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My pain management is turning into a thesis!

Author:
Soula M Sacral Implantation 11_1234

It’s taken almost 9 years but I’ve realised that chronic pain requires alot of study – dare I say never-ending study? I believe my research for pain relief for chronic pain may be paving the way for a thesis!

I’ve had a good chat and stare with myself in the mirror, allowed the gut feeling to sink (for just a few seconds), called on gratitude, and here I present to you (with a backside that will soon be comparable in value to Jlo’s) another section of Soula’s Pain Management thesis.

Let’s call it Chapter 4 (approx.)

Patient: Soula (me) Age: 46 (& a few days) Chronic pain since: Mar/07 Injury: Drop to concrete floor from exploding fitball


SCS implant date: Nov 19/15 Procedure: Placement/anchoring of two 16pt Epidural leads inside the sacrum via the Sacral Hiatus & Neurostimulator/receiver Surgery time: Approx 2 hrs Device: Boston Scientific (Precision Spectra) Total Cost: Approx AUS$70k*

Thanks to: Medicare and my private health fund who covered more than 90% of the cost No thanks to: Victorian Workcover Authority & the Australian Workers Compensation system that refuse to acknowledge chronic pain and further stoop to certify this treatment as inappropriate for my workplace injury


Pain treatment history: Diagnosed at 4.5 years, 1 excision of thickened pelvic ligament, 3 x diagnostic cortisone injections (various parts of the pelvis and lower spine), piles of pain meds (tramedo, lovan, lyrica, gabapentin, etc), 3 nerve blocks, 1 x peripheral stimulation implant, herbs, various physical therapies (with various HPs) ie: physiotherapy, remedial massage, acupuncture,  etc.

etc…


Review

The consultation began roughly like this with Dr Nick Christelis – Victoria Pain Specialists:

  • I’m still very limited and rely so much on Theo’s help
  • I was hoping to gain a little more capacity if it was possible
  • I still have to avoid lifting anything above a couple of kilos
  • Can’t lie on my back
  • Can’t drive
  • Car rides are restricted to about two a week
  • Sitting with a cushion
  • Sitting leaning on tables, arm chairs, forward all the time
  • Can’t walk as far as I used to
  • Everything is carefully planned for each minute of every day

And, I want to:

  • Maximise capacity and prepare for an upcoming life change
  • Work – current p/t design work is impossible
  • Reduce the sitting demands – find a less excruciating way to make a living
  • Sit without a seating aid
  • Be able to manage short drives
  • Manage as a passenger in longer drives
  • Cook, clean, shop, etc
  • Lift more than a couple of kilos…

…yadda yadda yadda

Method

Dr Nick Christelis helped me understand that my health issue requires life-long attention. Yes, I also heard ‘some nerve pain fizzles out’ and I will hope for that each day. But I can’t just sit and hope, I need to commit to the search for relief and treatment (no divorce options!).

Got it.

So I hopped back on the treatment trail and it wasn’t too many weeks before we came to the conclusion that it was worth me trialing another stim – Dr Christelis suggesting the leads be positioned inside my sacrum via the Sacral Hiatus. (Image below shows single lead inside Sacral Hiatus)

It made alot of sense to me – why wouldn’t you put the leads as close to the source of pain as possible?Sacral Hiatus_lead

The trial

Duration: Two weeks 24/7 SCS trial date: Sep 08/15 Procedure: Placement of two 16pt Epidural leads from inside the sacrum via the Sacral Hiatus to external Neurostimulator/receiver Capacity level: Increased immensely Pain level: Reduced immensely Result: More than 50% relief, therefore successful


Trial Details

Soula M _Sacral_stim_0596

Xray showing the sacral stim trial leads with 16 points in each lead positioned inside the sacrum and the external receiver at top. Also visible is my peripheral stim with two leads identifiable by their 8 points each and the implanted receiver.

Yes, a trial is difficult. The biggest issue being the risk of infection as the leads literally stuck out of my back and were taped to the skin.

