Confused & In Pain

[waqqy14]

Hello all

I am new to this website and come across this online, someone recommended to join as good advice is provided.

A little about me, I am a complicated, fragile, metal walking, young and frail person lol.

I have osteoporosis and OA along with a few other medical conditions which cause weakening of the joints/bones.

At the age of 17, as it had just crumbled, I had a right total hip replacement by the famous Mr McMinn (for you of those that know him) and touch wood it's going strong. However when doing surgery because of my soft, wool-like bones, my femur got cracked so I went back in and just above the knee had 2 plates and around 10 screws.

Moving on, around 3 years ago my wrist collapsed so I had to have it fused and I am therefore unable to flex this but got used to it.

Now here I am and my knee is totally destroyed. I can feel it and I know it, after a long battle of getting a referral done (in the UK, you need to battle for these things) I am seeing an orthopedic surgeon on Friday to discuss what can be done. I have had xrays and it shows very severe osteoporosis/osteoarthritis. I am fearing the worst (knee replacement) and I am going to be 29 in Feb and have heard real horror stories on knee replacements.

I can walk but all I hear is grinding of the bones, cracking, knee locking and I limp a lot. I can bend my leg and put it straight fine when resting. Painkillers even Tramadol don't touch the pain and I am really tense about my visit this Friday.

Has anyone who is around my age got any suggestions/help on anything I can do or take, to help manage the pain or to delay a knee replacement.

Thank you for reading this

 

[Pumpkin]

@waggy14 ,
Welcome to BoneSmart, glad you joined us!

I am going to tag @Josephine our Forum Nurse and Director to address your concerns.
Josephine is a bit under the weather right now, it may take a day or two for her to respond.

We have members your age and younger who have had TKR's, they have done well and for the most part have moved on from BoneSmart.

Suggest you fill out the score chart below, print it and take it to your OS visit. Both you and your OS will see just how impacted your life is by your knees.

New BoneSmart members like you are in various stages of their journey to joint replacement. Making the decision whether or not to have surgery and preparing for surgery can be easier once you have done your research and know what lies ahead. Here are some tools that can help you decide what is best for you.

If you are at the stage where you have joint pain but don't know for sure if you are ready to have surgery, these links may help:

Score Chart: How bad is my arthritic knee?
Choosing a surgeon and a prosthesis
BMI Calculator - What to do if your surgeon says you're too heavy for joint replacement surgery
Longevity of implants and revisions: How long will my new joint last?


If you are at the stage where you are planning to have surgery but are looking for information so you can be better prepared for what is to come, take a look at these links:

Recovery Aids: A comprehensive list for hospital and home
Recliner Chairs: Things you need to know if buying one for your recovery
Pre-Op Interviews: What's involved?


Regardless of where you are in the process, the website and app My Knee Guide can help you stay organized and informed. The free service keeps all the information pertaining to your surgery and recovery in one place on your smartphone. It is intended to be a personal support tool for the entire process.

And if you want to picture what your life might be like with a replaced knee, take a look at the posts and threads from other BoneSmarties provided in this link:

Stories of amazing knee recoveries

 

[kneeper]

There really isn't a whole lot to do for the pain when the knee gets that bad. Icing sometimes helps for a while.
Ice does help post surgery, though.

I had my first knee done in my 40s, so not as young as you but I was still told by all and sundry that I was young. Luckily my surgeon looked at the condition of my knee and not my age. It had been going downhill for years due to my RA.

Knowing when the knee is "ready" is a very individual thing. It's often a combination of what the xrays show and what your symptoms are. My OS told me I'd "know" when my second knee was ready. The score chart in the post above should be helpful to you.
TKR is not something to rush into as it's a major operation and full recovery takes many months, but most people have really good results. I hadn't even realized just how bad my knee was (though I was hobbling around) until I had the tkr.

I'm guessing you're getting treated in some way for the osteoporosis?

 

[Jaycey]

Welcome to BoneSmart!

I am seeing an Orthopedic surgeon on Friday to discuss what can be done.

Are you seeing McMinn for your knee?

have heard real horror stories on knee replacements.

There are "horror stories" for any procedure. But I think you will find most people see a good result and wonder why they waited so long. Find a surgeon you trust and let them do their "day job". You are far too young to limp around with a bad knee.

 

[Josephine]

I know Derek McMinn very well!

I am seeing an orthopedic surgeon on Friday to discuss what can be done.

Who did you see and what did he offer?

I am going to be 29 in Feb and have heard real horror stories on knee replacements.

NO don't listen to those stories because they are FAKE NEWS!

I check stats from a variety of sources and the upshot is that knee replacement is THE most performed and THE most successful surgical procedure in medical history. I believe that there are currently something in the order of 1 billion patients world wide who have had TKRs and that the rate of complications is extremely low, around 0.15%+/- (1,500,000 in a history of 50 years).

Painkillers even Tramadol don't touch the pain

What kneeper said it true. You can't get anything to manage the pain of arthritis. It's shame but it's true.

