So you think Things aren't Happening because your pain is under control?

I have long pushed early and agressive treatment and to NOT EVER TRUST pain as gauge of when to start treatment. I have been point blank that the “head in the sand attitude” many have about starting treatment is flat out ignorant and that a late start to treatment may simply be too late.

I’m going to add an exclamation point to that statement with some recent personal experience. I have been spending many hours at the keyboard of late and started having some “shoulder pain” I was sure it was over use but when my usual methods of dealing with it Voltarin, heat, ice etc didn’t work, I sought some advice. Keep in mind I went 20 years without much more than NSAIDS (because nothing else was available so I was late to the biologic party)

I had already had one total shoulder so should have known I had problems. but the pain in my right was not that bad and certainly less than good old fashioned flare. Just annoying.

I was wrong. I just spent 2 days with reconstructive orthopods. The bottom line is They discovered from flat screens (talk about OLD technology) that I have a Mutilans deformation in my shoulder part of the ball is gone along with one of the “collar bone tips” so basically my shoulder is free floating be held by just the muscles when raised at all. Good news that I don’t have the spondylitis type PsA, bad news that It is the Mutilans type of PsA.

What COULD have been avoided can’t be any longer. I will have bone grafts to rebuild my collar bone and then a total shoulder (new ball and socket.) The nerves are jumbled some so the surgery will be done without any nerve blocks (ie pain management won’t be so good.) Because of the extent of the surgery, I will be in the hospital 2 days before the surgery for a full cardiac work up and monitoring.They expect about 4 hours in the OR and 5-7 days in the hospital for recovery and another week in the in-patient rehab center. and 2 more months of daily outpatient rehab. IF the surgery is successful I will still have life time restrictions and very limited lifting. (I will never be able to lift my GrandKids into my lap or buy a 12 of beer. (a six pack is on the outer limits of the weight limit) Even fishing is likely out of the question (unless I get skunked.)

Much of the expense will be out of pocket (about 150k, (I didn’t need my 401 K anyway) as it is “experimental surgery” The alternative is life in a sling with a belly strap holding the shoulder immobile.

I had no choice because the meds weren’t available and I started too late when they were. MANY of you DO have a choice. I’m pleading with you make a wise one. Cut the dramatics "Oh the meds are sooooo bad and soooo strong blah blah blah. Most of the resistance I see to treatment is really self pity…

1 Like

Here here :beers:

Get that treatment.

Also - goodness, I’m so sorry @tntlamb - sounds like an awful turn, and definitely full of the wtheck and a terrible reminder that just because it’s not agonizing pain doesn’t mean it isn’t doing bad things. I’ll be honest - I’m terrified of the permanent damage far more than the side effects of the medication.

I hope the surgery goes well - please let us know how you’re getting on when you can.

Good grief @tntlamb. What a terrible reminder of how aggressive this disease can be. Fight on. And I’ll visit you in the poor house once you’ve worked through your 401K. By then you’ll at least be recovered enough to wave from behind the bars!

I’m so sorry that you’re going through this, but thank you for sharing this with everyone.

This is something that needs to be shouted from the rooftops. Thank you for doing so.
Even when we’ve had PsA long enough to know a thing or two about it, even when we’ve read the text books, taken on board others’ experiences and think we’ve got the measure of it, even then there’s the tendency to stick head firmly in sand. And it doesn’t help either that PsA is such a slippery customer and can be destructive almost on the quiet.
I hope you get the best result possible from surgery. Here’s to at least a 6 pack & fishing result and grandkids will learn to scramble up into granddad’s lap.

I too am so sorry to hear this. You have been instrumental in getting me through this terrible disease. I am praying for a speedy recovery and as much as a pain free outcome as possible.

1 Like

OMG! I am so sorry, Lamb. You are so right. Prayers for a successful surgery. I can’t imagine.

Wow and my goodness. I am so sorry Lamb! You gave me the kick in the pants that I needed. There we many days where I feel like stopping the medication. But then I think of 5 years from now, or 10 years! What will my body be like then?
I wish you a successful surgery and a quick recovery.

I am so sorry for what you are going through. I hope that you will have a quick recovery! I will be thinking and praying for you.

Well this is the week. I’ll be travelling to Spokane for the big day later tonight or tomorrow.

Its been a long process but I have to tell you I have been around this stuff for years and never have I been been more impressed with a surgical team. Its amazing what can happen when they really understand the disease we have.

The studies were done and it was clear what needed done surgically. What normally would happen is the Ortho would schedule a date slap in the new shoulder and away things would go. BUT I have a team that deals with erosive - inflammatory systemic arthritis daily. They knew that this disease doesn’t effect JUST the joints

Rather than marking days off a calendar, they have kept me busy. The first thing they did was send me to my cardiologist who did a stress echo cardiogram. It showed some inflammation in the heart area, so not only did they do some costo injections they slapped me in the hospital for two days for heart monitoring (and monitoring with various common post op meds to see the effect. (muscle relaxants Anti-Inflammatorys etc.

Rather than watching soap operas I got to spend a jolting morning with a physisiatrist and his EMG machine. This team does NOT do routine nerve blocks (as most do) but was willing to evaluate the risk anyway. I don’t get a nerve block ANY (more on that later)

Then I got to spend a few hours with their Pain Psychologist who in addition to making me clearly understand the offered pain management NOT pain control. (Or in short wanted me to know I was going to hurt like hell for a few days, and they best they could do is take the edge off.

