Hi, is there anyone who has had a triple neurectomy ie cutting the illioinguinal, illiohypergastric, and geniterfemeral nerves in an attempt to cure pelvic pain? I've heard they can do it in America, but wondered if anyone has had it done in the UK?
If so did it cure the pain, and has the pain relief been lasting?
I would really appreciate hearing from anyone who has.
Thanks, Heidi
Idk I need this surgery too. I've seen three doctors and they all said the same thing. I hope to hear some feedback
Hi nice to hear from you and know there is someone that understands this horrid nightmare! What area do you live? What is the name of the surgeon you will use to perform your surgery?
I am really hoping to find a surgeon who is experienced in this procedure and knows exactly what they are doing and know the results from it.
I look forward to hearing from you.
Heidi
I live in Colorado but travel to Washington DC to see Dr shar hashemi with the nerve bone and joint institute
Oh, I live in little old England! I'm struggling to find anyone in the UK who has experience with this!
But than you anyway. Please keep me posted as to how you get on. All the best.
Hi Heidi,
Have you seen your consultant yet?
Have you decided what to do next. I'll be seeing mine in a couple of weeks to discuss freeing or resectioning the nerve. Or having a dorsal root ganglion stimulator if they think further interference in the block of scar tissue would make the pain worse! Like you would like to hear from anyone who's had a neurectomy.
I have looked on the hernia forums and have read a few blogs where having a triple neurectomy keeps you pain free! I'm having a bad day. Stinging glass like pain 8/9 on the Richter scale!
All because we have been to our caravan and I have walked a little more than usual. So feet up again!!!!x
Hi, yes I have seen my consultant but sadly not good news! I was there for 2 hours battling it out with him, the nurse and technician, and basically they said we have come to the end of the line! I am in shock!
He said 'I want you to be stronger and learn to live with it'! I wish I had said, if you had my pain for 1 day you would not say that, but I was in shock. He firmly believes that cutting the nerves could result in possible numbness and still have phantom pain which can be worse!
I am yet again trying to research other options, but it's all so tiring and stressful when you are in so much pain.
i hope you have a better result than me! All the best
Heidi
So sorry to hear that Heidi.
Maybe it would be worthwhile you going to bristol to see gareth greenslade. You would get a diagnosis and his professional opinion on options.
I will be seeing my consultant in a couple of weeks to discuss options that Dr greenslade made.
I agree it is so frustrating to be told live with it.
My consultant said it would be better to be numb than in the pain I,m in. He didn't say anything about phantom pain.
I will let you know the decision we come to.
Take care and try deep breathing exercises because stress dosn,t help. I'm trying tapping exercises that our niece believes will help me cope with the pain.
I will try any thing!!!
Yes I agree about the stress factor, it's true it does make it worse, I've been too pain management counselling and mindfulness so do TRY to put it into practice but it's not easy!
It will be so interesting to see what your consultant says. Mine also mentioned the possibility of incontinence which would be awful. I have also read that too. I know it would be bliss to be pain free but that's a big price to pay!
Something else I have read is that you can be pain free and then it can come back after some time ie a year or so, that's something worth asking too.
It might be a good idea for me to see Mr Greenslade, his name keeps popping up so I might look into it.
Thanks for keeping in touch really appreciate it. All the best with your appointment.
Regards
Heidi
If you look on line you will be able to get dr greenslades secretaries number. She is called Catherine. She is a lovely person and will make you an appointment to suit you.
It really is worth the journey. We stayed in Bath which is only 12 or so miles away.
Good luck and keep strong.-June
Hi Heidi,hope you see this! Have just sent a message but seem to have lost it!!!
I saw my consultant last week. He wants me
me to have a dorsal root ganglion stimulator before any surgery. To see if it helps. If not he is prepared to do nerve decompression. I hope it helps because I am very nervous of any more surgery.
How are you? Have you made an appointment with Gareth Greenslade. It really is worth the journey to Bristol.
We have just been made grandparents😆 but feel sad I can't help more because of this dammed pain!!!
I have bought a battery tens machine which I wear over my scar tissue. It does help.
Keep strong....June x
Hi June, sorry it's taken me so long to reply. I'm pleased that you've seen your consultant and he's going to try a DRS. It really surprises me that he's doing that first before trying nerve decompression. I would have thought that a DRS was more surgery as you have 3 incisions, one about 2 inches big in the spine, one in your side for the wire extension and obviously one about 2-3 inches big for the battery. I had mine all under local too! I guess I don't know much about nerve decompression.
