Hollis

[Guest guest]

Hi Hollis,

Thank you for all your kind thoughts. I have a question – how do

you sit when you have painful sitting issues? And do you have concerns about

getting blood clots in your legs when you are sitting or lying down all the

time? These are all thoughts I am having because I am lying down so much and I

am losing feeling in my legs. Unfortunately the professionals that are dealing

with PN are pretty much all alone in the business too. Dr. Conway had no one to

recommend to me. His few recommendations about getting a SCS or having the RFA

done are only suggestions of treatments that have been done for people, but he does

not know if they work on the pudendal nerve. He said there might be one doctor

in NY that has worked with the RFA treatments, but he did not know his name.

None of the information helps me much. I do have the name of a doctor in my

area that does the SCS which is like an internal TENS unit, but again they

usually only do that treatment on backs, and it is a very specific surgery and

leads have to be put on the exact right place on the spine. So whether it works

on the pudendal nerve I don’t know yet. I have never tried a chiropractor, and

I am a little scared of them. I would really have to do some research to see if

any of them in my area have worked on someone with PN. I probably would go

immediately to a another PN doctor if there was one close, but I would have to

travel from MA to AZ, and I don’t think I could make the plane trip. So I have

to do some thinking about all of this. It is not something I can accomplish

tomorrow, and again I appreciate all your good thoughts and well wishes.

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of hgz

Sent: Saturday, June 14, 2008 1:05 PM

To: VulvarDisorders

Subject: RE: My story with Vestibulitis and Pudendal Neuropathy

Dear nne,

I greatly feel for you. I have spent years of my life

bed-ridden with some major portions

of that time being unable to sit up for more than a few minutes at

a stretch because of excruciating butt pain. And now, being a wheelchair user

and having out of necessity been sitting way more hours than i should have at a

time due to very limited standing and walking ability, i'm once again dealing

with very serious and painful sitting pain issues. To have gone through such a

invasive surgery, to have been doing so well, and then to have everything,

apparently, be for naught must be so difficult. It wasn't even me who has

gone through what you have, and I feel deeply disappointed -- so i

can only imagine what you're feeling. While i've never had an operations like

yours before, i have certainly faced throughout the decades i've dealt with my

various Lyme-related neuro-muscular problems so many times that i've pinned my

hopes on a particular treatment only to have it not work, only to be that weird

exception, the " you're the worse case i've ever seen " patient who got

disappointed yet again. So i can particularly understand the pain of

being, in essence, dismissed by a doctor, especially when he's one that you

highly respect, as one of his " failures " and beyond his ability to

help.

I greatly admire your drive and the spirit that you've displayed

throughout this whole ordeal

and hope that, as you seem to be, you can regroup and move on to

explore what is possible to relieve your pain and get yourself back on your

feet. As far as practical advice goes, it does seem to me that it makes

sense to get somehow get some second opinions about your

current status. And if Dr. Conway was the one to suggest the

SCS and RFA wouldn't he not be able to give you some referrals to people who

have dealt with the pudendal nerve specifically? And, while i realize

that this is a very personal choice, i do believe that a very good chiropractor

with expertise with pelvic issues could potential be quite helpful.

Wishing you the best,

Hollis

This

is quite long – so be prepared if you don’t want to read it all. - nne

It

has been approximately 9 ½ months since my Pudendal Neuropathy/Vestibul ectomy

surgery. I was doing very well up until late December, which was about four

months post surgery. Around that time is when my Vestibulectomy failed, which

was very discouraging as the relief from that pain had been wonderful. I won’t

go into details but to get that pain back again was devastating, but I was told

there is a 20 percent failure rate and that it probably would get better again

as my pudendal nerve healed. However, I was still seeing some improvement from

the pudendal nerve pain and the holidays were great, and I even was able to sit

a little.

Nevertheless,

for some unknown reason, I started to go downhill every month afterwards, even

though I was having monthly appointments with my pain management doctor (Dr.

Quesada) and weekly visits with my physical therapist. I started thinking it

could be muscular and that some of the other muscles in the pelvis were

becoming irritated and inflamed or it could be Coccydynia (I had broken my many

tailbone years ago), or referred pain from degeneration of my L5S1 disk in my

spine (this had shown up in my MRI as completely depressed and devoid of

fluid). My pain management doctor thought it could possibly be an inflamed

“bursa†in the pelvic area. He explained that it is similar to what people have

in their knee, shoulder or elbow. So first I had a Ganglion Impar block, and

then when that did not work, at my next appointment I had specific trigger

point injections for the pelvis.

