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Soula’s PN Weather Update

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Soula's PN Weather Report

Soula's PN Weather ReportIt’s been a while since I posted a personal update but it’s probably accurate to say that PN’s weather patterns need to be documented seasonally. I mostly have turbulence, like it’s sunny one day/stormy the next, or otherwise described as I take two steps forward and about 1.9 steps back. It’s incredibly frustrating. So rather than report all the fluctuating details in between, it’s best to leave some months go by to really figure out the progress. So now, the months have gone by and I can deliver to you, Soula’s PN weather update for September 21, 2013.

-5° –23°. Sunny morning, windy, followed by a few showers. Expect a sunny afternoon and rollercoaster barometric pressure.

I will begin by reiterating the word I used above, progress, as in the overall scheme of things I am up more, in less pain, I have less spasms, less flare ups, I am able to do some light duty work and I am mostly rid of the horrific fatigue. This progress still heavily relies on my number one treatment, Theo, who helps me 24/7. I use my seating aid almost all the time, I also have fortnightly treatment with my Italian Chinese Medical (ICM) Practitioner, Raffaele Vavala, a monthly remedial massage with the brilliant Pam Frost, very little use of my stimulation device, foot massages on demand (there’s Theo again), naps as needed, and a cooling (backward) bidet when the dreaded flare is approaching. My consumable treatments are the herbs from my ICM, his cooling patches that I apply daily, the 5-10mg of Endep* daily, the occasional Nurofen and when I’m really in the thick of it, all of the above topped with Sparkling wine (yes I’m condoning alcohol but just for ME!).

26°. Fine and sunny.

So those of you who have been following my story will notice one major treatment has been eliminated… the nerve block! Taking in the fact I’ve not needed a fourth nerve block now and that I hardly use my stimulation device, I have much lower pain levels and I am more active, I believe that it certainly is progress.

15°. Thunder, rain, wind. More thunder, rain and wind.

My limitations are many, I still don’t drive and still avoid being in the car for drives more than a few minutes long, I’m still unable to ‘up and go’ – by that I mean going out to pick something up from a store, heading out for the day with my sister/nieces/a friend, I can’t even begin to plan these things because I’m trying to keep my capacity for a little work and creativity, and my very special local outings with Theo. When anyone needs help, I can’t provide it physically, I don’t even deliver the week’s newspapers to our neighbour, I don’t step out to buy the milk, take a package to the post office, visit my local art shop to pick up some goodies, carry a handbag, put on heels, even wear my heavier boots daily… and you’re probably guessing I hardly do any chores either. To top the limitations off, there are renovations going on next door and the regular rattling of the compressor feels like someone’s drilling into my spine via my feet and our shared concrete slab . I’m so grateful to the brilliant building crew who have now put their compressor on a rubber mat, yes what precious treatment does my backside get?! Thankfully Theo explains these details to the builders and I don’t have to stand there talking about my backside and how the nerves within are rattled all the way to my brain! Honestly, the fatigue hits in seconds and that’s just from noise! It does get a little stormy…

Come rain, hail or shine

PN is so erratic. It’s about sacrifice, trading this for that, and worst of all… slowing down if you want to speed up. PN is very much like the weather, there’s no way of predicting the daily forecast so whatever the weather, you just have to cope. I’ve gained a huge understanding of my injury since my diagnosis and that becomes more clarified with every visit to Raffaele Vavala. Just yesterday when I stated these words to him, I mostly feel I take two steps forward and about 1.9 steps back, he replied with, “Soula you must remember your initial injury is a shock to the nervous system so that’s where you will feel things most.”. That’s not exactly a completely sunshiny outlook but my problem is identified and so I can keep on working at it… ride out the storms, and enjoy the sunshiny days.

