Dr demello Manchester

[Baileydog]

Hi everyone, just to ask advice. I recently posted that I had been referred to dr demello as I asked my g p to do so as I don't know what I'm really supposed to do next or who to see. Can I ask anyone out there, have I done the right thing by asking to see him? As I have never had a confirmed diagnosis will he tell me if I have p n or not? I'm worrying myself now. It's a long way to travel for me so I'm hoping Iv got this right! Any input would be appreciated .

[Rosepetal60]

I think we all worry about these issues and I can understand your worries. I feel you have done the right thing especially as he ? trained with/ under Dr. Robert in France. if you write /type down how you feel it happened, your symptoms and how it affects you daily, I feel that will help you at the consultation. And this way you will go to the consultation prepared. I'm sure all of us on here will be wishing you well for your appointment and will be interested in how the consultation went.

[Baileydog in reply to Rosepetal60]

Thank you so much, that is a lovely reply. I will take your advice !

[Hidden in reply to Baileydog]

Did your GP refer you on the NHS?

[Baileydog in reply to Hidden]

Yes he did finally. I have struggled for nearly 18 months to get to see someone so I called then two weeks ago and asked for his help. I went on to explain my Physio thought it was p n so he agreed to refer me no problem. He didn't know where the best person was for this problem so I told him about the info on here and said I knew of three doctors, demello, greenslade and baranowski. Manchester was closest so he deterred me there. Just ask outright , it's our right to access good treatment .

[Hidden in reply to Baileydog]

That's a good result, I don't know if your GP is in the Manchester trust but anyway, GPs have to ask their superiors for permission to refer to someone outside of the trust, or at least have very good reason to justify doing it, due to funding issues...

Would you want nerve blocks or surgery if that's an option, or do you just want a diagnosis from Manchester and to continue with physio?

[Baileydog in reply to Hidden]

That's a good question! That's why I posted on here as now I have initiated it I'm worried as I'm not sure what I want. A diagnosis firstly, I will definitely continue with Physio but I travel from Cumbria to London to have it done, so it's a commitment. The one thing I was considering is the nerve blocks. Do u have any opinion on them? I'm unsure about them. But I have to try something I think .

[Hidden in reply to Baileydog]

I've never had them... I have pelvic issues but they don't seem to be related to the pudendal nerves

[Hidden]

Either way, it's worth seeking a specialist opinion.

Have you tried stretching or seeing a physio?

[Baileydog in reply to Hidden]

Iv been attending sayer pelvic pain clinic in London and Iv had pelvic floor therapy for a year now, I do stretching as well . It's the groin pain and pelvic spasms that are really painful .

[Kphee21]

Hi I am currently under Dr Demello and his team I have had 2 pudendal nerve block injections that do seem to help some what. He truly is a very understanding Dr and is very approachable. He recently reviewed one of my scans and has advised that I also have pelvic congestion syndrome he immediately referred me to another Dr for advise with this condition. You are in good hands hope you get some relief too x

[Baileydog in reply to Kphee21]

That's good to know that's he's approachable! Cani ask you, did you have any tests/ examinations or scans done previous to your referral to dr demello. I haven't had anything done as my g p has always said that nerve issues were hard to treat, hence no treatment at all really other thank lyrica which does help somewhat. That's why I have paid and got treatment privately .im afraid when I go to see demello that I'm not armed with the right information .

[1980natty in reply to Kphee21]

Hi, may I ask what kind of scans diagnosed pelvic congestion please? I am a patient of Demello before he retired and I’ve had decompression surgery. I’m due to go back to whythenshaw for hopefully a nerve block but I would like to ask for this scan. Thanks

[joanne8john in reply to 1980natty]

Hi I have only just found out about De De Mello retirement however he had mentioned to me that he was thinking about doing so .After his Father died I was told by the staff Dr De Mello had collapsed so he had to take time off

Dr De Mello had been training new colleagues to overtake his work .

