Dear Friends: I live in the UK and have lived with GPN for some six years.
I am looking for advice on surgical options for GPN. As indicated in my last post, I’ve been on tegretol all along but it appears to be losing its effectiveness.
My Doctor has recommended ‘Posterior fossa decompression.’
My first question is has anyone on the list had that method tried on them and with what success?
I know that some on the list have tried MVD. I would be keen to hear of their experience with MVD regards GPN.
Second, would anyone know any neurosurgeons in the UK with experience on GPN?
Hi GomeraM, I don't know about the fossa decompression in fact I've never heard of it. I've only heard of GPN sufferers having GAMMA KNIFE surgery or the MVD.
I am in the West Midlands and have suffered with GPN with 4 years, but "officially" was only diagnosed this November when I FINALLY found a neurosurgeon that had experience of dealing with GPN and more specifically, doing an MVD for it. He is in the Royal London Hospital, and while I have to travel to see him, it's been a revelation and a relief to have someone INSTANTLY understand what the hell I've been going through. I am having the MVD surgery with him this February. I should point out that prior to this, I was being referred to ENT after ENT within the West Midlands and had several investigative 'procedures' with 3 ENTS in different hospitals until I just got fed up of being "treated" by people that didn't have a b**dy clue what they were dealing with!! In the end, I took CONTROL myself and got on FB and chatted to some UK people on there that had been treated by GPN specialists in this country. One gave me the name of my current specialist and I just gave his details to my GP and requested that I be referred to him. If you'd like his details, PM me.
Where are you? Hoping this finds you on a low pain day.
Hi Angela, I also live in the UK. I have glossophrayngeal neuralgia and am desperately looking for a specialist who could do an Mvd for it. I live in Surrey. Please could you gave the name and details of your neurosurgeon. Did he or she do the Mvd fro GN for you. Do so hope you reply. My name is Sandy and I line in Surrey in England
For the record folks, I disagree with us putting private emails of surgeons up here since the normal route in the UK to get to see a specialist is to ask your GP to refer you to them, not to contact them directly. Sharing names and locations yes, private email addresses no.
Folks, thank you for providing details of surgeons above, in this post. Could I ask for you to include them in our Doctor referral database please? That way, we don't lose the information as discussions are replaced. Also, a gentle reminder that if you wish to engage these surgeons it does need to be via a referral from your GP. Some of the links provide access for GPs to do this directly. Whilst the information above is already available on the public domain, Granadam makes a good point that any non public domain information regarding doctors should not be provided on a public forum.
Thank you so much for giving me the names of these surgeons. You do not know how much it means to me to be given the details you have given me as I have been struggling for such a long tine trying to get some help with this matter.
To dgranadam I woukd say I have asked for referrals from my Gp who has informed me she does not know anyone. That I know more about GN than she does as she’s only ever come across it once in her life when she was a student studying medicine, considering she only works part time now as she has retired that was a long time ago. I respect my Gp. I have consulted her for years and we have a great relationship together. So if I can find anyone who can do an Mvd for GN , that will help both of us and she will know who to refer me too.
Yes, of course, we can include them in our Doctor referral database. Thank you!
Regarding to the opinion of putting "private emails of surgeons up here" I would like to remind them that it was taken from public sources and personal websites where they invite patients to come.
It's not their home address or bank account information.
And those who are suffering should be on their fellow suffers side and not on "NHS system" side, which will speak for itself if it needs to.
I forgot to add I am sure being given these details in this web site which is set up specifically to help GN suffers can only be of benefit to all of us suffers of GN who use this site searching for help and information etc. In England as we all know we will require a referral from our Gp in any event. So why not help each other as much as we can. In addition as GN is such a rare condition the fact we may contact these named Consuktants can only help them as all of them advertise for private work and if more and more of us who suffer from GN approach them seeking assistance all of us including the Consuktants can only benefit by this as as they will gain more knowledge and experience about us / the nature of our pains and will hopefully be able to find better and better ways in which to deal with or solve our condition. In addition , it could help raise the profile of our condition and other medics may be interested to be involved in work to alleviate our pain and so on.
Thank you so much Annable for your reply. I have been struggling for so long to get the contact details of a Consultant in the UK who can do MVDs for GN suffers, so the information you have given me is such a blessing. To Granadam I woukd say that it appears that all the information which has been provided on this site is information already out in the public domain . Also I note that all of these Consultants advertise their services to gain work in their specialist fields In any event. If its MVDs for GN they will want us to approach them. It’s just a question of knowing where to look. Unfortunately I did not know where to look , but thanks to this website and Annable in particular I now do. I would also add that my lovely Gp told me she has no idea of GN as she has only ever see it once in her life time when she was a student. As she has now semi retired that was a long time ago. She has told me that I know more than she does about this condition. So I knew it was up to me to try to help myself to find out such information out in order both to assist myself and my GP. So I am so glad that finally some lovely people on this site have shared their knowledge with me and all of us about which Consultants in the UK are able to perform MVDs which successfully releive the pains of this condition.
I note I have written several similar replies which have all been published which I cannot remove . I did not intend to do this. The reason for this was after writing the original ones they suddenly vanished from my screen and when I looked at the web site were not published. So I thought I would write again. Big mistake ! So many apologies to all.
