still waiting & getting nowhere

[Alan1646]

Jennyp, who used to post, had some success with PRF. There is this report of a cure.
http://www.painphysicianjournal.com/200 ... 33-638.pdf
Unfortunately, it didn't work for me.

[calluna]

Goodness yes, what Helen said. Very much worth remembering that we very often don't hear back from people when things have been a success. Those of us still here are (mostly) those who still have problems.

Anyway fingers crossed for you Andrea!

And one thing - Dr G saying he'll see you in surgery - it is so nice going into the operating room and seeing those two familiar faces there. Dr G is just so kind and reassuring, just what one needs at a time like that.

Hope you don't have to wait long.

[chillijava]

its unfortunate that mr dixon is on holiday for the next 2 weeks or i may have been having the op within 3 weeks, but i think it is now more likely to be end of march beginning april, so not long really, i just hope it doesnt make things worse and that i get some improvement, thanks for all your continued support



andrea

[jennyp]

Hi Guys,
Sorry haven't onto the forum for ages as been doing OK (in the pudendal nerve sense !). I have three rounds of pulsed radiofrequency and found it really helped my pain but it was only temporary relief. Be warned it makes things worse for the first week or two but after that it really dials down the pain, it lasted a good 8-9 months and gradually the pain worsen back to the levels it was before. However I don't think I'll be having it again, I have a really big leak of CSF fluid out of my spine last year ( 6 months after the last PRF). It was out of the lumber region and I don't think it was anything to do with the PRF. There is no mention in the literature of any association and I think the leak was much higher up in my spine than the sacral / pudendal area. I suspect I might have had some cysts on the nerve roots that burst, I also wonder if this is what had caused my pudendal problems in the first place as these have been better since the CSF leak / healed. Happy to answer any questions
Jenny

[chillijava]

just thought i would give you all an update and i am afraid there is nothing to tell at the moment, i have been in touch with dr greenslades secretary by phone and email and as usual no reply and also mr dixons secretary and although she has replied to me some of the time i have still not got my consult appointment with him for the assessment for surgery.
i am soooooooooo exhausted with all of this and again i am having a flare which seems to be worse than normal as i am having bad stabbing pains in the vulval area as well as the constant burning pain i normally have.
is anyone else having problems contacting either of these doctors and pin pointing them down to appointments, as i have said before i am a private patient and i have never known such a poor, if you like, customer service, also anyone any ideas what to do next
andrea

[Jane]

Hi everyone - I am another Jenny P, I have popped on and off for a while but in between have been onto TIPNA which unfortunately has ceased due to the fact that poor Greg was exhausted!
I have read all your comments with such interest - I had four nerve blocks administered by Dr Baranowski after going back and forth to the hospital that did the initial operation that gave me PNe who actually wrote to my GP and suggested that I have psychiatric treatment (we have all been there) then finally onto a Neurologist by which time I had an inkling of an idea through research what it could be. Eventually arrived at Dr B's door as a private patient (his secretary is marvelous by the way), this was funded by the hospital in question not by me. He gave me the diagnosis of PNe and said I would be lucky to get 60% of my life back, I will never forget that day because although I had done some research, no-one told me that this may not be put "right"! He then administered the nerve blocks over a period of time, the last two being in Alcocks Canal, none of which did a halfpenny worth of good. Then onto Prof Carlstedt and had two separate decompressions, in between this a bladder repair. I only had a prolapsed uterus to start with! I am now six years post-op have been on and come off of pregabalin, try to pace my life without too much success, I try to be too active and still live with pain that is generally bearable but sometimes flares up - as we all experience.
I found these websites to be a lifeline in the early days and if I can be of any help to anyone I will gladly do so.
I am now behind with all the up to date technology, if any, being offered to us and just came to the conclusion that this is it and its as good as it gets. I have practically been discharged from the Hospital of Neurology (I am in England). They gave me a "phone appointment" last December and thats about it.
I wish you all well with any operations and problems/pain etc.

Jane

[Painful Man]

Can I just say how useful I find everyone's perspectives on the UK forum. This can be a desperately lonely condition, and as we know, often not easy to talk about.
Andrea, I hope you get some clear communication back soon, having this condition is quite stressful enough. It was interesting to hear Jenny P's and Jane's experience and perspectives. I certainly wonder about level of recovery, it's a big thing to face if sitting is always going to mean a degree of pain. Hence, the unending, it sometimes seems, search for pain relief. I'm still experimenting with my cushions, taking my pregabilin dose up and down, now referred to Mr Dixon and waiting to hear.
P_M

[chillijava]

sorry i havent been hear for a while, but i was hospitalised this week due to a severe ibs flare, with pains that needed morphine!
whilst in hospital i had time to do some thinking concerning my next treatment, as some of you know i am waiting assessment for pn surgery, i should have gone to see mr dixon this week but had to cancel being in hospital.
i have been reading that spinal cord stimulation can be used for pn, ibs and also fibromyalgia, all of which i have, and i have decided that when i have spoken to dr greenslade if he thinks it will work i am going to go for it.
i dont really want pn surgery and also knowing it may not work or might make it worse, puts me off, but as fibro and ibs dont have a cure i thought i might kill 3 birds with 1 stone and get some relief from all of them.
painfulman
mr dixon is really great, good sense of humour and tells it like it is, no airs or graces but very down to earth and a very accomplished surgeon, and i hope things go ok for you

andrea

[vanko]

Hi everyone, I'm new here and I'm looking for a specialist (Doctor) in Ireland who can diagnose Pudental nerve damage or inflamation or at least knows about the pain. If somebody found such a doctor please let me know.
I am in pain in the last year and a half and I don't sit at all except if I have to drive the car to my GP or shop and after I'm in more pain. I am very depressed because I can't find help, can't do anything, spend all my savings, this is not a life, I am so despaired and hopeless, I am trying to be strong but I can't go like that, should I commit a suicide doctors to understand that I can't anymore. My illness benefits will end up soon and I have to apply for Invalidity Pension or Disability Allowance but I don't know what to do. I don't want to be disabled , I want to be normal person able to work and enjoy life.
I was with Doctors many times but they don't believe or don't know and I have to wait months an years which is ridiculous, going through different approaches, was treated at the beginning for hemorrhoids for a month and didn't take my lower back issues into consideration and I got worse.
I have lower back pain (small disc herniation at L5-S1), hip and Si joint pain. Numbness mostly on my right leg, shouting pain sometimes from buttocks down the legs, pain in coccyx, burning pain around anus (getting worse after BM), burning pain in scrotum and penis, have a lot of tension in pelvic muscles. Tested for STD all negative, had to go through cystoscopy - no abnormalities.
Taking Lyrica for almost 2 years, Tramadol is giving me some relief.
I wish I was animal as I see they get more love and care.
I'm so sorry for all people in pain, I know how you feel, I know it's not easy to cope with the pain. Wish you best of luck to get relief.

[janetm2]

Welcome Vanko,
You may get everyone's attention better if you post your story in the welcome center under a new topic. Also ask about a physiotherapist ( I am in U.S. and the therapist actually diagnosed me) since you need help with tight pelvic floor muscles and they can sometimes help with diagnosis or point you in the right direction for other treatment. I am so sorry you are in a bad way all around. I hope someone can give some points of contact for treatment so you can focus on getting some pain relief. Hang in there many have been in your position and we all have been in some level of pain and or despair but there is hope, I am finally getting real relief after surgery and had my doubts at times(relating to the humanity seemingly to only apply to animals!). Good luck
janet