My last Impar Ganglion Block with Dr De Mello with the new trainer was back in Dec 2019 .

My next injection was with a new Consultant and I wasnt impressed with his bedside manner .

So that was February 2020 .the injection wasnt successful .

Since then I have been advised no injections etc because of Covid .

I am now on pain patches.

I will now be with a new Consultant I assume Dr De Mello reffered me to .

This time it's the Holistic Health Approach.

Still having the Impar Ganglion Blocks ..no sedation is used.

Physiotherapy. And Group talks.

So I hope everyone who was with Dr De Mello finds another caring Consultant a person who has understanding and Empathy yet honesty ..Dr De Mello will be hard to follow .

Fortunately I believe I am in save hands and my new Consultant I could tell cared .

It's so important because they are dealing with a rare and extremely difficult condition.

We suffer and no one can see it .

It's all in your head ..yes it is in a way .

A false message but this pundendel is a nerve that doesnt forget easily.

[Baileydog in reply to joanne8john]

Hi,I have just been to wythenshawe in January for my puedendal nerve injections. Dr de mello has unfortunately indeed retired. Such a much needed consultant in our cases but I wish him a long healthy retirement. I’m now under dr vyawhare she trained under dr demello. She is caring, knows her job well and I have no worries thatI’m in her hands. This injection was Long overdue due to Covid pandemic but I have such relief from it. So I wish you all well. Stay safe x Sandra

[1980natty in reply to Baileydog]

So glad to hear your block worked! I had on on January 7th abs it’s not worked at all, it’s the first block I’ve had that hasn’t worked ☹️

[Baileydog in reply to 1980natty]

It’s such a lottery with them isn’t it. I’m sorry you didn’t get any relief from yours. I hope it’s better luck next time for you.

[1980natty in reply to Baileydog]

Meeee too! Xxxx

[joanne8john in reply to Baileydog]

Yes My New Consultant explained to me that just to hit on the correct nerve is extremely difficult, there are so many if them .Also the pundendel Nerve is one that doesnt forget easily.

My pain started after a really bad fall from the kitchen top to a hard tiled floor right at the bottom of my spine .

Then the pain began very gradually

I suspect many of you know .

I call it my monster inside.

Good Luck to Everyone.

We are in this Tovether .

B x

[joanne8john in reply to 1980natty]

Hi Well sometimes the first one can cause a flare up After your second one you may have a better response.

It's been over a year since my last injection .

Isnt strange how you think your suffering alone until you go to were people actually understand your pain

Its awful to be told it's for life , it's also a relief to be able to out a name to your pain and know why and what makes it worse.

I hope your next injection works well .

Take care .

B

[joanne8john in reply to Baileydog]

Hi Sandra .I am really pleased for you that at last you have received your treatment.

I travelled a long way to have my treatment.

I am now nearer home and waiting for my next Impar ganglion block. .

Last Sunday I received a phone call from the Pain Management.

At The Baguley Suite .

I explained that I was now with a New Consultant

I am offered more help .

So a Holistic Approach this time.

I know if it doesnt work out I can then try The Walton Centre in Liverpool

Have you or anyone you know bought a cushion that works.

I have bought so many .

Thank you B .

[Baileydog in reply to joanne8john]

I have bought so many too but my go to is the twin cheeks. It’s from America but I use it every day. Dr demello advised this cushion. It was strange at first but now I love it. I’m glad you too are finding ease.

[Kphee21]

I have had MRI ,ct scan etc all to rule out other things all scans came back clear apart from pelvic congestion. It was one of Dr Demellos colleagues at wythenshawe that examined me and diagnosed pudendal nerve. I had to take 6 months off work due to pain but have now been able to return after the nerve blocks he also told me to not let anybody do any manipulation whatsoever as this wont help. All the staff are wonderful at the pain clinic it's worth a try, feel free to ask me anything at all. The pudendal hope site does not recommend pelvic floor exercises with PNE ask his advice when you see him. I have met lots of other women at the clinic who all say he has given them their life back x

[Baileydog in reply to Kphee21]

Thank you . It's such an awful journey, it's hard to know what to do and where to go for help and who to believe in. I have tried so hard to find ways to help me recover. I'm not sure I believe in a cure but even relief would be something. Can I ask how do they actually diagnose ,? Are you on any medication for it ? It's good to know that you actually get relief and it's good to hear you have been able to return to work. Do you have entrapment?

