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Fusion Long ride to a successful Fusion

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I hear'ya, Coachie! That "deep" pain is a bit hard to explain. I have that also, and I describe it as a severe "ache" that won't go away and makes my leg feel "heavy". Sound similar? ....I put a call into Dr. Kelly today. I spoke with Kate about the amitriptolyn (sp?) and just how much Dr. K wants me to be on for milligrams. I'm on 25mg per day now. Doesn't seem to be doing much, except for sleeping. I'm out like a light! A few people have said they think I'm "hyper"...talking quickly and jumping from subject to subject without finishing the first. I've read all the "side effects" of the drug, but no heart palpitations or heart racing. I had that with another drug I was on, so I think I'd recognize it. Has anybody else been Kate will find out for me and call me back in the morning.
I kinda over-did it yesterday. Hubby was away on a business trip, and my Mom and I completely cleaned out and re-decorated his home office. Wore my cast (I've decided to interject some humor, so I've named my cast "Peg"...get it? ha ha ha ha ha) the entire day and by 6pm my knee really was hurting, so I took "Peg" off. Yeeeeooowwwww!!!! Without that compression, DOUBLE the pain. Deep pain, stabbing pain and lots of tingling. GREAT. Gotta love RSD....then came that lovely color change. Yuck. So.....yes, I overdid it and I paid for it today by doing absolutely NOTHING but sit in the recliner with my leg up all day. That's the price I pay when I want to "be normal" and do things like everybody else. But...like "Scarlett" says..."tomorrow is another day"! :wink1:....and another day close to that "one year marker", right Coachie? Hang in there!!!!!!
 
We posted at about the same time but on our own threads! I also said, "tomorrow is another day" since today was absolutely horrible. Audrey, do you think the humidity and weird weather we've been having here lately is affecting our knees?
 
Audrey,

I love your positive upbeat attitude! Naming your cast "peg"!:hysterical:
You are going to make it no matter what circumstances are put in your way.

I am so proud of you for all that you are accomplishing with "peg"! Long may you continue to thrive!:friends::biggrin:
 
You guys are just too much! LOL:biggrin:. Too funny! After months of being down in the dumps and just bumm'in about "poor 'ole me", I just woke up one day and said "enough is enough". I can only control what I can control...the rest is out of my hands. However, I can research all day long and into the night to find answers, info. and wonderful caring people like so many of you are, here at "BoneSmart".
Great minds think alike, "Coachie". My Mom says I have the "dejavu" touch. :wink1: LOL. I have no doubt that the weather affects our knees. I can always tell when we are going to get a weather front...a day before it gets here. Actually, I even logged about a months's worth of daily activity and pain for Dr. Kelly in March. Made for interesting reading a couple of months later when I read my pain threshold on one day, and then read the next day's "weather report". Bingo! Snow coming? Knee pain. Change in barometric pressure? Again...knee pain. Who needs Steve McKay when you have a TKR! :th_heehee: I can predict the weather ahead of time!!!!
We had a "wicked" (for all of you out there that are not from Maine, the term "wicked" is used by us "Maine-ahs" quite frequently) round of thunderstorms here last night around 11pm. They weren't predicted to hit till today...well...my knee knew differently, as I had to take a hydrocodone around 6pm 'cause my knee ached soooo badly, even in the cast. Sure enough...severe storm hit. Should have known....the knee was trying to tell me something! We are due for some more "wicked" (hee hee) storms tonight, and right on cue, my leg is aching. Hopefully they won't be as bad as they were last night. I think we got lightning stikes in the backyard 3 times! :hate-shocked:
 
We got hit pretty hard by a storm up here about 3 hours ago. Trees on top of houses and many power lines are down. We haven't had any power for over 3 hours and I don't see it coming back any time soon.
 
