THR Severe pain after 15 months<

[Dickie 1]

After Easter I returned to the GP, unable to get in contact with the closer pain clinic. I requested another referral to a dedicated pain clinic in Melbourne, which is 1.5 hours drive away. I phoned this place to make an appointment, but was told that the GP had to send in the referral. I contacted the GP's rooms, they said that some specialists request this now. I waited another week, heard nothing. On the website of this pain clinic, it said that I could email the referral in, so sick of waiting I did. I received a email reply the next day saying that someone would phone me in the next 24-48 hours and they did. However, the earliest appoint that I can get is 12th June, 4 weeks away. I am also on their cancellation list for an earlier appointment if one become available.
So in the meantime, I'm miserable, in constant pain and just hanging about much the same. Still attending the pool x 2 a week. This pain clinic is a dedicated one, open 5 days a week, full time staff. So I am hopeful that they can assist me. Part of it is definitely nerve damage of some sort.

 

[Mojo333]

for a cancellation! So sorry for you being so miserable and I do hope they can help you get some relief!

 

[Krista]

It's terrible that you have such difficulty getting appointments to treat pain. I cannot understand the "system" there at all. When you finally get in, I hope they can figure out what's going on and give you effective treatment.

 

[Layla]

I'm sorry this drags on for you, Dickie. So disheartening.
I hope the time flies until your June appt. and that swimming brings you some relief in the interim.
Keep us in the loop. We care.
Hugs
@Dickie1

 

[Dickie 1]

Krista, our system has 2 levels, public and private. Either way you need a referral from a GP before seeing any Specialist. This referral lasts 12 months. Public is usually free, but the waiting lists can be long, private, means that you are charged well above the Medicare rebate, but quicker to be seen. I chose to go private, which means a $360 fee on the day, $130 rebate form the Medicare (Government payment). When I first rang to ask about the wait I was told it would be a about 1-2 week wait. Unfortunately, it is a 4 week wait. Nothing I can do, just suck it up and hope a cancellation comes up before then. My pain has been manageable in recent weeks, but I have been travelling along without too much extra to do. I'm in pain, but mostly I just try to block it out. it is down to 3 weeks now.
I continue on my crutch, attending the heated pool. I manage most activities of daily living okay, just slowly. Krista, I hope you see some improvement soon, as well.

 

[Krista]

I know you are hanging in there, @Dickie 1. It's too bad your system can make you have to wait so long - 3 weeks and counting for you. I am not expecting any more improvement after my THR, gluteal tendon repairs and back surgery, but I have gotten as good as I am going to get! At 71, I am glad to be as mobile as I am. I have lots of osteoarthritis and various body aches and pains, but that just comes with the territory for me and my body, and I must accept it.

 

[Dickie 1]

I thought I would update anyone that was interested. I attended the privately run pain clinic yesterday and came away with much hope.
Firstly, the Dr was very professional, no judgement, I felt listened to and heard. Prior to my appointment I had to complete a form asking about when did the pain start? They allowed 4 lines, but I wrote 3 pages, as I needed to tell the full story.
After a chat, the Dr tested me for the abnormal sensation, right down the left thigh from the most recent THR. I have a strip of very abnormal sensation, when the surgery was done, the OS and GP have said, it was just part of the surgery, but for me it keeps me awake some nights and is not returning to normal. She tested both thighs, found the revision side, was only mildly bothering me, but this strip on the left side the sensation is now hyper-sensitive and the Dr agreed with me. I also explained that although the GP has been supportive, now she is dismissive of my pain and it hasn't been well controlled in recent times.

The pain specialist also felt that there maybe Tendonitis (psoas) present, like it has been discussed in recent times on this thread. I said I have difficulty with straight leg raising, going up stairs/steps, also dressing when putting on pants or socks and again the OS was dismissive of this at my last appointment in April. So she is sending me to have an U/S of both hips to either confirm or dismiss this problem.
I have had my drugs changed. I have been prescribed Lignocaine 5% patches for the hyper-sensitive strip along my left thigh. She also changed me from Lyrica (pregabalin 125mg) to Neurontin (Gabapentin) starting at 100mg twice a day, in increasing doses. She wants me to try a new dosage level for a few days before increasing it to the next level. She has introduced a drug called Norflex which is a skeletal muscle relaxant to aid the night aching and provide a little pain relief. She will follow up in the next couple of weeks, after the U/S.
She explained that if this particular regime doesn't help, we step up to level 2 of drugs. Today, has been my first day and it doesn't seem to be helping any yet, but I have to give it time.
What I liked about this visit, was I was taken seriously and listened to. I was too exhausted to post last night, as it was an long day.

