Recommendations

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AL456
Posts: 13
Joined: Fri Sep 20, 2024 9:07 am

Recommendations

Post by AL456 »

34 yr old Male. I’ve posted previously about an injury I sustained. I landed on my buttocks/lower back after losing consciousness and was diagnosed with a coccyx fracture. From then (4 months ago) until now, I have had persistent numbness to the penis, scrotum, and buttock region. It significantly impairs my sexual function. The neurologist has diagnosed it as a probable pudendal nerve issue but can’t find where as MRI’s have not detected any nerve damage. He therefore can’t diagnose a compression. I’ve been advised to do further nerve testing interstate for the pudendal nerve (I’m not sure how helpful this would be), and besides that I have been engaging with a pelvic floor PT for weeks now with no change in symptoms. I am on a waiting list to see one of the only specialists in Australia who treat pudendal nerve issues however it’s a 7 month waiting list to see him. I have been told by doctors to “wait for the nerve to grow back as nerves take a long time to heal”. This isn’t really a firm diagnosis but a theory they have. My issue is that there may be a compression that has been undetected and based on symptoms it is a legitimate concern. If I were to seek opinions overseas, which doctors would you recommend for my particular situation? Doctors that have a proven record with diagnosing and treating this issue?
Last edited by AL456 on Sat Oct 26, 2024 4:22 pm, edited 1 time in total.
Pain_Darren
Posts: 16
Joined: Sun Aug 18, 2024 1:46 pm

Re: Recommendations

Post by Pain_Darren »

edit
Last edited by Pain_Darren on Fri Oct 25, 2024 8:49 am, edited 1 time in total.
AL456
Posts: 13
Joined: Fri Sep 20, 2024 9:07 am

Re: Recommendations

Post by AL456 »

Yeah he’s a 6 - 7 month waiting list! I’ve already had this for 4 months now. It just seems too long.
Can I request 3T MRI from any doctor? I’m finding it hard to find anywhere in Australia that does 3T.
Yeah I may have to consult overseas.
Are you in Australia also? Did you have a problem here as well?
Pain_Darren
Posts: 16
Joined: Sun Aug 18, 2024 1:46 pm

Re: Recommendations

Post by Pain_Darren »

I heard of a lady getting a MRI through prof Vancaillie at a clinic called WHRIA
AL456
Posts: 13
Joined: Fri Sep 20, 2024 9:07 am

Re: Recommendations

Post by AL456 »

I called them a few weeks ago and they put me onto the doctor with the 6 - 7 month waiting list. There’s a doctor in Melbourne who I believe does the injections etc.
Honestly Australia needs to get with it with this issue. People shouldn’t have to seek out this hard to find treatment and wait ridiculous waiting times.
Pain_Darren
Posts: 16
Joined: Sun Aug 18, 2024 1:46 pm

Re: Recommendations

Post by Pain_Darren »

I am not Australian
They should not be making you wait that long.
Consult a surgeon overseas such as Dr Renaud Bollens.
Do not let them dictate your health.
6-7 months is pathetic
Darren
King
Posts: 5
Joined: Mon May 06, 2024 10:59 am

Re: Recommendations

Post by King »

Hello, there’s only two doctors in Australia who are experienced in pudendal neuralgia, one is Prof Vancaillie and the another one is Dr Jason Chow, both are practicing in Sydney, as I know Prof Vancaillie only consulting on women. If you wish to have the 3T MRI scan, you can ask your GP or specialist doctor for a referral to Dr Toos Sach in Sydney, he had a specific technique on the Tesla 3T MRI to analyze whether there’s an entrapment on the course of pudendal nerve, but you can’t only rely on the 3T scan as sometimes it shows you doesn’t have any entrapment signs and the result doesn’t mean you don’t have an entrapment.

I have also contacted Dr Bollens through email, most people said he’s honest and helpful, maybe he used to be a good doctor but I think he has changed his mind after he start operating in Dubai. He asks for 70 Euros for a video consultation to diagnose whether you have PNE or not, he send me few pages of guidance about the surgery and said after I paid the consultation fee, he will send a message to arrange a WhatsApp, FaceTime or Messenger video chat, but after I paid to him and sent him the bank transfer proof, he didn’t respond to me, I have to sent him a couple of emails asking the date for the video consultation, he replied me after a month and said he will have video session in the coming Sunday and ask me to book the appointment from his website, when I went to his website and answered some questions about my condition, I need to pay another 70 Euros to have the appointment. I emailed him again and remind him that I have already paid the consultation fee and reattached the payment proof to him, he didn’t reply to me anymore. I also emailed to his clinic and a guy replied and ask if I could resolve the matter by myself with the doctor, finally he didn’t assist on the matter. If you want to have the surgery I think you have to think very clearly for the potential risks before you go, Luckily it’s just 70 Euros, as a doctor he’s is very irresponsible.
Last edited by King on Tue Nov 12, 2024 12:15 pm, edited 1 time in total.
Pain_Darren
Posts: 16
Joined: Sun Aug 18, 2024 1:46 pm

Re: Recommendations

Post by Pain_Darren »

That is very interesting.
Have you been operated on by Australian surgeon?
I wonder how long some people are taking for improvements, I've had weird sensations after surgery.
A searing spark sensation
Darren
King
Posts: 5
Joined: Mon May 06, 2024 10:59 am

Re: Recommendations

Post by King »

Sorry to hear that you are still feeling that.
I am still considering whether to go for surgery as I don’t know which kind of approach will be appropriate for my situation.
I am suffering from unilateral perianal pain for 15 months, almost underwent all conventional treatments, only the nerve block can relief the pain for 5 hours. As I know laparoscopic approach only benefits patients who have an entrapment between the two ligaments. Unfortunately, I got foot numb pain and heel tingling after the nerve block and hydrodissection, so I suspect that I might have entrapment or adhesion around my piriformis which affected the sciatic nerve, if this is the case then I would have to go for the transgluteal approach.
AL456
Posts: 13
Joined: Fri Sep 20, 2024 9:07 am

Re: Recommendations

Post by AL456 »

Having a 3T MRI on Monday, hoping to get something show up. I can feel the burning either side of the coccyx. And the symptoms of numbness and dysfunction with no improvement in 4 months.
I’m on the waiting list for the Australian surgeon. 6 months though.
A lot of people are telling me to just get a consultation with Dr Bollens etc, but there’s mixed reviews.
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