Hi Mandy - just a thought about the bus.
I've just travelled from Kent to Wiltshire by train and tube, after a really stressful couple of weeks at the bedside of a close relative in hospital. Lots of sitting, and I do mean lots. I took my Togu Air Active cushion everywhere with me (and yes it was a real nuisance) and not once did I sit without it, not even for a moment. My pain levels are the same as always, despite all this. I can recommend this cushion. It is pricey but for me it has been worth every penny.
hi advice needed for getting an appointment
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spikehades
- Posts: 18
- Joined: Fri Dec 10, 2010 4:49 pm
Re: hi advice needed for getting an appointment
i wonder if there are any Bristol Team patients amongst us. I had an initial consultation with Dr Greenslade and Mr Wong. Dr Greenslade didnt charge me because he was very late for my appointment (his train had been delayed), he is such a genial fellow though. Since, I have been with an NHS nuero and after 6 months, 2 MRIs, 1 pelvic ultrasound, he says he cannot help me further, although he did agree it was PN but admitted his experience was limited. Amitryptiline and GAbapentin has been effective for me and I find I can sit all day with minimal pain, and I even managed a short tour of S.E asia with lots of flights. But my concern is entrapment, and if I am entrapped sooner or later things will get worse. Im just wondering if there are people who have gone ahead with the surgery in the UK. The American members seem to have flare ups with nerve blocks, whereas the UK board members don't - Im still trying to figure tht one out....
Anyway, hope everyone's enjoying the summer!
Anyway, hope everyone's enjoying the summer!
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: hi advice needed for getting an appointment
Hi Spikehades,
I've just asked that same question in another thread. Where are all the Bristol post-opers? Calluna and I are both on the list for surgery there but I haven't got an appointment to see the surgeon yet. . . . it's the NHS after all.
How did you progress to the NHS neuro, was that through Dr Greenslade? You didn't mention any steriod or botox injections ? Are they unable to locate the entrapment? Sorry so may questions.
It's great that you are managing so well with medication. I haven't heard from Manon recently but maybe the planned physio would help further. I think she was having huge problems finding someone able and willing to train in France, unfortunately.
Anyone out there who has had PN surgery in Bristol let us know please.
Take care.
Helen
I've just asked that same question in another thread. Where are all the Bristol post-opers? Calluna and I are both on the list for surgery there but I haven't got an appointment to see the surgeon yet. . . . it's the NHS after all.
How did you progress to the NHS neuro, was that through Dr Greenslade? You didn't mention any steriod or botox injections ? Are they unable to locate the entrapment? Sorry so may questions.
It's great that you are managing so well with medication. I haven't heard from Manon recently but maybe the planned physio would help further. I think she was having huge problems finding someone able and willing to train in France, unfortunately.
Anyone out there who has had PN surgery in Bristol let us know please.
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: hi advice needed for getting an appointment
Yup, still waiting here, haven't got an appointment yet. I was told 6 weeks ago that I'd been referred to see the surgeon urgently. So I'm hoping to hear soon. I shall be chasing on Monday. And helen, I hope you hear from them soon as well.
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: hi advice needed for getting an appointment
I have e'd ITV's daytime programme and a Scotish one, but just got a generic 'thank you, we may use in future' reply and nothing else. That was around 6 months ago. I also applied for Embarrasing Bodies, but they had already started filming that series. I will give it another go, but as pointed out they really need someone with no diagnosis so they can help 'cure' them.mandymand wrote: p.s has anyone thought about going to a magazine with this? to tell of their struggle to get diagnosed, it would make a great story and get a bit more awareness out there, although i will admit even if i do get diagnosed with this, i'd feel i would be too embarrassed to tell the world my symptoms but they maybe a brave one amongst us that could put the word out, just a thought.xxx
I have promised to write 'my story' and send it to some magazines but I am being a bit rubbish about doing it, probably because my short story writing skills are rubbish too, plus I can't spill !
I will do it, well try to, because I actually think it makes a great story too.
Someone in jest (I think) on another thread suggested a bottom calander. Ha Ha ! I think that is a jolly good plan. "We are going to need considerably bigger buns "
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: hi advice needed for getting an appointment
good 4 you helen, i did think about embarrassing bodies myself, but i really couldn't have every one in my town knowing about where all my pain was and all the other embarrassing symptoms i've had (i think it could poss make my life worse lol) , i've watched it loads hoping one day someone with my symptoms would come on and i'd know what it was..glad i've finally found out from here, but it would be great to get the story out as i'm sure there are others out there like us that have suffered for years and no doctor can work out why it's happening and it may help them get diagnosed quicker in stead of this endless pain.
i think with the mags, if you tell them what your story is about they get their writers to write the story for you, if you have a look at the side of the story it always says it's writen by someone else, i'm sure one of them could would be intrested, you r very brave if you do, managed to get your story printed, please let us know if you do, xxx
i think with the mags, if you tell them what your story is about they get their writers to write the story for you, if you have a look at the side of the story it always says it's writen by someone else, i'm sure one of them could would be intrested, you r very brave if you do, managed to get your story printed, please let us know if you do, xxx
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spikehades
- Posts: 18
- Joined: Fri Dec 10, 2010 4:49 pm
Re: hi advice needed for getting an appointment
I went to see the surgeon privately before I saw Dr Greenslade, his name is MR Wong and he has a lot of experience in pelvic surgeries. He teams up with a Mr Patel who is neurosurgeon for pudendal ops. I don't know how many he has done however. But I do know he trained with Dr Robert in France. Mr Wong is very approachable and his consult is £150.00 in Bristol or Cardiff.
My symptoms are well under control, at the moment i just have paraesthesias (crawling sensations), there is no pain now. Initially I had paraesthesias, nociceptive pain, neuropathic pain (including electric shocks and burning), foreign object in rectum (sympathalgia), and regular bouts of urinary frequency. Thankfully all of those symptoms have abated; my guess is the nerve has healed somewhat. But it also indicates that it was damaged somehow, and as I have not been physically active since the injury, perhaps if I become more active again I may reinjure the nerve. Thus, even If I am not strictly entrapped, somewhere in my pelvis there is a potential to catch my nerve and cause it to stretch or fray. Therefore.... How should I proceed?
I have not had nerve blocks yet. for one I am unconvinced of the efficacy or the methodology of their action. Steroids do reduce inflammation, but an entrapped nerve can only be unentrapped if it is due to acute inflammation within roughly the first 6 weeks of injury - as the inflammatory process generally lasts for this length of time.This would also mean that anti-inflamatory medication would be effective, but we have not heard that this is the case. Also, if it is an inflamation/healing cycle, all a steroid shot would do is to temporary pause the cycle as eventually whatever was irritating the nerve would still exist. However, if it is a case that it is the ligament or the fascia(alcocks canal) that is inflamed (due to injury), then one can see why the steroid shot may be effective. In saying this, Dr Greenslade believes in the efficacy of Nerve blocks, and he is clearly more qualified and experienced than I !
I am planning again to see Dr Greenslade privately just for some advice on how to proceed. Now that I have 3 consultants who agree on the diagnosis 2 privately (anaesthesiologist and surgeon) and 1 on the NHS (neurologist), my GP would be hard pressed not to refer me for further treatment, as my neurologist clearly stated on his letter "if the condition does not improve he should be referred to a specialist in London or Bristol".
As for surgery, the Americans on the board do make me apprehensive from their experiences, however the literature published by the surgical teams shows that less than 1% get worse. ie: there is a less than one percent chance of long term complication, which is rather good. Now if we compare surgical outcomes with other nerve entrapment conditions which are treated after such a delay 3, 4, 5 years or more; the success rates are comparable if not better for PN release.