Next it was off to the PTs. They reviewed some non drug pain options, located some nerve points for post-op TENS and laid out my rehab plan. They also did a full “strength and Balance” evaluation. No surprise I’m unbalanced and have a new cane. I also have had a few lessons on using it with my left arm (the surgery is on the right)

The next day was with the infection control folks and pharmacists. I am off both my DMARDs and Biologics for 3 months. (ouch)

So now I’m home thinking I may flick a few flys at the Brown Trout. Not so. I have to go to the dentist. ALL my fillings have to be done and what they called a “deep cleaning” Okay so its been a few years, but Remember that no nerve block thing? It applied to the Dentist too. Gas sort of works and valium is fun, but the rest wasn’t. Never liked Novocaine anyway…

Back to Spokane for my routine pre-ops and a repeat of the x-rays. They are still planning a standard replacement with some grafts donated from my ample hips for reinforcement.

The subject came up because of the erosions they MAY have to do the reverse type procedure wher the attach the ball to where the socket used to be and the socket to replace the old ball. Sounds cool EXCEPT while you end up with a nicley functioning shoulder you also have a life time weight restriction of 10 pounds.

So after all of that I made a decision. Should that be necessary, they will NOT do the procedure but rather do an open old fashioned acromioplasty (the only option 30 years ago) put some grafts in to hold things in place, and while I will have pretty limited motion some measure of pain management, I will be able to lift more than a fork. My only concern is this surgeon was in nursery school the last time that surgery was routinley done.

Bottom line folks TAKE YOUR DAMN MEDS.

1 Like

Thanks for shouting at me, tntlamb and all you other mods, 2-1/2 years ago! I could be the poster child for fear of biologics! I wonder how bad off I’d be today had I not listened to you? All the “oldies” know what I’m talking about, and I’ve put my two cents worth in to some of the newbies who are struggling with taking the plunge into treating the disease with DMARDS and biologics. You have to admit–they sound scary when you listen to the TV commercials and all the possible SEs and lowered immune system, etc. I had to really delve into that to be assured that by going on a biologic I wasn’t harming myself in some other way! I took every “natural” remedy that I was told would be the cure-all, because why not? I do think the major problems/pain I have with my lower back and feet are the result of allowing PsA to damage me before I was willing to go on Enbrel. So, instead of feeling like a healthy 63-year old, my back and feet make me feel like I’m 85 at times–especially when I walk!!! So, any of you out there who are scared of the meds–I can’t speak for much else but Enbrel, but I’d say Enbrel has been a life-saver for me, because even with the bad feet and back, I KNOW I’m doing a heck of a lot better without all the other PsA symptoms!!!

1 Like

Taking my medications… and praying for you!!!

1 Like

Sorry I’m a bit late with a report: Best surgery I have have ever been through MECHICALLY Well worth going to a guy who only does shoulder replacements. Apparently my stupidity prior to the surgery (what have I got to lose helping my son with his winter firewood supply…) caused some nasty problems my biceps were detached and the entheses where the went in damaged so now have lots of screws… I am severla months ahead in developing range of motion. Its almost perfect and am now working on strength

HOWEVER they overdid the antibiotics out of an abundance of caution. That has had a rather unpleasant effect. So I have good ol; C-diff. I don’t think I have ever been so sick.I’m on my second round of a $3000.00 ABX regime. Doing some big time stuff today before a new insurance deductible year starts. Managed to avoid the hospital over the holidays but was there twice a day anyway (don’t giftwrap stool samples - they are not amused), and not before my family was told two days before Christmas this was a potentially fatal infection (1 in 5 based on titer and the fact is was type 27) The scans haven’t improved in terms of thickening so the surgeons are looking at Boat Brochures. I’m back on some food (rice and banannas) but still zonked for most of each day up a few hours.

Did I mention early and aggressive treatment could have prevented all of this.

I’m going to remember that forever. I can see some good news and bad news and I’m not sure what to make of it except you’ve been to hell and back. Just wishing you well.

Good luck, tntlamb…I hope the New Year just around the corner gets you around the corner with the C-diff. Such NASTY stuff! Wow, don’t you feel like a guinea pig sometimes? I mean, I know they meant well with the overdosing of antibiotics, but geez–if only they had known how sick that would make you!
You seem to have a very fighting spirit and a good attitude–I don’t think I’d be joking or smiling if I was as sick as you are. Anyway, keep fighting–you will get through this one more pothole in your road to better health!

Wow. Poor you Mr Lamb. My heart goes out to you. And yes you’re absolutely right, tantrums like I had is all about self pity. And you’re so right to encourage proper adherence to treatment too.

I wish you all the good luck and good wishes in the world first from your recovery from C-Diff horrible nasty stuff and then moreover from your surgery. Nothing like what you’re going through now but nearly 20 years ago I smashed my left shoulder - refused surgery thankfully actually. Spent a year doing physio and have an astonishingly good outcome. So a good mechanical surgery outcome is worth its weight in gold. Hang on to that.

Thank you Poo

You are hands-down winning the “how many illnesses can one person rack up” competition!! :trophy:
I assume it’s true that C-diff is V-diff.
Hoping for a much better outlook for you in 2017, Lamb. :sheep: