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In which group do I really fit ?
Good morning I have been following several groups and found a great deal of info but am reaching out here for input because I don’t know where I fit.
I had a “textbook perfect” ( doctor’s description ) hip replacement in Aug 2017, discharged with “cane as needed” instructions. 5 days later rolled my ankle, dislocated my hip and fractured my pelvis. A surgical repair required 13 screws and 2 plates in my pelvis. I developed foot drop 1 week after surgery and was diagnosed with probable “nerve damage”
6 weeks later the surgeon dislocated my hip during an office visit and back to surgery I went. He replaced the ball with a locking device to prevent further dislocations and performed nerve neurolysis to remove 4 cm of scar tissue adhered to my sciatic nerve. I suffered 1 more dislocation in 2018 and a new surgeon removed the screws and replaced the equipment in my hip. I immediately began to get some movement in my foot.
My dilemma; orthopedic surgeons have told me nerve damage will either heal, or it won’t. There’s nothing that can be done. Consulting a neurologist is useless.
A lumbar MRI shows spinal changes that per my hip surgeon could cause my foot weakness, pain, numbness, etc . Spinal surgeon says no, it is a result of my hip trauma.
Pain management did lumbar epidural and trigger injections which I think increased my complaints rather than mitigated it. 3 EMG- nerve conduction tests since 2017 confirm nerve damage but that’s where it all ends. I am reaching out to John Hopkin peripheral nerve center to see if I can get an appt.
Mayo’s neurologist did conduct one of the neurology work ups in 2018 but that’s where it ended. I’ve tried to get appts with Mayo for hip- spine- neurology without success.
I am frustrated and stuck in a revolving door of doctors and find their lack of communication with me and each other is hindering my progress. I need to resolve this and am unsure how to proceed. Someone needs to make the effort to determine 1. Is it a spine nerve root issue 2 Is it damage from the dislocation/ fractured pelvis 3. Is it nerve damage that can be treated and / or managed because gabapentin has been useless and the chronic pain- numbness- lack of sleep is taking a toll.
Thank you for any input you share 🙏🏻
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Hello @riverlover and welcome to Mayo Clinic Connect. Reading your history, it is clear to see there is a lot at play here and I can understand you wanting to figure this out.
Not to oversimplify this, but in order to help get you in the right direction, could you share what you are most wanting to see resolved?
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3 ReactionsI want to determine the cause/
Source of my nerve damage and then take the necessary steps to treat or manage the foot drop and nerve pain. Basically it requires having orthopedic docs communicate with each other and the neurologist. That’s apparently not done in SO CA :/
@riverlover communication between specialties/departments is the essence of how Mayo Clinic cares for patients in a multidisciplinary approach. It is incredibly difficult to facilitate and coordinate that as a patient, especially when that isn't the way things are set up for care so I commend you for all your efforts to do so all this time.
In case you're interested in learning more about how this care model may benefit you, here is a link: https://www.mayoclinic.org/departments-centers
If you find you'd like to explore an appointment, I would be happy to share an appointment request link with you.
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2 ReactionsThanks I’ve been to Mayo twice
Once in Scottsdale for a neurological work up in 2018 and then at my doctor’s referral, a second time in FLA for a vascular work up. Unfortunately I flew cross country to have a work up that consisted of one appt to which the doctor arrived over an hour late, gave me 20 minutes of her time and then dismissed me without further adieu. I discussed this with a family member who is a vascular surgeon in So Ca. He suggested another attempt at scheduling with Mayo. Scottsdale just told me that neuro/peripheral nerve is not scheduling new appts. Realizing I have to look outside the Mayo system and am discussing with John Hopkins. Thank you for responding
You might consider looking outside of traditional medicine since it apparently hasn't done you well so far. I believe both the ortho and neuro guys are telling you their methods of treating you will not help you. Certainly PT is in order for your foot drop but alternative therapies abound and Mayo does offer that I believe. I hope you find some relief. Did you take any action against the orthopedic doc who fractured your hip? I presume what ever the procedure they were performing in the office this was not a side effect expected?