Hello all. I am researching the surgical option after dealing with my GPN since 2007. It was not correctly diagnosed until 2011. Since then I have been on pretty much the whole run of drugs - Gabapentin, Neurontin, Amytriptyline and all have similar effect. They work a bit at first, perhaps, and then don't seem to affect either the frequency, duration or severity of the pain. My symptoms have been returning roughly every year and lasting longer each time - 7 months in 2014 & 2-1/2 months so far this year. I am a university lecturer and the amount of drowsiness and "mental fuzz" from the pharmacological treatments is simply unworkable for the small amount of relief provided. I have taught myself how to "absorb" the pain so I can work but I really don't want to keep doing that. It is at the point where I can no longer make it through a complete class lecture and Q&A session.
I have been working through the ENT clinic at Vanderbilt which serves as the gateway to the Neurosurgeons in cases like mine. My intent is to push for a consultation with a surgeon on my next visit in May and that leads to my question in this post:
There are many surgeons within reasonable driving distance (6-8 hours) from our home who note MVD for Trigeminal Neuralgia in their specialties but none who list GPN. Can anyone shed any light on whether this is a good indicator for GPN or not?
In my experience the pain will get to a point where talking is out of the question at times (or so it was for me) as the sore throat was a precursor to an attack. I was on Tegretol and Amytriptyline, and the effect of the Tegretol alone meant I could not work - 1200mgs (4x300mg) a day meant I was largely incapacitated, unable to drive and very unsteady on my feet.
I was accepted as a sickness beneficiary in my country (New Zealand) which barely paid the rent, but at least I couldn't feel any more pain. I couldn't feel anything. My condition went misdiagnosed for 5 years and like most people here, I became a plaything for ENT Staff until I had Neuro consult and he nailed it right away.
A Micro-vascular Decompression for GNP was scheduled and it did the trick. That was 10 years ago now, and I am so grateful to the Surgeon and staff for the relief it brought (so grateful in fact, I worked along side him in Theatre 6 years later as Assistant to the Anesthesiologist on many similar cases).
Be aware GNP is very rare. The ratio of Trigeminal cases to Glossopharyngeal is 1:100 meaning that for every 100 Trigeminal cases presented, only one GNP on average, will be seen. So many Neuros have never seen one, let alone have the confidence to list it as a specialty.
There is also a Glossopharyngeal Neuralgia support group on Facebook, with about 250 members. That might be a place to post for leads. It's a membership only group, so my application there is "pending".
Thank you for sharing your experiences. Our friend from New Zealand is right: you are unlikely to find any specialist who will list GPN as their area of specialisation, precisely because there just aren’t too many of ‘us’ around.
I was diagnosed with GPN some years ago. In my case, to been coming and going and the period between attacks has progressively shortened (from 2 years to under 18 months). The dosage of Tegretol has increased progressively with each attack (from October 2014 to February 2015 I was on 2,400mg per day I.e. 800 mg three times a day).
Luckily the symptoms have retreated significantly and I’ve reduced dosage to 200mg per day. I was recommended for MVD and would have gone with the Neurosurgeon I’m currently seeing. We however agreed that since the symptoms have retreated, it makes no sense to proceed with the surgery since there would be no way of telling whether or not the surgery has been successful.
However, the surgeon informed me that MVD works for TN patients and for GPN. I expect the symptoms are likely to return sometime this year. At that time I will go for the MVD…
Good luck wth yours when you decide to go for one.
If you are looking for a surgeon who is experienced with MVD for GPN, than you could do worse than to contact members of the US TN Association's Medical Advisory Board. Many of them are neurosurgeons with extensive contacts among the community which treats facial neuralgia issues of all types. The current listing with contact data is here: http://fpa-support.org/about-tna/tnas-medical-advisory-board/
I read your comments with interest and noticed you said the pain attacks had subsided. Something my Neurosurgeon (Mr Martin Hunn) noticed was that my attacks seemed to occur when the air temperature fell below 10c (50f) especially for days, so we both took that to mean Vasoconstriction had a part to play. May be worth mentioning to your Neuro man when next you see him. I was also amazed to see your daily Tegretol dosage at 2400mg!!! I was told 1200mg was the maximum and I had to be on the lookout for mouth ulcers and STOP (not decrease dosage) taking it until cleared by my GP. Mouth ulcers (provided normal oral hygiene practices are continued) are indicating Liver function issues and potentially life threatening.
