that is impacting you long term.
Let me know whatyou find out.
crashgirl said:If you could let me know what the numbness and tingling in your fingers had to do with it I would appreciate it. I have both numbness and pain in my hands since the surgery 6 weeks ago. I was also in ICU for about 24 hours, I vomited off and on for 18 hours, due to my allergy to general anesthesia.
I have minimal TN pain anymore, just a more of an annoyance here and there, but I have an appointment with a neurologist coming up due to the pain and numbness in my hands...its incredibly hard just to type this and takes forever. I am curious as to what you were told.
I had my surgery in October and I will say, it was at about 5 weeks post op that I began to feel really good, then this issue started with my hands, but I dont regret surgery one bit.
I am glad that this is working for you and you are feeling better, I also think its great that you want to keep everyone up to date, this group needs more sucess stories on here!
Wendy
What a small world to both be in insurance. Thank goodness neither of us do property claims inspections - couldn’t imagine getting up on a roof with either the condition or the drugs.
I’m having some runny eyes today, my hubby thinks I over did it yesterday. I wouldn’t be surprised if a chiro adjustment would help but it is very smart to check with the neurosurgeon first.
crashgirl said:
I do insurance claims too!! I am automotive though…an appraiser out on the road, so you can understand why I went with the surgery. I do have an appointment on January 8th with a Neurosurgeon for head and neck at Hopkins to discuss the MRI i will be getting next week. I think something slipped too, I can feel a pinch under my shoulder blade and I think all I really need is a good chriopractic adjustment and I will be good, I just dont want to go to a chiro until I talk to this neurosurgeon.
Keep your chin up , I didnt get many instructions either for home care, but I did start to feel human again after a month, and was feeling great until my arms started this crap. You will be jumping around for joy before you know it
Wendy
Grandmasdream said:Hi Wendy,
I haven’t had a chance to discuss this with the surgeon yet because I don’t have a follow up until next week. It almost always happens at night while I’m sleeping on my back so it’s not nearly as severe as what you’re going through and my heart goes out to you. I would double check with your doctor to make sure you’re cervical (neck) isn’t still causing problems. Since I do insurance claims many times these symptoms can come from an aggravation between c6-c7. Since they keep our neck in such an awkward position a specialist may be able to determine if that is impacting you long term.
Let me know whatyou find out.
crashgirl said:If you could let me know what the numbness and tingling in your fingers had to do with it I would appreciate it. I have both numbness and pain in my hands since the surgery 6 weeks ago. I was also in ICU for about 24 hours, I vomited off and on for 18 hours, due to my allergy to general anesthesia.
I have minimal TN pain anymore, just a more of an annoyance here and there, but I have an appointment with a neurologist coming up due to the pain and numbness in my hands…its incredibly hard just to type this and takes forever. I am curious as to what you were told.
I had my surgery in October and I will say, it was at about 5 weeks post op that I began to feel really good, then this issue started with my hands, but I dont regret surgery one bit.
I am glad that this is working for you and you are feeling better, I also think its great that you want to keep everyone up to date, this group needs more sucess stories on here!
Wendy
Death before property claims is my motto...I am afraid of heights, so no way I am getting on a roof. I have done a few claims for trees and bushes that cars have hit, but thats it!!.
I havent gone back to work yet, but I am scared that if one person cries over a scrape in their bumper I may have a meltdown, lol... I no longer have tolerance for idiots.
Although I did have a guy sob over his Ferrari once, so that was worth the price of admission
Wendy
Grandmasdream said:
What a small world to both be in insurance. Thank goodness neither of us do property claims inspections - couldn't imagine getting up on a roof with either the condition or the drugs.
I'm having some runny eyes today, my hubby thinks I over did it yesterday. I wouldn't be surprised if a chiro adjustment would help but it is very smart to check with the neurosurgeon first.
crashgirl said:I do insurance claims too!! I am automotive though..an appraiser out on the road, so you can understand why I went with the surgery. I do have an appointment on January 8th with a Neurosurgeon for head and neck at Hopkins to discuss the MRI i will be getting next week. I think something slipped too, I can feel a pinch under my shoulder blade and I think all I really need is a good chriopractic adjustment and I will be good, I just dont want to go to a chiro until I talk to this neurosurgeon.
Keep your chin up , I didnt get many instructions either for home care, but I did start to feel human again after a month, and was feeling great until my arms started this crap. You will be jumping around for joy before you know it
Wendy
Grandmasdream said:Hi Wendy,
I haven't had a chance to discuss this with the surgeon yet because I don't have a follow up until next week. It almost always happens at night while I'm sleeping on my back so it's not nearly as severe as what you're going through and my heart goes out to you. I would double check with your doctor to make sure you're cervical (neck) isn't still causing problems. Since I do insurance claims many times these symptoms can come from an aggravation between c6-c7. Since they keep our neck in such an awkward position a specialist may be able to determine if that is impacting you long term.
Let me know whatyou find out.
crashgirl said:If you could let me know what the numbness and tingling in your fingers had to do with it I would appreciate it. I have both numbness and pain in my hands since the surgery 6 weeks ago. I was also in ICU for about 24 hours, I vomited off and on for 18 hours, due to my allergy to general anesthesia.
I have minimal TN pain anymore, just a more of an annoyance here and there, but I have an appointment with a neurologist coming up due to the pain and numbness in my hands...its incredibly hard just to type this and takes forever. I am curious as to what you were told.
I had my surgery in October and I will say, it was at about 5 weeks post op that I began to feel really good, then this issue started with my hands, but I dont regret surgery one bit.
I am glad that this is working for you and you are feeling better, I also think its great that you want to keep everyone up to date, this group needs more sucess stories on here!
Wendy