I am terrified and have delayed TKR surgery for 5 years. Please Help.

[andiegirl]

Hi everyone. My name is Linda and I am 60 years old.

Starting in 2008, I developed open wounds on my lower legs. I am still battling them to this day. In May 2014 after a bad fall, the doctors told me that I have a "dead knee" and need a knee replacement. Due to the open wounds, not one surgeon will attempt the surgery until they close due to the high chance of infection.

I have not walked since 2014 and the thought of knee surgery terrifies me. Just thinking of it brings on a panic attack. I have purposely been very lazy with my wound care just to delay the operation. How does one overcome such deep fear? I very much want to walk again.

Has anyone else ever been this fearful to the point of staying wheelchair-bound for five years? Any advice would be so appreciated. Thank you for reading this.

 

[Jockette]

Hi, Linda, and welcome to Bonesmart!

At the moment I don’t have an answer for you but I do understand your fear.

Bonesmart has been a lifesaver for me. Many have come along beside me through this forum and given me support, comfort, and confidence.

There’s is also a wealth of information here to take us through this journey and help us make important decisions.

I hope you will find all that true for you, also.

 

[Celle]

Hello @andiegirl- and

It's normal to be scared of surgery, but what is your main concern?

Knee replacement is one of the most frequent and successful operations done nowadays and in almost every case it improves people's quality of life.

You can't go on like this, because your knee is not going to get better on its own.

I'm not sure what your doctors meant when they said you have a "dead knee". Do you understand enough to explain some more? I think they might mean a condition called osteonecrosis, which is caused by a poor blood supply to the bone.

I'm assuming that the sores on your legs are varicose/venous ulcers. In that case, you can help them heal, by spending as much time as possible elevating your legs. This article talks about how to elevate your legs properly:
Elevation: the do's and dont's

We're here to listen, and perhaps we can allay some of your fears.
I've had 3 knee replacements (one was a revision, after 11 years) and although they're no walk in the park, they are well worth doing.

 

[donnag1108]

I don't have the answer either but I am glad your here! I do think it's so important to have a surgeon you are confident in and really trust. That helped me a great deal!

 

[Josephine]

Starting in 2008, I developed open wounds on my lower legs.

Why did you get these wounds in the first place? What caused them? And what treatment are you having on the them currently?

Can you post a photo of them so I can see what and where they are?

Due to the open wounds, not one surgeon will attempt the surgery until they close due to the high chance of infection.

I should say not! But there are lots of ways to deal with them.

Has anyone else ever been this fearful to the point of staying wheelchair-bound for five years?

I suggest you first dig deep into your feelings and try to figure out WHAT you are really frightened of. That would be a start.

 

[Jayla]

Hi Andiegirl. Here is my two cents. I suspect the open wounds are painful. If so, you are dealing with that pain every day. You are also dealing with the loss of independence being wheelchair bound which to me is “painful.” I don’t know why the great fear, but I can tell you that I was also very nervous and fearful before my first replacement surgery. That was back in 2011 when I needed my right hip replaced. Because of the severe pain, I was in, I chose to go ahead with the surgery. It was painful and difficult and I would do it all over again knowing what I know now. Since then, I had my left hip replaced in 2014 and on December 18 of this year and had a bilateral knee replacement. Each of the surgeries came with their own challenges but the benefits outweighed any challenges- at least I can say that with confidence about the hips since it’s still early days with the knees. I will tell you that I would completely forget that I had any hip surgery as they worked beautifully and pain free. I expect my knees will be the same in my optimism. With my recent knee surgery I found a joint clinic that had the best most helpful and most responsive team of nurses etc. The surgeon there was amazing as she would take all the time I needed with me and explained things well and made me feel like a person and not a number. If you can find that kind of joint clinic, that might go a long way to allaying your fears. You are only 60 years young - too young in my opinion to spend it in a wheelchair for the rest of your life. Maybe think of something you like to do - say perhaps a walk in the woods listening to the birds singing- or something along those lines and focus on this future you who can enjoy that again. Think of yourself doing this special thing you like and tell yourself it’s important to move from the point you are at to the future point one step at a time. My friend at work always says eat the elephant one bite at a time. Hope this helps. Good luck.

 

[andiegirl]

Thank you everyone. Your replies were so helpful. I am so afraid of knee surgery because of the pain afterwards. I know it is silly, but the fear is real and deep inside me. As I type this, my dang eyes are tearing up.

My open wounds are the result of venous statis deficiency (poor circulation). On my left leg, there is one big wound left and it won't heal at all. I have decided to go back to my vein specialist and be proactive with my wounds. When I learned of my "dead knee" I went into total shock. Let me try to explain....I had just had surgical debridement on both my lower limbs and was in a nursing home so they could care for my wounds and change the bandages. Along, with the wound care, I was also getting PT so I could start walking. One day, while doing my PT, a doctor was walking by and he screamed at my therapists "stop her from walking, she needs a new knee". I was so mad at him for making a diagnosis without even seeing my leg (I had sweatpants on at the time). Before I could receive any further PT, I was brought to a knee specialist to get a proper diagnosis. After the xrays, the doctor said this, I am going to say it word for word..."Linda, you do need a knee replacement because you have a dead knee". I asked "how the hell can you have dead bones in a live body?". He said "it is called a dead knee because of all the arthritis and your complete loss of cartilage". I then asked "is the surgery painful?" The doctor replied "Oh yeah!! It hurts like a Bastid". When he said those words I had no use for him anymore. I just lowered my head and started to cry.