Now 10 years on from my MVD, the first of a series of new attacks (v/mild) has started. Firstly in winter, where we in Wellington can average below 10c for weeks at a time, and so seems to add validation to the vasoconstriction antagonist theory.
Cheers
Michael
GomeraM said:
Dear John
Thank you for sharing your experiences. Our friend from New Zealand is right: you are unlikely to find any specialist who will list GPN as their area of specialisation, precisely because there just aren't too many of 'us' around.
I was diagnosed with GPN some years ago. In my case, to been coming and going and the period between attacks has progressively shortened (from 2 years to under 18 months). The dosage of Tegretol has increased progressively with each attack (from October 2014 to February 2015 I was on 2,400mg per day I.e. 800 mg three times a day).
Luckily the symptoms have retreated significantly and I've reduced dosage to 200mg per day. I was recommended for MVD and would have gone with the Neurosurgeon I'm currently seeing. We however agreed that since the symptoms have retreated, it makes no sense to proceed with the surgery since there would be no way of telling whether or not the surgery has been successful.
However, the surgeon informed me that MVD works for TN patients and for GPN. I expect the symptoms are likely to return sometime this year. At that time I will go for the MVD...
Good luck wth yours when you decide to go for one.
Thats very interesting - many thanks. The vasoconstriction theory sounds plausible. I will check with my Neurosurgeon next time I visit.
The dosage of tegretol I was on is unusual. I was informed its the maximum allowable. The risk was bone marrow production. My GP was monitoring my Full Blood Count every week while I was on that insane dosage. If ever anyone goes on that dosage, it is important that you work with your GP and ensure they are monitoring your vitals every week.
The intensity of the pain made the risk worthwhile - if ever such could be said about the risk!
If you have been free for ten years, that is remarkable and something I would look forward to.
Thats very interesting - many thanks. The vasoconstriction theory sounds plausible. I will check with my Neurosurgeon next time I visit.
The dosage of tegretol I was on is unusual. I was informed its the maximum allowable. The risk was bone marrow production. My GP was monitoring my Full Blood Count every week while I was on that insane dosage. If ever anyone goes on that dosage, it is important that you work with your GP and ensure they are monitoring your vitals every week.
The intensity of the pain made the risk worthwhile - if ever such could be said about the risk!
If you have been free for ten years, that is remarkable and something I would look forward to.
Max, 2400 mg/day is about twice the maximum recommended dose for Tegretol. I'm amazed you could even stand up while taking that much.
Regards, Red
GomeraM said:
Dear Michael
Thats very interesting - many thanks. The vasoconstriction theory sounds plausible. I will check with my Neurosurgeon next time I visit.
The dosage of tegretol I was on is unusual. I was informed its the maximum allowable. The risk was bone marrow production. My GP was monitoring my Full Blood Count every week while I was on that insane dosage. If ever anyone goes on that dosage, it is important that you work with your GP and ensure they are monitoring your vitals every week.
The intensity of the pain made the risk worthwhile - if ever such could be said about the risk!
If you have been free for ten years, that is remarkable and something I would look forward to.
Thank-you Max. That gives me a bit of helpful context for my discussion in May. My symptoms have been moving around from ear to jaw to tongue and combinations but are still with me. I too have tried several drug regimens and have had very limited success.
GomeraM said:
Dear John
Thank you for sharing your experiences. Our friend from New Zealand is right: you are unlikely to find any specialist who will list GPN as their area of specialisation, precisely because there just aren't too many of 'us' around.
I was diagnosed with GPN some years ago. In my case, to been coming and going and the period between attacks has progressively shortened (from 2 years to under 18 months). The dosage of Tegretol has increased progressively with each attack (from October 2014 to February 2015 I was on 2,400mg per day I.e. 800 mg three times a day).
Luckily the symptoms have retreated significantly and I've reduced dosage to 200mg per day. I was recommended for MVD and would have gone with the Neurosurgeon I'm currently seeing. We however agreed that since the symptoms have retreated, it makes no sense to proceed with the surgery since there would be no way of telling whether or not the surgery has been successful.
However, the surgeon informed me that MVD works for TN patients and for GPN. I expect the symptoms are likely to return sometime this year. At that time I will go for the MVD...
Good luck wth yours when you decide to go for one.
Thats very interesting - many thanks. The vasoconstriction theory sounds plausible. I will check with my Neurosurgeon next time I visit.
The dosage of tegretol I was on is unusual. I was informed its the maximum allowable. The risk was bone marrow production. My GP was monitoring my Full Blood Count every week while I was on that insane dosage. If ever anyone goes on that dosage, it is important that you work with your GP and ensure they are monitoring your vitals every week.
