My journey with bad knees and fears about surgery.

[scaredinCA]

I am so terrified to have this operation but feel its necessary or end up in a wheelchair and be a burden to my daughter.

 

[forevergimpy]

Welcome to the most caring and supportive message board for those of us with crappy knees. You will meet many people here that can calm your fears and offer great advice. There is a lot of information in the library (and I suspect when a few others see this post they will provide you with some wonderful reading material).

 

[Jaycey]

Welcome to BoneSmart! Of course you are anxious. None of us wanted to go through major surgery. But you are right - life is short and there is no reasons to go through it in pain.

Have you had a chance to do any reading in our Library? Lots of information there for you. I'll give you a few threads here to get you started:
The importance of managing pain after a TKR and the pain chart
Myth busting: no pain, no gain
Swollen and stiff knee: what causes it?
Progression of activity for TKRs
How Long Does Healing Take ......
Chart representation of TKR recovery
Energy drain for TKRs
Elevating your leg to control swelling and pain
Using ice

There's tons more in the Library. Please do come back and let us know what you are most worried about. We are here to help you through this journey!

 

[1ELISEA]

I am so terrified to have this operation but feel its necessary or end up in a wheelchair and be a burden to my daughter.

Welcome!
I too was given the wheelchair talk and I'm in my 50's. Not a fun topic. Now I've bought hiking boots and am breaking them in to wear hiking this summer.

Here's your homework. And let me say, first, think of it as being selfish; you are doing something "for you".

Lists work well for me, how about trying that approach for yourself. Make a list of those things you haven't been able to do for awhile. Did you used to like to travel alot? Put traveling on your list. Do you abhor going to the store as it means hobbling and hurting with each step. Put on your list shopping for Christmas presents. Did you used to like wearing lovely summer shoes but now are afraid you will falllllllll, put that on your list.

Get the idea, you are doing this for you! And you have lots of living left to do!
Again, welcome!

 

[Roy Gardiner]

I am so terrified to have this operation...

I am a 6' tall man, er, 6' tall Big Girls Blouse who was whimpering with fear.

6th Dec 2011, BTKR, fear ended, recovery began.

Last week I played table tennis 4 days running, 2 hours each day. Skill and stamina but not knees limit how well I play.

Go for it and good luck.

 

[scaredinCA]

Jaycey, thanks for this list, I read every word and copied some of them to read later after surgery. Very informative!!

 

[Jaycey]

 

[scaredinCA]

Ever so slowly my knees acted up, but I kept on going until I finally broke down and tried the injections (whatever is in them, I'm not sure). The doc numbed my knee with lidocaine (I think) & then shot cortisone in. It was heaven, I walked out of there with no pain, so I thought I could live that way forever, just go in every three months & get a shot. About two days after receiving shot, I started getting muscle spasms so much that I had to sleep in the den in order to use a heating pad during the night. (I can't use heat of any kind in my new expensive bed) I also had severe itching on my ankles & sometimes my hands. I'm not talking normal itching, I'm talking about taking a hair brush to scratch myself. After about a year of this routine, I was reading about my doctor visits one night on the computer, & bingo, there it was, mystery solved about itching & spasms. It was the shots causing them!! Two to three days after getting the knee injection, I would end up at the urgent care or ER or primary care doctor asking what I could do about muscle spasms/cramping. The spasms were horrible to live with, in my calves, shins, buttocks, even in my hands, & ribs. So that put an end to thinking I could get by with shots for the rest of my life.
The doctor had never heard of this before (naturally) & thought it couldn't be the cortisone, it was probably caused from the lidocaine. But we still don't know for certain. How does one find out?

I have been bone on bone for two yrs, & doctor said my knees wore out on the inside, while most peoples wear out on the outside. (naturally it would be me)
I need tkr on both knees. I was scheduled for surgery last friday but they canceled me due to a gum infection. Now I'm scheduled for Feb 12th which is during the week & I'm glad of it. I read that we shouldn't have surgery on a Friday or weekend because our regular doctors won't be available over a weekend.

So here I sit with fear running through my mind on a constant basis. Why? Well for one thing, I still don't know if I'm allergic to lidocaine or what? And they don't seem the least bit concerned about it. Will I be able to have an epidural or not? Or would epidural cause muscle spasms because it might have lidocaine in it? Make sense what I'm saying? I would much rather have an epidural than be put all the way under, but I'm afraid now. What to do?

Unfortunately for the last six months I have been reading another message board that mostly had horror stories on it. So I know every possible hideous thing that could possibly happen during & after this surgery. Its been hard for me to go ahead with the surgery because of these horror stories. One man posted that he was fine until he got home, & then had to call 911 because of severe muscle cramps.. OMG thats the very thing I'm terrified of!!! He din't say what caused his problem or what they did for him. The thought of being so helpless & having cramping so bad that you have to dial 911 is just awful to me! Has anyone on the board ever heard of this happening?

I'm so glad I found this place to come to. Thanks in advance for any replies.

 

[referee54]

I am so terrified to have this operation but feel its necessary or end up in a wheelchair and be a burden to my daughter.

