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View Full Version : Post op fatigue at 7 months out, or ankylosing spondylosis?



WLB1
02-04-2014, 07:22 PM
I went off OxyContin a month ago. Every thing seemed ok, nice to have my mind back. I overdid a bit last weekend, had a huge backset of debilitating fatigue. Needing those three hour naps and early bedtimes again. Pain is back. My son called yesterday. He is 37 and has had back pain since he was in his teens. He is a tall guy, 6' 6", and a recreational sports nut. He runs and plays golf and basketball. His back was really getting to him. He got an xray a while back and was told he had osteo arthritis. He got an appointment with a very reliable rheumatologist, who after ordering MRIs, diagnosed Ankylosing Spondylitis. He has the HLA-B27 gene that has been discovered to be a marker of AS. I have the same gene, and was going to a rheumy myself about 15 years ago, but showed no arthritic changes on xray then, so I stopped going. Then, within the last eight years, I developed a scoliosis severe enough to need emergency surgery. So here I am, with what I am told is osteoarthritis. I still hurt. A lot. My last xray showed scattered calcium deposits around my heart. Does this sound like a normal progression of an oa condition, or is it AS? I guess I will get an apt with another rheumy, but in the meantime, I would appreciate any and all feedback.

titaniumed
02-05-2014, 01:10 AM
Hi Wendy

I battled fatigue for 2 full years, had a few other issues and surgeries, and I was tired often. Now, that Iím recovered, I have to admit that I really miss those daily afternoon naps. I miss them bad! (smiley face) Recovery does have its benefits!

Good news on getting off meds.....I always thought that doctors had it harder when a patient goes in and relays that they are on 39 medications, have 6 different symptoms and still think the world is flat. That would make for a difficult diagnosis. Its nice going in and stating that Iím not taking any medications, it just seems like an easier thing to deal with as a doctor....

Self diagnosis is pretty much fruitless....Many times when you think you have it pinpointed, a doctor or surgeon can surprise you.

So sorry about the AS diagnosis. I worked with an AS patient many years ago but lost touch with him. He was in a world of hurt, but that was many years ago.

You donít see surgeons fusing many AS patients too often....

Ed

rohrer01
02-05-2014, 01:38 AM
I just had a friend that was diagnosed with AS. She has severe shoulder pain and severe fatigue. It's hard to say whether it's the surgery or AS for you since you carry the gene. I would go to the rheumatologist to find out if you are concerned. I'm also sorry to hear about your son. I looked up AS when my friend was diagnosed. It's not a nice disease, but then again neither is any other disease.

I hope you get it figured out. If it is AS, they can treat it with some of the same meds that they use for rheumatoid arthritis, which another friend of mine has. They put them both on the same meds. Maybe you would feel better knowing, so that if you do have AS you can get it treated.

Take Care.

susancook
02-05-2014, 12:05 PM
Wendy, I second what Ed said. I am 11 months out and still have periodic back pain, especially when I exercise and fatigue. Some might be due to depression for me, unsure if that is relevant for you.

I have decided that most adult scoliosis surgery patients are on the 2 year plan, hat is, that a full recovery is 2 years. Before that, your body is just trying to stabilize itself and figure out what happened and adapt to the changes created by surgery.

Best of luck and peace. Susan

WLB1
02-06-2014, 01:30 PM
Thanks for the replies. I so hope my fatigue is post surg. I actually did have an AS dx when I first went to the rheumy, but, like I said, I hate Docs. My primary guy told me it would be ok, that he could do as well as a rheumy. But he is the guy who blew off my scoli until it was so bad that I wound up as an emergency. So far as I know all my nerves are coming back from being compressed, except maybe my big toe which stays this strange blue color. My concern is the presence of scattered calcium deposits around my heart. AS is a systemic disease and affects organs too. I rather think a heart encased in calcium wouldn't work so well. I have a heart murmur already. My primary guy says not to worry about it, but the ICU folks at Duke told me I should get my heart checked out as soon as I was well enough.

jrnyc
02-06-2014, 02:42 PM
hi Wendy
sorry for the fatigue and all you are going thru...
but i bet you know...what you know....which is ....
sounds like it is time to go in for a complete work up...
blood work, etc....and a trip to cardiologist and any/all other
doctors who need to be involved...

denial is a powerful thing...i do not blame you one bit for not
wanting to investigate what is going on...but self diagnosis
is foolish....all kinds of things can cause fatigue....
your guesses might turn out to be right...but until you check
all of it out, they are just that...guesses...

you did not go thru the hell of this major surgery to start
taking big chances with your health and your life...did you...?!

any doctor who minimizes what is bothering his/her patients
ain't much of a doctor in my book....NO excuses.

jess...and Sparky

rohrer01
02-06-2014, 04:39 PM
Thanks for the replies. I so hope my fatigue is post surg. I actually did have an AS dx when I first went to the rheumy, but, like I said, I hate Docs. My primary guy told me it would be ok, that he could do as well as a rheumy. But he is the guy who blew off my scoli until it was so bad that I wound up as an emergency. So far as I know all my nerves are coming back from being compressed, except maybe my big toe which stays this strange blue color. My concern is the presence of scattered calcium deposits around my heart. AS is a systemic disease and affects organs too. I rather think a heart encased in calcium wouldn't work so well. I have a heart murmur already. My primary guy says not to worry about it, but the ICU folks at Duke told me I should get my heart checked out as soon as I was well enough.