The intensity of the pain made the risk worthwhile - if ever such could be said about the risk!
If you have been free for ten years, that is remarkable and something I would look forward to.
I couldn't even stay awake on 1200mg! But now you are on 200mg, I am sure that is a much more reasonable dose.
Michael
Red said:
Max, 2400 mg/day is about twice the maximum recommended dose for Tegretol. I'm amazed you could even stand up while taking that much.
Regards, Red
GomeraM said:
Dear Michael
Thats very interesting - many thanks. The vasoconstriction theory sounds plausible. I will check with my Neurosurgeon next time I visit.
The dosage of tegretol I was on is unusual. I was informed its the maximum allowable. The risk was bone marrow production. My GP was monitoring my Full Blood Count every week while I was on that insane dosage. If ever anyone goes on that dosage, it is important that you work with your GP and ensure they are monitoring your vitals every week.
The intensity of the pain made the risk worthwhile - if ever such could be said about the risk!
If you have been free for ten years, that is remarkable and something I would look forward to.
My condition (began in 2006) went undiagnosed for 3 years and in 2009 through 2013 I was on a varied of medication to treat my flare ups. No rhyme or reason as to the flare ups but they got progressively worse (or I just couldn't stand the pain and effect on my life anymore). At the advice of a friend I went to see a neurosurgeon Dr. Edward Laws at the Brigham and Women's Hospital in Boston, MA. He reviewed my situation and said I was a candidate for the MVP surgery. He had performed hundreds or surgery for TN but only 2 MVD for GPN. I had the surgery in November of 2013 and have been entirely pain free (after having experience some level of pain basically every day) since then. I have posted a blog (haven't been on it for a bit) detailing my experience/recovery after the surgery. I am so glad I had the surgery and rid myself of this pain. I hope this information is helpful and good luck to you. Kala
Kala, that is inspiring! Thank-you so much for the reply. Medication at this point has little or no effect and side effects that I simply can't tolerate and live my life. Your post gives me hope! I just found your blog and will look forward to reading through it tonight.
john
kala said:
Hi John,
My condition (began in 2006) went undiagnosed for 3 years and in 2009 through 2013 I was on a varied of medication to treat my flare ups. No rhyme or reason as to the flare ups but they got progressively worse (or I just couldn't stand the pain and effect on my life anymore). At the advice of a friend I went to see a neurosurgeon Dr. Edward Laws at the Brigham and Women's Hospital in Boston, MA. He reviewed my situation and said I was a candidate for the MVP surgery. He had performed hundreds or surgery for TN but only 2 MVD for GPN. I had the surgery in November of 2013 and have been entirely pain free (after having experience some level of pain basically every day) since then. I have posted a blog (haven't been on it for a bit) detailing my experience/recovery after the surgery. I am so glad I had the surgery and rid myself of this pain. I hope this information is helpful and good luck to you. Kala
My symptoms were very similar to Kiwi's. My attacks would occur about once a year but got progressively longer each time. My last one lasted for 3 months and each flare up would last 1 hr at a time, having about 4 to 5 attacks a day. I had the decompression surgery last July and have had no problems since. Its almost been 1 year since my last flare up started. My surgeon said the nerve was pinched in 4 places. I had my surgery at Methodist Hospital in Houston, TX. My surgeons name is Gavin Britz, head Neurologist there. Excellent doctor!!! I go back for a check up in July but have had no problems or symptoms at all.
Leswy, Thank-you so much for sharing your experience. It is really helpful to be able to gauge my symptoms against the experiences of others. My episodes have also been lasting longer each time - since late February this time. Currently, the spasms are almost continuous but, thankfully only about 6/10 on intensity most times. I hope your July checkup results are great across the board!
john
leswy said:
My symptoms were very similar to Kiwi's. My attacks would occur about once a year but got progressively longer each time. My last one lasted for 3 months and each flare up would last 1 hr at a time, having about 4 to 5 attacks a day. I had the decompression surgery last July and have had no problems since. Its almost been 1 year since my last flare up started. My surgeon said the nerve was pinched in 4 places. I had my surgery at Methodist Hospital in Houston, TX. My surgeons name is Gavin Britz, head Neurologist there. Excellent doctor!!! I go back for a check up in July but have had no problems or symptoms at all.
hello, I just a few min ago posted a reply to a separate tread in regard to my own diagnosis and subsequent successful MVD, after a positive "Fiesta" MRI . You might want to take a look at that. MRR