Unbearable nerve pain following total hip replacement

Bones, joints and muscles
1

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

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Ohh cat my heart goes out to you Hun, this forum is great for feeling there are people out there who are at least listening and understand what your going through, I had complications but nothing like yours and you feel there is no light at the end of the tunnel but just remember it gets better day by day and you will get there, everyone is different and some of us take longer than others, try to keep positive and trust me I know how hard that is xx

3

I am so sorry to hear of all the problems you are having after your surgery. I am assuming most of us on here have had just the normal THR therefore not I expect as serious as yours. Do you have the number of your surgeons secretary, maybe you could get information from the surgeon via her. I expect you cannot do your exercises at the moment. I am sorry I cannot give you any practical help but really hope you start to improve soon.

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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

 

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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

 

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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

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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

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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. 

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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

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Thank you, I most certainly will.

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

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Hi Catherine,. I, too have bilateral hip dysplasia from birth and had an inch difference in leg length. They gave me a new hip in 1996 and it lasted 20 years but it came loose and after the surgery my left leg was an inch shorter. I had to get a lift Putin in all my left shoes. The surgery in December 2016 was 5 hours long, the leg was so badly swollen, the incision is almost 30 cm long and a total of 51 Staples. Lost 5 pints , got only 3 back was left anemic and the nerve, trndon pain was so bad that I was on morphine for 6 months prior and post op. As soon as the Staples came put, a friend would be daily and take me to a therapy pool and slowly things got better, returned to work after 4 months with modified hours. Shortly after my right hip ceased and I had to go back in in July 2017. It has been along road and an emotional roller coaster. For the nerve pain I had a combination of muscle relaxant and morphine and for when I had to be awake, I would cringe because the pain was so intense. The hot pool, the massages and the will not to give up and this is not to win kept me going. Plus I have a disabled son and I am his primary care giver grounded me. I write this as it is 7:30 am on a Sunday and I bikingy 30 min and then will do my hour of exercises. It is my new daily routine but I have no pain and I have my independence and no more opiods. Get the nerve tested. It could be pinched somewhere and it will take time and baby steps. At least for me it has been my experience. I read, I learnt to paint, I knitted premies hats , reflected on where I wanted to be for the next 10 years became a minimalist, got rid of a lot of luggage. Watched all the planet Earth while I was semi comatosef and learnt about stocks and investing. Did a lot of things that I wished I had time to do. The art really helped since it is like meditation. Hang in there. It is ok to feel down and depressed but go see your doctor and talk about it and hope tomorrow will be a little bit less painful, be able to do a little bit more. Take care of yourself, eat right and do those exercises buy listen to your body. By the way after my right hip was done, my legs are the second length and I got rid of 10 pairs of ugly shoes.

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I also have your problem.  The bottom of my foot is totally numb up to the back of my calf to the back of my knee.  Also numbness around the back of my thigh and around the incision site. I also have horrible neuropathy in my foot and take 200mg of Lyrica 3 times a day.   I am 10 weeks post op.  I immediately started seeing a great neurologist and she did at 4 weeks a EMG and a needle test which showed my sciatic nerve was affected.  She sent me in for a special MRI neurography which showed my sciatic nerve had been stretched to the point of breaking during surgery caused by traction and not paying attention to the nerve, and now has scarred and will never heal.  So I have permanent nerve damage.  She said the area around the scarring possible will regenerate and I may regain some feeling back.  She even consulted with a plastic surgeon who specializes in nerve surgery and he said there was nothing he could do.  Go find a really good neurologist.  I don't know where you live, but I go to UT Southwest in Dallas, Tx and to Dr. Shaida Kahn.  She is the best, and gives you the time with her you need.  I will pray for you that you will have full recovery.  God Bless you Cat.  

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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