One last thing, start leaning medical vocabulary - clinicians will be forced to show you more respect if you use their language. Ie: stop calling a foreign object sensation a lump - called it a foreign object! Start learning to be more articulate about your pain, learn to differentiate between neuropathic, nociceptive, use the VS scale for pain to explain the severity of it. Write things down , then go to the doctor. Call in advance and book a longer consult, talk through the options with them, become involved in your care! If you have complaints, dont get angry or frustrated write to your gp, and to the practise manager. You can put comments about your gp practise on the nhs.uk website. Become an active citizen!
My symptoms are well under control, at the moment i just have paraesthesias (crawling sensations), there is no pain now. Initially I had paraesthesias, nociceptive pain, neuropathic pain (including electric shocks and burning), foreign object in rectum (sympathalgia), and regular bouts of urinary frequency. Thankfully all of those symptoms have abated; my guess is the nerve has healed somewhat. But it also indicates that it was damaged somehow, and as I have not been physically active since the injury, perhaps if I become more active again I may reinjure the nerve. Thus, even If I am not strictly entrapped, somewhere in my pelvis there is a potential to catch my nerve and cause it to stretch or fray. Therefore.... How should I proceed?
I have not had nerve blocks yet. for one I am unconvinced of the efficacy or the methodology of their action. Steroids do reduce inflammation, but an entrapped nerve can only be unentrapped if it is due to acute inflammation within roughly the first 6 weeks of injury - as the inflammatory process generally lasts for this length of time.This would also mean that anti-inflamatory medication would be effective, but we have not heard that this is the case. Also, if it is an inflamation/healing cycle, all a steroid shot would do is to temporary pause the cycle as eventually whatever was irritating the nerve would still exist. However, if it is a case that it is the ligament or the fascia(alcocks canal) that is inflamed (due to injury), then one can see why the steroid shot may be effective. In saying this, Dr Greenslade believes in the efficacy of Nerve blocks, and he is clearly more qualified and experienced than I !
I am planning again to see Dr Greenslade privately just for some advice on how to proceed. Now that I have 3 consultants who agree on the diagnosis 2 privately (anaesthesiologist and surgeon) and 1 on the NHS (neurologist), my GP would be hard pressed not to refer me for further treatment, as my neurologist clearly stated on his letter "if the condition does not improve he should be referred to a specialist in London or Bristol".
As for surgery, the Americans on the board do make me apprehensive from their experiences, however the literature published by the surgical teams shows that less than 1% get worse. ie: there is a less than one percent chance of long term complication, which is rather good. Now if we compare surgical outcomes with other nerve entrapment conditions which are treated after such a delay 3, 4, 5 years or more; the success rates are comparable if not better for PN release.
One last thing, start leaning medical vocabulary - clinicians will be forced to show you more respect if you use their language. Ie: stop calling a foreign object sensation a lump - called it a foreign object! Start learning to be more articulate about your pain, learn to differentiate between neuropathic, nociceptive, use the VS scale for pain to explain the severity of it. Write things down , then go to the doctor. Call in advance and book a longer consult, talk through the options with them, become involved in your care! If you have complaints, dont get angry or frustrated write to your gp, and to the practise manager. You can put comments about your gp practise on the nhs.uk website. Become an active citizen!
Re: hi advice needed for getting an appointment
Good advice, Spikehades! As for your own case, I don't really have any advice to give. You don't experience pain anymore, which is great. However, you are not physically active, which can be frustrating. But I'm not convinced that the pudendal block can give you back 100% functioning. No one on this forum has had that kind of experience. To the contrary, many people here have been made worse off by the block.
Given that your pain symptoms have relieved themselves on their own, I might be inclined to see if the other symptoms do as well before attempting any invasive procedures such as nerve blocks.
Given that your pain symptoms have relieved themselves on their own, I might be inclined to see if the other symptoms do as well before attempting any invasive procedures such as nerve blocks.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: hi advice needed for getting an appointment
Thats fantastic Spikehades,
You mentioned an injury, what happened? I take it this was directly attributable to your initial symptoms. Are you managing without medication?
