UPDATE: Yesterday's phone consult with Ortho Surgeon

[Missus835]

After being referred (by the now non-existent GP) to Ortho Surgeon for low back, hips and groin issues back in January '23, I finally had a 10-15 phone consult yesterday. I had made a whole page of notes that I wanted to discuss with him, which I tried to do, but he kept alluding to a consult from 2019, which was for herniated disc. At which time he did MRI and then nothing. He said about current issues, "it's probably not something that the knife would help", "it's probably PMR related and could I not up my does of Pred?" To which I responded, the Pred does not even touch this pain and if 32 mg. is not helping, then going up would not. Perhaps it is PMR related in that muscles in that area have become weakened. He knew nothing at all about PMR/GCA. You could tell by his "lack of response". Phone call took 10 minutes. I will say he was spot on time.

I asked for shots, or infusions (he felt shots would just be a bandaid effect). I said "no more pills as my stomach is at it's max." He's like 'ya'. I also asked for CT-scan or MRI -- anything.

Long story short, he is referring me back to the unreachable star Rheumy (by way of a report or phone call), whom I cannot reach. He did think that the Nursing Desk triage routine was ridiculous. Keep in mind, these folks all work out of the same hospital. It was the brush off, which he did give me in 2019. So...no further ahead, unless he can actually reach out to "my" Rheumy. I'm due to "talk" with her on May 2nd. By then she may have heard from him. Also have labs done this Friday, the 28th, which she should have access to by then. These are done monthly regardless, with no follow-up from her. Assuming they are "ok".

As of this morning, I'm in so much pain with the hip, groin, leg, etc. Pain goes from low back to low front, into hip and down leg. Feels like it's pressing on my bladders somewhat.

So frustrated with our system. Ibuprofen 400 and Tylenol 500 together (cocktail), do alleviate the pain only somewhat today, but hard on the stomach as you can imagine. Apologies for the long rant. Just had to get it out.

[PMRpro Ambassador]

Are you actually having bladder problems or just a feeling of pressure?

[Missus835 in reply to PMRpro]

I think it is pressure, as if my whole hip/groinarea is inflamed. I have been piddling, but no more than usual. I did just finish a course of Cephalexin. Last go round it was a lot of piddling and I was thining cada equina, but when I mentioned it to him, he just brushed that off too.

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

You really shouldn’t be asking difficult questions 🤦🏻‍♀️.., not his specialised subject. Anybody would think you’re the patient with a right to know 😂🤣

[Missus835 in reply to DorsetLady]

He was more concerned that it wasn't "knife" related issue. Another jerk on my "team of jerks". I'm trying to be p.c. and not just a little salty this morning. 😅

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

Hmm ..that’s becomes very difficult at times🤔

[PMRpro Ambassador in reply to Missus835]

Yeah, fine brushing it off when you haven't actually SEEN the patient and examined them. Whatever he thinks, if you develop problems with bladder or bowel control, no messing about with him, straight to the ER. I assume you do have access to an ER?

Retention is the most common symptom but leakage and changes in sensation in that area are also significant. So is sciatica but he doesn't appear to consider it important!

aans.org/en/Patients/Neuros...

[Missus835 in reply to PMRpro]

I do have access to 4 ERs. All approx. 8 hrs.wait. The last time they thought I had a stomach bleed and left me sitting in the waiting area for 8 hrs and then another 3 after I said I was leaving. Diagnosed with a UTI bec urine was a bit cloudy (after 8 hrs of holding it) and white count up a bit which Pred can do.

[PMRpro Ambassador in reply to Missus835]

Not 8 hours for triage I trust? If you went with the sings of cauda equina I;d hope someone would recognise the risk and put you higher on the waiting list!

[Missus835 in reply to PMRpro]

No - triage about 1 hour wait and the rest in the waiting room. At 7 PMish I told them I was leaving and they convinced me to stay because they thought I might have a stomach bleed. This after waiting in the waiting room for the 8 hours and then 3 more after I decided to stay. Then waiting for awhile, after they got a room and finally did some testing. It was not for cauda equina, thank gawd, but they figured it was a UTI.

[DorsetLady PMRGCAuk volunteer]

Oh dear - or similar words🤨 - your health system in Canada seem to be creaking much like ours inUK - can’t add any advice really to what’s already been given in previous posts- but just to sympathise… 🌸

[Missus835 in reply to DorsetLady]

Thanks DL. So glad to have this forum. As I've said before, without it over the last year and half I would have been a fish out of water. So appreciate all of you.

