Hi,
I'm really confused. I was wondering if someone might be able to offer some advice. I have just posted up my "success story" in the success story section, because as a sufferer of PN/PNE (still not sure which) since 2008, I gradually was able to get better over the course of about three years following a gradually increasing sitting regime (starting with 5 seconds 4 times a day, increasing by 10% each week), and in the summer of 2011 I was finally able to sit normally all the time, and even ride a bike normally. However, four weeks ago for some reason, I had a massive flare up that doesn't seem like it's going away. I originally tried to rejoin my sitting regime at about 60 minutes four times a day, but it was obvious that it wasn't going to work, so I scaled right back to 30 minutes four times a day - and it's somewhat stable but I'm still getting daily flare ups, so even 30 minutes might be dangerously too long (having a major flare up right now - not good).
Now here's the problem:-
During the 8 or 9 months when I was completely "cured" (i.e finally able to sit normally again) I took a trip to the dentist who recommended that I have jaw surgery (orthognathic surgery) to correct an overjet misalignment (basically moving both of my jaws forward a little bit to correct the bite). The first consultation I had about this was in September last year. I've been really really looking forward to it, as not only would it mean good dental health, but as an added bonus it would also change my facial profile a little bit. It's actually a medical issue foremost though and is being carried out by the NHS after a series of referrals. I've done all the X-Rays, the gum moulds, meetings etc.
The entire treatment is going to last about a year and a half. Firstly I have to have fixed metal braces put on to my teeth for 6 months (probably tightened up every month or so), then comes the actual jaw surgery which requires hospitalisation for three days, and 2 weeks of (apparently) feeling miserable as the face is like a pumpkin, and then the braces being finally removed about a year later.
So after all the referrals, and preparation, the last final preparation meeting with the joint surgical and orthodontists team was five weeks ago....
...and then, literally, three days later, my pudendal nerve goes haywire (after not even being a problem for so long) and has been going crazy for the past four weeks.
I'm booked in to have the first lot of braces attached in four weeks time on May 14th and May 28th. The date for the actual surgery hasn't yet been made but it's likely that a preliminary operation to remove a wisdom tooth is going to occur in the Summer with the main jaw operation occurring sometime in October.
What should I do? I was really really looking forward to the operation. Can I cope with the challenges of the long procedure AND pudendal problems at the same time? Has anyone had any experiences with dentists chairs and PN or long stays in hospital involving general anaesthesia? Tips? Should I just cancel? (Cancelling it would make me really depressed I think).
When I think about it logically I think I can get through it. The first dentist operation to put on the brace is 50 minutes (on paper) and the second one is 20 minutes. That's not so bad - after all, on good days I can sort of just about to sit for 30 minutes. Maybe in four weeks from now I might be able to sit for 50 minutes....then again maybe I'm fooling myself and might need to scale right back to just a few minutes.
But then I think: Well dental chairs can tip right back so it's not like proper sitting after all - kind of like lying down perhaps?? I think to myself, providing I can survive the brace being put on then that's one hurdle out of the way as the major operations are going to be months away. But then again....
Any thoughts on this?
Right now I'm in a lot of pain.
Dental Work
Dental Work
Pain started Aug 2008 after prolonged sitting.
Referal to Dr Natasha Curran Nov 2008.
First Nerve Block Jan 2009.
Second Nerve Block Feb 2009.
Physiotherapy Feb 2009.
Started practicing sitting four times a day with the amount being increased by 10% each week:-
Feb 2009: 5 seconds x 4
Nov 2009: 1 minute x 4
Dec 2010: 1 hour x 4
July 2011: 3 hours x 4 (cured)
Had relapse in March 2012.
Sitting normally again October 2013. No pudendal pain, but some lingering muscle tightness.
Referal to Dr Natasha Curran Nov 2008.
First Nerve Block Jan 2009.
Second Nerve Block Feb 2009.
Physiotherapy Feb 2009.
Started practicing sitting four times a day with the amount being increased by 10% each week:-
Feb 2009: 5 seconds x 4
Nov 2009: 1 minute x 4
Dec 2010: 1 hour x 4
July 2011: 3 hours x 4 (cured)
Had relapse in March 2012.
Sitting normally again October 2013. No pudendal pain, but some lingering muscle tightness.
- helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Dental Work
Maybe your current state is as a result of a flare from sitting through your earlier dental procedure. You were sitting and would obviously have been tense throughout, well!! I certainly would have been. it does seem likely. Whatever, you already now how just sitting can affect you.
If it were me I think I would go through with your dental work and make any adjustments necessary to help you through the process.
As you say the chairs can recline. Maybe you could take a cushion that helps? Those chairs also have arm rests; I know I often raise myself off the seat using my arms when 'sitting' on that style of chair. I think there could be all manner of adaptations to help you through, just let the dentist know about the problem beforehand.
Knowing how difficult it is to get these NHS referrals I would tend to grab it now tbh. Although I do have major previous for referrals going awry, so am maybe have a more jaundiced opinion
Even if your PN settles down again soon who can say that it won't flare back after another dental procedure and the lengthy sitting involved? you would probably be more tense and stressed at that, it doesn't matter how far in the future. . . .just my tuppence halfpenny worth.