I had post op pain, I couldn’t shower, I had a belt and receiver strapped to my waist 24/7 but in the scheme of things, for me, it was not an issue. I lapped up the increased capacity and low pain levels. I was off!

I find post op pain much easier to handle. It doesn’t rise to take over your brain and fatigue you. And just knowing it will go makes the difference.

With Theo in the driver’s seat, at the 7 day mark we traveled from home to my favorite gallery Heide MOMA, then to Dr Christelis for a checkup, and on to Castlemaine for a weekend. Google tells me we travelled 275km one way!

I held a handbag the whole weekend, didn’t have a seating aid (except during travel), went out for breki, lunch and dinner, enjoyed the ride in the car to surrounding towns (I was able to sing in the car which usually hurts), and even got back home in wonderful form to allow us to head out for the evening! Unheard of for me.

The end of the trial is marked by all of a few minutes of removing bandages and about a second that it took to slip the leads out of my body.

I know, wild!

Not so wild was the wait for my real deal implant. A whole 8 weeks!!! But I had residual lasting pain relief confirming my thoughts that this nerve monster is truly a cruel beast but an implant was the right idea.

Brain, can’t you just hold that pain-free thought- you know the one you’ve known most of my life?

(Get on with it Soula)

The implant

It was a great long nap… two hours approx. It’s such a treat to wake on my back and to sleep and sleep without pain interrupting. I did that, two decent days worth of just napping. Deep sleeps. Bliss!

I’ve written about Vicpain‘s approach in previous posts. I’ve only once experienced this level of care and patient/practitioner equality – the feeling that someone is paying attention to my situation and treating ME – a person.

It was extra support to know that Vicpain‘s Dr Christelis, Dr Simon Cohen and Dr Tim Hucker work as a team. To put it in patient terms, these guys hang out together alot, even in theatre, learning, helping out with each other’s cases. That’s impressive.

From my very first appointment, to my prep for the trial and implant, to the very last blink before that sweet anaesthetic, and throughout my post op care, I heard a consistent manner and tone from Dr Christelis.

For both procedures, I saw Dr Christelis before theatre – in fact he sat with Theo and I and we went through the patient consent form together both times. Responsible much? Totally!

I knew exactly what Dr Christelis planned to do and planned to avoid, I heard the risks, and then I heard the plan again. Same warm tone, same open conversation… and there are handshakes and smiles galore. And Theo was kept in the loop at all times.

Why haven’t l always felt this cared for, dare I say – important? And why am I harping on about this approach? Because I believe it makes a huge difference.

Feeling aligned with my health care practitioner places me at the forefront, it feels more honest where previously I felt pushed back a couple of steps. Health carers can often leave you feeling awkward, like you’re too needy and there’s some secret society behind theatre doors.

I’ve felt out-of-place and kind of like I rocked up at a party uninvited. But isn’t the party for people in pain? So it only makes sense that both the practitioner and patient attend. And you better both have your dancing shoes on!

One guess what this approach did for me? One guess what it did for my confidence? One guess what happened when I came out of this new treatment? I felt as armed to handle my health condition as I most possibly could. And I learned I was most responsible for it.

I kept hearing I was responsible, and I’m still hearing that.

And now, after having moved to a more suitable location and overcoming the idea that we were settled in Collingwood, after having completely changed our lifestyle and planned a new way to make a living within my limitations, after finding a dedicated and caring pain team who have provided me with the most suitable treatment (for now) – I can wholeheartedly say that Theo and I have committed and are as responsible for my chronic health issue as we can be.

A patient with chronic pain cannot do more than that.

“The absolute key is to have a motivated, proactive patient that understands the technology and the limitations too.” Dr Christelis:

I’m guessing there may be questions…

Does the implant work?
What I mostly feel now, is post op pain. Stitches pulling, tugging, aches, stabs and oh those itches! All of this, I find easy to manage with basic pain killers. The neuropathic pain is dramatically reduced and I’ve been much more active than I was before the implant (my post op limits offer much more activity and ability in comparison).

