reality has set in.

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reality has set in.

Postby river133 » Wed Dec 12, 2012 7:47 pm

After 5 years and 3 surgeries, I am facing the fact that I will have this pain forever. . Kind of running out of hope here... I am going to go to a pain clinic after the first of the year...
Surgery Jan.05 2011 TG with Dr Antalok. Dr.Chambi May of 2012 showed injury from a fall on back, 11 years ago. My piriformis muscle caused a large amount of fibrosis .My sciatic nerve was growing through the piriformis muscle which caused a bifid p.muscle. . Dr Chambi decompressed the sciatic,pudendal,pfcn ,and peroneal nerves. I hope to have a nuerostimulator put in to help with the sciatic pain that never goes away. Most days are better with the pudendal if I do not sit at all.
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Re: reality has set in.

Postby helenlegs 11 » Thu Dec 13, 2012 1:15 am

Sorry to hear that, obviously you have tried so hard over the 5 years to be rid of this. I do hope that pain management works for you, acceptance being part of the pain management process. Perhaps you are almost there with that one. I'm sure it hasn't been an easy thing to accept however but it's not like you are 'giving up', far from it. No one could have tried any harder.
Good luck,
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.
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Re: reality has set in.

Postby river133 » Thu Dec 13, 2012 3:07 pm

Thank you Helen, I needed that.. This pain management is an out patient, I am going in for a consult on the 20th.. I would like to know if you have known or heard of other people that have had success with it This pain management I mean... I know it will all up to me as to how I want it to go... I think of you at times knowing that our issues are similar...sending all of the best to you... will watch for your posts. Ellie
Surgery Jan.05 2011 TG with Dr Antalok. Dr.Chambi May of 2012 showed injury from a fall on back, 11 years ago. My piriformis muscle caused a large amount of fibrosis .My sciatic nerve was growing through the piriformis muscle which caused a bifid p.muscle. . Dr Chambi decompressed the sciatic,pudendal,pfcn ,and peroneal nerves. I hope to have a nuerostimulator put in to help with the sciatic pain that never goes away. Most days are better with the pudendal if I do not sit at all.
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Re: reality has set in.

Postby Karyn » Thu Dec 13, 2012 3:49 pm

Hi Ell,
I understand it's upsetting, but seeking help from a PM center isn't such a bad thing. Personally, I think you should've had someone helping you all along. And I agree with Helen -
it's not as if you're giving up. No one could've tried harder. That fact that you're seeking other avenues is proof of your desire to feel better and be more functional. That doesn't sound like giving up to me. It sounds realistic and brave. :)
So, I applaud you, Ellie, for taking this step.
river133 wrote:I know it will all up to me as to how I want it to go...

This is correct. Unfortunately, you have quite a bit of knowledge under your belt as to what doesn't work for you. Please use this knowledge to your advantage. There are lots of new PM treatments out there. Inquire about everything this facility has to offer. If you don't understand something, we're here to help you figure things out.
Hugs,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Re: reality has set in.

Postby HerMajesty » Thu Dec 13, 2012 4:40 pm

river133 wrote: I would like to know if you have known or heard of other people that have had success with it This pain management I mean...

I have been using a pain management clinic as my "primary care physician" ever since I was first diagnosed and my PT referred me there for trigger point injections. I pretty much "fell in love" with the place because they understand people in chronic pain.
Since then I have seen several people on this board make comments that are very resistant to pain management, along the lines of "my Neurologist has given up and wants me to go into pain management", in the same context as one might hear, "my Oncologist has given up and wants me to go into hospice". Please understand this is NOT the same thing. It was in pain management that I had knowledgeable pain care to give me higher quality of life, but it was also in pain management where i got all my good referrals to diagnostics and ultimately, to the appropriate KIND of surgery that has given me my life back - still in recovery but I am already improved and daring to hope that by the end of the recovery period I will be "cured" (in quotes because, having lived well with a chronic illness since age 14, I consider "cured" to mean fully functional vs. "normal").
I hope you have your choice of pain management clinics and that if so you will shop for one you are satisfied with, rather than stick with a bad one out of a sense of resignation. This could be a new beginning for you. These are doctors who are comfortable working with chronic pain patients - a rare thing, since frankly many doctors can't stand us. This is their specialty. They can usually help in some way, but sometimes they actually have a success and help their patient find answers that have not been forthcoming from physicians in other specialties.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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Re: reality has set in.