Helen
If it were me I think I would go through with your dental work and make any adjustments necessary to help you through the process.
As you say the chairs can recline. Maybe you could take a cushion that helps? Those chairs also have arm rests; I know I often raise myself off the seat using my arms when 'sitting' on that style of chair. I think there could be all manner of adaptations to help you through, just let the dentist know about the problem beforehand.
Knowing how difficult it is to get these NHS referrals I would tend to grab it now tbh. Although I do have major previous for referrals going awry, so am maybe have a more jaundiced opinion
Even if your PN settles down again soon who can say that it won't flare back after another dental procedure and the lengthy sitting involved? you would probably be more tense and stressed at that, it doesn't matter how far in the future. . . .just my tuppence halfpenny worth.
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: Dental Work
I'm with Helen on this, I'd go for it.
I don't know about your dentist, but my dentist uses a patient chair which reclines completely when he is working - in fact I think my feet are actually above hip level. I find the chair very uncomfortable until he tilts it back, and then it is absolutely fine, and I very often nearly drift off to sleep.
I'd suggest that you try some pain meds again - I know you've tried amitriptyline and gabapentin (I hated both of these as well) but there are alternatives. Nortriptyline is definitely better than amitriptyline with regard to side effects, and pregabalin is much better than gabapentin (for me, this was what worked, the most expensive of the lot, wouldn't you know). They always try amitriptyline and gabapentin first as they are much cheaper. And also, there is tramadol, I have found the slow release to be very helpful.
Worth a shot?
I don't know about your dentist, but my dentist uses a patient chair which reclines completely when he is working - in fact I think my feet are actually above hip level. I find the chair very uncomfortable until he tilts it back, and then it is absolutely fine, and I very often nearly drift off to sleep.
I'd suggest that you try some pain meds again - I know you've tried amitriptyline and gabapentin (I hated both of these as well) but there are alternatives. Nortriptyline is definitely better than amitriptyline with regard to side effects, and pregabalin is much better than gabapentin (for me, this was what worked, the most expensive of the lot, wouldn't you know). They always try amitriptyline and gabapentin first as they are much cheaper. And also, there is tramadol, I have found the slow release to be very helpful.
Worth a shot?
Re: Dental Work
I felt the same as Calluna with the full tilt back being okay and my dentist worked with if I needed a break he could stop and I could get up a few minutes for longeer stuff. Talk to the dentist and explain the situatiion. Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Re: Dental Work
I have to go for a dental biopsy in 2 weeks and have explained to the dentist what difficulty I have sitting. He's changed the hospital so I don't have to travel and made sure I won't have to sit in the waiting room. His chair lies fully flat so n o problem there and he will stop any time I need to move. I'm sure you will manage. Just take it bit by bit.
1985 diagnosed fibro; 1990 hysterectomy with bladder suspension;2000 T12 (Maigne ) syndrome; urticaria and angioedema; sjogrens syndrome; adhesions; pelvic pain; two herniated discs in neck.
Re: Dental Work
Hi everyone - Thanks for all the great advice.
I'm definitely going to go through with the Dental work now. Helen, you have hit the nail on the head in respect of NHS referrals and that was a big factor in my decision. The reclining dental chair is another positive factor. So basically I'm just gonna take it step by step and cross each bridge as I arrive at it.
Weirdly, I got the date of my first surgical appointment through the post this morning and it's in two weeks time - a general anaesthetic to remove an impacted wisdom tooth with overnight stay in hospital. So the timeframe is going to get started a lot sooner that I expected - a bit stressful and nerve-racking but really this is going to be a good test on how things are going to play out for the next 12 months; and yes, I might as well do it now, because I could just as easily have a flare up at any other future point.
In other news, I've just had a fantastic 20 minute phone call to Dr Greenslade's secretary (lovely lady) and booked in for a 90 minute consultation in Bristol on the 19th May, which includes some kind of ultrasound nerve block. I haven't met Dr Greenslade before (I was previously with Dr Curran in London) but now that I live in Bristol it seems much more logical to be in contact with the Bristol team.
This forum really is fantastic and it's so comforting to know there other people out there who understand the tribulations of pudendal problems and a life without sitting.
I'm definitely going to go through with the Dental work now. Helen, you have hit the nail on the head in respect of NHS referrals and that was a big factor in my decision. The reclining dental chair is another positive factor. So basically I'm just gonna take it step by step and cross each bridge as I arrive at it.
Weirdly, I got the date of my first surgical appointment through the post this morning and it's in two weeks time - a general anaesthetic to remove an impacted wisdom tooth with overnight stay in hospital. So the timeframe is going to get started a lot sooner that I expected - a bit stressful and nerve-racking but really this is going to be a good test on how things are going to play out for the next 12 months; and yes, I might as well do it now, because I could just as easily have a flare up at any other future point.