What would I be worried about?
As Dr Christelis put it: LIPS
Lead migration
Infection – superficial or deep.
POCKET pain – pain at IPG (implantable pain generator)
Stops working – looses effects over time.…

Yes, I also nearly threw up at the last point but don’t all pain treatments lose effect? Aren’t they all just a form of distraction? I believe Lorimer Moseley covered that one with his latest post, Explainer: what is pain and what is happening when we feel it?

I’d like to think my previous peripheral distraction hadn’t lost its effect over time but rather I increased my capacity. Also four years in medical research is a huge amount of time when it comes to pain management treatment. Obviously a newer implant is going to be more effective – I want more capacity and less pain. That’s what Dr Christelis wanted for me too. He found the way and I believe he will keep searching for a better way.

So far – no worries. I’m feeling spectacular.

Where is everything placed?
Soula M Sacral Implantation 11_1232 Soula M Sacral Implantation 11_1233

(Right top: Placement of new stim top left buttock cheek with a glimpse of the peripheral device below. Right bottom: sacrum with both leads in view (old and new and a glimpse of the wires down below)

Aim
To remove the peripheral stim within 6-12months.

Can I feel the stimulation?
Yes, sometimes but not always. It’s going to take a while for us to get to know each other. It’s all new again. Don’t forget I have an extra 16 points of stimulation and each point is individually programmable.

So that means from my sacrum down to my toes, I’m programmable. Thumpy, fine, wide, spread out, strong, subtle, twangy, tingly, or silent pulses… I can have them and in any or every spot I need. Perhaps stronger in one place and lighter in another, or off in one spot and full-on in another? It’s all an option and all options are at my finger tips.

Programming info

Once programmed I have a kind of phone gadget I use to control my stimulation. I’m programmed like this:

Boston Scientific Program_jpg

 

 

 

 

Recharge?
Yes, recharged depends on use. But I need to recharge my controller and my receiver. Not even worth showing really.

Invasive?
Sure, a bit but in my opinion much less invasive than surgery to the Pudendal Nerve or removing any bones.

Summary

I could have made this post alot longer but truth be told, I want to get off this damn computer. I’ve got things to do. I am ready to begin a new life.

I’ll only say that finding treatment for chronic pain is really hard work and takes commitment and research enough to make a thesis or two! There’s no short cut, in fact the long, slow road is the shortest way possible.

In the two weeks since having this treatment I’ve been pottering around, building our new venture and preparing for our new life launch. I have a sense of peace and comfort knowing that with Vicpain‘s help, there’s been no stone left unturned in our quest to find quality of life and the best form of pain management.

We’ve done our best. Chapter 4 (approx.) is complete.

* Appointments and health cover varies for each patient

More about Vicpain’s work with pain on YouTube

How can you know? There might be better treatment out there!

Author:

I was sure. So positively sure.

I was miles better, my life was saved, I was no longer existing, I was living again.

I was sure that I was the best I could possibly be and that I’d received the best possible treatment for my type of pelvic pain.

But now, after a very successful sacral stim trial (of which I’m best writing more about later), I am left to wonder why I made up my mind and what it was that convinced me I was ‘doing great’ and reached the ‘best treatment‘.

I wasn’t, I hadn’t.

I know that living with pain for over eight years reduces confidence and belief. It even (warning, I’m going to use the C word), discourages hope for a cure. But how could I have assumed I found my best self for four years (nearly five actually, gulp!)? (more…)

A new DVD resource, Healing the Pain ‘Down There’: A Guide for Females with Persistent Genital and Sexual Pain

Author:


There have been many times during my years of chronic pain where I wondered, ‘Why didn’t I know that?’. Usually, the information is quite basic and I feel as though I’ve been deprived by never knowing something so crucial and important about my own body.

I was asked to view and give feedback before this thorough resource was released, and a few times, throughout the 284 minutes of run time, I asked myself, ‘Why didn’t I know that?’.