I am usually not afraid of things. For some reason, once the doctor said what he did, I became terrified. I do know that everyone has fear when it comes to surgery, and I have had many operations in my life. I wish I had a reason to explain why I am so terrified, but I do not. I believe very strongly that with your kindness and support that I will be able to get myself healthy again. I have never spoken to anyone about this and just reading your answers above made me feel better than I have felt in years!

Thank you very, very much for caring. It means more than I could ever say. I pray everyday and you will all be in my prayers. I hope you all feel great, every minute of every day. Much love to you....Linda

I will update after I see my wound specialist this week. Thank you again!

 

[donnag1108]

Just take things one at a time, that helped me. If I thought of everything at once I got overwhelmed. It is a tremendous comfort to know thanks to this community you are not alone!!

 

[Jockette]

I learned about a year ago that I have a Highly Sensitive Personality (you can google and read about it. Dr. Elaine Aron wrote a book about it) and I firmly believe that has influenced my recovery.

My PT caused me extreme pain one week post op that I believe also affected me emotionally. I now have an extreme fear and distrust of physical therapists. I’ve since learned not all therapists are like that, but my mind has hung onto this experience and my fear remains.

I’m sure if I experienced a dr that suddenly yelled for me to stop walking, and then the OS telling me how painful this recovery is, in a crude and uncaring way, that that could instill a deep fear in me.

I tell you this so you know you are not alone in your fear. I will need another surgery and I have not yet worked up the nerve to move forward with it, due to my fear.

Hugs to you as we both try to move forward, a little at a time, to get where we need to be. We may not have a concrete solution for you, but we will support you as best we can, as many people here are doing for me.

 

[Klassy]

I think anyone who had the misfortune to get that doctor would be terrified! The right doctor will give you confidence that the operation will be a success and your pain will be well controlled.

Re the first doc, I wouldn’t blame him, I can imagine that he was shouting at the therapists who didn’t see your OA because they only saw the problem they were concerned with. He may have been trying, however tactlessly, to keep them from hurting you. I say this because my stepmother got 2 new knees in her 70s only because the oncologist who was treating her for lymphoma saw the way she walked in and told her that as soon as the course of lymphoma treatment was done, she should go and get them fixed. That doctor wasn’t an OA specialist but she could tell just from the way my stepmother walked. The lymphoma sadly came back in the end, but my stepmother got a good 10 years and a second lease of life out of her new knees before then, and she, and all the family, were so grateful to that oncologist who saw the whole person and not just her specialism.

I’m just a patient, but you have come to the right place because there is a lot of expertise here. For what my lay opinion is worth, it seems to me that you are doing the right thing, focus on sorting out your veins and don’t worry about the next step for now. And even though the diagnosis of OA was a shock and presented to you in a horrible way, I hope you will be better off for knowing because now you can get your treatment adjusted accordingly.

I will be looking out for your update. Hoping so much that things start improving for you soon.

 

[donnag1108]

How I wish I could box up my surgeon and loan him out to you. His methods are in stark contrast to so many things I read about other OS's. I think even he would be surprised at how some doctors out there are treating their patients. I noticed alot of people saying when they go in they only see the PA?? This is so foreign to me. I see my doctor everytime and he takes as much time with me as I need. Hugs to you that all this will work out soon.

 

[Roy Gardiner]

the thought of knee surgery terrifies me

I am six feet tall and scared of nutten'

Yeah right.

I was a gibbering wreck before the surgery. The point was it had to be done anyway, fear or not.

I am so afraid of knee surgery because of the pain afterwards.

Well that's reasonable and rational, there is pain after knee surgery. BUT. It is controllable and bearable. We know this. There are millions of TKRs every year; there wouldn't be if it weren't controllable and bearable.

How does one overcome such deep fear? I very much want to walk again.

You use the right word, IMO. I couldn't make my fear go away, and on the day I was almost in tears. But the point is that living in that fear is worse than facing it and dealing with it. Remember the true definition of courage; fear faced with resolution. You alone can summon the resolution, and we here will help you in any way we can to acquire the mental tools to do it.

Your current situation is bad, is permanent unless you have resolution, and will only get worse. BUT if you can face it, you can get your wound fixed and the TKR done. The distress of this will be temporary and will only get better. No choice at all really is it?

 

[X2mangie]

I think, like most of us, my fear was PT and pain. So I set my appt out 4 months, thinking “ I can always cancel”. It was a baby step and helped. My surgery is 1/8 and In this time, I have come to realize that I truly need it. Just the other night I sat and made a list of all the things I WILL be able to do after my knees are done. It was a loooong list!
I am so sorry you were treated that way! At my pre op, I told my OS about my fears and he was very reassuring. He said, “ I would worry about you if you were not scared!” Not all doctors are like that yahoo you dealt with!
Anyway, baby steps. Do one small thing, then another. And keep coming back here! There is a ton of information and love and compassion here for you!