*My Endep consumption began with 1/4 (of a 10mg dosage) every third day and over many weeks I worked up adding 1/4 of the tablet slowly. I now take a 5mg tablet cut in half  (morning and night Day 1) and 3/4 of the tablet cut (to be taken 1/4 in the morning and 1/2 at night) amounting to 7.5mg on Day 2. After a horrid previous experience with a Tramedo/Lyrica cocktail, I approached my next recommendation from Dr Courtney and Anne-Florence Plante with much more caution. Surprise, surprise I have pain relief and nowhere near the horrific side effects that left me unable and unrecognisable to myself.

Related Posts
My pre pain life…
My family, Theo, Origin of Image & Zephyr…
The big bang injury…
The way relief started…
The way relief continued…
Diagnosis: Physiotherapy at The Women’s…
Building Blocks…
Next stop: Traditional Chinese Medicine…
Soula’s PN Weather Update…
My practitioners

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15
  • Rob Tomlinson

    Oh Soula – just reading all your blogs, web pages, studying your book No118 “art & chronic pain” for a long time. Never have I heard of a male, yes I am male 77 years very, very healthy and fit but have had PN for years. The horrible drug history, misdiagnosing, (two years on prednisolone for polymyalgia) which I never had ultra sounds CTs MRI, nuclear medicine images, specialists, pain specialists, neurologists, Dr, Dr, Dr, the list goes on and still at square one. Yes I have a confuse, a very bad neck C4, C5, C6, C7 motor car accident 20 years ago. My wife had breast cancer and breast off, we had been reformed Christians all our life. She goes loopy, dreams she is the “bride of Christ”, her words, and slavishly follows the TV religious maniacs and leaves home. We have 4 daughters with 14 grandchildren who all live in Canberra. That is all very sad. My best friend hangs himself in The Mental section of the Orange base hospital, his wife and four children turn to me to help prepare a case, those specialists have convenient memories and tell untrue stories supported by years of education, we are going no where there but it may help that family. I am on a Board where we are required to have a disable person who takes us to court, we lose, but requires all the board to do a full mental disability course, would have been handy understanding my wife, her mother spent years in and out of mental institution’s and my friend earlier before he hanged himself. On top of all this a white tailed spider bite with six months of hell. This PN pain is the other side of hell, my medication is Targin, Endep and too much Panadine forte, not helping much. My brother emailed a photo of a bandage that a Physiotherapist at the Tamworth Base Hospital (it is V shaped I will email it to you) did some piriformis muscle exercises and that seems to fix him until next time. I have to wait four weeks for local private Physio or 8 weeks for the hospital one. Your acupuncture is next when I fine one capable; seems a bit scary, but in pain, any thing, Joined APM and a couple of others, all helped, but you seem to be in front.

    • Soula

      Rob that is too much for a person to bare. I hope acupuncture helps, don’t stop searching. I truly hope you find some relief from your pain, the grief and losses you are also suffering are very sad to read. I hope my art and reading the blog helps in some way. Take care.

  • Bam's Kitchen

    Hello there Soula, I am concentrating on the sunny parts in your forecast. I am delighted to hear that you have not needed any more pain blocks, rarely use your nerve stimulator, and a very small dose of Endep. You are able to sit with a sitting pad for short periods that is all wonderful sunny news!
    I am still on recovery after my third block and pulsed radiofrequency ablation procedure and rely heavily on my physiotherapists for support. I think I should buy stock in “Tiger Balm” as I use so much that I am sure that had to put on a third shift to keep up with supply and demand needs. I think I too will be back to see my TCM practitioner this week. Wishing you a sunny balmy day! Take Care, BAM

    • Soula Mantalvanos

      Hello BAM, That’s a great reply. Doesn’t Tiger Balm create heat??? Are you sure that’s right to use? Inflamation needs cooling (my experience, of course PN is so different for all of us) but I use these daily: http://www.waylesshealthsupplies.com.au/shop/catalog/product_info.php?products_id=53 They have reduced the spasm so much!
      Wishing you a sunny balmy day too and that this week’s TCM visit sorts the pain out.

