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Waitlist for surgery -Neurosurgery

Posted By couragenr47

"Waitlist for surgery -Neurosurgery"

About: Sir Charles Gairdner Hospital / Neurosurgical Unit

(as the patient),

Not even sure where to start... back in 2016 in July I had a daughter who was stillborn at 30 week... I then went to many different doctors about the pain I was experiencing in my back and each doctor had a different view.. (I was 20 years old) they would mark it down to my weight, or would say I am too young to experience back pain, or would seemingly take a guess and give me pain relief. I felt as though no one was taking me seriously.. fast forward to around 2018/2019 I finally had a doctor who sent me for a scan. I have had many scans in the last few years (CT, MRI, XRAY, Etc). I was referred to a specialist and placed on a list, I finally felt like I was being taken seriously and was taking a step in the right direction.. I got to my appointment only to find out that I was referred to the wrong specialist and I would have to go back to my GP. I was so angry and frustrated!

Fast forward to 2020, I was seen by a specialist who checked over everything with me (my reflexes, balance, my scans etc) then said they think physiotherapy will be the best option ... I finally spoke out and said I disagree, I have tried physiotherapy, pain medication, weight loss, bed rest, strengthening my muscles etc and nothing has helped with the ongoing pain. They then took a second look at my scans and requested I get a more up-to-date scan done of my back... 

After being scanned I was told that I have an L5/S1 isthmic spondylolisthesis and my imaging showed a 4mm anterolisthesis in neutral position at L5/S1 and worsens to 9mm on flexion... 

This may not sound bad to some people, but this pain I experience every day effects the daily routines so much! I can't work because if I sit down for too long my back pain causes horrific pain down my legs, feet, hips, lower back and sometimes up to my ribs. This is the same for if I am standing up for too long. I can't even walk around the shops for longer than 20 minutes before I end up limping in pain. I struggle to bath my child, get them changed, load the dishwasher, or even just pick my chld up for a hug because leaning over or lifting results in pain. Yet I still have to push through the pain to do what I need to do for myself and my child. 

I have had a cortisone injection in my back and that has not helped at all, the pain is always there. I get jolting in my back and numbness down my legs, but yet when I finally got onto the waitlist for a spinal fusion after a phone consultation with a surgeon (mid-2021, 5 years of pain) I was told my condition is classed as category 3... and I would receive my surgery within 1 year... I got a text message to say they received my referral and that was all.. I have called the patient liaison multiple times to check where my name is on the waitlist and I was told to call back in 6 months to see if my name had moved up the list..... 

I just don't understand... I feel I have had patience, I have been kind and respectful, and all I want is for someone to realise that this whole situation is just not right :( 

I am waiting to have an anterior lumbar fusion at L5/S1 with backup pedicle screw fixation and it is now coming up to the 1 year mark, and I have still not received a date for surgery, a phone call, an email... nothing.. 

For 6 years I have been dealing with this pain and I just feel like I'm not getting taken seriously for how much pain I am daily.. I even went back to my GP and he said he will send another referral... and after speaking to someone in Neurosurgery, I got told that the referral was the same one SCGH received back in 2021, but only difference is my GP sent it to a different hospital instead of SCGH...

I understand I am not the only person on the waitlist, I understand things are crazy especially with covid and staff shortages, I completely understand that. I just don't understand how an overall healthcare system has, as I feel, failed to take me seriously and has failed to help me with this pain I have been experiencing for the last 6 years.. I am not a doctor, and my back may not even look bad on scans, but I do know how bad this pain is on a daily basis... I think I am just slowly losing hope in the idea that someone is able to listen and help me :( If I had the money I would have paid to go private and had it done faster, but at the end of the day, a single parent who can't work and is studying fulltime.. I just simply cannot afford that.

In my opinion, it's really crazy to think... if I had the money.. I would have had my surgery by now. It's sad but true. It all seems to come down to money. 

Sorry for the long post, I just don't know what else do do anymore.

I appreciate the time anyone has taken to read this..

Thank you 

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Responses

Response from Jodi Graham, Executive Director, Sir Charles Gairdner Osborne Park Health Care Group nearly 2 years ago
Jodi Graham
Executive Director,
Sir Charles Gairdner Osborne Park Health Care Group

Submitted on 18/07/2022 at 3:29 PM
Published on Care Opinion at 3:31 PM

picture of Jodi Graham

Dear couragenr47,

I was so very sorry to read of the difficult and painful journey you have been through over the past 6 years. I would like to acknowledge the considerable effort you have undertaken to manage your condition and your willingness to make lifestyle changes to improve your health in an endeavour to relieve the pain you are experiencing on a daily basis.

I have been advised that your condition would likely have been categorised as non-urgent category 3 with a waiting period of 365 days. However the impact of COVID and reduction of elective surgery has meant that the waiting lists have grown significantly, which impacts on the ability of the Health Service to provide care within the allocated timeframes. The referral process is assessed on level of clinical urgency to undertake a procedure, which means the Neurosurgical Department have to prioritise the care of Category 1 and 2 patients in the first instance and currently the demand on the service is high. Whilst I know that this does not in anyway reduce the concerns you have regarding your care, I can assure you that the department regrets that they are unable to provide appointments for the large volume of Category 3 patients on the wait list.

Please know that we recognise how difficult this must be for our patients on the elective waitlist and hope you will accept my apology that we cannot provide you with assurance that your surgery will occur within the allocated timeframe. I encourage you to visit you GP for reassessment of your condition and to assist you to develop a plan to manage your ongoing physical health.

Kind regards,

Jodi Graham

Executive Director, SCGOPHCG

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Update posted by couragenr47 (the patient)

Hi Jodi,

Thank you for your response, This post I wrote has taken a while to be published and since then I have been in contact with the minister of health and the minister of my area who are investigating my case, this is because a couple weeks ago I rang the liaison office for the hospital and the women told me that I will be looking at ANOTHER 3- 4 year wait for my surgery.. That would mean 10 year in pain...

I did go back to a Gp a week ago and explained everything, I cried and poured my heart out, trying to explain to them that I would like to be reassessed and asked for my referral to be updated as my condition has gotten worse over time and after crying, they told me "there is nothing I can do for you" so I asked if I could get a referral to see a private surgeon for a consult to see if they could assess my condition.. and the dr said "no I won't be doing that". I left their office after only sitting in the chair for 5 minutes. I have again booked in to see a Dr for next week to see if they will be able to do what I am asking, I am honestly scared that if my surgery is left longer that after the surgery I will still be left with damage to my exiting l5 nerve root which is currently compressed.

I completely understand the problem with COVID, staff shortages and high volumes of elective surgeries going on throughout Australia and even the world at the moment, and I understand from Sir charles gairdner's point of view, I have only been waiting just over 1 year for surgery, but in my eyes, I have been in pain for over 6 years and have been told I need to wait another 3-4years for my surgery by your liaison officer.

I understand that it is by no means Sir charles gairdner's fault nor your fault for this situation, but overall I feel like the health system has failed me. I have tried physiotherapy numerous times, pain relief doesn't help, bed rest doesn't help (as is hard to do as a single fulltime parent to a 4 year old), I have lost 10.7kgs so far because many Drs have told me that my pain is due to my weight.. (Now weighing 65.2kgs), I have tried the cortisone injection and I have felt worse than before.

I am sorry for the long reply, I am just at a loss with what to do. Drs say they can't help, im being told my surgery won't happen for another 3-4 years and this condition in my back is getting worse and worse as time goes on... I just want to be pain free and to be able to do everyday tasks like a normal healthy person.

Response from Jodi Graham, Executive Director, Sir Charles Gairdner Osborne Park Health Care Group nearly 2 years ago
Jodi Graham
Executive Director,
Sir Charles Gairdner Osborne Park Health Care Group

Submitted on 21/07/2022 at 4:17 PM
Published on Care Opinion at 4:34 PM

picture of Jodi Graham

Dear couragenr47,

I do appreciate your understanding of the challenges that come from long waiting lists and high demands for surgeries at this time.

Again I’m sorry you are experiencing such pain and wish I could do more to influence your situation. Living with chronic pain without an end in sight is very difficult and has many flow on effects as you have outlined. For this reason, I am pleased you are seeking further assessment for your condition and a GP will be best placed to manage your health until your surgery given the current health system restraints we are experiencing.

The pandemic has been far more reaching than any of us could have imagined a few years ago and it has created some really challenging issues in the health system nation-wide, such as delayed elective surgeries as you are experiencing. While I am unfortunately unable to change your surgery category or fast track your surgery, it sounds as though you would benefit from services that specialise in the management of chronic pain. You may wish to consider reaching out to Pain Australia, a national pain advocacy organisation that may be able to direct you to a service that can support you with the management of your pain. You can find more information about Pain Australia at https://www.painaustralia.org.au/find-support or by phoning 02 6232 5588.

We empathise with you and again commend you for the active way you are approaching your health care (especially while being a single parent of a 4 year old!).

All the best,
Jodi Graham
Executive Director, SCGOPHCG

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