Knee Denervation due to multiple knee surgeries

[Stasha83]

Hi Lottie

It's nice to hear from you, I'm sorry to hear that you are still struggling too. 

I heard back on Friday and it was good news, the surgeons in the unit do have experience of partial knee denervation and having read my notes they think they may be able to help me! I have an appointment with Dr Sinsi on Thursday. I'm trying not to get my hopes up but I am very much looking forward to speaking with him.

Just wondering if it would be worth you seeing a nerve specialist for your foot?

Stasha

[Lottiefox]

Hey Stasha

That is very good news. I really hope they can offer you some suggestions. I have wondered about seeing a nerve specialist. Although I without doubt have elements of CRPS I also have some atypical features and as the CRPS has appeared to abate I am left with very defined areas of "damage" rather than the more diffuse symptoms of CRPS. My pain doc is great but he can't actually diagnose or treat the "nerve" issue. I cast my mind back to when it started and I had a very definite "buzzing" nerve sensation in one area, and then a referred nerve pain along my foot and up my shin. Prior to surgery my arthritis has appeared to impinge this nerve as I would get the pain in the same referred area. I often wonder if a nerve is being pinched/compressed. I guess I could email the nerve unit and see what they suggest, I would need to get my notes in whole. I am generally doing good - working, exercising and we went on holiday over Xmas and I managed 3 coastal walks in Cornwall - in walking boots, on hills and over about 4 miles each - progress! But, it isn't as I would have hoped 9 months post fusion. I will have a look at the Wellington website. My foot doc does two days a week there, I might ask what he thinks too.

Anyway I don't want to take over your issues with mine. Good luck next week.

Take care and hugs,

Lottie xx

[missmyknee]

Hi Stasha

That's good news you get a consult with this group. Anxious to hear what they say.

Good Luck 

Pam

[Stasha83]

Thank you Pam and Lottie for the good luck wishes, I'll update on Friday as to how I get on.

Lottie I think it is worth emailing the unit or calling them, they have been very helpful whenever I have been in touch. I wasn't sure if I was looking in the right place so I had my notes faxed to them first so I am sure you could do this too. The first consultation is £250 so it is expensive but hopefully it will be well worth it!

[Lottiefox]

Good luck tomorrow Stasha. Let us know what they say. I don't think you can put a price on someone trying to find the right way to get you reduced pain and better function. Really hope they can help you.

I am having a REALLY good foot week. Best yet I would say. I may well gather all my notes anyway and then they are ready for the unit if I decide to see them. I don't want anything surgical doing though at the moment, so I'll see how things continue to go. My foot doc said to me once to think in terms of a year...perhaps he was right!

Take care

Lottie

[Stasha83]

Thanks Lottie 

I agree, pain relief would indeed be priceless. Well, as long as BUPA think so too! 

I am glad that you are having a good week, perhaps things are on the up for you at last?

I think your foot doc is right, we do have to be very patient and allow a lot of time with our situations. I am at about 18 months now though and my patience is wearing thin. The thought of another surgery is not a nice thought at all though so it is a bit of a double edged sword.

Will update tomorrow, thanks again for the good luck wishes.
Stasha

[Stasha83]

Hi Lottie and Pam

Well yesterday I had my consultation with Mr Sinisi. I spoke to him about my history and described what my pain feels like and the changes in colour that I get. He tapped on the inside of the knee area and this immediately made the front of my knee hurt. This confirmed to him that I have a problem with the medial cutaneous nerve and more than likely the medial retinacular nerve so I will be having a medial denervation.

He advised that I need to have surgery sooner rather than later as the earlier these nerves are dealt with the better and I am about 18 months down the line already.

I need to confirm with his secretary and BUPA, but he wants to operate in 3 weeks time. He said that if the nerves have any lesions I may wake up with a knee that is numb at the front but that is better than being in this constant pain. He seems very confident that he can just decompress them though in which case I may be free from nerve pain very soon!

 think I will still have some pain due to my mechanical problems and scar tissue but I think that the nerve pain is the worst and if we can deal with that it would be a miracle.

I feel slightly in shock that someone is going to help me rather than just telling me that there is nothing that can be done for me and I will just have to cope with being in pain for the rest of my life. I'm sure it will sink in soon, I really can't remember what it is like to not be in so much pain so it will probably feel very strange for a few days after!

Stasha

[missmyknee]

Hi Stasha

That is great news ! It feels good when you see a doctor who understands what is going on and can do something about it.

When I had surgery with Dr Dellon,  among all the numerous procedures he did on me , he did a resection of the medial cutaneous nerve of the thigh and implantation in the vastus medialis and did resection neuroma of the medial retinacular nerve with implantation of the nerve in the vastus medialis. I had dennervation in other areas too. He did 8 procedures in all. He told me he could not believe how scar down the nerves were, some scarred to muscle, others scarred to bone, some kinked from scar. He was just amazed at all the scarring.

Dr Dellon did tell me that 10% of people may require additional surgery to other nerves.