I

also went to see Dr. Lori Boardman who is a fantastic vulvar specialist. She

also gave me some trigger point injections in the perineum area, and these

helped quite a bit for about a month. During this time I was also doing

research about Botox injections, and in fact I was suppose to have gotten them

a month ago, but my pain management doctor was not having any luck getting in

contact with anyone at my insurance company t (no surprise there) as they had

to have written consent before they could perform the procedure. Botox is

extremely expensive, a large amount is needed for the pelvic area, and it is a

new therapy for pelvic pain, so that is why written consent is needed, and I

have not heard from them yet either.

Moreover,

during these last few months the pain has just continued to escalate, now worse

than even before my surgery. I was becoming more and more depressed and spent

my days doing research on what else could be the matter and what other

treatments I could have. I was even thinking of going to a Chiropractor, but I

had bad luck with one many years ago and knew I would have to do a lot of

research to find the right one that understood the pudendal nerve. You could

see how I was grasping at straws, as the pain was becoming so extreme, the only

way to stop it was to take enough pain medications so that I would pass out and

sleep. I was getting very little relief when I was awake. I have been immobile

for months, just getting up to use the bathroom and shower and then back to

lying down with ice packs all around my pelvis. This has been my story since

January.

On

June 5, I went to see Dr. Conway, my surgeon who did my Pudendal Decompression/

Vestibulectomy surgery. After a very painful exam and an hour discussion with

me (and my husband), he told me that I had been his worst patient when I came

to him eighteen months ago, and from the exam today he concluded that my

surgery has been a failure . He said an MRI would tell nothing except

that I had probably had some scar tissue but not enough that would cause pain,

he did not want to do another EMG test as he thought it would be very painful

for me on top of the pain I already had. In other circumstances for women who

did not have nerve involvement, he could have repaired the Vestibulectomy, but

felt that it was useless as my Vestibulitis was coming from the pudendal nerve

and not a separate entity.

At

my next appointment with Dr. Quesada, I should get one of two diagnostic

pudendal blocks to verify that the pudendal nerve is still inflamed or

compressed. He said two should be done because sometimes the needle does not

get the exact spot the first time. If I am completely pain free after the block

it will show definitely that it is still the pudendal nerve, so now I should

treat the symptoms and the pain so that I can have some quality of life and get

on my feet again. Basically, he said there was nothing more that he could do

for me. Stupidly when I checked out, I asked the girl when he wanted to see me

next, and she called back to his office and he said no appointment was needed.

It just dawned on me this weekend that I was no longer a pudendal patient of

his.

Now

to the treatment possibilities he suggested –. First, I am to have two pudendal

blocks to determine that it is the pudendal nerve. Then if it is the pudendal

nerve which Dr. Conway says he is 100% positive it will be then he suggests a

SCS (Spinal Cord Stimulator) http://www.powerove ryourpain. com/sb/index. html - this is just a

sample of one kind, (it is like an internal TENS machine) that is attached

internally to your spine with electrodes that you control with a transmitter

(they do a trial external one first), or I can have RFA (Radiofrequency

Ablation) which, under ultrasound guidance, the nerve is treated with

radio-energy, resulting in closure of the involved area. He said he had heard

of one doctor that was having success with this and the pudendal nerve in NY.

He said everything I had been doing or had been thinking of doing was a waste

of time, and was like putting a band-aid on a dyke. He was very negative about

everything, including the trigger-point injections.

Dr.

Conway is a wonderful doctor and I respect his opinion, but there are other

doctors out there also who may be able to help, I just have to find them. So

even though it is impossible for me to travel, I think I will try and get a

hold of any of the other doctors who do pudendal surgery and see what they have

to say. Also at this time, I do not even have names of any of the doctors that

do the SCS or RFA. I am sure there are physicians in the area that do it but

the big question is how many have done it for the pudendal nerve. And to tell

you the truth, I would rather not have either one of these treatments. I had

the PNE surgery and I want that to fix it – I would even have it over again if

another doctor thought it would help. It was very obvious that Dr. Conway did

not to help me any further.

So

I see Dr. Quesada on 6/24 and I will see what he has to say, and what Dr.

