Did a search and came up with the following links, hopefully someone at
The TNA Melbourne support group can share some insight , there’s phone numbers & email contacts .
Scroll down the following two links for TNA Australia, you’ll find contact info for the support group in Melbourne, I believe the 2nd link is the most updated.
It is so hard to know what to do. I suppose I had hoped to have those personal recommendations. It always seems like such a waste of time and effort and not to mention money to 'shop' for specialists. I have done it before and usually feel like I have invested too much to back out when I don't feel happy or comfortable with the doctor I end up with.
As no other info is forthcoming and my condition is clearly not going to solve itself, I have today made contact with the office one neuro whose name comes up quite a bit. I could not make an appointment up front as the neuro likes to triage patients for consideration. Argh!. So I need a referral first. I better formulate a back-up plan here, incase my first option falls through!
Thanks again Mods. Good to have someone listening, if only 'cos it's their job!
Hi, if you haven’t already done so, contact the support group leader in the 2nd link above, they seem to have a good group of TNers in your area, they could give you personal recommendations.
Do you have a family doctor who could do the referral for you?
I know it’s difficult but it’s been my experience despite our pain and limitations we need to advocate for ourselves. Sigh, wish it weren’t the case…
I know for me, in the end when my pain was no longer controlled by meds, I knew I needed to find someone to “support” me and help me search out alternatives. My Neuro & my family doctor have been that for me. It took awhile though to find a good neurologist . Don’t give up, they exist!
Not sure how your medical system works out there, but perhaps contacting the TNA of Australia or Melbourne itself would be a great place to start…??
Thinking of you & sending positive thoughts!
Mimi
PS, my oldest daughter is moving to Melbourne from Canada in a few months…to work and travel.
Hi Penelope - fellow melbournian - Alfred Hospital Neuro clinic's ok; Katriona Reardon at St Vincents is great - she gets it when you say you don't want to live like a zombie. Give her a go if you haven't found anyone.
I really am desperate now - after 3 years - to get that medical support. I do have a long suffering GP and dentist, but they can only do so much.
Also, most of the time I feel that my decision making and everything else is impaired by all the meds - so I find tasks such as locating a new neuro almost insurmountable. I also feel incredible anxiety about the need to make decisions about medical care. Poor previous choices and other mistakes have left me almost inert. Time is a wastin', pain is increasin'!
Wow! Will your daughter be here for long? Is there anything we can do to help from this end?
Thanks again,
P x
Mimi said:
Hi, if you haven't already done so, contact the support group leader in the 2nd link above, they seem to have a good group of TNers in your area, they could give you personal recommendations. Do you have a family doctor who could do the referral for you? I know it's difficult but it's been my experience despite our pain and limitations we need to advocate for ourselves. Sigh, wish it weren't the case... I know for me, in the end when my pain was no longer controlled by meds, I knew I needed to find someone to "support" me and help me search out alternatives. My Neuro & my family doctor have been that for me. It took awhile though to find a good neurologist . Don't give up, they exist! Not sure how your medical system works out there, but perhaps contacting the TNA of Australia or Melbourne itself would be a great place to start...?? Thinking of you & sending positive thoughts! Mimi PS, my oldest daughter is moving to Melbourne from Canada in a few months...to work and travel. :)
So like some crazed TN stalker, I've been going through your posts trying to piece together your story: I have only got so far.
Out of curiosity: when you say 'zombie', do you mean due to the pain or the truck load of meds needed to slow the pain? I am currently functioning - sort of - thanks to 4 x different meds (Verapramil, Gabepentin, Tegeretol and Endone) it is no way to live.
These days I cry: a LOT. I fear next specialist I get to is going to decide I am having a breakdown as I will be sure to turn into a blubbering mess.
May I ask: what has Dr (?Prof) Reardon's treatment of your TN been? How was it actually diagnosed?
Thanks again!
P x
Smiley said:
Hi Penelope - fellow melbournian - Alfred Hospital Neuro clinic's ok; Katriona Reardon at St Vincents is great - she gets it when you say you don't want to live like a zombie. Give her a go if you haven't found anyone.
I didn't quite find anyone, but my GP referred me on to someone - whom I see in a few weeks - so I am about to see someone, but not someone who was recommended or is known to have some amazing way with TN.
Nope, but if you send a message on the Aussie subgroup (click Send Message to Group in the upper right, above the member photos), I am hoping that you will get a couple more recommendations.
I'm not sure if this is helpful to you, but I have had TN for over 6 months. It started gradually and then escalated to quite a bad situation where it was hurting to eat and talk and sometimes my face would spasm for no reason at all. It was at that point that I saw my chiro and started having remedial massage on my neck and face and surrounding areas. For the first 4 or 5 weeks there was no change but then gradually my pain started to decrease and after about 3 months of treatment I have now been completely pain free for about 5 or 6 weeks. I'm clear that this will no doubt come back at some stage but for now it is so amazing to have some relief. I'm not sure what area you live in, but if you are interested in my chiro and massage therapists' details please let me know. Good luck!!
