At last, it’s not sciatica, probably never was!

[Zebedee44]

Why wouldn’t they listen to me when I said the exercises were making it worse? Why didn’t anyone perform the simple manoeuvre to confirm that the increasing pain in my right buttock, lower leg and groin was NOT a trapped sciatic nerve?

Today, finally , the physiotherapist confirmed that as she could lift both my straight legs separately by 30/40 degrees from the bed that I was not suffering from sciatica which is what I have been telling everyone for months. The Musculoskeletal referral to physio not only ignored the X-ray showing cam impingement of the hip but failed to look any further than the original diagnosis of sciatica.

It’s no wonder that the exercises I have been doing have made the pain worse, not better. Now at last the exercises I have been given are for gluteal tendinopathy, the symptoms of which are EXACTLY what I have complained of for months.

Maybe I will finally see some improvement. But why in this year of unpleasant findings about my health ( a brain tumour, atrophic gastritis and paraproteins in my blood) have I had to fight my corner for a correct diagnosis of the pain in my buttock. I am disappointed and exhausted.

[Rugger]

All I can say is well done to that Physio for helping with the correct diagnosis and well done to you for not giving up! No wonder you are exhausted.

Wishing you well and hoping that the new exercises give you some relief - you certainly deserve it. 🌻

[PMRpro Ambassador]

You should have a chat with tangocharlie who kept telling her physio the same and was ignored until Prof Mackie got an x-ray and it showed spinal fractures. She is furious too.

I don't know what we can do - it is our bodies and our pain so why do they so often ignore what we say? And in your case - it seems to be a pretty common cause of the sort of pain you have. So why was it ignored?

Hope now they have got it right they will be able to improve the situation.

[Zebedee44 in reply to PMRpro]

Sadly I have felt ignored and overlooked throughout the entire period of my PMR. It was late 2016 when I also suffered sciatica type pain which was treated with increasing amounts of pain meds and finally fentanyl patches.

It has taken three years to have my sore throat taken seriously and the outcome has been an unwelcome revelation of a pituitary tumour. So I’m really rather PISSED OFF!

[PMRpro Ambassador in reply to Zebedee44]

Don't blame you at all - I would be too!

[Fatsiajaponica]

What a rotten and frustrating time you have had this year, you deserve a much longer rant. I couldn't find a post about what happens/happened about the pituitary tumour, don't tell me if you prefer not to but I had been wondering about you since that post a month or so ago. Anyway, sending my best wishes and a hug. Good luck with the new exercises, really hope they help.🫂

[Zebedee44 in reply to Fatsiajaponica]

Thankyou so much for caring. I was ranting and weeping at home I assure you. But also a little relieved that finally the cause of the constant pain in my right buttock and hip has been properly identified and can be cautiously improved.

I decided when I met with the Brighton Neurosurgeon three weeks ago that I would delay the inevitable surgical removal of the pituitary adenoma until after a repeat MRI and visual field test indicated changes. I need time to get my head round it all, especially having read the follow up letter listing the possible disasterous outcomes. I’m not feeling lucky this year, no surprise there.

[powerwalk]

Oh i feel your pain and anger and share it!! I've been diagnosed recently with hip/gluteal tendonopathy. The pain is very wearing but no-one has told me what to do about it. Its all mixed up in my back issue which was how it was found on a scan. I know how you feel having been ignored when asking for a scan of my lower back and being fobbed off with more injections only to end up screaming in pain in A & E and then left with severe nerve damage all down my right leg. I dont know why medics just wont listen to patients. I hope you get some relief from the pain.

[Zebedee44 in reply to powerwalk]

I feel your pain power walk. I have lived on paracetamol since January which dulls the pain and allows me to be active but I have been saying to my GP since April that I didn’t think the sciatica exercises were helping. He referred me for an X-ray and to the Musculoskeletal team where a very cocky Physiotherapist poopoo d the X-ray and referred me to physio. Three months later and again worsened by exercises finally recognised. Aaaaaaargh, SO FRUSTRATING!

[powerwalk in reply to Zebedee44]

That's one of the problems, doing exercises completely wrong for the issue. It could be the simplest stretch or whatever that's aggravating it even more. I gather it's a slow enough thing to improve from what I've been reading. Good luck to us!!