Audrey and Coachie,

If you would like to stay out of storms, then come to TX! We haven't had any rain for over 400 days, and two weeks ago I watched a huge fire that was across the highway from my house! We were watching for evacuations, because they evacuated on the other side of the road. I was so thankful that they were able to save all of the houses and buildings! Over 6000 acres of grassland was lost though. We have have so many fires around us because of lack of rain! I wish that you could ship the rain this way!:biggrin:
 
Audrey, it is so wonderful to hear you this upbeat!!! Hon, you are doing so well!!! What a sterling attitude you have. I know your story will help others out there.....I so appreciate you taking time to post regularly about what you are feeling and experiencing. You have come so far!! ((((HUGS))))
 
Thanks Jamie! Your words really mean a lot to me. I'm really worried about "Coachie".....
I posted on Coachie's thread today about stopping the Amitriptyline, 25mg. Today was the second day I woke up feeling like a caged Pitbull! The drug makes me sleep GREAT...but I am WIRED during the day, and wanna bite somebody's head off if they look at me the wrong way!!!! GRRRRRRRRRRRRRRRR!!!!! (LOL)
So...no more "A" drug for me. I'm going back on the Lexapro, 20mg daily. If I don't, I think my husband is gonna tell me to sleep in the garage!
I'm at wits end for pain meds as well. Nothing seems to work and I've just about given up. I, like Coachie, seem to have a low tolerance for drugs. I get "itchy" or become a super B****! Makes it really hard for PCP's and Docs to prescribe something. It's all trial and error. Coachie....just because they prescribe the drug doesn't mean that you have to take it if you feel it's not working for you. It's ok to say "no"...let's try something else. Frustrating? You bet'cha!
We (all of us that are going through similar things and pain) have to manage our stress and outlook on the situation. My Mom often tells me that she doesn't know how I've survived this long, and that she certainly couldn't do what I've done and have had to put up with. Especially the waiting. Coming to grips with things and not losing control of the situation has been a big help to me. It's MY body. I'll work with my PCP/Surgeon etc. as long as we are on the same page and have a goal in mind. I have the right to say "this in unacceptable" and "no" to certain things. WE ALL DO! Chin up, everybody. Thank goodness we can all "vent" and get info. here at BoneSmart.
Coachie: whereas you have had the EMG, I'm hesitant to think that a pain specialist will be able to help. They may suggest a spinal cord stimulator. Are you ready for that? It basically silences the nerves going to parts of your body targeted by the stimulator. Do your research on it. However, I still think there is something "off" with the kneecap/knee area. Write the letter to Dr. Kelly/OA of Portland, or demand a referral to Boston Hospital. (Not Lahey Clinic) If Dr. Walsh isn't able to give you guidance and help, find a Dr. in Boston who will take your case, regardless of your age. Your year is almost up...time to put the foot to the gas pedal and get outta Bangor!
 
I heard from Dr. Kelly's office today. Based on the past several months, he is willing to do surgery after Sept. 22nd of this year. However, WHICH surgery is still in question. He thinks that maybe putting a thicker "spacer" between the components MAY help the situation. He says he'd like to try that first, and if that doesn't work, then we could fuse the knee.
Ok, all you at BoneSmart. What would you do?
Here's a little inside info.: I'm sick and tired of surgery. Had waaaay too many and I'm not crazy about giving this spacer a try. Here's why. I still have that quad muscle that is pretty much dead...only working at 30%. It's been almost 2 years, and the quad just isn't firing and able to hold me up. This bothers me A LOT! Adding a new spacer sure isn't going to make that quad work, is it? ????? He's thinking that if we put in a thicker spacer (I can't remember how many millimeters more, sorry..) it will tighten up the knee and it won't "clunk and thunk", causing pain. However, he says with a thicker spacer, the odds of having limited flexion and extension will increase. Heck...I can't bend it much past 90 now, and extension has never been below 10 since the first surgery.
That "little voice inside my head" says ixnay to the spacer...just fuse the darn thing and get it done and over with and move on.
I really need input from anyone willing to give it. Please remember, I have RSD/CRPS as well as the inactive quad.
Jo.....what do you think? Take a chance with the spacer (having the surgery this fall) and hope it works, and if it doesn't, that means I go ANOTHER winter inactive and worrying about falling....then having the fusion surgery in the spring of 2012. And then there's the issue of the inactive quad holding me up with a larger spacer. Again...little voice inside my head says "fusion". :scratch:
 
Audrey,

Even though my experience is different from yours, they did try just putting in the spacer and doing a cleanout and debridement because of MRSA. The healing time was different from a TKR, and if MRSA hadn't "smacked" me between the eyes again, I would have been up and running in a couple of weeks.

