Knee Denervation due to multiple knee surgeries

[captainruss]

Andrea,

I have rescheduled with Dr. Noyes due to my 14 year old daughter's knee condition.  I took her to All Children's Hospital's Orthopedic Department today and must return Friday to get an opinion from the knee specialist.  I am hoping to visit Dr. Noyes when I drive my daughter to see other specialists.  I am looking at a recommended doctor in Georgia, on to Cincinnati for Dr. Noyes for myself, and then to hopefully one of the patellafemoral "Giants" for my daughter.  If I get to Michigan, I want to see Dr. Woltjey's (spelling???) and hopefully to Dallas or Michigan for my daughter.

All Children's Hospital is affiliated with John Hopkins and seem to be highly recommended, but I must make sure I don't make a mistake.  My daughter is my priority.  My pain is not a priority.  I did find Dr. Noyes very accomodating and willing to get me in whenever I can get into the area.  Very nice people.

Please let me know if you do see anyone.  I am definitely limited on resources and trying to figure out people I know who we can stay with in Michigan, Ohio, and Georgia.  I have no one I know in the Houston/Dallas area.  I am really concerned about making a mistake with my daughter.  I talked with the pediatric specialist today regarding the awesome responsibility he has operating on children.  A mistake can affect a child for life.  I am not sure I can handle that sort of responsibility. 

Russ

[mtlady]

Hi Russ,

Thanks for writing - I very much hope you get something resolved for your daughter!  Sounds like you are taking the right steps.  I will definitely let you know if I find a doctor that is helpful.  I had to travel pretty far already just to get a proper diagnosis, and I'm sure I will be traveling more!  Seems pretty ironic since both my husband and I work at a medical school!  I have a problem with my saphenous nerves in both my legs, but no one knows why - never had a knee surgery in my life.  Anyways, please let me know how things go for you - I wish the best to both you and your daughter.

Andrea

[mtlady]

Hi Stasha83,

I was wondering how you are recovering from your surgery and if you have had any relief yet.  Hope you had success!  I am looking for a surgeon to do something similar for me.  Let us all know how you are doing when you get a chance.

Andrea

[Stasha83]

Hi Andrea

I am sorry to hear that you suffer with nerve pain too, it really is awful.

I have been putting off my update as I don't really know what to say. I am still in pain, some days are terrible and I still get the burning and redness.The night-time pain is pretty much the same as it was prior to the surgery. I do get the odd day where the pain isn't so bad but I always seem to have an element of pain no matter what.

When I saw the surgeon a few weeks ago and he pressed in the areas that re-produced my symptoms it didn't happen this time so he views that as a success. I didn't expect to still be in pain so i'm not sure what to make of it all really. I'm keeping my fingers crossed that its still early days and that it will improve.

Stasha

[missmyknee]

Hi Stasha

What did your doctor say about all the pain?  I was told it would take several weeks for all the nerves close to it, to calm down. They get very irritated and angry from the surgery. If your incision is totally healed, have you tried lidoderm patches in those painful areas? Also something for future reference, my doctor said that 10% of patients will need surgery to additional nerves.

Pam

[Stasha83]

Hi Pam

I haven't seen him since the 1st of March, but he said that I should now allow up to 12 months for a good recovery, but by this he means a general recovery (ie my flexion and extension etc). I think he was un-sure about the night-time pain and redness and hoped that it would all settle down but it hasn't and isn't showing any signs of improvement yet. I see him again in early May so perhaps that will be a better time to judge.

I wouldn't say my incision is 100% healed yet but I do know the patches you mean, I have tried them before after my last AF surgery. Sadly we can't get the patches here on the NHS and they are too expensive to buy privately so I can't have them.

Can I ask how you felt at 5 weeks post op?

Stasha

[missmyknee]

Hi Stasha

Unfortunately 3 days after my surgery, I had an area in the medial crease of my knee that was causing nerve pain ( burning, throbbing, sensitive, needle sticks) It started small and progressed over the weeks after surgery. It eventually made it all the way down my leg and across my foot. It's funny, because this was the very area that was missed when my OS did nerve surgery before Dr D. This must be a completely different nerve branch. I never got back for a post op check because I had my 2nd ankle fusion/revision done a month after the nerve surgery, so I had a lot going on.

