Good article on TN associated with herniated cervical spine disc
http://www.princetonbrainandspine.com/subject.php?pn=trigeminal-neuralgia-interview
Disregard “crevice” thanks to spellcheck!
Cynicism deepens for some of us on a marathon journey of managing our lives.
This is a promo piece not worthy of posting, at least from where I see the world.
Debbie,
Sorry. I realize this article is just what I would have grasped onto when I was on my first few laps.
Good for knowing some of the language, options, etc. What comes next is a subtext that might be
labeled as scary propositions wrapped up in the fumes of a you-can-trust-me white coat. As an aside
I disclose that I have been dipping what's left of my literary brain in the absurdly arrogant musings of Ignatious J.'Reily.
wm phillips said:
Cynicism deepens for some of us on a marathon journey of managing our lives.
This is a promo piece not worthy of posting, at least from where I see the world.
Debbie,
This was my neurosurgeon that did my MVD last Nov. If you need a consult to talk about what options are out there, I’d highly recommend him. Beside’s being very knowledgeable, he’s very kind and patient. That really helped because my brain was so fogged up sometimes with the meds that it was hard for me to explain things. He was one of the few Drs that was patient with me and actually listened. His staff is also great: the other doctors and the PAs.
Dr. Tew in Cincinnati did my MVD in 2010, it did help some however, it did not fix mine totally. I am still on a lot of medication. Are there any advancements in treatments beyond MVD?
Thanks,
Donna Mills
Although this is somewhat of a promo piece for this particular doctor, it does offer a good explanation of the various procedures for the person who has just been diagnosed or for a TN patient to provide to their uneducated family and friends.
And it sequences the options in the same order that I was recommended by the doctors at Mayo Clinic when I went there this past August: first exhaust all options with meds, 2nd balloon rhizotomy (they didn't like the others very much), 3rd micro-vascular decompression, 4th gamma knife.
HOWEVER, the docs at Mayo really discouraged the surgical options until ALL pharma options had been exhausted and were VERY candid about the full range of "less than ideal" outcomes for any of the surgical options. Reading the various posts on this site confirms their advice and scares the he11 out of me - many, many people have problems with the various surgeries and it often does NOT resolve their TN pain.
I will deal with my Stupemax side effects for now and thank God that is my only problem (I'm also praying for my liver and that I can continue to keep my good insurance that allowed me to be treated at Mayo and covers all my brand name pharma!).
When I went to Mayo, my local neurologist believed that she had exhausted all the pharma options and I expected that surgery was in my immediate future. But I returned home from Mayo with a list of several additional pharma protocols. The Mayo docs coordinated immediately with my local neurologist. By the time I got home, she already had all the info from them! Am I am now (for the time being!) blessedly pain free.
Hi
i had motor cortex iimplant seven yrs ago. it did not heal my atypical tn. are you atypical or classic tn? but i started botox injections recently and it helps support the mcs and my medications. easy treatment, minor side affects.
blessings for pain free days for you.
Donna Mills said:
Dr. Tew in Cincinnati did my MVD in 2010, it did help some however, it did not fix mine totally. I am still on a lot of medication. Are there any advancements in treatments beyond MVD?
Thanks,
Donna Mills
would you be able to elaborate on what was suggested? always looking to fine tune my medication and filter out as much as i can. thanks
VAgirl said:
Although this is somewhat of a promo piece for this particular doctor, it does offer a good explanation of the various procedures for the person who has just been diagnosed or for a TN patient to provide to their uneducated family and friends.
And it sequences the options in the same order that I was recommended by the doctors at Mayo Clinic when I went there this past August: first exhaust all options with meds, 2nd balloon rhizotomy (they didn't like the others very much), 3rd micro-vascular decompression, 4th gamma knife.
HOWEVER, the docs at Mayo really discouraged the surgical options until ALL pharma options had been exhausted and were VERY candid about the full range of "less than ideal" outcomes for any of the surgical options. Reading the various posts on this site confirms their advice and scares the he11 out of me - many, many people have problems with the various surgeries and it often does NOT resolve their TN pain.
I will deal with my Stupemax side effects for now and thank God that is my only problem (I'm also praying for my liver and that I can continue to keep my good insurance that allowed me to be treated at Mayo and covers all my brand name pharma!).
When I went to Mayo, my local neurologist believed that she had exhausted all the pharma options and I expected that surgery was in my immediate future. But I returned home from Mayo with a list of several additional pharma protocols. The Mayo docs coordinated immediately with my local neurologist. By the time I got home, she already had all the info from them! Am I am now (for the time being!) blessedly pain free.