[Hidden in reply to Kphee21]

When you say manipulation does this include chiropractic treatment?

[Baileydog in reply to Hidden]

Hi,

I had internal trigger point release, and I have chiropractic treatment once a month and deep tissue massage for tight glutes, piraformis and hamstrings. Also acupuncture. It’s been a long journey but all of these things together calm things down . At least for now

[joanne8john in reply to Kphee21]

Hi How are you now .I note 4 years ago your message was left on here .

I do hope that you are keeping well .

B X

[Kphee21 in reply to joanne8john]

Hi not good I'm afraid a lot has happened since I last posted..how are you?

[joanne8john in reply to Kphee21]

Hi Kphee.I've just had my first impar ganglion block for around 4 years

I'm now under the care of Dr Gadiyar at Rochdale/Fairfield Hospital.

He will now be helping me .

I've to rest for 24 hours then see how I am.

Next the new sonic treatment in my spine instead of facett joint injection.

Over due by over 4 years re Covid

[Kphee21 in reply to joanne8john]

Let me know how you get on hope you get some relief

[Kphee21]

The nerve blocks are diagnostic and can sometimes calm the nerve completely he told me. I was on nortryptyline,tramadol and had tried other pain relief also. I am now taking none after 2 lots of injections, I still have some discomfort and have off days but nothing like I had. My husband would come home and find me in tears with the pain curled up on the sofa. I hope you too get relief from the injections as I have. I emailed Dr Demello whilst waiting for my appointment to explain my situation and he got me an appointment sooner x

[Baileydog]

Your reply fills me with some kind of hope that I am on the right path. The clinic I attend does not agree with injections as they say it covers up the problem, but I read somewhere that the brain and nervous system needs some respite from the pain , if the nerves quieten down as you say then it's a help . Are you able to sit? Also I would like to get my life back on the right track and start living my life again. It's good to hear that you are able to be off your medication.

[Kphee21]

Hi yes I can now sit. My job is mostly sitting on an uncomfortable day I sometimes use a cushion but otherwise yes. Yes the medication did cause me to gain nearly a stone I have now lost 10 pound. Please let me know hw you go on xx

[1980natty]

Hi Baileydog. Inwanyed to find you as I have been speaking to the most lovely lady today and she was telling me your amazing news about pudendal nerve blocks, I had one on June 3rd so I’m just waiting for it to kick in 🙏🏻 I really hope it does as I’d do anything to be able to sit again! .... I haven’t sat for 12 weeks now and I just want some normality back! ..... de de mello put me on the waiting list 8 weeks ago so it’s been an unbearable journey..... how

Long did your blocks take to work? How regularly can you have them? We fly to Australia in September and if I could sit by then that would be amazing!

Sorry for all the questions but I have another, are you having physio? I’ve been seeing a pelvic health physio and I think that helping too!

I believe your a member of DCT too (I joined last week)

I’d love to hear from you. My name is Natalie x

[Moomoosmum in reply to 1980natty]

hello natty, I live in the Manchester area so have written this Dr name down. I'm due to see a different one at Stepping Hill on Tuesday, not sure what he is like.

Have you noticed any relief yet from the nerve block? i had one done on 25th June, Dr said it could get worse before better. it's still at the worse stage!

could i ask what DCT is?

Many thanks

[Kphee21 in reply to Moomoosmum]

Hi have you managed to get any further with you treatment did you have your injections at wythenshawe I too would like to know what DCT is x

[Moomoosmum in reply to Kphee21]

Hi. I saw dr de Mello in august. He didnt think I have pn. He went back into my past med history and thought it was related to a neurological event I had back in 1998.