I am not in your shoes, and I certainly don't know how you feel!

I don't have MRSA anymore, but the ligaments and muscles have been ravaged by the previous bouts of MRSA, so I can be walking and the leg just "buckle." It will take a lot more strengthening but I don't mind because I am determined to make it!:biggrin:

What would I do if I were in your shoes? I don't know honestly! I can tell you that the spacer surgery is not as big of deal as a TKR, and maybe that is the answer you need. Fusion surgery is pretty drastic, but after reading your posts, I certainly understand why that is an option in your case.

Whatever you choose to do Audrey, know that I am praying for you!:prayer1:
 
In your shoes, I'd also be saying 'fusion'. Enough with the messing about. Now if he said he was 'sure' or 'almost sure' it would make a good difference, well that would be .... different! But he said 'maybe'. Maybe's wouldn't cut it with me (pardon the pun!)
 
Hi there,

I'm also in Maine. I know a guy who had complicated orthopedic issues who opted to amputate. He has an above knee amputation. It allows him to ski! You'd never know if you didn't look at the prosthetic. Just saying.
 
Hi guys! Well....not a good day for me. I spent the entire afternoon at the ER going through drug withrawal. Apparently, I went off the Lexapro took quickly (3 weeks) and I crashed last night. Uncontrollable crying and tension so high I could have put my hand through a brick wall and not cared less.
It took me 3 weeks to wean me off the Lexapro (20mg) in order to go onto the Amitryptilin (25mg daily). That's what my PCP's office said. Well..now I find out that you can be on BOTH at the same time. For Pete's sake....what's the correct 411 on this anyway! The ER told me that I was experiencing major withdrawal from the Lexapro. Extreme lows accompanied by extreme tension. One minute I was bawling, and then 10 minutes later I was ready to bite somebody's head off. Luckily, I knew this was what was going on and knew to get my butt to the ER.
So...I'm back on Lexapro (thank GOD!) starting at 5mg for a few days, then 10mg, then back to 20mg within 10 days. ER wanted me to stay on the Amitriptolyn (25mg) as they said 25mg was to take any edge off from pain, and in order to act as an anti-depressant, I would need to take 75mg or more. Not happening!!! But...I will continue to take the "A" drug until I see my PCP this week to go over the withdrawal.
Good thing I've got an understanding hubby, as I told me that I was not myself, and even touching me was going to get a SMACK!
Sonja: what is MRSA? also...Dr. Kelly told me that putting in the larger spacer was a pretty easy "operation", but he fears that using a larger spacer will really limit my flexion and extension to even less than what it is now. That scares me. Less flexion, less extension and still....instability.
I'm really feeling some pressure from my family to get the spacer and see how it goes and then if it's not helping, have the fusion in the spring. To be honest, I don't know if I can handle 2 surgeries. I know fusion is permanent, but at this stage of the game, I need somewhat of a permanent "end" to all of this, deal with what I've got, and live life the best I can. Right now...I'm a mental mess. I know I'm sounding really upbeat and positive, and for them part, when I'm "on", I really am. It's sinking to those "lows" that have got to stop. "Coachie": I've been thinking of you all day.
Maryo52: I'm guessing you live in or near Ellsworth? I'm in Eddington, and I used to live in Ellsworth for over 12 years. My kids graduated from EHS. Who knows? We may know each other!
 
Jo...can you answer this for me? .....If I have the fusion, would I be able to get around as easily as I can with "peg" (my cast!)? Or would not having that quad muscle working still make my leg unstable? I'm am scared to death to go with this larger/thicker spacer and have to go through another winter with instability and lack of flexion and extension. I don't know if I can do a third Maine winter worrying about falling and having that knee "bend" more than it is used to because of a fall or slipping on ice. Do you think a fusion would be painful afterwards, given there is a rod in my leg? What happens to all the tendons, ligaments when a knee is fused? Do they take them out? Can you give me details? THANKS!!!!!!!
 