      • Bam's Kitchen

        Hello Soula, I will also check out your patches as well. Thanks for the link! Actually there are many different kinds of Tiger Balm here in Hong Kong. I buy the white one and it has a cooling affect. I also think it has a lot to do with how your brain processes the distraction. I think that the patches and balms, lotions and potions kind of work like a nerve stimulator to distract you from the burning pain…and that is a very good thing. Take Care, BAM

  • Grace Bet

    Hi Soula, I follow your story regularly and can relate word for word. Nerve blocks, horrific side effects from cocktails of pain releaving drugs and all while raising my 4 year old twins who were 18months when I was diagnosed with PNE. 12 months ago I under went Bi lateral pundendal nerve release surgery with Dr Vancillie in Sydney. It has changed my life! I am mostly pain free and only on a small amount of endep. Life looks good again. So nice to have a site that contributes to a growing awareness of this condition.
    Stay well,
    Grace

    • Soula Mantalvanos

      Grace that is the BEST comment anyone can make on this site. Thank you for stopping by, I’m so happy to read that you are well and have had great relief. Dr Vancaillie is an Australian treasure. So so so happy for you. Enjoy life Grace!

    • JoeyG

      Grace,

      Can you share more of your experience with the nerve blocks prior to the release surgery?

      After many (undiagnosed) years I am about to go see Dr Courtney in Melbourne to discuss nerve block options and hopefully won’t need to proceed beyond that, although I haven’t read many stories of the nerve blocks giving long term relief.

      Thanks
      Joe G.

      • Soula Mantalvanos

        I’ve had three now Joey and although I am doing acupuncture fortnightly and have a daily cooling patch on, I’ve not needed another block. Good luck. Dr Courtney is brilliant.

        • JoeyG

          Thanks Soula. Is it fair to say that the nerve block is of limited long term help then? Or has it provided some lasting, but only partial relief?

          Thx.

          • Soula Mantalvanos

            Hi Joey, it’s so hard to say, i’m going to have to wait months to really know that answer. The acupuncture fortnightly could be what’s holding fort and if I stop that I may need another block. Or perhaps the block got me to the next stage and acupuncture can be effective now as it never could before. That’s the thing with PN, all our journies are different, even when some treatment seems not to work it may down the track or it could have caused a flare like my blocks did and then I settle and do get relief. So hard to say. I’m also wearing a daily cooling patch now. Have had those on everyday for a couple of months now… I think I’d be confident to answer your question in about 6 months. Terrible I know… Cheers

  • Vinod.

    Hi Soula
    I appreciate your courage to openly tell your story. My wife is sufering from PN for more than few years. We follow your blog regularly. besides all the medicines and managing activites Kundilini yoga and meditation has helped her manage pain little better. We are also in Melbourne and would love to meet and discuss with you and Theo.
    Regards,
    Vinod.

    • Soula Mantalvanos

      Vinod thank you for taking the time to comment but I’m sad to read you understand and that your wife also has PN. Kundalini is a brilliant form of yoga, so soothing. I’ve not yet managed any form of routine or even able to do more than a few light poses. Meeting is a little difficult. Perhaps in time when I feel a little better. Writing the blog and now being a coDirector with Pudendal HOPE is a great PN load! I try not to surround myself too much more with it, I feel it suffocates talking about it all the time. I rather aim for pre PN activities… I hope you understand. You are welcome to email me. soula@pudendalnerve.com.au
      Regards, warmest wishes to you and your wife

      • Vinod

        Soula, I perfectly understand what you mean, May you be free from suffering and be happy.

        • Soula Mantalvanos

          Vinod thank you for your understanding. It means so much. Now I know you understand this dreaded issue. I hope also your wife is free from suffering and can be happy.

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Definitions of pain

What is Pudendal Neuralgia (PN)?
Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggravated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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