This DVD isn’t just about managing pain, but rather a clear and concise  resource for females… It should be put on some International educational agenda. (more…)

Back on the treatment trail

Author:

VicpainHomeScreen

Maybe I should have titled this post, ‘Back on Pain’s roller coaster‘? But then I’d have to explain my position – which would it be? Up or down? Or is this another case of in the middle – managing?

I have many descriptions for my health status and they are constantly revolving around in my head. That’s because I don’t know where I ever stand with this chronic pain. And there seems to be no one else who knows where I (or you!) stand either. So damn frustrating.

But last year, I got fortunate. Someone planted a seed… (more…)

‘Ouch’ just doesn’t cut it!

Author:

I-feel-so-frustratedAnd neither does repeating, ‘it burns’, ‘it itches’, ‘it’s like fire’, ‘I get spasms’, or the various other words people in pain have to repeat for each consult in the effort to be understood.

Pain Train’s whole purpose is to help patients and their pain management teams communicate beyond these basic words. Pain Train saves the patient the additional pain of having to repeat their history and other related details at each appointment.

Pain Train offers patients a way to also show their friends and family their profiles in the hope they can also better understand their loved one’s experience. (more…)

This Train is Bound for… Wholeville: A Travel Guide for the Perplexed

Author:

Who would have thought that pain and the design process would have found a way to merge in my life. Design is however all about communication, and being a creative communicator I got wondering about how one can document their pain journey.

I also believe from my experience with chronic pain that the area is poorly provided when it comes to expression and language. How is it possible for a patient to describe their situation when their situation has no current definition or current way to be described?

So I thought of a concept! I called it Pain Train and two wonderful things were conceived from it. My soon to be publicised online resource, and a brilliant research paper by John Quintner and Melanie Galbraith.

Pain professionals, John and Melanie, are Pain Train’s first conductors and they have applied their exceptional chronic pain knowledge to the concept with their research paper, This Train is Bound for… Wholeville: A Travel Guide for the Perplexed (download or read below).

John Quintner and Melanie Galbraith are aiming to give people in pain sufficient knowledge so that they can meaningfully engage with their respective health care professionals.This-Train-is-Bound-For-Wholeville

(more…)

Intermission, my solo exhibition in Hobart

Author:

It’s my PN anniversary, eight years (if I don’t subtract the 4.5 years it took me to find out it was in fact PN)!

Obviously time brings on reflection which in turn invites the ‘melancholies’ (yes, I did just make up a word). But I have significant reason to bury the ‘melancholies’ this year with the celebration of my solo show at Penny Contemporary in Hobart.

During a recent four months on the East Coast of Tasmania, I was able to focus on my fine art and decided to document my ‘self’ during this very reflective time. Theo and I took time out to ask ourselves, ‘What next?’ having lost my battle for part-time compensation and realising that sustaining, even a part time sitting job, is difficult for me. It was a most valuable time for both of us.

I’m going to leave the review for Intermission to two brilliant women; Australian artist Barbie Kjar (who will open my show and who’s words appear on the invitation), and my niece Kat Moritz, who’s words appear below.

Consider this post your invitation. View all the works here. See you in Hobart!

Solace 457 x 508 mm. Dec 14. Oil on linen.

Written by Kat Moritz

Artist Soula Mantalvanos’ most recent exhibition, “Intermission” signals a bold departure from previous works into more mature, more personal and much more intimate territory. Aptly named, the exhibition is a series of self portraits, which – as a whole – stand as a bold exploration on the artist’s behalf, of her identity as an individual during this intermission of life that she has found herself in.

Painted in the solitude and anonymity of Tasmania’s still very much unspoilt east coast, well over 500 kms from the artist’s inner city home of Collingwood, the works represent an equally pared back and exposed Soula. Leaving behind over seven years of chronic pain and the familiarity of city life, Soula’s portraits are as much of an experiment on her behalf as they are very tangible markers of a new direction in her work.

“I wanted to ask [all those hard] questions and answer them without influence – put them on paper and exhibit the experience. Perhaps I’m testing my confidence? Perhaps I’m wanting to prove to myself that I’m an artist once again?”