All of us were worried/nervous/concerned/terrified, etc. As Josephine has pointed out, it is the most performed surgery in the world, and you will not have any problems with your life afterward.

Please read those articles that have been given to you---they are full of tremendous information that can help educate you and help allay some of your fears---and we will work equally as hard to help to calm your nerves, down, too.

I had a BTKR a tad over five years ago, and I can tell you that now, I am in better shape that I was six or seven years ago, and that I cycle 120-160 miles a week in the summertime---this forum is full of people who are now enjoying their lives, not merely enduring them.

You have made a determined decision to reclaim your life, and you, too, will find out how much more you can enjoy life with a new outlook brought about by a new knee.

 

[bottomshollow]

scaredinCA, so pleased you have joined us here on the forum. It's perfectly normal to fear the unknown, and TKR is an unknown for you right now. But we will try to get you educated and informed and turn those fears to hope for a better future with a pain free working knee.

I have some reading for you! Some of them Jaycey gave you, but many were not on her list. The first set is essential reading, the second and third are useful and the fourth is just good information, but you will need it all.

Group A
The importance of managing pain after a TKR and the pain chart
Myth busting: no pain, no gain
Swollen and stiff knee: what causes it?
Progression of activity for TKRs

Group B
How Long Does Healing Take ......
Chart representation of TKR recovery
Energy drain for TKRs
Elevating your leg to control swelling and pain
Using ice
Sleep deprivation is pretty much inevitable - but what causes it?

Group C
Knee Replacement - Where Am I in Recovery?
So What Is It Going to Take? The Five “P’s” of Knee Recovery
Work “Smarter” and not “Harder”
About recovering a knee - from one who knows!
Some suggestions for home physio (PT) and activity progress
Myth busting: The "window of opportunity"

Group D
MUA (manipulation under anaesthetic) and adhesions
It's never too late to get more ROM!
It's Worth the Wait for ROM
Myth busting: on getting addicted to pain meds
Post op blues is a reality - be prepared for it

Please don't be overwhelmed by the list. The articles are not lengthy and contain information that will answer many questions and help you make your recovery much easier on your knee and on you.

I want to share the BoneSmart mantra with you. Following it to the letter brings about a much easier and more pleasant recovery:
- rest, elevate, ice and take your pain meds by the clock
- if it hurts, don't do it and don't allow anyone - especially a physiotherapist - to do it to you
- if your leg swells more or gets stiffer in the 24 hours after doing it, don't do it again
- if you won't die if it's not done, don't do it
- never stand when you can sit, never sit when you can lie down, never stay awake when you can go to sleep!

We are here to help you in any way we can: answering questions and concerns; supporting and encouraging you from pre op to post op to the end of your recovery; giving you a place to vent, whine, complain if you need to; and sharing experiences with one another----and having fun, too, along the way.

Take care and keep us posted. We care.

 

[Josephine]

The doctor had never heard of this before (naturally) & thought it couldn't be the cortisone, it was probably caused from the lidocaine. But we still don't know for certain. How does one find out?

And it could have been the combination. I have never heard of an allergic reaction to either of these drugs eihter but that doesn't mean it can't happen. I suggest you discuss it with your GP and get a referral to an allergy clinic for some tests to put your mind at rest about it. I think in your shoes I would want to know too.

As for the spinal/epidurals, bupivacaine (Marcaine) is the local anaesthetic most commonly used for these procedures although alternatives such as tetracaine, procaine, ropivacaine, levobupivicaine and cinchocaine can also be used. So you see, there is quite a range of products available. You just need to discuss this with your surgeon and your anaesthetist before the surgery.

Unfortunately for the last six months I have been reading another message board that mostly had horror stories on it

.I know that forum - there is no professional input in it whatsoever. Enter at your peril! You are much better on here where you can get a sensible and balanced view of things and there is professional input (i.e. me!).

 

[scaredinCA]

Thank you for the reply. I have discussed it with my GP and she doesn't know either. They don't doubt my word because I can prove it by showing them my medical records on the computer, its right there, but they don't know what could have caused it. As for testing, my GP said they don't test for things like that. WOW trial and error rules the day? Thats a scary thought isn't it.... I asked to talk with anaestheologist, but they said I would meet him just before my surgery. I didn't like that answer because I'll be a basket case at that time & it will be hard to discuss anything, but I guess I'm stuck with it. I don't know what I'll chose yet. My age & past smoking history has me worried about being put under general. (quit heavy smoking 27 yrs ago but am sure there must be lots of permanant damage to lungs)
Looking at the list of meds you gave me, I notice right away that they all end in "caine" so they are in the same family as lidocaine.

Ok next question then. Have you ever heard of anyone going home & getting muscle spasms so bad they had to call 911 for help? Has anyone heard of this? Makes me want to stay in the hospital where there will be instant help at hand, but they won't allow people to stay there:(

You know, I had surgery for cancer about 15 months ago, in fact I insisted on early surgery to get it out of me faster! I wasn't a coward at all, I went in & did what I was supposed to do. The bright side is that I dodged the bullet & didn't need radiation or chemo! This upcoming surgery is another matter though, I feel like a neuortic mess full of fears & questions.