As time has gone by, I have developed many more neuromas, in my knee, from scar tissue wrapping around the nerves. You can feel them. My PM doc has never seen anyone have recurrent neuromas and so many of them.

I have been trying to get back for more surgery, but it is hard to come up with the money.     Dr D says he needs to do more surgery. I will give him one more try.

This is my experience with this arthrofibrotic nerve pain (AFNP), a new term I call it.

There might be another nerve that needs denervation in your knee.

Pam

[Stasha83]

Hi Pam

That must have been so frustrating for you, especially just 3 days after the op. Sometimes you must really wonder when this nightmare will ever end.

Is there anything that can be done for the neuromas? If you have surgery again is there a chance that they will still re-occur? I understand the difficulties in raising the money, I was lucky in that my insurance covered half the cost of my op but my parents had to pay the other half for me. I think we would be very rich people if it wasn't for our knees.

I like your tem AFNP! I wonder if there is a link between AF and these nerve issues? Or are we just the unlucky few perhaps?

To be honest I don't know if I would consider having another denervation after this experience, I would be so worried that it wouldn't do anything. Other than the symptoms, is there a way for sure for knowing that there is still a problematic nerve? I know that I am still experiencing nerve pain because I can recognise the symptoms but I am hoping that this is just because the nerves have been jangled and are still very irritated.

Stasha

[captainruss]

Stasha,

It seems that the majority of knee patients go in for that one procedure....possibly one procedure on each knee at the age of 149 (I see so many healthy knee patients 3 times my age) and are good for the rest of their lives.  If I had a quarter for every person (I live in elderly (snow bird) capital of the world) looks at my knee and says how wonderful their experience was and how pain free their lives are post surgery, I could probably retire or make a healthy grant to the KG forum!!  The truly sad part is most of us are such a small percentage of the knee patients being treated that complications are not a priority.  I have an OS who tells me he has performed 6000 TKR's with less than 20 that were infected and I am his first to have AF.  I sometimes wonder if I am the first that he has actually been told I have AF, not that I am sure he would recognize it in other patients.  The ease with which some of these doctors encourage the very small number of complications such as myself to "live with the condition" or to tough out the pain.....makes me wonder how many patients when faced with denial and refusal to aggressively seek an answer to their condition just fade away.

I struggle with a quandary whereby I consider which is the greater loss, the time and physical well being from having so many operations without improvement or if the refusal of the OS that got me this far to press on for a better result is tougher to deal with.  At least with each one of the failed procedures, I had hope through surgery, PT, and rehab that this might be the one that the OS gets correct and i will capture some of my lost function, return to the roles of the living! 

Anyway....always a chance someone will gain interest and find a solution.

Russ

[mtlady]

Pam,

Have you had nerve surgery (neurectomy/neurolysis) from an orthopedic surgeon?  Or just Dr. Dellon?  I have contacted Dr. Dellon, but I am very afraid of the cost.  i would have to have surgery in both legs, so it would be very expensive. I have already contacted neurosurgeons at UCSF and Mayo and they don't seem to want to do surgery (they don't seem experienced with this problem).  Pain management is just not working, and I don't want to be on drugs because I want to have kids before it's too late.

Thanks,

Andrea

[missmyknee]

Hi Andrea

The first 2 surgeries (neurolysis and neurectomy) were done by my OS. The first one was for one neuroma, the second time was for 6 neuromas. When I redeveloped neuromas my OS sent me to Dr D. When I saw Dr D ( he does not take any ins) the first time for a consult, it cost $600, which I got reimbursed thru ins at 80% out of network service. When he told me how much his fee was, I said I could not do it, but thank you for your time. Then he said another amount and another til I agreed. However, he is not going to give it away. He does negotiate his fee. He had a partner or assistant where the rest was billed with ins. The hospital, anesthesia, etc was all covered by ins, just not his fee. I had problems with BCBS who said the surgery did not require an assistant, so I had Dr D write a letter and faxed it to me, saying basically, yes it did. They agreed to pay that time.

I have new ins this yr, United Healthcare, pays 100%, no deductable , but still coming up with fee ( I have a ballpark figure from him) plus airfare, hotel, rental car....adds up.

His consult took about 4hrs. He mapped out my knee and lower leg/foot thru a series of lidocaine injections to the nerves and the affect on the nerve. He drew lines all over like a road map location of nerves. I had more areas than just my knee from damage when I severely broke my leg in 4 places, which started my knee problem.