[Zebedee44 in reply to powerwalk]

Yes, I got that impression from the Physiotherapist too. Seems like it’s very easy to overstrain it ! And she is talking about a year for recovery, plus drugs!

[PMRpro Ambassador in reply to Zebedee44]

You have complained about that cocky physio haven't you? I have met a few appalling ones in the UK who think they know more than the doctors and one of the worst was a member of the MSK team. They think they are god's gift because of one extra bit of paper. I will grant you that sometimes they do - but anyone who poopoos imaging evidence needs a reality check.

[tangocharlie in reply to Zebedee44]

Our stories are so similar. Spinal fractures missed by 7 different people despite my protests and pleas for scans. I'm putting in a complaint and possibly getting the lawyers in. I can only hope 'lessons are learned' as they say whenever someone mucks up, so others don't suffer the same fate, but not holding my breath on that one. One of my mates kept complaining about things like dizzyness and vision problems and was told it was stress from spending too long on the computer working from home, turned out to be a brain tumour. There will be a support group for the gland thing you've got and it might be useful to contact them for inside information and support as it must be very worrying. All the best

[Zebedee44 in reply to tangocharlie]

What you have been through is inexcusable and should be complained about at the highest level, especially if it all happened in the same NHS Trust. But It is a lengthy and wearying process to pursue a claim for medical negligence which sadly really only involves a financial settlement and no acknowledgement of right or wrong, good or bad. In my case it was settled out of court a week before the hearing after three years of legal to-ings and fro-ings. Incompetence by the surgeon was proved, but I doubt whether he suffered personally, while I have suffered with mental health problems and a general fear of medical intervention ever since.

Hence my fear of putting myself forward for the removal of my pituitary tumour and two years ago I refused a hernia repair which I have come to regret. The follow up letter from the Neurosurgeon lists the possible problems of surgery, many of which are much discussed on the Facebook pages. It’s scary reading!

As for the wrong treatment of my poorly hip, I have made an appointment to see my GP for a way forward. Luckily my relationship with him is sound, but I’m angry and in pain which are not great combinations. You know that only too well, I’m sure.

[PMRpro Ambassador in reply to Zebedee44]

"The follow up letter from the Neurosurgeon lists the possible problems of surgery, many of which are much discussed on the Facebook pages. It’s scary reading!"

I do think such things should be presented in detail f2f - written down they do sound so awful to the non-expert patient, And medical negligence does remove our trust in later genuine medics. In context, with rates and mitigations, they are less scary.

[tangocharlie in reply to Zebedee44]

I once tried to sue when they messed up an eye operation, but after years of wrangling it came down to 'you signed the consent form so tough'. I also learned from that experience that although it would have seemed sensible to check something before the op there was no legal obligation to do so as part of the procedure and it only counts as negligence if they fail to follow a procedure ie didn't do something they were supposed to do. From provisional talking to lawyers, failure to diagnose is a different kettle of fish, So many people I know who have been let down or misdiagnosed or whatever, say they just want to focus on getting better and don't want the stress of complaining and taking legal action but this time I'm not giving up.

Re the scary letter re potential problems they have to do that to cover themselves. I mate of mine who had a brain tumour was told there was a 50:50 chance of dying on the oerating table but she survived and the surgeon said it was very very rare anyone died. She had no choice but to bite the bullet anyway. Maybe the BRAN mnemnic might helo you. What are the Benefits, Risks, Alternatives and what happens if we do Nothing?

[Zebedee44 in reply to tangocharlie]

You and I seem to have had similar experiences. My best friend just had a menangioma removed which was a full cranial procedure, terrifying. But all went well and her nurse told her she had never known it go wrong. I have confidence in the neurosurgeons at Brighton, but not impressed by the MSK triage in Hastings. My eye surgeon in Swansea was wonderful when I poked a stick in my eye. My sight is closely monitored now for reduced peripheral vision resulting from the tumour touching the nerve.

[tangocharlie in reply to Zebedee44]

That's what my mate had/has. Everything went smoothly and they got most of it out with the op but then she got an infection inside her skull and had to be opened up again and cleansed out. They apologised as it shouldn't have happened. She was so brave but as she said what else could she do? Two phrases we always quote at each other when we're down or ranting are 'Sh*t happens' and We are where we are'. Your life is in their hands but they are very clever and skilled people. She was given a contact number for a specialist nurse to talk things through with and contact any time. I've started asking doctors is 'if I was your mother/grandmother would you recommend I do this?

