I am new to this forum and have recently been diagnosed with TN. My TN seems to be Atypical as the attacks can be as in TN type 1 where there are shocks and stabbing pains, but also TN type 2 with the pain sometimes last over 24hrs. The pain is mostly (I have heard it is in an uncommon region) via the top part of the Trigeminal Nerve, the Ophthalmic nerve where pain is through my head, over my ear and out my eye and over my brow. I also experience occasional pain through cheek and jaw.
I am currently being monitored by the doctor and Neurosurgeon with regard to my medication. I am currently taking Tegratol 100mg slow release twice daily and for pain Tramadol 50mg also 150mg slow release twice a day with Valium 5mg and Celebrex as required. I do not want to be on medication, it makes me have dry mouth, dry ears, feel like I am dopey but with a dull ache continually there. The pain and medication leave me restricted to my bed often. For the past week I have spent 3 or 4 days in bed. I would much rather have surgery, with the hope that I can go back to working.
So my question is (I live in NSW, on the Mid North Coast) does anyone know of a good Neurosurgeon who has done MVD, that you would recommend? The closest cities to me would be Sydney and Brisbane.
I would also like to know whether the surgery is on the Medicare system? If not, what estimated price to get it done privately?
Hi Bjorn, not sure if you are still looking for a neurosurgeon, but if you are I would highly recommend Dr Mark Winder at st Vincent’s Private Hospital in Darlinghurst Sydney’s. He is the most kind, empathetic surgeon I have ever come across. He did my MVD in August 2012. He even came into the hospital on a Saturday just so that I could get discharged and not have to wait until the Monday.
Initially the surgery stirred up the nerve a bit and I had to continue on tegretol (100 mg/day vs 1200 mg/day before surgery) for about 6 weeks. Then 2 years symptom free no meds. Unfortunately the TN returned, not nearly so bad and currently trying different meds (Lyrica) to control it.
Haven’t been back to see neurologist or neurosurgeon, just a good local GP.
Hope your surgery is successful. Duckie
Hi Duckie I realise it has been some time since you replied to my original letter( thank you ).I havent visited bens friends for some time now.You may be pleased to know I recently had my MVD surgery ( 22 may 2015) So far so good.post op pain is getting less and less by the day.Hospital stay was Hell , med muck ups , no sleep etc , lost 3.5 kilos in 4 days.That makes ten kilos in ten months.I was only 76 k to start , so now im back to the same weight I was nearly 20 years ago. I guess thats a plus.My surgeon was Dr Behzad Eftekhar, at Nepean hospital Sydney.He was pretty much the only surgeon I could refer to in the Coffs coast region( he has an office there ) Long story short , I opted to go on the public waiting list , he said the wait was 12 mths ,tho he was confidant I would get called up sooner. 10 weeks later I get a call "Can you be in Sydney in 3 days time, we had a cancellation, we can do you instead." So we dropped every thing and went.Doc says procedure went well , although gave next to no details or description. Checked out on 25th , very happy to get home. I am feeling better day by day ,looking forward to full recovery and no meds .
Thank you for taking the time to write me and your good wishes.
Kind regards
Bjorn
Duckie said:
Hi Bjorn, not sure if you are still looking for a neurosurgeon, but if you are I would highly recommend Dr Mark Winder at st Vincent's Private Hospital in Darlinghurst Sydney's. He is the most kind, empathetic surgeon I have ever come across. He did my MVD in August 2012. He even came into the hospital on a Saturday just so that I could get discharged and not have to wait until the Monday. Initially the surgery stirred up the nerve a bit and I had to continue on tegretol (100 mg/day vs 1200 mg/day before surgery) for about 6 weeks. Then 2 years symptom free no meds. Unfortunately the TN returned, not nearly so bad and currently trying different meds (Lyrica) to control it. Haven't been back to see neurologist or neurosurgeon, just a good local GP. Hope your surgery is successful. Duckie