MRSA= methycillin resistent staphylococus areus, also known as the hospital super bug. Nasty thing to get, it's pernicious and sometimes very difficult to get rid of. In situations where the patient has sizeable metal implants (meaning not usually screws and plates) they can colonise the surface of the metal and hide under the 'radar' of the implants inert character. The immune system doesn't detect their presence then.

They've found the best way to stop cross infection between patients is for the staff, patients and visitors to wash their hands frequently and thoroughly and/or apply sanitizing agents.


You will adapt, Audrey, with the help of the PTs. If you are coping with the cast on, it will take you about 30 mins or so to adapt to the straight leg!

Your muscles and ligaments will still be needed for the rest of your leg's activity. You will still need to use your hip and ankle and most all of the ligaments and muscles operate them as well as the knee. So it's unlikely they will be a problem, especially as you'll be putting extra effort into walking. See what I mean?

I reckon a fusion would be painful - it's surgery after all. The bone will have to be trimmed so they sit together neatly and likely you will have the same size incision on the knee as you had for the TKR. You might also have one high on your thigh as well because, as far as I can recall (and unless they've invented a new way of doing it!), the nail goes into the femur through the knee and pushed in until it's level with the end of the femur. The nail of course, then has to extrude through the top of the femur for which a small incision has to be made. Then the knee and tibia are positioned together and the nail hammered back down the leg until the top end is hidden in the femur. It's called a retrograde insertion and we used to use it in the old days when putting nails in fractured femurs! But, the pain would be much much less than with a TKR as you won't have the issues with flexion and that kind of rehab.

Hope that all helps.
 
It helps a LOT, Jo! I have a hard time using my ankle now, as "Peg" sits pretty low, and it's hard to bend my ankle when I have it (the cast) on. Being able to bend my ankle would be GREAT! Even without the cast on, I don't bend it much, as I've caught my toe on the floor and stumbled many a time! I think I've "trained" my ankle not to bend while I'm "walking" so that won't happen!
The procedure sounds gruesome, but I understand it. It is what it is, right? I really don't think my mental health can stand another "let's give it a try"....I'm really gonna push for the fusion.
I'm hoping tomorrow will be better...I've got my Lexapro now...starting off slowly, and they gave me some Adavan to calm my nerves when I need it until i'm back to my regular dose of Lexapro. WHAT A DAY!
 
Sounds like quite the day! I'm sorry that you had such a rough one. My nephew works at EMMC as an x-ray technician, so if you had any x-rays today, you might have had him.

When I switched from Sertraline (Zoloft) to Cymbalta, the switch was from one SSRI to another, so there was not the high risk of withdrawal- which is exactly why I don't want to switch of Cymbalta at this time. It is working for the depression, so I'm sticking with it for a bit more.

Hope things look up and you get some much needed rest.
 
Audrey,

MRSA is the staph infection that is resistant to antibiotics. I had been dealing with it repeatedly for at least 4 years until God stepped in and healed me!:biggrin:
 
If you've found something that works for you, Coachie...stick with it!!!! Experimenting with meds is no fun!!! I hope you had a better day today than the other! I'm going to be seeing a pain specialist at the same place you have been referred to on Union Street. I can't remember the guy's name, but what the heck....I'll talk to him and see what he's got to say. :skeptical:

I won't go back to the pain specialist that Dr. "M" had me see. He was "needle happy" and kept pushing for nerve blocks and a spinal cord stimulator, when I KNEW something else was wrong (misalignment found by CT scan). Again...very glad I listened to that "little voice"! :wink1:

Thanks for the info., Sonja! Note: they told me I had MRSR (mercer is how I thought it was spelled...ha ha) right before my first TKR. The staff gowned up like I had the plague! Come to find out, they misread the test results, and right before I went in for surgery, they told me that info. Guess I should have taken it as a sign that I should have run!!! Anyway...the mis-diagnosis has followed me around since then...still trying to get it off my records. Meanwhile...people panic when they see it noted in my chart! ARRRGHHHH!!!!!:tantrum2:
 
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