[Zebedee44 in reply to tangocharlie]

Eek, I’m glad I didn’t know that before my friend had her surgery.

SHiT does happen but it seems to happen to me more than most people, and I am not amused! Thank goodness for this forum and the wisdom we get from here.

[tangocharlie in reply to Zebedee44]

Yes you've had more than your share of rotten luck, let's hope something good happens next for a change, some good karma. Hang on in there. I'm having an indulgent Friday so going to do nice things and enjoy the day, a good dose of rest and relaxation and do the things that make me happy.

[Zebedee44 in reply to tangocharlie]

I have my support group meeting this afternoon so looking forward to coffee, cake and company. Ignore the other c, carbs!

But right now I am sitting in the warm sun by the river on a log, being MINDFUL!

[tangocharlie in reply to Zebedee44]

Sounds bliss, forget about your worries and your cares as the song goes

[tangocharlie in reply to Zebedee44]

I've just seen another of your posts re the support group, well done for taking over. I've never been to your part of the world but hope to sometime, Rye is on my Bucket list

[Zebedee44]

I haven’t complained about it, no. Didn’t know until my appointment yesterday that the treatment plan was wrong, however much I suspected it. I stopped doing the sciatica exercises way back after beginning to suspect they weren’t right for me, that’s when the GP made the referral. Five months down the line with the pain concentrated in one area and finally, hopefully, I will find some improvement through different exercises.

He did say I could go back and see him within six months but I haven’t really got the energy. I suffer with PTSD following medical incompetence and bad management in my thirties which has left me with a general mistrust of doctors and men (and women) in positions of power. So this year has been a nightmare. Luckily my GP, Endocrinologist and Neuro consultant have been lovely and on the whole I think East Sussex NHS has been good. I do wish we also had a Sarah Mackie here, the Rheumatologist is a complete …….. ( fill in your own word here)

[DorsetLady PMRGCAuk volunteer in reply to Zebedee44]

Complaints definitely in order when you have the strength... so sorry to hear what you have been through... and do hope now you are in the road to recovery - albeit a lot longer than it should have been.

[PMRpro Ambassador in reply to Zebedee44]

Trouble is, without it being flagged up, the error will be repeated. You can write to the physio's superiors outlining your concerns without seeing the plonker again. Dr Sam is in East Sussex and he has had a very good reputation for PMR - I wonder if a request might get a change of rheumy (providing it isn't Dr Sam you don't like of course!).

[Zebedee44 in reply to PMRpro]

Good point. I don’t know where Dr Sam works but it wasn’t him I saw at Hastings conquest Hospital. He was another plonker and very dismissive of my PMR concerns but at least did not advocate a steroid sparer as his registrar had done. Had it not been for this forum I would have gone for leflunomide at 8mg and probably had other problems.

[PMRpro Ambassador in reply to Zebedee44]

I don't like dismissive docs - THEY may not think it is a problem but when the patient does - then it is a problem and it is polite to explain nicely.

[Stills in reply to Zebedee44]

I really hope these consultants read HU it would do them the good!

[PMRpro Ambassador in reply to Stills]

The ones who do are the ones who don't need to!

[Hidden]

Sounds a right pain in the bum Zebedee sorry, couldn't resist 🤐

[Broseley]

If only these people would recognise that patients are experts in their own conditions. I am in the same situation. I was recently given exercises for my knees at physio. One of them was lying on my back, knees bent, and raising my back off the floor keeping my shoulders and chest on the floor. I told her I wouldn't do this one, as it does my back in, and always has done since my 20s. I guard my back, and haven't had any major issues for 25 years. But she insisted it would be OK. So I did them. Now my back has gone and I'm in pain. I'm sure it could have been avoided. I'm not even sure how this exercise would help my knees!

[Zebedee44 in reply to Broseley]

It’s so exasperating isn’t it? In my case it seems a pretty simple test confirmed that it is not sciatica so I have been doing the wrong exercises for months, in spite of making it clear that the pain was getting worse. Now it looks like I face a longer road to recovery. But the feeling of being ignored outweighs the pain just now. I think you know only too well where I am coming from on that.

[Stills]

just wanted to send a supportive hug to you having read your recent posts. Here it is 🫂 and one for later 🫂

[Zebedee44 in reply to Stills]

Bless you 🙏