Conway told him about my case. In the meantime, I will do any research I can

and see if I can talk to others whose pudendal surgery has failed. I would

appreciate any suggestions or help if anyone can think of anything, and I

appreciate your interest and please keep me in your prayers so that I may have

some guidance on what to do next.

May

all of you have pain free days,

nne

[Guest guest]

nne,How do i sit? Well, oftentimes now rather painfully, i'd have to say, knowing thatwhat i'm doing is exactly what i shouldn't be, but tuning out the pain as muchas i can unless and until it's so severe i really have to lie down. i always use cushions on my wheelchair seat. Lately, it's mostly been a Theraseat, a pretty thin cushion with a cut-out. But when things are particularly bad, i switch to a Varilite Evolution pad, which is a much thicker,very expensive ($250 range, butfortunately for me, covered by Medicare) pad with a combination of air and foamof differing densities, the firmness of which can be controlled with a valve -- a feature i really like. I also always use the Varilite pad when i bop around townwith my electric scooter.My situation is rather variable in that, when my legs are better and i can, i'll takeperiodic brief standing breaks (probably on average about every 10 minutes; sometimes much more often) to relieve the pressure on my butt (plus do some butt kneading to get the blood moving) when the discomfort gets to be too much. Butwhen my legs are strained and my butt is particularly bad it's not a good combo,to put it mildly. When i really can't stand or sit for very long i cut back to thebare essentials with my sitting time and hang out on my bed. Problem is that, because i live alone now, it's not as if i can walk (or levitate. . .i wish!) to the bathroom or the kitchen to cook or any of the others activities that are involvedin leading a semi-functional, semi-independent life. I HAVE to sit in order to move from Point A to Point B. And some things just HAVE to be done. If i could stand and walk freely, it would be much easier to manage. On worse butt days when i have pushed it -- standing for much longer periods at a time (for example,when on-line with this and other groups), i've overdone it and then have so muchknee/leg pain i can't bear to stand more than it takes to do very quick transfers from bed to wheelchair to toilet, etc. and have to wait (which sometimes can mean days) until things calm down and i can start standing a little again andself-propelling with my legs.And, then, there are times that the pain mysteriously lessens and i'm able to sitwith minimal or no pain -- though that's been a lot rarer lately. I'm sure thatall the hours of straight sitting i did (totally comfortably with no pain) after goingin 2001 from being bed-ridden for years to being upright without taking butt breakshelped set me up for a return of butt pain problems.As far as the possibility of blood clots in my legs goes, i really don't (even if i should) worry about it all that much. When my legs are in better shape, usingthem for propelling my chair gives them a regular work-out. I also, when able,do a daily stint of walking with a rolling walker. Some days it may literally onlybe 10 steps, but at least it's something. And as a former yoga student and dancer,i tend to do a fair amount of ankle flexing and leg exercises daily (chorus line-typekicks, running in place) from my chair and/or on my bed. But when my legs are excruciatingly painful -- burning, throbbing swelled, weak,etc. etc. and i can't bearto use them at all -- i am more concerned. So i do my best to keep them operativeby not pushing the standing and walking past the point of no return.Are you doing -- or would you be able to do -- some kind of leg exercises like ankle rotations, cross-crawling on your back, pedaling in the air, jumping jackin and out movements (snow angel-making on your bed, one leg at a time) to getthe blood moving? Even very gentle slow movement would help keep the circulation going and perhaps stop the numbing you're experiencing.I can really empathize with your problems with travelling to non-local appointmentswith your current issues. Between my sound sensitivity, the mobility problems and the butt pain flare-ups, travel for me is extremely difficult or, in some cases, impossibleas well. My days trapsing around Europe with 80 pounds on my back feel very farand long ago to me now.HollisHi Hollis, Thank you for all your kind thoughts. I have a question – how do you sit when you have painful sitting issues? And do you have concerns about getting blood clots in your legs when you are sitting or lying down all the time? These are all thoughts I am having because I am lying down so much and I am losing feeling in my legs. Unfortunately the professionals that are dealing with PN are pretty much all alone in the business too. Dr. Conway had no one to recommend to me. His few recommendations about getting a SCS or having the RFA done are only suggestions of treatments that have been done for people, but he does not know if they work on the pudendal nerve. He said there might be one doctor in NY that has worked with the RFA treatments, but he did not know his name. None of the information helps me much. I do have the name of a doctor in my area that does the SCS which is like an internal