I am happy for you and hope this will remove the awful nerve pain 

Pam

[Lottiefox]

Hey Stasha

I have just done a little happy dance! Not because you need more surgery but because it seems like this doctor has got a plan, and realises what needs to be done. As you say, even if the mechanical issues remain and create some pain the removal of the nerve pain would be a MASSIVE step forwards and probably feel like your life has been given back. I know exactly how hideous nerve pain can feel. What is the recovery and rehab like from this type of surgery? I have no idea how invasive nerve surgery is. I hope that BUPA and his secretary get things moving and you'll be getting this sorted out soon as planned. What a great feeling to have found someone who listens and who understands and can DO something.

So pleased for you, have a lovely weekend,

Lottie xxx

[Stasha83]

I would do a happy dance too if my knee didn't hurt so much!

My surgery date is the 15th of February so not too long to wait. I will be in for 1 night as he likes to leave a catheter in the wound for 12 hours to enfuse it with local anaesthetic. It's open surgery, I think it is quite invasive in that he has to go pretty deep to find the nerves and implant them into the muscles. He showed me how big the incision would be, about 4 or 5 inches so quite a big scar to add to my growing collection!

BUPA are being awful. The secretary did warn me that they are very awkward and that they only have a few procedure codes which are meant to cover anything from a 10 hour surgery to a half hour surgery. BUPA said that they are willing to pay £200 for my 2 hour long surgery! Totally ridiculous!!! Mr Sinisi's fee is £1,000 which I think seems pretty reasonable but obviously BUPA don't agree. i'll be calling them again on Monday as I ran out of patience with them yesterday.

Interestingly Mr Sinisi said that Dr Dellon came over to their clinic 4 years ago so i'm a bit confused as to why Dr Dellon didn't mention his name when i asked him if he knew of any UK surgeons? Maybe he just forgot or something.

Pam can i ask how your recovery was after the procedures? It looks like you had the same procedure that is planned for me but I know you had a lot more done but it's always good to hear how other people found it.

I think rehab wise it shouldn't really set me back, i'm hoping that once the pain has gone my muscles won't be so inhibited and I might actually make some progress after all of this time. Fingers crossed anyway!

I honestly can't explain how relieved I feel to have found this Dr, I feel like i have a chance of getting my life back after all.

Hope you both have a great weekend.
Stasha

[missmyknee]

Hi Stashe

The incision in my inner thigh is about 4 inches long. The incision for the medial retinacular is about 2-3 inches long. I also had a 3 inch incision over the lateral tibial-fibula joint and another 4 inch incision above the lateral malleolous I brought crutches partly because I was still recovering from the ankle fusion and still in a walking cast. I did crutch walk out of the recovery room and went back to my hotel room. The incision to the thigh was very sore because it involved cutting thru some muscle, but I did not require any special rehab from this surgery.

I was supposed to have additional surgery, after I recovered 6 weeks from a revision of my ankle fusion, 2 months after Dr Dellon's surgery. Unfortunately I had nonunion problems again with the fusion, requiring yet another revision. Most people who have nerve decompressions, resections, or neuroma excision go on to have no more nerve pain. I fell into the 10% Dr Dellon talks about who need additional surgery on other nerves and in my case/body , I developed more neuromas.

February 15th will be here before you know it ! 

Pam

[captainruss]

Pam,

I read about your experience with Dr. Dellon.  Does anyone else do denervation?  I have great insurance, but no money to pay him cash.  I could see me robbing a bank to get the money and then having him tell me I need more surgery!!  Humor...sorry.  I see you had written you considered amputation.  I went to see a specialist yesterday about that against the wishes of the wife.  I just feel useless...need to go back to work.  I have looked at the www.ossur.com web site.  They have bionic knees and ankles to assist with an above the knee amputation?

Did you get any info on this?  After 11 years...I am going bonkers after 2 years....

Russ

[missmyknee]

Hi Stasha

I was wondering how your surgery went on Feb 15th. I hope you are doing well and can tell already how successful it was.

Let us know how you are 

Russ

You need to look for a peripheral nerve surgeon. Most of the time they are plastic surgeons who specialize in peripheral nerve surgery.

Pam

[Lottiefox]

Stasha

I was also wondering how things had gone, was going to PM you but thought you might be taking some time to rest up and recuperate. I have everything crossed (fingers, non-fused toes and multiple kitty paws) that this surgery brings you some relief.

Let us know how you are when you feel up to it,

Hugs xxxxx

[captainruss]

Pam,

Thank you....I am trying to see Dr. Noyes on the 28th of this month.....I am trying to raise the funds.  I am also trying to see Dr. Andrews in a couple of months at the Andrews Clinic here in Florida.  He has a long waiting list.  I am also talking to my insurance about approval for a powered prosthetic if I choose to go that way.

I just found out my pain pump is being recalled by the FDA and Medtronics, so now I am looking at another surgery to replace it and build back up to the level I am at now.  I guess they have had 59 from the batch mine came from fail in the past year.

I took the wife dancing last night....between the fentanyl patches, lidocaine patches, and oxycontin I made it for almost 4 hours.  My wife loves to dance and we used to do date night every tuesday prior to my TKR.  My knee is the size of a beach ball, but it was worth it.  She had a great time and I feel human (male) again.  I am not let this ruin my life......

Russ