It seems like a few weeks ago, I was doing fine—or was I fooling myself? (I will have to look back at my entries here to check up on myself…)
I was on 30mg of Prednisolone, going down to 10, slowly. I’ve been on 26mg for a few days now, and it seems everything is back — WEAKNESS especially- huffing and puffing like the big bad wolf, just folding laundry. A NEW TWIST - my problems with walking seem to be coming from the base of my back— it feels something like a muscle spasm, but with a tingly, most ticklish electric feel. This freezes up my back, so I cannot walk-instead hobble, and even that is exhausting. Looking through the internet, I’m seeing that this might be the sciatic nerve.
THEN, THERE IS THE VISIT TO THE NEUROSURGEON:
on 16 May - He is a highly-regarded Professor at St George’s in London; I took an instant liking to him.
He believes most of my symptoms come from the severe compression of the Spinal cord at C4 C5 and advises an operation. He was very professional doing so, but he disputes the diagnosis of Polymyalgia Rheumatica.
My anxiety is used further by my present condition - unemployed, supposedly going to interviews; If I were a headteacher, and saw me, in this condition, hobbling through the door, puffing for breath, I wouldn’t hire me to sweep the back steps, let alone teach. My savings will not last forever… Sorry to whinge ….
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billinSurbiton
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You may have PMR as well, there is no real way to say whether you do or not - but I'd say the neurosurgeon is on the nail. I have PMR and low back problems due to muscle spasm - nothing like the same as you have but they are still 2 separate issues. Relief of the back problem results in me requiring far less pred for the PMR.
You need that spinal compression sorted - because I don't imagine for a moment it will improve. How soon can the man do it?
Don't apologise for whinging - you have every justification in doing so. I don't know how benefits work - but if you are unfit for work there must be something besides JSA?
Thanks for your reply -- Definitely feeling un-warrior like today, and–let me admit–frightened. The surgeon said he would try for June or July, which sounds quick to me, given NHS waiting times. The lower back thing is very weird to me! If I try to stand straight up, I get a weird sensation of pain/tickly spasm thingee/ and a bout of TIREDNESS. Odd.
Of course you are frightened - anyone would be. It's the routine stuff that takes a while - if it needs to be done they still will try their best. Doesn't mean it will be done the first date they offer - but it puts you even higher up the list if they have to cancel.
It's the old joke isn't it - if something has an adverse effect, DON'T DO it! It is probably your body telling you to help it as much as you can.
Oh dear billinSurbiton! I do sympathise, it does sound frightening and you have the pressure of trying to get work - torture.
Is doesn’t seem to be behaving much like PMR though. The Neurologist does seem to make some sense - although surgeons do tend to see the world in terms of operations. How have you left it with the professor? You can’t go on in this kind of pain and disability. Whinge away!
On another forum we used to get into trouble if we had a laugh! There was always some misery who'd complain...
On the other hand - on the original PMRGCAUK northeast forum we had a section that was just for laughs. And another for photos of all sorts. PMR and GCA affect all of life - so you need some light relief now and again.
But in the DWP drive to get more back into employment its been renamed fit note
I think with long term health conditions if we couldn't have a laugh we would all feel much worse .
My Son has me in stiches with stupid things we both say and do
Like putting dinner in oven and not putting oven on
Putting TV on and not switching to large screen
He meet me after work to go to the cinema and walked right past me sat on the next bench to mine.
When I manged to get his attention he said Mum what have you been up to, you look glowing. I thought that's nice then he announced to all if I didn't know better I would have thought you where pregnant.
He looked so stunned but when I got home I realised what he meant I had caught the sun on my face .
You are not whining; you are questioning in your own mind this neurosurgeon's opinion and judgment; that is a good thing. While the surgeon might be correct about nerve compression at C3-4, you can still have PMR and compression of the vertebrae at the same time; one doesn't exclude the other. Playing devil's advocate:
No matter how fabulous this surgeon is, and that you liked him, anyone contemplating spinal /neck surgery , or any spinal surgery needs a second opinion. That you were feeling fine just a few weeks ago, and now not, does tend to support a PMR or vasculitic disease. These diseases are demonic, twisting , turning, changing , adding a new distress, and highly unpredictable from day to day. They tease with a few good days, and then knock you down again.
If something doesn't feel right, chances are they are not right. But first you need to calm yourself with whatever it is that comforts you ; treat your panic first. I don't know if you have a tranquilizer available to you, If yes, take it; eat a favorite food, curl up with a good book or movie or a little wine or a cocktail . Watch a comedy. Stress and fear are the last things you need now. Calming yourself and doing something distracting from your problems should be your first priority for a little while.
And after you are calmer, do seek a 2nd opinion, ask this surgeon to have a few of his patients contact you also. Some doctors are very good in promoting themselves and use their charm to do it. He may be the best there is, but neck or spinal surgery is always a big risk and dangerous. Then there is scar tissue which can plague you later even If the operation is a "success."
