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New member from QLD

Posted: Tue Nov 01, 2011 3:45 am
by Buschy
I've been visiting this site for a little while now and thought it was about time I made introductions. I'm 46 and from North Queensland, Australia. Below is a summary of what I've been through recently... Although inconvenient, the pain isn't moderate>severe these days (generally 3 or less on scale) and hasn't effected my mobility. Not now anyways, it did somewhat 6 to 12 months ago. I can now walk, swim, walk up hills, do stairs (gently), stretch and it doesn't seem to aggrevate my condition. Haven't tried running again. What does aggrevate my pelvis is sitting for extended periods of time, or tensing it when stressed, lifting something a little bit heavier than usual, etc. I can now sit for a few hours when required, but feel much better on weekends when away from my desk and out and about (I have a desk job). However, I really wish I could get rid of the tightness and discomfort in my pelvic region once and for all!! Stretching does seem to help but only so much.

2005>2010 - Pain at the end of urination following more strenuous exercise involving weights or a forced bowel movement (off and on for a few years). No treatment sought, as it would go away for fairly long periods of time. (Note: still have this problem and have to be very careful not to get constipated..).

March 2010 - Visited GP due to sacral pain while sitting, MRI taken & diagnosed with mild L5-S1 disc degeneration. Given NSAIDS (Anaprox), and followed bulging disc exercise regime. Stetching & strenghtening. Probably aggrevated my PN but didn't know I had it at the time.

April 2010 - Fell very hard directly onto sacrum & coccyx while kite boarding. Re-visited GP & the MRI's only revealed disc problem. Pain in sacrum & coccyx, anal/rectal pain, pain in my perinium & privates, tightness on inside of left leg near ishial spine. Difficulty sitting. Given NSAIDS and Panadeine. Little relief.

December 2010 / January 2011 - Visited orthopedic surgeon and treated for Coccydynia - 2 corticosteriod injections (not guided). Little relief, perhaps sitting a little bit easier.

March 2011- Visited urologist. Basic tests revealed nothing. Visited spine specialist. Problem disc suspected as causing referred pain to areas above. Spinal epidural performed. No relief.

May 2011 - Visited pain management specialist. Unguided mild steriod injection into area around ishial spine. Perhaps mild relief.

September 2011 - Visited Dr. Thierry Vancaillie in Sydney. Pain caused by the palpating during examination strongly suggested PN. Guided nerve block performed. Perhaps slight relief initially after procedure but no ongoing relief. Still have tightness on inside of left leg near tuberosity and above, and ongoing anal/rectal pain, pain in penis at times (usually if I tense/strain pelvis by lifting something a little too heavy). Sacral pain seems to have become much milder lately (practially gone).

Re: New member from QLD

Posted: Tue Nov 01, 2011 12:30 pm
by helenlegs 11
Hi Buschy, Welcome :)
You do seem to have done it all well without anyone's help here or did you find Dr. Thierry Vancaillie through this site? Good for you whatever.
Could you get a stand up desk for work I wonder? One that could be higher or lower perhaps as you do seem to be able to sit for a while and standing all of the time can sometimes bring other problems.
Have you tried any physio? there is a list on the home pages. Sunil sees Peter dornan who will give patients recommendations by e mail I think, if it is too far for them to travel.Maybe best to contact Sunil for that however.
What did Dr. V say could be next on your medical adenda?
There are all kinds of conservative treatments of course not that I am particularly recommending any of them but many are listed on the home pages.
One of the newer ones that I found interesting as I seem to have tried most of the rest, was shock wave therapy. There is a thread on this procedure.
It sounds allarming :) but is supposed to be able to break down scar tissue. it may not be available in Australia, it is here UK but mainly for plantar fasciitis (foot problem) Maybe that's a step too far when thinks are going in the right direction for you anyway.
Wonder what would happen if you had some time off work, 2 week hols? Now that's a better recommendation if ever I heard one :)
Take care
Helen