TENS unit, but again they usually only do that treatment on backs, and it is a very specific surgery and leads have to be put on the exact right place on the spine. So whether it works on the pudendal nerve I don’t know yet. I have never tried a chiropractor, and I am a little scared of them. I would really have to do some research to see if any of them in my area have worked on someone with PN. I probably would go immediately to a another PN doctor if there was one close, but I would have to travel from MA to AZ, and I don’t think I could make the plane trip. So I have to do some thinking about all of this. It is not something I can accomplish tomorrow, and again I appreciate all your good thoughts and well wishes. nne From: VulvarDisorders@ yahoogroups. com [mailto:VulvarDisor ders@yahoogroups .com] On Behalf Of hgz Sent: Saturday, June 14, 2008 1:05 PM To: VulvarDisorders@ yahoogroups. com Subject: RE: My story with Vestibulitis and Pudendal Neuropathy Dear nne, I greatly feel for you. I have spent years of my life bed-ridden with some major portions of that time being unable to sit up for more than a few minutes at a stretch because of excruciating butt pain. And now, being a wheelchair user and having out of necessity been sitting way more hours than i should have at a time due to very limited standing and walking ability, i'm once again dealing with very serious and painful sitting pain issues. To have gone through such a invasive surgery, to have been doing so well, and then to have everything, apparently, be for naught must be so difficult. It wasn't even me who has gone through what you have, and I feel deeply disappointed -- so i can only imagine what you're feeling. While i've never had an operations like yours before, i have certainly faced throughout the decades i've dealt with my various Lyme-related neuro-muscular problems so many times that i've pinned my hopes on a particular treatment only to have it not work, only to be that weird exception, the " you're the worse case i've ever seen " patient who got disappointed yet again. So i can particularly understand the pain of being, in essence, dismissed by a doctor, especially when he's one that you highly respect, as one of his " failures " and beyond his ability to help. I greatly admire your drive and the spirit that you've displayed throughout this whole ordeal and hope that, as you seem to be, you can regroup and move on to explore what is possible to relieve your pain and get yourself back on your feet. As far as practical advice goes, it does seem to me that it makes sense to get somehow get some second opinions about your current status. And if Dr. Conway was the one to suggest the SCS and RFA wouldn't he not be able to give you some referrals to people who have dealt with the pudendal nerve specifically? And, while i realize that this is a very personal choice, i do believe that a very good chiropractor with expertise with pelvic issues could potential be quite helpful. Wishing you the best, Hollis This is quite long – so be prepared if you don’t want to read it all. - nne It has been approximately 9 ½ months since my Pudendal Neuropathy/Vestibul ectomy surgery. I was doing very well up until late December, which was about four months post surgery. Around that time is when my Vestibulectomy failed, which was very discouraging as the relief from that pain had been wonderful. I won’t go into details but to get that pain back again was devastating, but I was told there is a 20 percent failure rate and that it probably would get better again as my pudendal nerve healed. However, I was still seeing some improvement from the pudendal nerve pain and the holidays were great, and I even was able to sit a little. Nevertheless, for some unknown reason, I started to go downhill every month afterwards, even though I was having monthly appointments with my pain management doctor (Dr. Quesada) and weekly visits with my physical therapist. I started thinking it could be muscular and that some of the other muscles in the pelvis were becoming irritated and inflamed or it could be Coccydynia (I had broken my many tailbone years ago), or referred pain from degeneration of my L5S1 disk in my spine (this had shown up in my MRI as completely depressed and devoid of fluid). My pain management doctor thought it could possibly be an inflamed “bursa†in the pelvic area. He explained that it is similar to what people have in their knee, shoulder or elbow. So first I had a Ganglion Impar block, and then when that did not work, at my next appointment I had specific trigger point injections for the pelvis. I also went to see Dr. Lori Boardman who is a fantastic vulvar specialist. She also gave me some trigger point injections in the perineum area, and these helped quite a bit for about a month. During this time I was also doing research about Botox injections, and in fact I was suppose to have gotten them a month ago, but my pain management doctor was not having any luck getting in contact with anyone at my insurance company t (no surprise there) as they had to have written consent before they could perform the procedure. Botox is extremely expensive, a large amount is needed for the pelvic area, and it is a new therapy for pelvic pain, so that is why written consent is needed, and I have not heard from them yet either. Moreover, during