In other news, I've just had a fantastic 20 minute phone call to Dr Greenslade's secretary (lovely lady) and booked in for a 90 minute consultation in Bristol on the 19th May, which includes some kind of ultrasound nerve block. I haven't met Dr Greenslade before (I was previously with Dr Curran in London) but now that I live in Bristol it seems much more logical to be in contact with the Bristol team.
This forum really is fantastic and it's so comforting to know there other people out there who understand the tribulations of pudendal problems and a life without sitting.
Pain started Aug 2008 after prolonged sitting.
Referal to Dr Natasha Curran Nov 2008.
First Nerve Block Jan 2009.
Second Nerve Block Feb 2009.
Physiotherapy Feb 2009.
Started practicing sitting four times a day with the amount being increased by 10% each week:-
Feb 2009: 5 seconds x 4
Nov 2009: 1 minute x 4
Dec 2010: 1 hour x 4
July 2011: 3 hours x 4 (cured)
Had relapse in March 2012.
Sitting normally again October 2013. No pudendal pain, but some lingering muscle tightness.
Referal to Dr Natasha Curran Nov 2008.
First Nerve Block Jan 2009.
Second Nerve Block Feb 2009.
Physiotherapy Feb 2009.
Started practicing sitting four times a day with the amount being increased by 10% each week:-
Feb 2009: 5 seconds x 4
Nov 2009: 1 minute x 4
Dec 2010: 1 hour x 4
July 2011: 3 hours x 4 (cured)
Had relapse in March 2012.
Sitting normally again October 2013. No pudendal pain, but some lingering muscle tightness.
Re: Dental Work
So I get my braces put on today!
50 minute appointment in a dentist's chair. I phoned in advance to let them know the "no-sitting down" situation but, I have a feeling they will almost have certainly forgotten by the time I arrive.
Anyway, the person on the phone told me to tell them when I arrived, and that if they couldn't get me comfortable on the chair then they could rebook/cancel the appointment. I just hope it tips back far enough!
50 minute appointment in a dentist's chair. I phoned in advance to let them know the "no-sitting down" situation but, I have a feeling they will almost have certainly forgotten by the time I arrive.
Anyway, the person on the phone told me to tell them when I arrived, and that if they couldn't get me comfortable on the chair then they could rebook/cancel the appointment. I just hope it tips back far enough!
Pain started Aug 2008 after prolonged sitting.
Referal to Dr Natasha Curran Nov 2008.
First Nerve Block Jan 2009.
Second Nerve Block Feb 2009.
Physiotherapy Feb 2009.
Started practicing sitting four times a day with the amount being increased by 10% each week:-
Feb 2009: 5 seconds x 4
Nov 2009: 1 minute x 4
Dec 2010: 1 hour x 4
July 2011: 3 hours x 4 (cured)
Had relapse in March 2012.
Sitting normally again October 2013. No pudendal pain, but some lingering muscle tightness.
Referal to Dr Natasha Curran Nov 2008.
First Nerve Block Jan 2009.
Second Nerve Block Feb 2009.
Physiotherapy Feb 2009.
Started practicing sitting four times a day with the amount being increased by 10% each week:-
Feb 2009: 5 seconds x 4
Nov 2009: 1 minute x 4
Dec 2010: 1 hour x 4
July 2011: 3 hours x 4 (cured)
Had relapse in March 2012.
Sitting normally again October 2013. No pudendal pain, but some lingering muscle tightness.
- helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Dental Work
Good luck with that. . . .not long till your Dr G appointment now either
Helen
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: Dental Work
Thanks Helen! Well - I survived it!
Actually it was pretty easy. The dental chairs do indeed go right back and I may as well have been lying down.
I'm soooo glad now that I didn't cancel/postpone!
Actually it was pretty easy. The dental chairs do indeed go right back and I may as well have been lying down.
I'm soooo glad now that I didn't cancel/postpone!
Pain started Aug 2008 after prolonged sitting.
Referal to Dr Natasha Curran Nov 2008.
First Nerve Block Jan 2009.
Second Nerve Block Feb 2009.
Physiotherapy Feb 2009.
Started practicing sitting four times a day with the amount being increased by 10% each week:-
Feb 2009: 5 seconds x 4
Nov 2009: 1 minute x 4
Dec 2010: 1 hour x 4
July 2011: 3 hours x 4 (cured)
Had relapse in March 2012.
Sitting normally again October 2013. No pudendal pain, but some lingering muscle tightness.
Referal to Dr Natasha Curran Nov 2008.
First Nerve Block Jan 2009.
Second Nerve Block Feb 2009.
Physiotherapy Feb 2009.
Started practicing sitting four times a day with the amount being increased by 10% each week:-
Feb 2009: 5 seconds x 4
Nov 2009: 1 minute x 4
Dec 2010: 1 hour x 4
July 2011: 3 hours x 4 (cured)
Had relapse in March 2012.
Sitting normally again October 2013. No pudendal pain, but some lingering muscle tightness.
- helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Dental Work
Maybe we all need a dental chair . As long as it's not accompanied by that awful high pitched wizzzzz sound . . . . . and open wide, AAAArgh!
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.