Re: New member from QLD

Posted: Tue Nov 01, 2011 11:23 pm
by Buschy
Hi, I believe I did come across Dr. Vancaillie’s details from a thread on this site.
I have tried moving my computer to a bench and standing at work, but the standing in one spot starts to cause pain after a while as well. Finding an excuse to get up for whatever reason regularly throughout the day and walking around the office seems to help the most. I also had a coccyx pillow for about the first year after my fall but now find I have less pain sitting for longer periods without it. I haven't tried rolling up towels and placing on my chair so that I'm not exerting force directly onto my perineum, although this felt awkward when I tried at the physio’s office
I tried physio once a week for the first 4 months this year. Unfortunately it didn't seem to make much of a difference. It appears that the local physiotherapists I visited know little, if anything, about PN, but the one I stayed with did manage to send a couple of emails back and forth to Peter Dornan in Brisbane. I came across Peter's details via internet search as well. Dr. Vancaillie strongly suggested I visit Peter in Brisbane personally for an assessment which I will make a point of doing once I get back from holidays. In a couple weeks time I am heading overseas for almost 2 months so that will provide a decent break away from my desk and reduce the amount of sitting (other than flights, driving, etc.). My first stop is actually Santa Monica and I had arranged to visit with Dr. Filler, but have cancelled since visiting Dr. Vancaillie a few weeks ago. Not sure if this was wise but the cost of having anything done in the U.S. is FAR more expensive than in Oz, and it seemed like overkill now I’m Dr. Vancaillie’s patient.
Both Dr. Vancaillie and the pelvic floor physiotherapist he works with suggested I could try Botox. However, given the possible side effects, and the fact that I'm going on holidays in a few weeks, we decided to wait and see how things pan out over the next couple of months with the treatment they provided (nerve block, stretching, supplements, etc.). I can always return for the Botox treatment early in the new year. I 'think" he did say that the Botox doesn't do much unless supported with physio? As far as I'm aware there is no one local that I can visit for internal myofascial release and trigger point therapy. I assume that is the type of physio required? When this was performed in Sydney it became obvious very quickly during the internal exam that my right side was flexible but left side was very very tight. I'm far from being an expert but it would seem reasonable to assume that this lack of flexibility is contributing to my condition.

Re: New member from QLD

Posted: Tue Nov 01, 2011 11:30 pm
by carolynm
Buschy,

Welcome to the group! It sounds like you have done an amazingly good job of "getting" with the right people, and have a good plan of care. Hope you have pain-free holidays.

cari

Re: New member from QLD

Posted: Thu Nov 03, 2011 3:40 am
by Violet M
Buschy, if you run into difficulty while you are in Southern CA, there are some excellent PT's there and also Dr. Sheldon Jordan does Botox and nerve blocks. I have yet to hear of anyone who had permanent relief from Botox prior to PNE surgery though. Do you have any pain meds to get you through the flights back and forth?

Re: New member from QLD

Posted: Thu Nov 03, 2011 6:05 am
by Buschy
I'm looking forward to the trip but not to the long flight! The longest flight I've been on in the past 18 months is 5 hours. Yes, I'll make sure I have something with me to address any pain. I think the first half of the flight will be manageable but the second half should prove interesting. At least the amount of sitting I normally do will be greatly reduced for the several weeks that follow. When I first arrive I will be in Santa Monica for 8 days so if you know of a good PT in the area let me know. I'll also be heading north to SFO along the coast road shortly after that. Thanks. Fortunately, I'm off to see Peter Dornan PT in Brisbane just before I go. I made the appointment this morning.

Re: New member from QLD

Posted: Thu Nov 03, 2011 5:33 pm
by helenlegs 11
Peter does seem to be excellent and I'm sure he will be able to give you sound advice and maybe tips for travelling long distances too. Things I have seen written on here that seem like good suggestions are; take some plastic bags that can hold ice and ask the stewards to supply it, stand and move around as much as possible, maybe let the stewards know in advance that you will be doing this and make sure any medication is to hand not packed away. Sounds daft I know, more like something I would do.
Then just have a great time.

Re: New member from QLD

Posted: Sat Nov 05, 2011 4:25 am
by Violet M
I've heard Angel Spruill is excellent and she is only 26 miles from Santa Monica -- but maybe someone from Santa Monica can tell you of someone closer.

Angela Spruill, DPT
Custom Physical Therapy
325 Rolling Oaks Drive, Suite 210
Thousand Oaks, CA 91361
Tel: 805-446-3141
Fax: 805-446-3140
Website: customphysicaltherapy.com/cpt_w_therapists_angela.htm

OR

7230 Medical Center Drive, Suite 205
West Hills, CA 91307
Tel: 818-592-6030
Fax: 818-592-6034