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Hi Cat

So I'm 12 weeks post rthr I can not even bend my knee, I can lift it a few inches of the floor. I get awful little shocking pain around my scar area, my hip to my ankle is pulled so tight that even walking and sitting is painful, if have a 1.5inch longer leg discrepancy I can't walk unaided in which I could do before the op. I'm still of work and no chance of going back for months. My surgeon did an xray at 7/8 weeks and said my pelvis had dropped. My nerves and tendons don't seem to work properly and feels like they were cut. I have a massive limp I'm told because I have no muscle support at all. My muscles in my legs have completely gone to waste and I can't even hold my own weight. When you mentioned about showering and washing I smiled because quite honestly it's a bloody mission. Once I've washed my hair over the bath with the shower head I'm pretty much tired for the day and if I get a shower I have to space activities out 😂 of course it's no laughing matter and yes I've had a few tears but I've seen so many stories on here and one I'm holding close is a lady saying it was her 2nd year and she felt great, or the lay that said she was 6 months post op and just successfully tied her shoe lace. I believe we have had a rubbish start the same with poor aftercare and the added stress of longer or shorter legs. I cried when my husband mentioned a shoe lift I never needed one before and completely regret having this done. I'm sick of looking at my leg and sick of having to struggle with everything and it is everything hun from having a cup of tea to getting your own sock on. My surgeon has said that I have to wait a year and he would consider correcting it that's all well and good but are you paying my bills during this time? No... I can't drive to work as my knee won't move to brake! I feel your pain I really do. Today is my 42nd birthday my husband took me to Toby carvery to celebrate 2 hrs later and I'm back in bed resting. I find short walks to the bathroom is enough. Icing doesn't seem to help and the exercises are showing no improvement, I am having leg spasms and I really hope it's the nerves trying to work lol if not there just fun to watch. I'm distracting myself with TV, and ordering my husband and daughter round on a daily basis of cleaning lol. My daughter has kindly offered to cream my feet and cut my nails because I find that very depressing that I can't even cut my own toe nails. Don't feel like your alone because you are not! Now I've gone on a while lol

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I am so sorry you are going through this horrible time- as I sit here, my leg just throbs and aches, but nothing and I mean nothing compared to yours! I suggest you go get a second opinion, seems like your doctor has washed his hands of you. You really shouldn't be on the morphine  at this point-  also as awful as it seems, sometimes the drugs make it feel worse! They reprogram your brain to think you need it.... consult your GP to get on a plan . 

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Good morning Catherine.   I’m so sorry what you’re going through.  I’ve not been on forum for awhile now but a friend thought I could offer you my story.  I had a hip replacement back in July 2016.  I was born with hip dysplasia. I was 6 months old before they knew my hip was dislocated. They did a closed reduction.  I was good for years but was always short on that leg.  Fast forward I started having a lot of pain on and off for several years but it got worse to point that I couldn’t stand pain and had difficulty getting around and doing things.   So after trying a shoe lift and injection In my groin I decided on surgery.  It took 6 hours!  Went home after 2 days.  But something happened I noticed my hip was higher, walking became painful and my leg was shorter by quite a bit when I would lay down and my foot would go to the side.  3 weeks later I’m seeing dr for follow up, immediately they notice something.....X-ray shows dislocation!!  Dr books me for a closed reduction (pop hip back) no bueno!  Had to do a total hip revision due to it all being loose.   Another 6 hour surgery.  I was devastated!  I had to be 6 weeks non weight bearing and no hip exercises or hip flexion past 80 degrees. Went to rehab for two weeks, then 4 weeks at home.  Alone most of days,  hubby had to go to work.  Cried practically ever day.  Felt hopeless and useless.   And angry 😡 This was not me!!   Fast forward...finally get to walk!   Drive!  It was still hard.  Had to use crutches for awhile then was able to use cane.  Was limping and still had habits from being short all those years.  Was in physical therapy for about 6 months.  Shortly after that I started getting sensitivity in my thigh.  First it was between the two incisions, softest blanket bothered me.  Then it started to go down the thigh and side of thigh.  Pants were awful to wear.  Skirts, dresses...ugh what was going on!!  My dr prescribed gabapentin but it didn’t seem to help.  He referred me to a wonderful caring pain dr.. was when I was diagnosed with meralgia paraestica, a nerve problem that affects the femoral cutaneous nerve.  A sensory nerve.  That was a year ago.  He gave me injections in the nerve, switches me to lyrica.  50 mg 3xday...but I’m very leary in taking meds and wasn’t taking as prescribed.  I told him that.  I told him I like to drink alcohol and was worried about it.  He puts me on 75 mg, I take with caution.  And started taking 2xday.  I started developing mouth issues.  Dry mouth and ulcers extremely dry lips.  It was awful. Still having issues with hip.  Pain in hip area and thigh.  Diagnosed with bursitis and tendonitis!   When will I catch a break!!!  I see various drs. A neurologist who gives me nerve conduction study, mri of back.  Back issues to boot!  Nerve study shows some issues.  Thing is the cutaneous nerve is a hard nerve to track and see where damaged or injured.  So he was no real help.  Said for me to drink water to help with dry mouth!  Really dude??? Ugh 😑!!!  Back to pain dr. Doesn’t think lyrica is problematic, by then Im up to 225 mg.  I go to my dentist and she says to use biotene for dry mouth doesn’t see anything serious.  I’m scared cause NEVER have I had such problems!!  I go to my pcp he refers me to a arthritis dr.  Gives me exam goes over my story and says I need to try taking gabapentin again.  I had to slowly go from lyrica to gabapentin.  I’m currently takin 1 dosage of 600 mg and two dosages of 300 mg. Trying to work to 600 mg 3 x day.  But will see.  So it’s almost 2 years since hip surgeries and a year on nerve pain.  I’ve had to go back to physical therapy because I was still needing to use cane.  I’ve been blessed to have a wonderful knowledgeable therapist.  She said I was very weak to point of possible NOT recovering these muscles to the fullest.  All because of my problem since birth.  But I can say I’m doing better.  I don’t have to use can anymore.  Every now and then I might as I can’t walk too far without it.  Sometimes I still have to take tramadol but 1/2 a tablet.  It’s been a long slow recovery but honestly I think you will get there.  I know you were told sooner but our unique situation says otherwise.  Don’t give in!  I know it’s hard, depressing and frustrating but I promise you it will get better.  Do physical therapy as much as allowed and if you’re able go to the gym and work the muscles.  Gently and slow.  Work up to where you are comfortable and feel ok.  No pain is goal. If something hurts or feels weird stop 🛑.   If you have acces to a swimming pool and a sauna would be beneficial as long as scars are healed. If you have scar sensitivity try using a cotton ball and rub scar to desensitize, working to something a little rougher until it’s gone.   My therapist recommended shocking nerve by using a cold pack for 15 minutes followed by a warm pack.   Sorry for such a long post. But it will get better.  I’m living proof. I still get bad days especially during humid days and my leg doesn’t like the cold anymore. I also have some numbness on side of thigh.  But for most part, I’m getting better.  If you’re having problems sleeping talk to your dr. A good night sleep is crucial to well being and healing.  Lifting you up in prayer and wishing you all the best for a speedy recovery and healing.  Hugs 🤗 Linda 

