Needing recommendations for a neurosurgeon in Australia, preferably in Eastern states…I live in Tasmania. I have been diagnosed with GPN 12 months ago after suffering excruciating pain off and on for past 5 years…last bout of pain lasting over 12 months. MVD has been recommended and I am considering it as I have been having increasing breakthrough pain and having increasing side effects from the meds I am taking…have tried several different meds doses and combinations. I am a 63 year old woman who has not been able to work as a paediaric registered nurse forthe last 8 months due to the side effects. Hope someone can help
Hi Rara (haven’t I written to you before???)
I have GPN too and, unlike TN, there’s very little expertise with GPN across the country. I would recommend that you see Professor Andrew Kaye in Melbourne. He’s a highly regarded neurosurgeon with the most GPN experience. Big reputation. Kaye works in conjunction with Associate Professor John King, a neurologist. King does the initial consult and determines whether he recommends you for surgery to Kaye. You only need a gap of an hour between your King and Kaye appointment. King will dictate off a letter to Kaye, who works a few doors down, pronto.
I had a failed MVD in Perth and I intend to see Kaye for a more progressive surgery. I was talked out of the surgery the offered me. I wish I hadn’t let myself be thus persuaded.
On medication, I’ve found that only thing that’s every really helped me, and it’s been amazing compared to all the other drugs, is Paxam, at .05mg bd. Give it a whirl perhaps? Gave me my sanity back.
Let me know if I can help any further.
XX
Thanks Somethingforkate I appreciate your reply and will be looking into the neuros you have named. What is the surgery you are intending to have ? I will discuss Paxam at my next Drs appt.
Hi Rara
I previously had an MVD of my 5, 7, 9 and 10 cranial nerves in 2014. It was a spaghetti junction in there, so I was in theatre for 3 ½ hours. It failed spectacularly.
I was also offered an MVD with sectioning of the 9 cranial nerve, and sectioning of the 10 cranial nerve rootlets (10th is a motor nerve, so they just cut the sensory part). This is the surgery Professor Kaye offered me in Melbourne, as did a number of surgeons in the USA. I stupidly let a surgeon in WA talk me out of it.
Go the Paxam! It freaks some doctors out because it’s a benzo, but it’s saved my life. In addition to being a benzo, it also has strong neuropathic effects. For me it’s sorted out lots of the aching and burning and pick axe in the ear and mastoid and most of the lightening electric attacks. Low dose……
.05mg morning and night.
I am prescribed it by my pain management specialist in WA who is also a qualified neurologist and neurosurgeon – Dr David Holthouse.
x
Hi Rara, I was unable to see you in Tassy unfortunately due to Family business!!
Dr King and Prof Kaye are The specialists who directed and operated on me many years ago. Every one is different as is every opinion and surgery. I had the 9th nerve cut.
If you come over to Melbourne please let me know if I can do anything. Happy to meet if you need moral support.
Very occasionally I take Palexia, Maxalon before for nausea. It helps break the cycle of pain for me, however, is slow release and is prescribed am amd pm. Only drug I can tolerate.
So sorry you are in so much pain.
Another very helpful Neuro is Elspeth Hutton. Not surgery, but has helped with Occipital Nerve Blocks. Alfred Neuroscience.
Good luck. Regards WW Lisa
I had mvd in June by a neurosurgeon here in Tassie…very apprehensive but the pain and increasing side effects of the meds had seriously changed me. My neurosurgeon found the lower cranial nerves (9 &10) were stretched and coiled over an artery. I continued to have very low dose of Tegretol for a few months post op as I was still experiencing some pain but have been pain free and medication free for last two months!! I am also nearly back to my pre GPN self although I am still very fatigued and some decrease in mental clarity but I am seeing an exercise physiologist who I hope will improve this. I am still off work due to these issues but hope to return early next year. Hoping everyone on this topic are experiencing good days.
Elspeth is awesome, best I’ve been in years thanks to her.