Unbearable nerve pain following total hip replacement
Posted , 18 users are following.
I'm hoping someone can help me. I'm nearly 2 months out following a left, total hip replacement and to say that I have experienced complications would be an understatement. My operated leg is virtually completely numb from the thigh to the ankle and I am so uncomfortable with the leg feeling really tight and the electric shock sensations. I feel like I am dragging a tree log around when I'm walking. I am Gabapentin x3 daily 600mg, alongside my other pain relief. I'm just wanting to know if anyone else has experienced this and is there anything else that can be done? I can honestly not bare this anymore and I'm afraid of the impact this is having on my mental health. I have no inclination to get washed, dressed or get out of bed (although I'm still forcing myself at the moment). I dread night time coming as I can't get up and down freely because of my partner and because I don't sleep. I also dread day time as I'm too tired to hold conversations for long and I feel like I'm going to fall over when walking as I;m so tired and my leg is so heavy, despite doing my exercises.
?To give you some background. I'm 39 and had the replacement due to childhood hip dysplasia. I've managed the condition and subsequent osteoarthritis for 25 years but for the past 5 years, I started having difficulties with sleep, putting on my shoes and socks, and general mobility. Despite the above, I was still walking around 3 miles a day prior to surgery and I was holding down a full time job.
?After the consultations with my surgeon, I was told that despite the complexity of my hip, it could still be replaced but that I would need a specialist joint that could be adapted to my pelvis. However, this would increase my quality of life and if I was to leave it any longer, this would make things more difficult. Likewise, I was also told that my recovery should take around 3 months. Given that I used to work directly on the wards (I've worked with my surgeon in theatres also), I gave myself 6 months as an adequate recovery time (based on what my surgeon and registrar had said to me). This would allow me to rehab at my own pace and so that I did not feel under pressure.
?Fast forward 2 months. I can honestly say that from the moment I stepped into the theatre room, everything has been a complete nightmare. Poor care, lack of multidisciplinary input and so forth. As well as my surgery taking 7hours (they said I should allow for around 4), I was so severely anaemic that I was almost transferred to critical care. Furthermore, I was left with around a 2 - 2/1 inch leg length deficit as my operated leg (which was shorter by an inch prior to the surgery) was lengthened to accommodate the new prosthetic. Prior to the surgery I was told that they would try to lengthen the leg but it was highly doubtful that this would be attainable (I thought this was to try and correct the deficit and even out my gait). So not only was a left with a leg that could only be used when wearing an external shoe raise (I cannot walk without my shoes on), I am also left with a leg that is virtually numb from thigh to ankle. The only thing I can be grateful for is that I did not endure a foot drop. To add insult to injury, on the day I was actually able to get out of bed and manage a few steps, I felt as though as soon as I managed to complete a few stairs, I was being pushed out the hospital door. By the time I came home, my anxiety levels were in the ceiling and I wanted to go back into hospital as I felt something serious was going to happen to me.
?I can honestly say, I have cried every day solid since I had the surgery. Although I am walking with crutches and one around the house, I have done this myself as my physio is eager to see me on a monthly basis and not every two weeks. I am so off-balance and unsafe but I figure if I don't start trying to do these things myself, I'm going to end up in a wheelchair. I have literally seen no one in the community, barring a DN to remove my clips and the physio on a couple of occasions, since being discharged. I rarely sleep for longer than an hour or two, I struggle to get comfy in any position and I'm getting horrific pain in my coccyx when sitting, I'm still on Morphine, my leg feels horrible and the numbness/pain does not seem to be improving. I've lost so much weight that I'm concerned my medication dosages may be too high (I now have a BMI of 17) and above all else, I know that I have gone into depression.
?I'm so sorry for the long winded message. I am so desperate and just want my old life back. Has anyone experienced this severity of nerve damage and if so, what did you do? As I said, I'm on gabapentin but I think I'm starting to become resistant to it now. I really do not want to keep upping my doses as I was hoping things would start to settle. I have been assured that my nerve was not severed during the procedure but it was stretched. I know it can take 1mm per month to grow but given that mine was not cut, what is the likelihood of this improving?
I've not had any conduction tests as yet because I've not even seen my consultant as yet. The ward clerk on the ward that I was staying booked my 6 week follow up appointment with a knee surgeon instead of my surgeon. My appointment was cancelled 1 hour before leaving. As you can imagine, I felt so low that I did not even bother to question why this had happened. I'm not even sure about my hip precautions or whether the joint is ok as I've not had any xrays since the day after my surgery.
?Thank you for taking the time to read this
Cat xxx
1 like, 50 replies
av09867 catherine12084
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catherine12084 av09867
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Thank you :-).
