Hi all, just wondering if there is anyone out there who has been told they can't ever have surgery? I have because I have had 2 x DVT'S in the last 2 years.
I am totally devastated as I am only 51 and was told 15 years ago I would need surgery but needed to be in my fifties before it could be considered. I have deteriorated massively since then and now can't even walk to the corner shop, ride an exercise bike or basic personal tasks. I have put up with this thinking eventually I would get a 'second life' but now to find out there's no chance has been a huge shock.
How do you cope with this? I am trying not to dwell on it but am feeling so bitter atm. I have followed all advice as to not strain my knees etc and given up so much for the 'future' all for nothing. I may as well have lived it up while I could.
The sucker punch was being told that I was still too young anyway so not to be too upset! No disrespect to those older than me, but I would have gladly given up mobility later for a few years of freedom now!
Sorry to be so glum but I have seen such informative replies on here I am hoping othes in the same boat as me will make me buck my ideas up!
Thank you.
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Faiskaje
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Did you have to halt the Warfarin before your hip op? I think in Faiskaje’s case she has had two DVTs so they are worried about stopping the blood thinners.
Hello Faiskaje, it is not good news I agree. But it may be because you have had two DVT's in such a short time , when I had my knee done I was given an injection to stop blood clotting always have done due to other health issues. Maybe if you have a clot free period maybe a different surgeon may consider doing ops on you but not right now. There are other options for surgery without full aneasethic, they use spinal ones these days. its rather like going to the dentist , you come round quite quick and don't feel groggy ect. But be assured you don't feel a thing while they do the process. For now though try not to be too upset , there are lots of new treatments for pain so maybe thats the best route for you at present. Would be interesting to know what pain relief you have tried up to now. Members may know of others that you have not been offered as yet. I have just been given PRP which you normally have to pay for privately . It has improved my pain but not mobility.
Thats right I just had one in the tendon of my leg as a trial. As the knee op left me with pain below the knee, only available in certain cases. But I would consider paying if I could afford it.
I was told by my doctor who does the PRP injections that the knee should not be too far gone and it will put off knee surgery by at least eight years. Are you saying they were going to do it on an operated knee? I would not have thought that would work, but I may be wrong or have I misunderstoid. The NHS only started PRP injections for knees about a year or so ago I understand.
Hi piglette, you are right it is not normally done after operation on the knee, as I understand it PRP is not proven to work in the knee as yet. My injection was put in the tendon that runs across the bone in the bottom of the leg apparently this tendon can get stretched during operation as its attached to the knee. Of course I don't mind being a guinea pig for NHS or research projects. If it works its a bonus.
Perhaps I should look out for research projects and save the costs!! I have had three injections over the last four years. In fact my knee is better know than it was four years ago. NICE do seem quite positive about PRP and started to allow it for the knee in 2019, but they are recommending more research.
Yes research projects that are backed are often those that might return a profit in future, mainly in the private sector including work for the NHS to make people well. 😊
Thanks for such positivity. Currently I take Paracetamol and a couple of codeine on a night time if Ineed to. Trying to get the codeine on repeat but Dr very reluctant so I have to ration it and only take when desperate. I was once given tramadol for just a few days by a lovely Dr who I have never heard of again unfortunately, she was very understanding and gave me a short dose for a few days relief as I was having such a bad flare up. It didn't entirely get rid of the pain but made it bearable so I could sleep and move around. I do buy Voltarol from time to time but am unconvinced, but when bad I try anything! I can't take NSAIDs unfortunately. I do use hot water bottles sometimes but can't stand cold packs. I have also previously bought a tens machine but struggled to get it to work consistently (wouldn't stay attached to me)
I will pick myself up and hope for a change in the future, it was all such a shock. I was in and out of the room in minutes and told not an option for me ever and to get a mobility scooter if I want any quality of life.
I will also look into PRP, I have had one injection at the GP surgery but was told it probably wouldn't do anything and it didn't, but think this was cortisone (?)