My Humble Opinion Alert.....I came to this article from the link in the email that was sent out
Perhaps my viewpoint is pessimistic after having a failed MVD, an unsuccessful PNS, many nerve blocks, and a merry-go round of anti-seizure meds, anti-depressants and opiates, but I must disagree with this surgeon's glowing representation of his own treatment success. Many of us who have dealt with this illness on a long-term basis know that the outlook is not as rosy as is represented here, and for me personally, for once I would like to have a link that I could forward to my family that explains the disease, which is done well here, but does not lead them to wonder why I haven't been cured since it appears so easy when one reads this article. I'm not meaning to sound like a grumpy-pants, I am feeling very well this morning and for that I am feeling very happy - every good moment is like a gift to me. So I am off to spend it doing something good.
Hope everyone is having a well day!
Lily
Thanks, that was very informative.
julie said:
would you be able to elaborate on what was suggested? always looking to fine tune my medication and filter out as much as i can. thanks
Hello Julie:
My present local neurologist was concerned about the ability to increase my existing meds and my ability to return to taking Tegretol or to start taking Trileptal, since I had once had what a previous neurosurgeon characterized as "leukopenia" based on ONE lab report. Fortunately, when I went to Mayo, I took my entire medical record with me.
The Mayo doctors advised that I could increase the dosages of my existing meds to higher levels with no danger. So I am now on 120 mg/day of Cymbalta (the max dose they recommend); 400 mg Topamax (room to increase); and 200 mg of Lamictal (LOTS of room to increase) and pain free. I have a supply of 25 mg tabs of Lamictal that I can take whenever I experience breakthrough pain.
Further, the Mayo docs said that with that one lab result with what they called only borderline worrisome levels indicating trending toward leukopenia, they would NOT have taken me off Tegretol (which was working beautifully for me with minimal side effects at 1200 mg/day), but would have just continued to monitor my blood levels every couple of weeks. They said the blood levels of whatever was causing concern (can't recall what it was) often fluctuate up and down for many other reasons that are not a problem.
Because of this Tegretol issue my local neurologist had been averse to trying me on Trileptal which is a newer drug and a Tegretol derivative. But it is a much "cleaner" med and has far fewer side effects than Tegretol. The Mayo docs said I should be able to take that with no problems. In short, I should be able to try either Tegretol again or Trileptal, and just be monitored.
My local doc had suggested Neurontin / Gabapentin, but I was reluctant to switch to them because of their side effects. The Mayo docs concurred that they have unpleasant side effects, but said that I should try them before resorting to surgery, since I have been lucky with such minimal side effects on other meds.
Interestingly, the Mayo docs did NOT mention Lyrica as a possibility for me. They specifically avoided that topic. When I googled about Lyrica later, I read alot of bad things about suicide problems and strokes associated with Lyrica use. Since those are two of the things that I fear most, I won't go there.
The big thing that was a surprise that I learned at Mayo that I had never heard elsewhere (and neither had my local neurologist) was to avoid caffeine, which is a CNS stimulant and works contrary to all the anti-convulsant meds. And that makes perfect sense when think about it. It has helped me at the "edge" of when the meds begin to take effect.
So has stress reduction. I think a several month period of a variety of high stress situations is what resulted in this last SLAM of TN that laid me low this past summer. Unfortunately, I expect these situations will continue for another couple of years. But I'm trying to enlist some additional help from family and friends, and trying to learn how to manage stress better.
SIDE EFFECTS I am now experiencing: (1) constantly thirsty (this has improved a bit, but is still bad); (2) lots of fatigue & low energy level; need lots of sleep; (3) impaired cognitive function and short term memory loss (these are gradually improving); (4) loss of libido (thank God my 70 year old husband is averse to Viagra!); and (5) as a result of all the previous, I am grouchy, impatient, and not very lovable except to my grandchildren.
The health insurance company is a frequent target of my frustration, but they are now back in my good graces since they have agreed to cover my brand name meds even tho generics are available (for neurological drugs treating pain, I believe brand names are more effective - for Tegretol this is well documented and I have found it to be true also for Topamax. Also, it is my belief that when you are mixing this many meds in this high of doses over such a long period of time, it may be better for your liver. Just my opinion - and I know the pharma cos don't agree with me.
VAgirl said:Although this is somewhat of a promo piece for this particular doctor, it does offer a good explanation of the various procedures for the person who has just been diagnosed or for a TN patient to provide to their uneducated family and friends.