 

[waqqy14]

Thank you all for the comments, I really appreciate it

@Jaycey unfortunately not. He only does private work and I cancelled my insurance as they no longer cover anything linked to Arthritis. I am seeing Martin Latimer for the first time and have read some really good reviews from patients online.

@Josephine have you had treatment from him? He does the Birmingham Knee which looks really good but I don't think it's available on the NHS is it :(

Thank you all for reassuring me about comments people make on TKR. I researched online and have read a lot on the ConforMIS prosthesis used for TKR and really good stuff is being said. Has anyone had this fitted and is it something that is available on the NHS.

Lastly would it be me considering partial knee replacement if it's offered, then again I read that in most cases people need total knee done anyway, so go for that.

I see my surgeon for the first time and I hope he can offer me options. Because of severe osteoporosis, I don't think a knee arthroscopy would even be offered to me. So will be interesting to see what he says.

Thanks everyone again.

 

[Josephine]

@Josephine have you had treatment from him? He does the Birmingham Knee which looks really good but I don't think it's available on the NHS is it

No, I know him personally.

Has anyone had this fitted and is it something that is available on the NHS.

Of course they have. Hundreds and hundreds of them!

Because of severe osteoporosis, I don't think a knee arthroscopy would even be offered to me.

Did you mean to say "knee arthroscopy"? I don't see the relevance. Your osteoporosis has nothing to do with that.

Lastly would it be me considering partial knee replacement if it's offered, then again I read that in most cases people need total knee done anyway, so go for that.

And I don't understand this comment either. Can you clarify?

I am seeing Martin Latimer for the first time and have read some really good reviews from patients online.

Can you give me a couple of links to these good reviews? I checked him out on the National Joint Registry and his numbers of knee replacements are very low, only 30 odd last year. A really good knee surgeon would be batting at around 250+ knee replacements a year.

Better surgeons at Peterborough are but even those numbers are terrific.

Gerald Clifton 140 TKRs
Richard Hartley 190 TKRs​

 

[waqqy14]

@Josephine - apologies for the delayed response.

What a great person to know , personally do you know much about the Birmingham Knee Replacement ? I've seen some videos by Mr McMinn and seems really good but it's private only I guess :(

I saw Mr Latimer and he basically said my knee is totally worn out and I need to see Mr Clifton who you found. I asked about options and he told me the left side of my meniscus had totally dropped/collapsed and xrays showed no cartilage and total bone on bone, he was actually impressed I am still able to walk.

I have done research online and there are so many implants people talk about for the knee and I'm really scared that even after the procedure I will still be in pain. I am willing to go out of town and get surgery done by a really good surgeon. Is there anyone you recommend ?? Like Mr McMinn is the guy for hips, is there anyone out there for knees ?

Thanks for your help !!

 

[Celle]

I have done research online and there are so many implants people talk about for the knee and i'm really scared that even after the procedure I will still be in pain.

There really isn't a lot of difference between one make/brand of knee replacement hardware and another. It's the skill of the surgeon, not the type of implant, that has the most bearing on success.

Choose your surgeon carefully and let him/her choose what type of hardware to use.

 

[Josephine]

but it's private only I guess

He used to work in the NHS but now I see he's only in two BMI clinics. What a shame!

I have done research online and there are so many implants people talk about for the knee and I'm really scared that even after the procedure I will still be in pain.

I check stats from a variety of sources and the upshot is that knee replacement is THE most performed and THE most successful surgical procedure in medical history. I believe that there are currently something in the order of 1 billion patients world wide who have had TKRs and that the rate of complications is extremely low, around 0.15%+/- (1,500,000 in a history of 50 years). So you really don't have anything to worry about on that score.

I am willing to go out of town and get surgery done by a really good surgeon.

I'll search around and see who I can find for you.

 

[waqqy14]

@Josephine - yeah it's a real shame :( , i could just imagine his waiting lists for surgery being hectic.

Thank you, that has put me at ease knowing it's one of the most successful procedures. You know earlier I referred to the iConforMis knee implant, I looked online and have seen surgeons say this is not an NHS product and can only be done privately. Is this the case ?? I'll ask my surgeon when I finally get an appointment but i've seen really good results from this.

I appreciate you searching for me - as someone who is new to all this, can be overwhelming.

Btw I read your thread on the two recoveries and really enjoyed it you done amazing !!

 

[Josephine]

I actually haven't done a search yet!

I looked online and have seen surgeons say this is not an NHS product and can only be done privately.

Where did you see this? What sites?

In actual fact, there is very little difference in outcome between one type of device and another.

 

[waqqy14]

@Josephine - this surgeon claims it isn't available on the NHS and to get it done privately costs over 13k . Link is http://www.mrjameslewis.co.uk/custom-knee-replacement.html

 

[kneeper]

Our members have a variety of TKR models and it does not seem that one does better than another. I have different models for my 2 knees and both are good.

 

[Josephine]

Thanks for the link, Waggy, but it says nothing about it not being available on the NHS. It maybe that HE prefers to only do it privately. I've checked out the National Joint Registry and they cite the Conformis being used in NHS hospitals quite freely.