He still wanted me to see his physio Fiona, to determine for sure whether it was PN or not. I didnt rate her to e honest.

Anyway, de Mello said he wanted me to see a neuro at Salford. Given the time it takes, I saw him privately and now see him on the nhs (apart from yesterday when j saw him at the BMI) I've had a full MRI and lots of blood tests to rule nasties out.

So those results are back. I dont have anything like MS or parkinsons etc. But it doesn't say what this is.

He does think its something in the brain causing the movement. Hes referring me to a physio to train the brain to not make these movements. That should be any day now.

Hope everyone else is getting answers

[Kphee21 in reply to Moomoosmum]

Hi I don’t rate her either and it takes months to get appointments with wythenshawe pain team and injections are so far apart sometimes a year.

Can I please ask who you are seeing private as I’m struggling to find anybody private I’ve been waiting a year for an appointment at Salford neurosurgery regarding my back and still no appointment x

[Moomoosmum in reply to Kphee21]

gosh, a year! I saw the neuro the following day at the BMI in Cheadle. since the admins pulled my last thread about dr de M, would you like to message me on [e-mail] and will give you the lowdown.

[joanne8john in reply to Moomoosmum]

Hi I thought I would advise you that Dr WF De Mello has now retired. I last saw him in late 2019 when he did mention to me about his retirement.

I was shocked and scared because I had been with Dr D for a long time .

My last injection was February 2020 while Dr De Mello was not feeling well .

Then Covid came .

Some time ago I did think it was odd receiving a phone call from a Pain management Team .

Anyway i answered all questions.

(Still thinking i would soon be seeing Dr D ).

Two weeks ago I was sent to a face to face consultation with a Consultant with the Holistic Health Approach.

He was so nice and understanding.

I was amazed at what was going to be offered .

This new Dr S asked me if I wanted to consider leaving Wythenshawe Hospital.

After listening to him I decided to be discharged from the Care of Dr De Mello.

At that time I was unaware of his retirement I only found out 2 days ago and yes I was emotional.

I also believe Dr De Mello had referred me to the new Consultant.

So I hope you find your next Dr

I have suffered for over seven years with chronic pain due to pundendel nuorthopy.

I recieved Impar Ganglion Blocks in the lower spine.

B ...

[Baileydog in reply to joanne8john]

Hi can you tell me where you are going now and if it is nhs, sorry and what else do they do apart from injections?regards

[joanne8john in reply to Baileydog]

Hi Well it's certainly been so long now since I received any injections for my pain.I am under the care of Dr Gadiyar. He will be now giving me the Impar Ganglion block also the electric treatment that burns away the nerves and it will take 10 / 12 months for them to regrow.

I continue on various medication to include pain patches.

On the 10th February I finally go for a Covid test and if clear five days later will undergo my treatment .

I do hope that many of you who will also have been suffering during Covid are now being contacted by the pain management team.

[1980natty]

How are you getting on hon? It’s been a long time xx

[joanne8john in reply to 1980natty]

Hi My situation is all or most of my medication is because of the Pudendal Nerve .Pain Patches however such as today I am in a lot of pain .

Flare ups I do believe have been worse during Covid 19

This problem is the nervous System and if I become a little sad or well on something bad my pain will increase

There has been of course for many people all over the world a huge emotional impact and this then reflects on our nerve

So I find that going to bed early is good , getting enough sleep not bending too often that is something that upsets my nerve .

Certainly be careful re constipation that's a complete no no.

And for me I dont know very well these days when my bladder is getting full so I just go often

A full bladder can upset my nerve .

So now I am waiting to receive my Impar Ganglion Block. And also a telephone Consultation from pain management Pschology Screen.

So I will be answering more questions.

So have you bought a cushion that works

I have bought several.

None worked .

I do hope that you are staying well

B x