 

[Josephine]

As for testing, my GP said they don't test for things like that.

Well, that can't be true! don't they have allergy specialists over there? I am sure they do though they probably come under the general term of dermatologists. I should start doing your own research and asking around some different hospitals. University hospitals might be the best bet.

I asked to talk with anaestheologist, but they said I would meet him just before my surgery. I didn't like that answer because I'll be a basket case at that time & it will be hard to discuss anything, but I guess I'm stuck with it.

That's very usual and it's really not a problem because there is nothing that will catch him unaware if he has to use something different. It's all in stock all the time. Perhaps you should get a print off of your medical records so you don't have to explain it to him.

Looking at the list of meds you gave me, I notice right away that they all end in "caine" so they are in the same family as lidocaine.

Not necessarily. They might all perform the same task but are very different medications, I can assure you.

My age & past smoking history has me worried about being put under general.

I wouldn't worry about this. I've nursed literally thousands of people who were mod to heave smokers and had GAs without a problem though it does slightly increase your risk of clots.

Makes me want to stay in the hospital where there will be instant help at hand, but they won't allow people to stay there:(

I don't quite understand this remark .....

Have you ever heard of anyone going home & getting muscle spasms so bad they had to call 911 for help?

I already said this

I have never heard of an allergic reaction to either of these drugs either but that doesn't mean it can't happen

Feel free to come and ask any questions you want. I always do my best to answer or will say straight out if I don't know.

 

[ohio gal]

This is a comment about a possible reaction to local numbing for knee injections- this pretains to me only but it might help. I developed a rash the skin sloughing after 4-5 days with the topical spray to the point I refused to have any topical sprays with any further injections. People can have reactions to anything it is all individual. I do not know if this will help but you are not alone.

 

[scaredinCA]

Thanks for replies.
I intend on leaving a message for my doctor today, but I know her answer will be the same, they don't test for things like that. However I'm going to press her to refere me to a allergy specialist or dermatologist. Don't know if she'll agree to it or not, but I'll let you know her decision later on.

The reason I said I would like to stay in the hospital longer than three days is because of worrying about having muscle cramps so bad that I might have to call 911 for help when at home. I hate the thought of that happening. In the past when I had the knee injections which caused the muscle spasms, believe me, I would jump out of bed so fast because standing up and walking around would help "a little bit" & then putting a heating pad on the cramped muscle would shorten the episode also. But after this surgery I seriously doubt I will be able to jump up out of bed any time soon. hahah You know, when things like that happen in the middle of the night, you hate to wake anyone for help, & you certainly don't want to call 911 for a muscle spasm, the ride to the hospital would cost $1,500!!! I mean everyone gets charley horses & such, its a common problem for most people.. But when its caused by allergy, it seems worse & lasts longer & moves from one area of your body to another. I would just get back to sleep & have to jump up again & again. I had them several times a night & during the day. I especially hated the ones in my hands because I couldn't hold on to anything, couldn't even brush my hair.
Our hearts are a muscle so maybe I'm fortunate to be alive.. On the other hand I've certainly never heard of a muscle cramp killing anyone

Its so hard to forget those episodes, so I am trying to prepare just in case.

As for the smoking, I quit 27 yrs ago, but I sure was a heavy duty smoker a big portion of my life.
My adopted daughter went in for back surgery two yrs ago & is now in a nursing home partly due to smoking we were told. But I don't want to put bad stories on this nice forum where people come for positive support. Her surgery had nothing to do with knee replacement surgery anyhow. Its just plays with my mind alot as do other life events. Very hard to overcome fears isn't it.

Josephine I think your idea of copying my medical records to show the anaestheologist is a good one! I hadn't thought of it, but I will certainly copy them this very day! Thank you.

 

[scaredinCA]

Sometimes when I sit down it hurts so bad in the back of my thigh, then going to back & side of my knee. Its a pain that makes me jump up and cry out (very embarrassing). It doesn't happen everytime I sit down, but at least several times a day. So I am learning to sit down very gently, very carefully.

Anyone else have this? Do you know what causes it? Is it caused from my knee or could it be caused from sciatica?

 

[scaredinCA]

I emailed my doctor and she replied that she's never heard of testing for metals, but she will ask a allergy doctor and get back to me. Keeping my fingers crossed today.

 

[referee54]

That is a big step in the right direction---people are looking out for you and working to make sure that every concern is dealt with for your sake---not only your physical health, but your psychological well-being, too!

 

[scaredinCA]

Ok, my doctor replied that she indeed asked an allergy doctor and he says allergies to metal are very rare, so its not recommended to test for them. I emailed her back and said people are also allergic to the cement used in replacements, so should I look into this further or just go ahead and live with whatever the outcome may be? I'll bet you they say nothing in response or that I should go ahead and live with whatever the outcome might be. So discouraged.

 

[scaredinCA]

so if allergy testing to metals isn't recommended, then how does a person find out they are allergic to metals like nickle? Trial and error?