Hello
I live in London, while my mother, a 55 year old woman lives in South Africa. My mother suffers from Pudendal Neuralgia and has done so for the past four years. She has tried every type of doctor, ranging from gynaecologists, neurologists, homeopaths, general practitioners and more, and a countless number of drugs which have not helped at all, and in many cases made things worse. She too has had a variety of scans and a pudendal block which made the symptoms worse.
This has bankrupted her in the process as her health insurance will no longer pay for anything. We are completely at our wits end, and I am appealing to ANYBODY for help. We are open to any suggestions, or experiences that you feel may help, either in the US, UK or South Africa.
Thank you in advance
A Desperate daughter
Treatments in London or South Africa? Desperate for help
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Treatments in London or South Africa? Desperate for help
Hello and welcome 
So sorry that you and your Mother find yourselves in such a dreadful situation Candice. I wonder did the block have any pain relief at all, especially straight after?
Quite a few people on this forum have reported flares from PN blocks (many have had success too) I hope that your mothers worsening symptoms calmed down with time.
I would advise you to read through some of the info on the home pages if you haven't already. I don't know what type of medication has been prescribed in the past but a mix of anti depressant like cymbalta and an epileptic drug neurontion/gabapentin or lyrica/pregabalin is often a good combination. Those drugs can also be taken with tramadol too. Many people find that ice is the best solution tho', in addition to prescribed medication.
In London there is Professor Carlstedt but I'm not 100% sure if he still practices within the NHS although he does have a private clinic http://www.londonnervecentre.co.uk
Dr Baranowski is the other PN Dr. You can find his details on the home pages again. He is a pain management consultant who would normally recommend a block but there is no guarantee it will cause another flare of symptoms of course. It would be a guided block btw. I know that he sometimes recommends a neurostimulator implant for patients http://www.medtronic.com/patients/chron ... /index.htm I think there is more info again about these on the home pages and a few forum people have personal experience of there use. (not me)
Do you know if there was any proceeding injury at all that may have caused your mothers PN ?
I hope you will be able to get the help you need.
Take care,
Helen
So sorry that you and your Mother find yourselves in such a dreadful situation Candice. I wonder did the block have any pain relief at all, especially straight after?
Quite a few people on this forum have reported flares from PN blocks (many have had success too) I hope that your mothers worsening symptoms calmed down with time.
I would advise you to read through some of the info on the home pages if you haven't already. I don't know what type of medication has been prescribed in the past but a mix of anti depressant like cymbalta and an epileptic drug neurontion/gabapentin or lyrica/pregabalin is often a good combination. Those drugs can also be taken with tramadol too. Many people find that ice is the best solution tho', in addition to prescribed medication.
In London there is Professor Carlstedt but I'm not 100% sure if he still practices within the NHS although he does have a private clinic http://www.londonnervecentre.co.uk
Dr Baranowski is the other PN Dr. You can find his details on the home pages again. He is a pain management consultant who would normally recommend a block but there is no guarantee it will cause another flare of symptoms of course. It would be a guided block btw. I know that he sometimes recommends a neurostimulator implant for patients http://www.medtronic.com/patients/chron ... /index.htm I think there is more info again about these on the home pages and a few forum people have personal experience of there use. (not me)
Do you know if there was any proceeding injury at all that may have caused your mothers PN ?
I hope you will be able to get the help you need.
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Treatments in London or South Africa? Desperate for help
Candice, I'm sorry your mom is having such a rough time. Like Helen, I would be interested know if your mom had even a few hour's relief from the nerve block but then later got worse when the steroid kicked in. I was thinking if your mom doesn't have insurance it might be cheapest to see one of the French doctors.
Violet M
Violet M
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Treatments in London or South Africa? Desperate for help
Hi Candice,
I sincerely hope you mom managed to get help and that she is much better. Being said that, I am also a South African living with PN for the past 3 years and you know the story. Go from one dr to the next and there is just no light at the end of a very long and dark tunnel. Did she manage to find a doctor here in South Africa? I am soooo desperate! Please let me know!
Kind regards,
Esme
I sincerely hope you mom managed to get help and that she is much better. Being said that, I am also a South African living with PN for the past 3 years and you know the story. Go from one dr to the next and there is just no light at the end of a very long and dark tunnel. Did she manage to find a doctor here in South Africa? I am soooo desperate! Please let me know!
Kind regards,
Esme
Re treatment in South Africa? Desperate for help
Hi Esme,
I too live in SA and have PN caused by surgery for a batholin's cyst in 2014. I would like to explore more with you about what you have done and who is treating you. Blocks have not worked for me and medication is not either. Would like to discuss further with you as we live in same country.
I too live in SA and have PN caused by surgery for a batholin's cyst in 2014. I would like to explore more with you about what you have done and who is treating you. Blocks have not worked for me and medication is not either. Would like to discuss further with you as we live in same country.