And it sequences the options in the same order that I was recommended by the doctors at Mayo Clinic when I went there this past August: first exhaust all options with meds, 2nd balloon rhizotomy (they didn't like the others very much), 3rd micro-vascular decompression, 4th gamma knife.
HOWEVER, the docs at Mayo really discouraged the surgical options until ALL pharma options had been exhausted and were VERY candid about the full range of "less than ideal" outcomes for any of the surgical options. Reading the various posts on this site confirms their advice and scares the he11 out of me - many, many people have problems with the various surgeries and it often does NOT resolve their TN pain.
I will deal with my Stupemax side effects for now and thank God that is my only problem (I'm also praying for my liver and that I can continue to keep my good insurance that allowed me to be treated at Mayo and covers all my brand name pharma!).
When I went to Mayo, my local neurologist believed that she had exhausted all the pharma options and I expected that surgery was in my immediate future. But I returned home from Mayo with a list of several additional pharma protocols. The Mayo docs coordinated immediately with my local neurologist. By the time I got home, she already had all the info from them! Am I am now (for the time being!) blessedly pain free.
Debbie
Thank you for posting any information is helpful and yes there are so many variable in treament and outcome MVD sucess and effective depends on if you have type 1 or type 2 TN and if you have had any other less invasive but more destructive proceedures before having your MVD if you have damaged the so much from the destructive proceedures you may have caused permanant damage to the nerve that a MVD may not work. God Bless you all and I hope you all can get some relief from any procedure from this horrible pain Merry Christmas
did I miss something? I didn’t really see discussion on TN being associated with a herniated disk.
Karen
VAgirl. I have been on every med there is but believe I have not been on right combo I have type 2 TN have had MVD. I have not been to mayo but have wanted to go. Last resort. What r your thoughts. Just being managed by pain management. I’m so frustrated. Karen
1 second ago
Good point mrl, hahaha....I forgot that was something I was curious about from the beginning of this discussion earlier. We all must be on "drugs" lol. You're the only one to mention it or possibly think about it! Maybe the wrong link was posted? :)
mrl said:
did I miss something? I didn't really see discussion on TN being associated with a herniated disk.
Cheryl, thanks for letting me know I wasn’t totally going crazy… though with the meds & pain we would be forgiven!
You are very welcome mrl. No doubt about the meds and pain, I had a good laugh and I am laughing now, feels good!! That's one of the things I am learning here...sometimes we make more sense than other times, lol.
mrl said:
Cheryl, thanks for letting me know I wasn't totally going crazy... though with the meds & pain we would be forgiven!
Karen said:
Karen
VAgirl. I have been on every med there is but believe I have not been on right combo I have type 2 TN have had MVD. I have not been to mayo but have wanted to go. Last resort. What r your thoughts. Just being managed by pain management. I'm so frustrated. Karen
1 second ago
Lily has a wonderful point that stretches very deep into personal relationships with family's. for ie: My father and I have been at odds because of his insensitive attitude towards the fact that I am not only in a great deal of pain but that pain makes me ill and unable to be who I am expected to be in HIS eyes. I thought that I had explained it and gave him literature to match the severity of the illness. But he informed me one day, like I was too proud of him, "that he read an article in the doctors office the other day, and it said that everything would be ok because they can cure you with the MVD you had". He had never listen in the first place to the fact that it was educated knowledge that my MVD would make things better but not cure my pain, because I have more then TN, I have had it for 20 yrs, and its Atypical face pain also.
I feel he was miss informed by some neurosurgeons add or something that did not paint the real picture.
Keep up the research its our only cure!!!!!-Tree
Lily said:
My Humble Opinion Alert.....I came to this article from the link in the email that was sent out
Perhaps my viewpoint is pessimistic after having a failed MVD, an unsuccessful PNS, many nerve blocks, and a merry-go round of anti-seizure meds, anti-depressants and opiates, but I must disagree with this surgeon's glowing representation of his own treatment success. Many of us who have dealt with this illness on a long-term basis know that the outlook is not as rosy as is represented here, and for me personally, for once I would like to have a link that I could forward to my family that explains the disease, which is done well here, but does not lead them to wonder why I haven't been cured since it appears so easy when one reads this article. I'm not meaning to sound like a grumpy-pants, I am feeling very well this morning and for that I am feeling very happy - every good moment is like a gift to me. So I am off to spend it doing something good.
Hope everyone is having a well day!
Lily