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Oh my pain dr recommend a spinal stimulator implant.  Would help with nerve pain.  Well got that in November 2017... OMG what a painful experience! Needless to say I don’t think it helped much with nerve but helped so much with lower back pain.  I was having terrible back pain too! 😞😖😫.  

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Oh I also use lidocaine patches. 5% on my thigh. Especially if I have shorts on and it’s bothering me. Use K-T tape too.  Just some suggestions.   Have a blessed day...Lunda

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I am so sorry.  I just wanted to share few things I learned about nerve damage when my daughter broke her arm years ago as maybe it will help you.

If a nerve is severed it can not recover without complicated surgery if a all. Now a stretched nerve will recover but it is very slow.  The fact your leg hurts likely means nerve was stretched but not broken.  The nerve is still working but damaged. It heals from the trunk down to toes.  It heals about 1 inch a month.     I will say with time my daughter adapted to the pain.  Her nerve injury took about a year to heal.  Pt can help, but needs to be pt familar with nerve damage.  Light or sudden touch is more painful that firm pressure. she learned to prepared for touch, especially light touch like putting on clothes. she learned to avoid brushing against anything. She also had to work on fine motor because without full nerves she had difficulty with certain movements.   Her damage was in arm so I'm not sure if same with legs but if balance is a problem it may be due to nerves in your feet.  The doctor or pt should be able to educate you about the nerve involved and what areas it covers. Nerve pain  is not relieved by narcotics like morphine.  Gabapenten works better for the nerve pain than the morphine but will not help any of the normal post op pain.  I found that orthopedic doctor had unrealistic expectations for recovery that caused a lot of frustration when she saw no improvement in that amount of time.  I'm so sorry you are going through this.  It's I long recovery but it can get better

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Dear Catherine

I'm so very sorry to hear about your situation. Please correct me if I have not correctly remembered but I think you actually work with the team who carried out your surgery. Regardless I think that you have had a pretty dire outcome and I think that I previously suggested finding a surgeon with a pro en track record if difficult hip revisions. I can give you details of one on the south coast if you care to message me. PLEASE DO NOT JUST SIT AND WAIT. TAKE ACTION NOW! Cheers, Richard