 

[waqqy14]

Hello all

I saw Mr Clifton which @Josephine mentioned in an earlier post and I am more scared, confused and nervous then ever before.

Some of you may recall me posting a while back, am 29 and need a LTKR. I saw my OS and he told me that my joint is gone, literally battered and no option but a replacement BUT I had to be aware off all the cons.

By the end of this I was so confused, he said the waiting list is 3 months, so I said put me on it and I'll think about what I want.

When I walk my knee grinds and cracks, sitting and lying down is fine. He told me that 30% of patients under 50 are not happy they had it done but he feels I would feel the benefits given condition of my knee. He then went onto say recovery takes 6 months but I need to be abroad in October. My head is so puzzled

Issues mentioned that have frightened me
- Implant lasts normally 10 years and then what happens after then is uncertain
- I am too young and if possible delay this by 10 years, if the implant fails, i would have max 2 revisions and after that I would be wheelchair bound or leg amputated :/ !!
- Infection is a high risk for me because I am on prednisolone steroids
- The number of people under 50 are unhappy and wish they never had the surgery
- A patient who had the op 5 years ago is worse off and still in pain

A few other things were mentioned and since then I am considering just living with the pain because I really can't cope with all the risks mentioned, I am way too young and want to live the very best life pain free but at the same time, don't want to have to deal with all of the things that can go wrong :(.

I have spoken to a few other people and considering a second opinion and looking for a top UK surgeon who doesn't just do private work. I came across Mr Peter James who is rated top 10 in the UK but if anyone has any suggestions please let me know.

My OS said I am the youngest person he would have operated on and I don't know, I left the meeting not feeling confident in the surgery.

If anyone has any advice, help, tips, please let me know.

Many thanks !!

 

[Jamie]

Hi, @waggy14.....I'm so sorry to hear that your meeting with this surgeon didn't go well, but I think your idea to seek out someone else is excellent. Josephine will definitely be able to help you with that. It takes a special person to understand treatment of younger patients and the surgeon you saw didn't seem to have solid experience in this area. I'm glad you're willing to travel because you will likely have better choices in one of the larger cities and hospitals in the UK.

As for your planned trip abroad at the 6-month mark, that may be a bit ambitious given your health considerations. We normally advise people to take 10-12 weeks off from work and then start back gradually. A trip like you're talking about is strenuous under any conditions and could be difficult for you if you are only a few months out of surgery. Is there any way to delay the trip? You would want to make it when you're as healthy as possible.

I do have a question for you, though. You say you are on cortisone treatments? Is this something that is long term for you? And can you say what precisely they are prescribed for?

 

[waqqy14]

Hi @Jamie

Thank you for replying. I see my Rheumatologist a week tomorrow and will ask them if they have anyone in mind who will consider having a look at me. I think the surgeon was hesitant about operating on me as most his patients have been a lot older.

The trip abroad has been planned for a long time and is a wedding, maybe i can attend and then get my surgery booked in for November time I guess. I've waited years for someone to look at my knee, so I guess waiting a little longer won't hurt.

The prednisolone treatment I am on is for my complex medical history which is Autoimmune Hepatitis / Lupus SLE. It's only 4mg but he said my infection risk is a lot higher then normal people because of this.

My main doctors who manage my care are based in London and are the best around, so hopefully they can provide me with some assistance. I think it's very hard to find a surgeon whose speciality is young patients but I am determined to find someone

 

[Josephine]

- Implant lasts normally 10 years and then what happens after then is uncertain

That's total rubbish! Knees last a lot longer than that. Many status show a longevity of 25 or more years.

- I am too young and if possible delay this by 10 years, if the implant fails, I would have max 2 revisions and after that I would be wheelchair bound or leg amputated :/ !!

Well a) there's no such thing as 'too young'. We've had members in their 20 who have had knee replacements.

- Infection is a high risk for me because I am on prednisolone steroids

Well it's a point but do remember - it's a RISK not an inevitability. And there are numerous prophylactic things that can be done to lower that risk.

- The number of people under 50 are unhappy and wish they never had the surgery

Where did he get this darling bit of statistics from? I've never heard it before!

- A patient who had the op 5 years ago is worse off and still in pain

ONE patient? I would say that within the general statistics, there are a number of people who come under that heading. But since TKR is THE most performed and THE most successful surgical procedure in medical history, this surgery has more success stories than any other surgical procedure!

My main doctors who manage my care are based in London and are the best around

Who are these people? London's a pretty big place!

 

[waqqy14]

Hi @Josephine

Thank you for the reply.

I felt hesitation when I met the surgeon and he looked at my age and was pushing towards waiting 10yrs but I kept mentioning about how the pain is effecting quality of life. Which is why I am considering a second opinion.

I agree with what you said on the stats, tbh it was so much info and i think this was based on his own figures and the people he's performed surgery on.

In relation to the London doctors, I was referring to my Rheumatologists who I am seeing in a weeks time, maybe they can recommend someone I can see.

When I done my research today, I come across Neil Bradbury who seems like the man when it comes to knees, i've contacted him too. I'd like to see a few people before going ahead with the LTKR.