these last few months the pain has just continued to escalate, now worse than even before my surgery. I was becoming more and more depressed and spent my days doing research on what else could be the matter and what other treatments I could have. I was even thinking of going to a Chiropractor, but I had bad luck with one many years ago and knew I would have to do a lot of research to find the right one that understood the pudendal nerve. You could see how I was grasping at straws, as the pain was becoming so extreme, the only way to stop it was to take enough pain medications so that I would pass out and sleep. I was getting very little relief when I was awake. I have been immobile for months, just getting up to use the bathroom and shower and then back to lying down with ice packs all around my pelvis. This has been my story since January. On June 5, I went to see Dr. Conway, my surgeon who did my Pudendal Decompression/ Vestibulectomy surgery. After a very painful exam and an hour discussion with me (and my husband), he told me that I had been his worst patient when I came to him eighteen months ago, and from the exam today he concluded that my surgery has been a failure . He said an MRI would tell nothing except that I had probably had some scar tissue but not enough that would cause pain, he did not want to do another EMG test as he thought it would be very painful for me on top of the pain I already had. In other circumstances for women who did not have nerve involvement, he could have repaired the Vestibulectomy, but felt that it was useless as my Vestibulitis was coming from the pudendal nerve and not a separate entity. At my next appointment with Dr. Quesada, I should get one of two diagnostic pudendal blocks to verify that the pudendal nerve is still inflamed or compressed. He said two should be done because sometimes the needle does not get the exact spot the first time. If I am completely pain free after the block it will show definitely that it is still the pudendal nerve, so now I should treat the symptoms and the pain so that I can have some quality of life and get on my feet again. Basically, he said there was nothing more that he could do for me. Stupidly when I checked out, I asked the girl when he wanted to see me next, and she called back to his office and he said no appointment was needed. It just dawned on me this weekend that I was no longer a pudendal patient of his. Now to the treatment possibilities he suggested –. First, I am to have two pudendal blocks to determine that it is the pudendal nerve. Then if it is the pudendal nerve which Dr. Conway says he is 100% positive it will be then he suggests a SCS (Spinal Cord Stimulator) http://www.powerove ryourpain. com/sb/index. html - this is just a sample of one kind, (it is like an internal TENS machine) that is attached internally to your spine with electrodes that you control with a transmitter (they do a trial external one first), or I can have RFA (Radiofrequency Ablation) which, under ultrasound guidance, the nerve is treated with radio-energy, resulting in closure of the involved area. He said he had heard of one doctor that was having success with this and the pudendal nerve in NY. He said everything I had been doing or had been thinking of doing was a waste of time, and was like putting a band-aid on a dyke. He was very negative about everything, including the trigger-point injections. Dr. Conway is a wonderful doctor and I respect his opinion, but there are other doctors out there also who may be able to help, I just have to find them. So even though it is impossible for me to travel, I think I will try and get a hold of any of the other doctors who do pudendal surgery and see what they have to say. Also at this time, I do not even have names of any of the doctors that do the SCS or RFA. I am sure there are physicians in the area that do it but the big question is how many have done it for the pudendal nerve. And to tell you the truth, I would rather not have either one of these treatments. I had the PNE surgery and I want that to fix it – I would even have it over again if another doctor thought it would help. It was very obvious that Dr. Conway did not to help me any further. So I see Dr. Quesada on 6/24 and I will see what he has to say, and what Dr. Conway told him about my case. In the meantime, I will do any research I can and see if I can talk to others whose pudendal surgery has failed. I would appreciate any suggestions or help if anyone can think of anything, and I appreciate your interest and please keep me in your prayers so that I may have some guidance on what to do next. May all of you have pain free days, nne

[Guest guest]



HI Hollis....

O'M' Goodness I had 'no' idea you were that incapacitated hon. All I can say is how truly sorry I am. It's so little and seems so trite I know, but it's all I can think of to say. I'm speechless here but thankful and humbled for my own good health overall.

I just wish I had that magic wand for sure to wave over you, nne, Chelle & so many others *sigh* bless your dear hearts with how you are able to deal with this 'and do' you all deserve medals for your courage and bravery and still are able to help others.

If prayers help believe me they're going out. Big Hugs and how I wish it weren't so. (if only wishes came true) Dee