Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Brightened my docs. day,,NOT!!!!!!!!!

hi there!
just wanted to offer my support and say i'm so sorry about all the surgeries...

i had a lammenctomy with fusion at L4/L5 about 4 yrs ago and my surgeon told me that the AS might flare afterwards..that was an UNDERSTATEMENT!!! I was supposed to be there for 3-5 days and ended up staying 2 weeks. my neuro and pt's argued with the hmo that if they sent me home i'd end up back and be there for another month. my rheumy wasnt yahoo over it but knew i had to get it done. i just wish it had never happened because i flared terribly for a year trying to get back to decent shape.

hope you get the knee issues resolved. thats what started with me about 6 yrs ago. i was going down my former home's staircase..and knee gave out. i crashedd at the bottom hall door. luckily i wasnt hurt but my ortho figured this was arthritis and shipped me to a rheumy after my 5 yr old was born. i had a cortisone shot and was lucky the fluid subsided for a good year. it's back but i stay away from stairs.

best of luck!

Hi Cindy,

Sorry to hear that you are going through these nasty trials and tribulations right now, as I know you were hoping the last knee surgery would end up being just that--the LAST knee surgery. It's always good to keep a positive attitude and hold out hope heading into surgery, so you certainly can't bang yourself over the head for being hopeful when you had the TKR. Unfortunately, as most of us in KA know, surgeries of any kind are always complicated by ASin one way or the other--in one of my surgeries, we weren't able to do a gall bladder removal laproscopically because my organs had shifted so much due to my good ol' AS stoop; just like that, a hospital stay that is normally two days became 10 days.

So, you are right on the mark when you say that AS can complicate ANY surgery, meaning all KA members should think about that whenever they schedule a surgical procedure. Even if the surgery is not "related" to your AS, talk with your surgeon before the surgery (and I don't mean the morning of as they wheel you to the OR!) about your condition and any drawbacks it causes. Mention any unusual complications that you think will result from the surgery that the doctors and nurses might not think about--for example, make sure everyone involved in the surgery (inclufing the nurses on the floor you will be sent to stay) knows if you are unable to lay flat due to a curved spine, or if you need to have a pillow under yourknees at all times while sleeping. These two items happen to be particular to me, but I think that by hearing these, you can get an idea of the kinds of things that are very relevant to you that the doctors and nurses might not even think of. (In both of the examples from my past, we almost had disastrous results because the nursing staff was NOT made aware of my problem, even though we had asked that it be. In the laying flat incident, I had a nurse try pushing my shoulders to get me to "relax" and lay flat. Uh, sure. In the second case, another nurse roughly ripped out the pillow I had beneath my knees as I was transferred from my recovery room bed to my regular room bed. I was too groggy to notice until suddenly me knees were in agony. One other time, my dad almost hit a male nurse who kept roughly moving my legs around and then grabbed my arm and tried lifting it high into the air to put my arm though the sleeve hold of the hospital gown; my dad told him once to take it easy, and when he kept it up, we almost had a rumble!)

Enought of that stuff. While it was your excellent point that got me started on that, this post is about you and the hard times you are going through. Is the OS who will be fixing your knee the same one who did the original surgery> If so, do you trust him now, or do you think you should get a second surgical opinion about how best to fix your knee? I'm sure you completely grasp how impotant this fix-it operation is--if they don't get it right this time, I have to believe that it will get harder to fix it the next time (a "next time" you are praying you don't have to go through anyhow!) If you feel that your doc has definitely identified why the knee is giving out, and you also believe that it was not his mistake that caused the problem in the first place, then you probably don't need to go through the torture of getting a second opinion because you obviously have confidence in this surgeon. Just make sure he explains every part of this repair procedure to you thoroughly and in laymen's terms--have him write it down, in legible handwriging, if need be. DON'T let him cut any corners on you Cindy!

I'm glad you took the time to vent here, since I know you were one of the folks who offered much needed support when I was the one who needed to vent last week. Thus, it makes me feel good to be able to return the "listening" favor to you so soon after my own meltdown--anything you need to rant about, you know this is the right place to do it, because you'll always find our support here. Here's hoping everything goes well.

(And, I do intend to PM you still about your knee replacement, but I am holding off until at least the end of next week on my end, because that's when I meet with my own ortho surgeon to hopefully set a date for my first knee procedure. I want to hear what he has to say and see if I have any questions before I bother you with any additional questions. Shouldn't be too many Qs on my end, however, as, like you, I've been through this surgery roundabout nearly as many times as you have.)

Brad

Wow Brad!
Great words of wisdom. I have no doubt by the time you go for your TKR you will be totally ready, body, mind, and spirit.
By the way, PM me anytime about the TKR I think by now I'm probably and expert on all the ins and outs. I am glad that my Ortho. surgeon wants this second opinion as it will give a whole new, and fresh, outlook on what could possibly be going on. I'm confident 100% with my surgeon, he has helped me through alot the last 25 years, and that is half the battle but sometimes a step back and new approach helps clear the clutter. This poor knee has been opened so many times I told him to just put a zipper in it to make it easier
Thanks for your words of wisdom and contact me anytime if you need info.
Cindy

Hi Cindy, I sure hope you're feeling better today.

Hugs,

Thanks for the concern. I'm feeling a little better, just really weak and run down from this weeks mental meltdown. I am really a stronger person than this. Can't seem to pull it together and quit crying. This too shall pass.

Cindy, it hits all of us this way at times - but the descent seems that much worse when you are used to being tough and strong all the time. Have patience with yourself (and others) right now, OK? Pamper yourself, get outside if it's sunny where you are. Eat chocolate!!! I think LadyBug would back me on that totally!!! It's better than retail therapy ... although, retail therapy has its own joys.

Just take care of you.

Hugs,

Thanks,
Actually I'm off to work. That is my best therapy where I can help others with their problems and my mind off my own.
Hope your day is bright
Cindy