He has trained several doctors around the U.S. I tried to see one close to me, Dr Susan Mackinnon in St Louis, a 3hr drive, but she refused , saying she couldn't do anymore....even though Dr D sees no problem.

There is another Dr in Arizona, Dr Christopher Maloney. He trained under Dr D

http://www.maloneynerveinstitute.com/about-nerve-institute.html

I am torn between going there where my ins would probably cover it all or finish up with the Dr I started with and have the pioneer of the technique of this surgery.

There is another Dr in Las Vegas named Dr Tim Tollestrup. Another KG named Marco sees him.

One thing to know going into nerve surgery. My Dr said the 10% will need additional surgery to other nerves.

He usually answers emails within 24-48 hrs and is very personable.

Pam

[mtlady]

Pam,

Thanks for sharing the info!  I would like to hear what you decide to do next too, and how it goes for you.  I am going to keep looking for someone "in network" for now, and then consider Dr. Dellon or someone that was trained by him.  Seems like no one trained in Dr. Dellon's techniques is "in network" for me.  My insurance isn't that great - will only pay 50% out-of-network after meeting a high deductible.  My next project is to try and get into Johns Hopkins to see a peripheral nerve surgeon...wish me luck!  Much luck to you too.  I'll check back for your updates.

Andrea

[missmyknee]

Hi Andrea

Going to John's Hopkins would be a good place to start. Dr D is a professor there so there is bound to be a plastics doc who specializes in peripheral nerve surgery and knows of him. John's Hopkins ( large campus) is across the street from Union Hospital where I had my surgery with Dr D.

Keep us posted and I wish you all the best. I'll be posting who I decide to go with and when. The big picture is finances , esp in this economy.

Pam

[mtlady]

Hi Stasha,

It has been a while since I checked this thread, and wondered how you were doing.  Has your pain been getting any better?  Just wanted to know how things were going for you.

Andrea

[starpolisher]

Trying to do a little catching up on everyone's progress/problems.  My computer has been in and out for repairs and just lots of things going on.  I had such excruciating pain in both my knees from AF.  I think perhaps because I had fewer operations, I didn't develop the really problematic nerve conditions you all seem to be trying to cope with.  I do have to say though that until my astym I was mostly bed ridden from pain.....I wish I could be more helpful.  After my 3rd series of .10 Astyms, it was incredible how good my knees felt!  Then I got really bad bacterial infection that has been so widespread and couldn't do my PT at home and STILL had almost no pain.  When I finally recovered, went back to exercises and had lost some ground but all in alll......until I did some gardening (a hobby I once loved) 2 days ..... on off day in between but our property very hilly and standing at bag angles for my knees.  Big setback!  We are still vulnerable!  I have decided to cut back another morphine pill and just go very slow.  Of course you feel crummy for a few days until your body gets used to it, but it's worth it.  What is upsetting is my pain doc rushes me in and out (10 minutes every 3 mos) and keeps telling me I've been on morphine so long it's impossible for me to totally get off though I could cut back a little bit.  So am going slow and trying on my own. 
I know what you all mean when you have doctors who say "you have to live with it....nothing more we can do."  I am scheduled for my 4th set of 10 treatments to begin in May (I rest 2 months in between each set of 10.  At some point they won't be able to get anymore scar tissue out.  After my gardening misadventure, could barely turn my knees without it feeling as if a knife were stabbing me......but once I get in the right position, it eases off.  Not doing anymore gardening! 
Russ, I can feel your frustration.  I think what is most upsetting (not my husband or son...they are wonderful though it does affect them a great deal and I've tried to hide the worst of it).....but my brothers and their wives (the wives especially.....I hear about "my dad has a sore back and he's 80 and mows his lawn!  My uncle had a knee replacement and he can visit his grandchildren....it's mind over matter....")  Oh I also get "don't mean to hurt your feelings, just trying to give you ideas on how to cope better.  Of  course none of them have had any orthopedic surgery.  I am very fortunate that the astym has helped me so much.......at least I can do things (carefully) and am cutting down on the morphine.  I was told from the beginning I'd never be like I was but I know how hard it is to live with pain.  It's very difficult to get through the day and when it goes on year after year.......mine is definitely improved.