It probably was a cortisone injection or the like, you had at the GPS its not usual to have injections at GPs for arthritic pain but it is becoming more common in the larger practices now. I take tramadol it is actually safer than codiene but only for mild pain. My father took codiene for bad pain. I prefer warm packs, have you tried patches they last 24 hours and can be bought on line? or those shops that sell all sorts of chemist things. At the herbal shop you can get a cream with capsicum in it works great but does not last long, some hospitals prescribe it too but be careful you wash hands well as it will burn if you get in your eyes. Cold packs are mainly for swollen joints and should only be used for short times . Know how you feel I was advised to get a wheelchair but who would push it , can't freewheel due to hand arthritis. Some of the small scooters are quite light but bumpy on uneven surfaces. You may have to change your life style but do proceed carefully in what treatment is best for you. As you go forward new things become available to help pain as chronic pain is wearing. So never give up on searching for the best, and remeber medics are not always well informed and can get things wrong. We are all human. Best wishes come back if you have more questions
I don't know how to say this tactfully but since the last couple of years, NHS, doctors hospitals etc appear to have lost it. They have said things to me that turned out to be downright lies and other times totally illogical. I have put it down to them being stressed, but it could have killed me so am not impressed! Am not a medical professional, but know my body and not totally stupid. They told me I had water in my lungs which was an absolutely lie based on someone elses xray. Told me I coukd not be treated for a heart attack unless I took the PCR test! Seriously? its gone down the drain sorry to say.
Based on whats going on, I would suggest a second option and that too privately. It took me 2 months to search for a cardiologist who talks sense and am planning a private consultation soon. My questions are heart related, so after watching 50+ videos, I feel he is one I can trust. Sanjay Gupta York. yorkcardiology.co.uk/No idea what your surgery is about or if you need a specialist, but please research thoroughly and then do an online consultation outside of NHS if available.
Sorry for sounding so negative, but had too many bad experience with doctors and meds.
Am doing my own treatments with very little medication and have recovered in 2 months by the Grace of God. Question, research and double check everything!
Rubbish I've been on Riveroxaban for over 6 years and had 2 surgeries. And I'm older than you by a fair way. They just stop it the day before or with foot surgery 2 days and you self inject Fragamin. BTW I don't know what your on be it Riveroxaban and Apixaban which are not thinners as if we had thin blood we'd die but do something to Prostaglandin. They stop the RIV because their is no antidote so if something went wrong its easier to control but I was told they just keep transfusing because RIV has a limited full life. Are you being refused because of your inactivity as that will increase your risk of another DVT? I think you need to ask more questions.
Your not being glum your disappointed and disgusted and that’s ok….I have always felt the wait until your older for knee replacement so stupid and they say “well you will need another replacement if you get them too soon”… I would seek a second opinion.
I saw an orthopod with view to having a knee replacement late in 2020. However I was able to do some things which turned things around for me. One of which was to use Flexiseq Max for osteoarthritis. Although I still have knee pain from time to time I can walk with no difficulty and am confident that I have delayed the need for surgery by many years - given my age maybe forever! Apparently even if you are bone on bone, if the cartilage is all but gone, you can still get some benefit from using Flexiseq. This may give you some relief and buy you some time. Unlike Voltaren (Voltarol?) it contains no medication, just substances that can allow an affected joint to move more easily and with little to no pain or discomfort.
My Assumption is the surgery you reference is the transplant surgery. That isn’t entirely correct. In Britain, you have conditions the NHS classifies as “fundamentally” disqualifying and others like “persistent infection” that disqualify you from receiving the transplant immediately. It is all outlined here:
I encourage you to spend much time here if you are as concerned as you indicate. While your system is Challenging it isn’t all fun and games “across the pond” either. I know you are limited in choices but there is an old saying” the squeaky wheel gets the oil!” Youn need to squeak loudly!
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