As Lernica said it's difficult to advise now that you have improved so well and your main discomfort is gone.
It seems that all an injection into the pudendal nerve does, is indicate that it is indeed the pudendal nerve that has caused the problems. If it relieves the symptoms that is.
A botox injection into a muscle, say spasmed piriformis or obturator internus (if the muscle was thought to be irritating or entrapping the nerve) may be curative as it can paralyse the muscle for 3 months. It then may 'learn' to relax.
Another interesting point may be how long it took for your symptoms to subside. . . . One neurologist told me that deep soft tissue injury can take up to 12 months to feel better.
I suppose one scenario could be that you had some cyclical inflamation, due to the injury, that slowly abated given your changed lifestyle. Perhaps a small amount of scar tissue/lesion is still irritating the nerve, causing your remaining paraesthesias ( see I'm learning the lingo )
Dr G will advise you best, although it will be 'interesting' to see how you do when more active. Be cautious and take things easy.
Helen
You mentioned an injury, what happened? I take it this was directly attributable to your initial symptoms. Are you managing without medication?
As Lernica said it's difficult to advise now that you have improved so well and your main discomfort is gone.
It seems that all an injection into the pudendal nerve does, is indicate that it is indeed the pudendal nerve that has caused the problems. If it relieves the symptoms that is.
A botox injection into a muscle, say spasmed piriformis or obturator internus (if the muscle was thought to be irritating or entrapping the nerve) may be curative as it can paralyse the muscle for 3 months. It then may 'learn' to relax.
Another interesting point may be how long it took for your symptoms to subside. . . . One neurologist told me that deep soft tissue injury can take up to 12 months to feel better.
I suppose one scenario could be that you had some cyclical inflamation, due to the injury, that slowly abated given your changed lifestyle. Perhaps a small amount of scar tissue/lesion is still irritating the nerve, causing your remaining paraesthesias ( see I'm learning the lingo
)Dr G will advise you best, although it will be 'interesting' to see how you do when more active. Be cautious and take things easy.
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: hi advice needed for getting an appointment
Spikehades, I am really pleased that you have reduced your symptoms so much but can also understand your concerns that if you returned to normal activities it would all start up again. It would seem a good idea to have another consult with Dr G, as things have changed for you since you last saw him.
I have been having nerve blocks with Dr G (on the NHS), had my third one on Wednesday. I too don't believe from everything I have read that they will have any longterm effect even though Dr G seems adamant. He did say that if they don't work he will refer me to Mr Patel for surgery. I now have to wait 6 weeks and will then have a telephone consultation with Dr G. I asked him how long acting are these steroids and he said 'weeks, yes weeks and weeks'.
Dr G did say to me he had done a PN block the day before in his private hospital and I thought, who could that be. No one on this forum that I know of. I asked one of his pain nurses if he did many of these blocks and she said 'oh yes quite a few'. So I can only assume some of these people will have had surgery already.
Calluna and Helen - I would recommend you chase your referrals because Dr G's secretary has been off sick for ages and the paperwork has been a mess/non existent. I'm assuming you've not heard anything yet.
I have been having nerve blocks with Dr G (on the NHS), had my third one on Wednesday. I too don't believe from everything I have read that they will have any longterm effect even though Dr G seems adamant. He did say that if they don't work he will refer me to Mr Patel for surgery. I now have to wait 6 weeks and will then have a telephone consultation with Dr G. I asked him how long acting are these steroids and he said 'weeks, yes weeks and weeks'.
Dr G did say to me he had done a PN block the day before in his private hospital and I thought, who could that be. No one on this forum that I know of. I asked one of his pain nurses if he did many of these blocks and she said 'oh yes quite a few'. So I can only assume some of these people will have had surgery already.
Calluna and Helen - I would recommend you chase your referrals because Dr G's secretary has been off sick for ages and the paperwork has been a mess/non existent. I'm assuming you've not heard anything yet.