Soula’s portraits may have been born out of a pause in her life but, paradoxically, as a body of work, they speak of journey; of transformation; of maturation. Soula makes no effort to conceal brushstrokes or to avert the gazes of her Soulas that stand before us. Instead she commands them to look us straight in the eye, sometimes with poise, at other times with hope, however, always with sincerity. There is no hiding in the wings for this artist or these works; they most definitely warrant to be positioned centre stage; humbly; quietly, however, centre stage nonetheless.

Exhibition Details

Download the invitation
Intermission Invite pdf Intermission
Self portraits by Soula Mantalvanos
Opening Saturday 7 March, 2015 at 4:30pm by Australian Artist Barbie Kjar

Exhibition continues
MARCH 6 – 25, 2015

LOCATION
187 Liverpool Street Hobart Tasmania
EMAIL & PHONE
info@pennycontemporary.com.au 03 6231 5655 pennycontemporary.com.au

Supported by
Aesop, Chronic Pain Australia, Coal Valley Vineyard and Pain Australia

Pain Train – Patient health profiling free for 3 months

Author:
Free-trial-900px

All aboard with a free 3 month trial on Pain Train

It’s true that each of our pain journeys are unique. I must have been asked the following questions at least a gazillion times during my own pain journey:

How did the chronic pain begin, what investigations have you had, did you bring any reports with you, what kind of pain treatments have you tried, how long have you had chronic pain, which Health Care Professionals (HCPs) have you seen, have you taken any pain medication…?

Pain-Train_Jan2_1000pxAnd, I will never forget struggling to answer. That is if I was able to answer due to my fatigue, extreme pain levels, or dulling effects due to pain medication.

So how can a HCP begin to gather the best possible understand of each of their patients unique pain journeys? And how do patients navigate their search for diagnosis and treatment as best they can?

Stand clear… Pain Train is approaching

(more…)

ANZCA Bulletin: Simple Accident Leads to Life of Pain

Author:
(By Ebru Yaman, ANZCA Media Manger. Read the full article)

Soula Mantalvanos Simple-accident-leads-to-life-of-pain-ANZCA-Bulletin-September-2014Research and resources are desperately needed to ensure that fewer chronic pain patients are told to “go home and live with it”.

Soula Mantalvanos was working in her graphic design studio seven years ago when the fittness ball (also known as a balance ball or exercise ball) she was sitting on in place of a chair unexpectedly burst beneath her. Ms Mantalvanos fell from a seated position onto the concrete floor, her sacropelvic region bearing the full force of the blunt fall.

Her husband Theo ran to her side. After the shock settled, she crawled to the carpeted area and her response was to laugh. The pair “had a good old laugh actually – it was such a silly accident,” she remembers. That unexpected and seemingly innocuous accident would determine the course of the rest of her life. Ms Mantalvanos expected to feel sore but better after a couple of days. But the pain continued, intensified and from that moment shaped her days, her nights, her relationships and her ability to work.

It took nearly five years of chasing answers, of tests and interventions, frustration, grief, and constant, unbearable pain to reach a diagnosis. The fall caused nerve damage in the pelvic area, very real but invisible on MRIs, examinations, X-rays and CT scans. (more…)

Committment, sacrifice and granting myself the right permissions

Author:

Soula In TassieLast week, I attended my last acupuncture appointment and for the first time in over seven years, am therapist free. Hang on, I have to just repeat that:

I am therapist free

Did I ever think this day would come? Of course I did and I believe that’s why I am here.

I have had my moments, but what I didn’t realise through all that heat and whilst pacing like a snail, was that each flare up and pain episode was actually not an indication that pain was here to stay, but rather that it was actually beginning to leave. Although just a difference of minutes initially, eventually I felt the flare ups spreading further apart. And with recognising that change and NOT increasing my capacity past a snail’s shell weight, I began to make progress. (more…)

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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 aggrevated 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.

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