I've seen my surgeon too and he says he can't do any more for me and to keep strong and live with it! What a joke! I am now looking into Stims in the brain but very early stages.
I have had a slight improvement with the stim working with tramodol and gaberpentin, so that's something.
Congratulations becoming grandparents!
All the very best and please keep me posted.
Heidi
Hi Heidi,have just seen a post from pepper1977.
Thought you would be interested. She has just had a triple neurectomy. You could message her to see who her surgeon is.
I'm still waiting for an appointment at Sheffield!
Will let you know how I get on....June
Hi June, hi Heidi,
I'm in much the same position as yourselves - chronic nerve pain in the groin for over a year from a hernia repair. I've only just turned 25 and my life may as well be over for the amount I can actually do with it!
Please do let me know if you hear anything more or have any successes from further appointments. I'm based in London and have seen a surgeon at London Bridge hospital who said he couldn't do anything, and then also a pain specialist at St Thomas' who has done two steroid injections (the second numbed the pain briefly, the first did nothing). He now wants me to go and study mindfulness etc which I'm sure can help to an extent but frankly I won't put up with this for the rest of my life. There was brief mention of a spinal implant but now it seems they think its all in my head?!
I'm sure you can understand how frustrating it is. Best wishes to you all.
Henry
Hi Henry
I'm so sorry to hear of your condition. It really is the most dreadful thing to deal with isn't it. I totally understand your comments re feeling your life being over as its so debilitating.
It's encouraging to hear that one of the injections had a brief response. This needs pursuing. It could mean that putting a Dorsal Root Stimulator in the same nerve could help you. The earlier you can divert the message in the brain the better!
The trouble is with me is that it's been undiagnosed for so long that the message in the brain is hard wired and very difficult to stop!
Mindfulness is ok to a point but nowhere near enough for this kind of pain. It's good to go though and then at least you can say you've tried it!
Really hope that helps a bit and I wish you all the best.
Heidi
Thanks for the kind words Heidi - god knows people who don't have this condition simply cannot even come close to appreciating the pain.
The pain specialist I had been seeing did mention the possibility of a DRS but for some reason that went off the table in favour of a pain clinic at some point in the next few months. I think I got a bit unlucky with the particular pain consultant I saw - a remarkable lack of sympathy or explanation of his thought processes.
The (relatively) good news is that the surgeon who did the original op before moving abroad for a few years is now back in the UK so I'm going to go and see him and hope he takes some sort of responsibility for putting me on the right path. I imagine it may be a good few weeks before I get to see him but will let you know what happens.
All the best,
Henry
Hi Henry, you put it very well about being able to understand this pain. People wouldn't be able to know how intense it is. I've often said I could do with gas and air!
I am currently investigating deep brain stimulation! Will let you know how I get on!
Yes please keep in touch and let me know how you are doing.
Take care
Heidi
I lost my life to this when i was 25... about to graduate from college and totally taken down by this
Henry was your Hernia repair using mesh ? If so there is a very good face book group with many mesh sufferers.
It was - I've asked to be added to a group called Fighters And Survivors of All Transvaginal Mesh And Hernia Mesh/Plugs.. hopefully that's the right one. Thanks
Henry
Henry,I also had a hernia mesh repair. Within a year the mesh had curled and was causing a lot more pain!The mesh was removed.
I'm still struggling with nerve damage but slightly better since having the mesh removed. Could the mesh be your problem?
I have been begging for a specific neurectomy for 15 years.... Always been treated as at best forceful no and wont help find anyone who would--till being just treated as a piece of shit there is no way to treat my 4th lumbar dorsal nerve root... thinking i was just a joke.... No im trying to not die and not being able to get a procedure is the most criminal medical thinking since close to a hundred blocks would freaking cure me till the lidocaine wore off.... and only way to stop those signals it to cut it maybe... 1st rhizotomy cured me for a Month then the nerve root grew back and became immune to FIRE.... Even getting a damn Laser to try to fry the connection failed but the lidocaine put there before the procedure cured me for 2 hours... and i Felt the Laser Burning into my spine and the damn nerve root just got pissed off.... Insanity
Hi Heidi! There was a high specialist in Murcia, Spain, 'clinica Hernia' (but he quiet for health problems a month ago). I have the same problem as you, i was going to do a triple neurectomy but right now, i am lost. Did you find the specialist for the triple neurectomy? Please, let me now!! I also hear from Doctor David Chen in LA.
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