If he is defensive about a 2nd opinion, or is adverse to asking some patients of his contact you, run away.
As a retired nurse-attorney, I have seen too many horror stories with spinal surgery, (and I was defending the surgeons ) who I knew had not done the right thing, resulting in paralysis, incontinence, and worse pain. The cranial nerves in the neck control so many functions. Ask how many times he has done the procedure he intends for you. At your next appt., bring someone with you; 4 ears are better than 2.
Make a list of questions and ask him about risks involved. I imagine with a PMR diagnosis , you are on immunosuppressive medication( increasing your risk of infection). I would not rush in. Make him justify objectively. Ask him to explain and show you your scans, and what exactly he intends to do; ask how many times he has done this surgery, and will he be available to you during recovery day and night if you need him.
Injuries to C3 and C4 , including surgical, are very severe because those nerves control your nervous system from the shoulders down. You can check yourself on the internet, but 1 mistep during the surgery at C3-C4 will damage your range of motion, damage diaphragm function requiring a ventilator, cause paralysis in arms, hands, torso and legs; problems with bladder and bowel control. Ask him about those risks.
If it were me, I would not take such risks. He is human and not infallible; he is not God. Ask yourself if what you are suffering now is worth the risk of damage mentioned above. If you felt fine, not long ago, you could feel fine again. I am always suspicious of a doctor who is dismissive of another doctor's diagnosis.
I would try physical therapy, acupuncture, other more Asian exercises before resorting to a highly risky surgery. In the US anyway, there are less invasive surgeries such as lazer; do consult with another neurosurgeon before undertaking a C3C4 operation. Would the benefits outweigh the risks.??
Someone who is in a life/death situation may not have a choice, but you do.
Have a drink and forget about it for a few days. Good luck.
I agree totally bluemooon70. If you are in shape to wait and get a second opinion and get a good neurosurgeon, it's best. I was lucky that most of my post-op issues after spinal surgery were from 8mths of totally trapped nerves. I would have allowed them to amputate my left leg by then. Once I finally got MRI and saw neurosurgeon it was a Tuesday and Thursday AM I was in surgery. I was only promised relief of the unbearable sciatic...that the pain in the nerves would remain so they made no false promises and I stuck to rehab totally for 3mths then I had to return to work and buggered it up a bit.
My neck is a different matter. No one is going near that until it's absolutely necessary and after at least 2 opinions and research on best surgeon. As it's the NHS I suspect I will be waiting a long time.
You have time to do some research and ask around. Try and stay mobile if you can.
The more I hear about medical people disagreeing with each other the more frustrated I get. Bottom line, nobody knows anything for sure. We are such complex intricately made beings that to try and limit people's individual experiences by calling it a name or not is somewhat naive. I don't for a moment believe pmr exists in the body alone with no other inflammation, bugs and injuries, it's all a big pot of soup and one of the ingredients could be pmr. Your flavour is pmr with spine damage like mine, I've just added nerve damage pepper to liven things up. If you are comfortable with the fit of your diagnosis and managing your improving health path, does it actually matter what it's called? If you can identify with pmr, your GP is confident then listen to your instincts.
PS I'm a newbie with a fab gp that I trust and we are working well together as he treats me like we are a team. Whatever we are doing is working for whatever reason, my neuro and ortho surgeons have backed my GP as everything makes sense. And it's not whinging, it's healthy venting🌬️
I had the same operation as suggested for you at st George's hospital and it healed brilliantly but just when I was beginning to walk properly 3 months later, I got I'll with all symptoms of polymyalgia rheumatic including high inflammation blood results which is much worse than my previous back problems and then developed Giant Cell to make matters worse anyway that was May 2017, it's been suggested that my back operation could have triggered it all off! But I'm so glad I had my back operation so don't worry about that you will be fine and hopefully he's correct and you have none of the rest, I wish you all the very best good luck.
I did not have the neck operation mine was lower back C5 I have been informed I have osteoporosis in my spine I've also lost and inch in height! Dam! But that awful pain from my back has gone.
I am so sorry you are feeling this way and I know first hand how miserable back issues can be. My low back is one of the areas pmr has affected me. Right in the small of my back and in the sacroiliac area. Just diagnosed with osteoporosis (thank you prednisone) and have one stress fracture already. Now lots of sciatica and having a steroid epidural next week. It should help a lot. Sending you lots of well wishes for a good outcome with your surgery. Hope it is sooner than later. Waiting is torture.
So sorry to hear that you are struggling. Do everything you can to pamper yourself. Do what you enjoy. Take a walk, pet a puppy, watch a funny show or video, take deep breaths, take a bath. Do eat healthy and try to exercise as much as possible. Be very careful with the prednisone. Taper very slowly, 1mg per week or 2 weeks, slower if you are feeling bad. Get more opinions on surgery, that is such a big step. Good luck and take care. Be good, Penny
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Can you have too much cortisol?
Broken bed!
Should I try the 5 mg of prednisone increase for few days
Flat after Rheumy today