I second what Jess said.
Don't blow this off, especially since you KNOW you have AS.
I don't have to tell you AS can be very serious. The longer you don't treat it, the more permanent damage is done.
You do need to get checked out. I would not trust your primary care doctor for the reasons you just stated. He's probably a good call when you have the flu or a broken finger. But telling you not to worry about AS? You already know what AS does.
Let's hope the surgery didn't set off an "episode" of increased AS activity. But, you'll never know if you don't get it checked out.
Hopefully, all is well. I wish you the best!

WLB1
02-06-2014, 09:14 PM
Thanks again. I left a phone message with my Primary Care guy who is on vacation this week. If I don't get a referral from him, I have an appt with my Duke surgeon next week and will get a referral from him. So I will be following this up. If all else fails I will go to the local urgent care and let 'em have a listen to my heart murmur. Your feedback has helped immensely!

Wendy

jrnyc
02-07-2014, 02:30 AM
Wendy PLEASE...
consider getting rid of your current primary care guy and find a new
one....any doctor who minimizes anything a patient says...
particularly about something major, like the HEART....
i do not know how to finish that sentence in a printable civilized
manner....without swearing....
PLEASE go with what DUKE recommended....
just reading a little bit about calcium deposits and the heart had
me VERY concerned....then worried for you and mad at your PCP.....

not trying to scare you, but no so called primary care doctor should
minimize any patient concerns, especially those concerning major
body organs or systems...
Duke has a good reputation....please do what they suggest....
and SOON

many sources online, like webmd or mayoclinic, agree that AS requires a team approach....
so maybe the first member of your team might be your cardiologist...if you don't have one or one you like, now's the time
to pick a good one...and build your team from there....

best of luck finding the right doctors, getting the answers, and moving forward toward better health. it may seem overwhelming,
but one step at a time and it can be done.

WLB1
02-12-2014, 02:32 PM
Thanks, you are so right. I do understand my primary guys idea to proceed with caution, but I also feel it is my job to take care of me. In our area the primary care guys are hard to come by, most are not taking new patients. I have made end runs around him before, got a dx and treatment for hypothyroid, got my scoli dx and surgery, found an awesome pt., got a pain management Doc. Now I have to get a rheumy and a cardiologist. I have a good friend who is a podiatrist who fixes me up with referrals to docs I like. He was the only Doc I had who explained my MRI to me. I really feel sorry for people who think Docs are Gods.

rohrer01
02-12-2014, 05:43 PM
Wendy,
I'm glad you are taking charge and getting the care you need. It seems like you've been "working" this PCP for a long time. It's too bad you even need one! But insurance companies like you to have a central hub. The only problem is when the hub is a duh! Then that puts YOU in the position of having to do all of the work of finding the best doctors, getting the referral papers and basically just having him sign them. Some docs are like that.

My PCP is very good and will find me a good doctor if I ask him. I pretty much take control of my own choices of specialists as you are forced to do. He's okay with that most of the time. Sometimes he just goes along with it. It was funny though, one time I was having some female troubles and recurrent miscarriages. I was using my PCP at the time because he was still delivering babies. When a problem would arise, he would tell me that he was in touch with a specialist that advised this or that. Well, I just felt it was time to move on from my PCP and go and see a specialist. I heard of this one doctor who was supposed to be really great. I made an appointment with her and we decided on a course of treatment. I went back to my PCP to get a "just in case" referral. To my surprise, I picked the same specialist he had been consulting with all along. This was actually a great thing since now they BOTH knew my case history inside and out. I didn't have to start fresh. LOL

I really like my PCP. He's a great guy. In fact, I just went in today with a horrific muscle spasm at the top of my neck that was giving me a migraine. He saw me right away and gave me a trigger point injection and a nerve block. I feel MUCH better. This is something that my PM&R doctor (Physical Medicine & Rehabilitation) specializes in. He's a great guy, too. But he's an hours drive away and in very high demand! My PCP is getting quite skilled at this type of procedure. My PM&R doctor was really impressed with my PCP's work a couple of weeks ago, as my PCP did a procedure that was very difficult and involved releasing muscles that were cutting off the blood flow to my arm! I'm so grateful to have this PCP. I can't say enough about him! I wish you lived here and could see my guy. I've honestly NEVER had a PCP this good! =)

I hope you find a really great rheumatologist, Wendy. It's hard to live when you feel sick or HURT all of the time! Let us know how things go...

Rohrer01