Last week, I had my elderly Mother who turns 91 in a couple of weeks and has advanced Alzheimer's Disease and resides in aged care in a single room, was hospitalised with influenza A. She has been vaccinated about a month before at an appropriate time. We thought that we were going to lose her, she was very ill. But she managed to bounce back and is back in care.

 

[Mojo333]

@Dickie 1
I'm glad you have a plan and hope that the remedies bring you some relief until you have further tests.
I hate that you had the added stress of your poor mom falling ill. So glad she had turned a corner and I will be praying for her and for you.

 

[SaraK]

Isn't it wonderful to find someone that listens and is looking for answers and solutions! It also sounds like this new doctor understands there could be multiple issues at play and doesn't dismiss this just because the symptoms don't fit into a single check the box format.

I'll be keeping my fingers crossed. Just remember some of this may take time for effect. Your doctor is also telling you this is the next line of defense, not the last!

Good luck!

 

[Layla]

Thanks for updating, Dickie.
Luckily you found someone willing to listen and not dismissive in regard to your symptoms.
I hope you're able to find some relief as you await further tests. Please stay in touch.
@Dickie 1

 

[Dickie 1]

Thank you for the replies. I have booked and U/S for this afternoon and made a booking back at the pain Clinic on the 26th June, was the earliest I could be seen. I am okay with that.
Yes, it was good to find a Specialist that listens and acts upon what I am saying. It may take a few weeks to sort out, but at least I feel I am moving forward. Thank you, again.

 

[Layla]

Best wishes for your appt on the 26th. Please let us know how it goes.
I hope you have a peaceful weekend.
@Dickie1

 

[Mojo333]

Hope you got some hopeful news to getting some kind of plan for improving this situation.
Thinking of you!

 

[Dickie 1]

Hello to everyone, I hope you are doing well. We are now in spring and glad the weather is slowly improving. I haven't posted for a while. Basically, there are no changes to me. I'm still fighting chronic pain and battle on. After 2 appointments at the pain clinic, the specialist said she would give me a phone consultation, as she thought that the MRI of my back required a steroid injection. My OS had ordered this MRI as the pain was ongoing and as it turned out I have degenerated discs on L3 & 4 and some nerve impingement. The pain specialist said she would phone me in a weeks time (which did not happen). 4 weeks went by and a call from the Receptionist out of the blue to make a phone appointment time in 2 weeks. So on the day, I had shifted my day around to accommodate this appointment, so I would be at home to take the call. Well I was never phoned.
I was totally 'cheesed off' about it, no phone call to say that it wasn't going to happen. 3 weeks past the phone consultation date, I was messaging my daughter, who pushed me to ring them. The Receptionist who I spoke to stated that I was in their system for a call on the day. She would follow this up. I said it was totally unprofessional.
A few days went by and the Receptionist phoned me, to make another consultation time in 2 weeks.
So as the weeks were rolling by, the pain I am just managing the Pain specialist phoned me. By this time, in my head I had wiped them. Apparently on the day of the original consultation, they had some emergency and my appointment was coloured as for 'Admin time', so no one checked. If I hadn't phoned, no follow up would of occurred, I was told. I received an apology, but I wasn't happy. So I am to phone them if I want further treatment.
I remain on the muscle relaxant Norflex and Panadol Osteo x 4-6 day.
Pain wise: My back pain is the worst pain, but the nerve damage from the hip surgeries have now become hypersensitive, that strip the length of my thigh on the lateral side is very sensitive. The creams I have been ordered only helped a little for a couple of weeks, the left anterior one is the worst. I feel that the hip replacement surgery has been successful to a point, but I still have limited mobility and pain when walking all the time. I am using magnesium oil twice daily. Not sure what to do next?

 

[Debru4]

I can only imagine your frustration and worry dealing with your ongoing pain. It sounds like you are doing all you can to stay on top of the medical professionals to get an appointment and be seen in person. The system you are describing is so unlike what I've experienced here in the United States that I really have no advice for you. Are you ever able to switch doctors/practices? I have found both turmeric and oral magnesium to be helpful for inflammation and muscle relaxation, but am not sure with your nerve pain that they would help. I hope you will get some support soon.

 

[Krista]

Doesn't sound good, @Dickie 1. I'm with Debru, in that your experience with that unprofessional behavior by the specialist regarding a phone consultation is the opposite of what I have known. Be persistent about getting seen, is all I can say! I wonder about that sensitive strip down the side of your thigh. Are they sure it is nerve damage? Both my sister and I have sensitive strips down the sides of both of our thighs, maybe an inch wide - we are in our early 70's and are relatively active. It is my understanding that it is lots and lots of tiny muscle/connective tissue tears that just don't heal. It is very common in older people. Nothing I have ever tried has made a difference at all. I just live with it.

Hope you can get some help with that and your back problem. Back problems are the worst for me, since they seem to affect so many of my movements - the back is involved in so much. Good luck!

 

[Dickie 1]

No it isn't good, Krista and Debru. The pain specialist said it was nerve pain. Yes, it is a strip as you describe Debru, happened straight after the THR, but has become super sensitive. Maybe little tears, all I now it is painful. The pain specialist tried 5%Lignocaine patches, then a pain topical cream made up of Lyrica and Ketamine. This helped x 2 weeks then no real help. At $110 a small jar, I haven't bothered again.
I can change Drs, but I require a referral letter from the GP and this increases my costs. I'll go back to the OS in November. We head overseas again in 1 month. I tend to believe that this is now my life. It isn't a good one. I was standing longer than normal in the kitchen tonight cooking, I feel like I am walking on 2 steel posts and I'm in a lot of pain tonight.

 

[Dickie 1]

Hello, there I haven't posted in a while. A lot has happened since September last year. We travelled to Vietnam/Cambodia in October 2019 for a 3 week trip. My hips loved the heat. The trip meant a lot of walking, but I coped, the first few days were the worst, but I even climbed Ankor Wat in Cambodia and the steps there are steep and narrow. Unfortunately, I took a tumble in Vietnam, I thought I had sprained my wrist, not me, I had fractured both wrist bones, had an x-ray in Cambodia, not displaced. When I came home, about 3 weeks later I woke up with the most toe-curling pain in my wrist, required Endone. Again waiting to get back to my OS. After an MRI and try getting one of those 3 weeks before Christmas, then trying to get a result from the OS, I had ruptured 2 ligaments and the joint capsule. The decision was to splint the wrist and allow healing. After 10 weeks of excruciating pain I ended up having surgery to repair the ligament and joint capsule and had 2 K-wires inserted to allow healing of the ligaments. I can tell you the pain of recovery was up there with a hip replacement. Then one of K wires decided it wanted to leave my wrist. I sent photos to the OS rooms (this was the start of Covid times), by the time he phoned me 8 days later, the wire had created a hole on the side of my wrist and was oozing not so nice muck. I told the OS that he was lucky he had a patient that was calm and could dress the wound (retired nurse), also saving it from infection. By the time I saw him under Covid lockdown, the wire was poking out about 1/4 inch. He removed the K wire in the rooms and the hole healed. I still have pain 24/7 but I am waiting for a call to have the remaining wire removed under anaesthestic. The pain is decreasing a lot.
My hips remain slightly less pain but still, 24/7, worse on standing, but I am walking daily and have learned to push through. The nerve strip along my thigh isn't as sensitive now. I don't think my hips will ever be pain free. It gets me down at times. The heated pool is closed due to Covid 19, but lockdown is more relaxed. No one is treating the pain, just panadol osteo. Everyone, just covers their ears regarding my hips, but they are not the ones living it. I have been told that the hips look okay and that's it. I hope everyone is remaining well?

 

[Layla]

Wow...Cambodia and Vietnam sounds very interesting. It seems you made the most of your time there. I’m sorry to hear about your wrist injury and all it entailed with the wire re-surfacing. It’s good to hear the pain is decreasing as you wait to have the remaining wire removed. It’s sad that you continue to suffer discomfort and feel it’s something you simply need to accept. I find it disturbing that people are dismissive of your pain. I hope it begins to ease and you don’t give up until you obtain an answer and resolution.
Wishing you all the best.
@Dickie 1

 

[Krista]

@Dickie 1, what a trip, what bad luck taking that fall and hurting your wrist so badly! And I am so sad that you still always have pain in your hips and no one you have consulted is able to help you. You have been failed by the medical profession. It sounds like you are coping, and I hope you can have a good life in spite of it all. You were brave taking that trip to Asia, and I'll bet you will take more interesting trips in future.