?I think I spent the first 3 weeks of my recovery in shock. I never expected as many complications and I never expected to have a leg length so huge. I literally feel like a clown when I wear my shoes. Likewise, I expected the discomfort in positioning to have gradually improved by now. I guess given the lack of information and the feeling of being kicked out of the hospital, this is normal. I am supposed to be looking after my grandson in Aug when my daughter goes back to work - I really cannot see this happening. Likewise, my 6 months sick absence is up in September, which again, I cannot see that I will be able to return so soon.
?Thank you so much for your kind words. I'm having an awful day as I've not slept a wink again. This will mean that whatever time I have with family members will be cut short once I start to dip in the afternoon. It's a lonely existence being awake all night and pretty much like a zombie during the day. However, it's nice to have people like yourself that I can talk to XXXX
jen86183 catherine12084
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catherine12084 jen86183
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Hi, Jen. Thank you so much for your response.
?I've been doing the exercises I was given prior to discharge religiously but they aggravate my pain and discomfort. Likewise, I'm going for short walks with my crutches (as advised by my physio) but again, this also aggravates the joint. I am concerned as I don't know whether all this discomfort is normal. I know I'm still only early days at 8 weeks and given the complexity of the procedure, I am not going to heal as quickly as others, but I feel that I have literally been left to fend for myself. I am doing everything that is expected of me but because of all the nerve damage, I spend my days in a horrible haze of exhaustion - resting and icing, then exercising and trying to stretch. When I eventually do fall asleep, I can still feel the nerve discomfort and this somehow starts making me have the most horrendous dreams. It's all very weird and exhausting.
?Thank you once again for your lovely message and support. It's nice to know that I can relay my concerns and people will listen xx
catherine12084 jen86183
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Forgot to mention. With regards to my surgeons secretary, once I realised the error had been made, I contacted her direct to see if she could speak directly to my surgeon as I knew he was fully booked up for 6 weeks with regards to appointments. She was very hesitant to do anything and said this was a matter I needed to take up with the ward clerk on the ortho ward and she would need to book the appointment. I mentioned the severity of my surgery and also that I knew my surgeon on a personal basis and that I knew he would want to see me asap. To cut a long story short, another department dealt with the matter for me and I managed to get an appointment 16 days after my supposed 6 week check up. It's not ideal but at least I am not waiting a further 6 weeks I guess.
?I actually feel sorry for my surgeon. I am going armed with a list of questions when I see him....
XXX
AlexandriaGizmo catherine12084
Posted
Hi Cat, my heart goes out to you, what a complete and utter travesty, you must be feeling incredibly angry amongst other things, their is a lady on here who has similar problems as you and I think she could help you get through this but I'm not sure how to find her, her name is Lynda and numbers after, will keep looking and if I find her will let you know.
I think you should contact your surgeons secretary and send a copy of this thread.
I hope you can find some comfort, I have similar problems but for different reasons 😔😔 take care and God bless
catherine12084 AlexandriaGizmo
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Thank you so much, Alexandria.
?I'm so sorry for coming across as a drama queen. Believe me, I am not usually like this and my surgeon was shocked to see how I have coped for over 25 years and still been able to live a relatively normal life (without walking aids) up until the point of surgery. I just feel so debilitated and with the leg length and numbness, this has fuelled even more anxiety. I just don't want to be in the position of; 'You just need to get on with it and adapt to these issues'. I've spent my entire life adapting, overcoming obstacles and finding ways of doings things that so that I remain as independent as possible. With these added issues, I literally have no quality of life.
?I am back to see my surgeon on the 14th of this month and I'm hoping he can give me some good news or at least, tell me what I can do to rectify these issues. I can't live with such a leg length discrepancy or extreme nerve damage, and I don't think I should be made to live with a raised shoe given that this was not discussed prior to the procedure. If I would have known for one second that there was a risk of over-extending the leg, I would have flat out refused the procedure. I even cancelled the surgery last year as I was not convinced that it would help me given the complications of replacing the hip. Yet, I allowed myself to be influenced by the opinions of others. I think that is the most difficult part to accept.
?Thank you once again, Alexandria. I will post an update of what my surgeon says after the appointment. I am writing down all the questions I need answering in the hope I will get some psychological relief from this horrible experience xxxxx.
AlexandriaGizmo catherine12084
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I don't think you are remotely coming across as a drama queen, far from it, that's not the impression I get anyway.
I can completely empathize with you as I'm nearly two years on crutches and get completely demoralised and fed up and although I have a leg length discrepancy it's only about half an inch so can wear inner lifts, why should you put up with having to wear bulky shoes to rectify a surgeons c**k up.