[piglette]

I have an ortho friend who thinks fibromyalgia and PMR are the same thing.

[Missus835 in reply to piglette]

Wow. That's scary. Lol.

[piglette in reply to Missus835]

Quite normal when you start talking to consultants. They are interested in their own little say and that is it. A gynacologist friend knows nothing about steroids.

[S4ndy]

Just reading through what you are suffering and I recognised your symptoms.

After two MRI scans one in 2018 which diagnosed degenerative disc changes and bone spurs in my lumber spine and a further MRI in 2022 that reported as spinal stenosis and 2 bulging discs with nerve impingement my GP referred me to a Neurosurgeon on the NHS.

Unfortunately, the waiting list in the UK for seeing a Neurosurgeon is a very long time and I have not heard anything from the hospital except to say that I was on a waiting list.

I have private medical insurance and they agreed to fund a consultation with a Neurosurgeon. I had a consult in January and he indicated there were at least 4 areas of concern in my lumber/sacral area and sent me for nerve conduction tests to see if they could indicate which area was causing my pain/numbness/bladder issues.

So I saw a Consultant Neurophysiologist who did loads of tests. On the day he told me that there was already a degree of nerve damage and that I would most likely need surgery. Just as an aside he told me that he is one of only 104 Consultant Neurophysiologists in the Country so quite a rare breed.

So had follow up with Neurosurgeon who was of the opinion that micro surgery was my best option. So he's going to decompress 2 of the nerves in one op and then maybe do the other 2 at another time if I don't get good enough relief from the first decompression.

So my first surgery was scheduled for 28/4 but my Surgeon was taken ill at Easter and had surgery himself. So my surgery was postponed until my surgeon makes a full recovery, hopefully he should be back working in 6 weeks. All of the preassessment stuff still went ahead so I will be ready to go when he is back.

I am 61 so I think that has probably gone in my favour with getting scans on NHS but I think I would still be waiting to see a Consultant as a low priority as I am not "an emergency" even though my cauda equina is involved!

So good luck with getting the answers you need, sounds like Canada and UK are not much different when it comes to national health services.

[Missus835 in reply to S4ndy]

Thanks for your reply. We seem to be quite similar in our symptoms. My back (or hip) goes out randomly and chooses which side wants to go. At this time, it's the left and with a lot of rest it does settle down. Then I do whatever to it and the right side will go out for awhile, rest and then back to "normal" whatever that is, for a week or so. Both sides are equally painful and quite debilitating. Tried a short walk a couple of days ago and unsure if that's what got it riled up again. I try to keep moving.

Although it feels disc-like, I'm thinking more groin, hip flexors, that type of thing. The surgeon I spoke with yesterday knew zero about PMR and suggested I up my Pred dose. Had to explain to him that the Pred doesn't touch this pain. I do take Ibuprofen/Tylenol together, but it's starting to do a number on my stomach, and I believe causing esophageal spasms (which are also quite debilitating and I have endoscopy booked for June 6). Waiting on CT-scan which was referred in January and he said he would "review" it. That was very large of him. In the meantime, he's reaching out to my unreachable rheumy. Ugh.

Yes...our medical system here in Nova Scotia is overwhelmed with doctor shortages and we get referred to ER or walk-in clinics which further burdens the system. Referrals to see specialists usually take 6 months or longer, so 4 months for the surgeon was not bad.

[Amkoffee]

I have dealt with severe lower back pain and PMR at the same time and I will tell you that there is a distinct difference in the pain. I know when my pain is PMR and when it's related to my back. And I have MRI imaging showing the significant damage to my spine so I have a firm diagnosis. I'm grateful that my PMR has gone into remission. Your pain definitely sounds like a pinched nerve AKA sciatica. I'm in the US and my medical system works different than yours but maybe one of your doctors could also try you on gabapentin or pregabalin. They are both anti-seizure medications that are often used off label for nerve pain. You did not mention which level your herniated disc is in. The most common would be L4 L5 which can cause pain in the lower back. If that herniated disc is pinching off a nerve it can cause pain to run down your leg. If your herniated disc is up higher (ie L2L3) it can cause the pain to run onto the front of your thighs. I hope this helps you to understand what might be causing your problem.

[Missus835 in reply to Amkoffee]

Thanks. L5, S1 was the last place but I have had 2 disc surgeries in the past. I also know the difference in the pain of PMR and this low back, hip thing, but obviously this guy does not. So onto the next I suppose. Thanks for all the info. Much appreciated.