Whatever it takes it needs putting right, as for pain I don't think the difference will help as mine can cause it.
You need another x-ray to check how it's sitting.
Keep me posted and I will look for Lynda xx
catherine12084 AlexandriaGizmo
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I just need a little hope that something can be done or this will start to settle. I cannot possibly live my life like this. I only turned 39 in January and as I said, I led a reasonably, active life up until then.
Big hugs to you and thank You, once again, for your kind and supportive words xxxxx
AlexandriaGizmo catherine12084
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That's what makes me so annoyed when they do surgery and don't consider the consequences of results to the poor reciprecant, considering how many are done a year you would think they could get it right first time, I know obviously that yours and Claudia's aren't straight forward so surely it should be thought out a bit more instead of just making it bodged. No wonder I'm scared of having it done
Rant over xx
catherine12084 AlexandriaGizmo
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I'm so sorry, Alexandria. I had not realised you have not had the procedure done?
?Please do not let experience put you off. As you can see from this forum, the majority of procedures have a high success rate and literally change peoples lives. I was unfortunate to have a tricky hip to begin with, hence why I had so many complications. It just would have been nice to have been forewarned or at least have these points pushed forward during my consultations so that I could have prepared myself better.
?As I said, I go on Monday to see him. It will be interesting to see what is said xxx
claudia95892 catherine12084
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catherine12084 claudia95892
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Thank you, Claudia. I really appreciate your honest response.
?I'm booked in to see my GP today and I am going to lay it all on the down and let her know what has been happening. The anxiety attacks are becoming worst and more frequent and I'm struggling to get any form of sleep now as I'm often feeling out of breath (I think this is related to the anxiety).
?I've thought about a lot of the things that I want to do whilst I have time and I've invested a fair bit of money in art materials, cross-stitch etc. The difficulty I'm having is sitting in normal chairs for any length of period. I lost a lot of weight prior to surgery and even more so after and as a result, my tail bone sticks out and rubs against everything (the bed included). I've invested in cushions etc but nothing seems to alleviate the discomfort other than icing and getting off the area.
?My primary care practice does not even offer hydrotherapy but I'm hoping my gp can refer me. Their is not a chance I will be able to bend this knee otherwise and I'm afraid of keep pushing it in case I do further damage. I would attend a normal pool but given the leg length deficit, I could not possibly walk with no shoes on without the assistance of 1-2 people.
?Given options for leg length correction, I am very limited. My other hip is fine and will not need replacing anytime soon. Likewise, I am petrified of them touching me again now given all the complications and false hope. I know I will need to find a way to live with all this but as it stands, I cannot see a way at the moment.
?I'll keep up with the exercises and try to improve my diet, Claudia. Thank you once again for sharing your experience - I really do appreciate it xxxx
jen86183 catherine12084
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Hi Catherine,
I personally do not believe in pharmaceutical drugs unless absolutely necessary. I have been so upset having to have anti blood clotting injections everynight mainly because at pre op I was told to stop my magnesium and cod liver oil as they thin the blood and you could bleed out during the operation!!!! Anyway I digress, your anxiety is the reason I am writing. I use and carry with me all the time Dr. Bachs Rescue Remedy to relieve anxiety, it really works, it is safe and you take it often as necessary without side effects. Anxiety creates it's own problems and removing that is a major step.
catherine12084 jen86183
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I hate having to take prescription meds, particularly controlled. I am arranging an appointment with my gp as soon as possible to start a tapering plan to reduce/stop the morphine.
Thank you for the heads up. The anxiety is really debilitating and does affect my rehab xxx
claudia95892 catherine12084
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Hi Catherine, it is hard and sometimes I just would close my eyes and dream I was like any one else. Just pick and go and walk for hours, cook without having to choose things that take less than 30 min of preparation. Choose stores that are easily accessible, ie no stairs and have parking right in front of them. Even going on outings with my family was difficult. But your body adjusts and we adjust and learn how to juggle and survive. We simplify things and really value time and what gives us satisfaction. I learnt to be more aware of my limits. I now have mostly perennials that take care of themselves. I garden in time allotments. My timer always going off to remind me to rest. It is getting a lot better since both hips we're done. I have a desk that can be raised so I don't sit for too long. My tail bone otherwise hurts and my legs fall asleep. I move constantly and I crack about a thousand times. All my joints are stiff but my hips now. I am learning to live with arthritis but at least I can do most things and I know people that have MS or DMD or are paralyzed so I think I am not that bad of. I do see a special therapist for my lower back pain and very weak pelvic floor muscles. I do a little bit more every day and keep on fighting and staying positive. Best of luck.