Postby helenlegs 11 » Fri Dec 14, 2012 2:04 am

Good luck for the 20th :) . Pain management is a multi faceted discipline nowadays including acupuncture and physio and is definitely not simply shuffling off into the sunset after hopelessness has set in.
In fact it is THE new big thing to some extent with fantastic advances as the clever people work out the correlations between the brain and pain and therefore what can help to overcome the sensation of pain. Got to be good.
I have become quite interested in that side (just reading up a bit) and find a lot of it really fascinating, just wish I was clever enough to understand more. I would love to read the Explain Pain (Butler and Mosley) book but it is a bit expensive (I think anyway)
It's really just another avenue for help Ellie, everyone should really have the opportunity to get some pain management and probably sooner rather than later.
I would love to know what they suggest for you and how you fare.
Actually I have been referred to local pain management too :) . My slight problem is that although I do have a pelvic neuralgia diagnosis, well more than one (greedy girl that I am!) The local medical community still have difficulties believing in pelvic nerve entrapments or maybe just that I have them (still not sure which one). However, I had a lovely chat with a pain management lady Dr. who sent me for acupuncture.
I'm in the situation where I still have to prove that I have pelvic nerve entrapments. The only thing with pain management that does worry me is people going, when the medics believe there is no pathology creating the pain and problems, as the body and damaged tissue is supposed to heal and shouldn't last to a chronic pain stage.
Of course this is not true for nerve irritation or entrapments but unlike other, easier to define chronic pain problems, pelvic neuralgia is difficult to diagnose due to a lack of awareness and difficulty with imaging etc to show the problem. So the pelvic neuralgia patient can easily be mistaken for the pain as a disease, 'pain syndrome' patient.
Obviously this will not happen to you as you have gathered non negotiable history along the way.
I have also been seeing a massage therapist recently. He hasn't been able to work on my bum and piriformis (well he tried and AARGH!) but he has been working on my back, shoulders and neck particularly (oh, feet too) I have SO many tight muscles it is crazy, most I had no clue about and it is taking an age to release them but I do feel much better for this.
Had cupping today (weird!) and my back is covered in red wheals, to be honest they are more purplish :o . My husband thought I'd come down with some kind of plague, until I told him it actually costs good money to be this blemished.
Even tho' this guy hasn't managed a full muscle release yet (I have confidence that he will) The actual massage makes me feel wonderful afterwards and I would recommend something similar to everyone.
Maybe it is a combination of it being just for me with the possibility of some pain release and the peace and calm of this lovely guy that does me good, such a feeling of well being does make everything easier to cope with :)
Even Jambo (yes that really is his name) reckons everyone should have a good massage every now and again due to, well,' life'
You could have a borrow Ellie ;) but for the moment, he is mine ALL MINE!!
Helen x
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.
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Re: reality has set in.

Postby Violet M » Fri Dec 14, 2012 6:38 am

Hi Ellie,

I'm sorry all of the things you have tried haven't been successful so far. It's good that you still have some options available to you but I think the important thing is to research your options carefully before letting anyone talk you into anything. You can't go wrong if you go to the appointment with an open mind and learn all that you can but then step back and think about it before you make any final decisions on any procedures that are recommended. It's never too late for a miracle ;) but if one doesn't happen right away, remember that you are a very strong woman to have come this far already.

Hugs,

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: reality has set in.

Postby river133 » Fri Dec 14, 2012 1:57 pm

This upcoming consult will be interesting. Thank you Karyn,Helen,Violet for your input. I have not had good experiences with any sort of pt in the past, I want to stay away from that. I need to find out what kind of experience they have had in the past with PNE. Helen you mention massage therapists, you found someone that fit the bill for you. I will just see how comfortable I will feel after my assessment of the place. The name of the place is IPPMC. Sartell,Mn. So very grateful for hope. Hugs to all Ellie
Surgery Jan.05 2011 TG with Dr Antalok. Dr.Chambi May of 2012 showed injury from a fall on back, 11 years ago. My piriformis muscle caused a large amount of fibrosis .My sciatic nerve was growing through the piriformis muscle which caused a bifid p.muscle. . Dr Chambi decompressed the sciatic,pudendal,pfcn ,and peroneal nerves. I hope to have a nuerostimulator put in to help with the sciatic pain that never goes away. Most days are better with the pudendal if I do not sit at all.
river133
 
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Location: Melrose. Mn.

Re: reality has set in.

Postby rea » Sun Dec 16, 2012 6:37 am

My PM center physician was pudendal aware but had never treated anyone. Now he has two of us. I had to find my own doctors to help with diagnosis and passed the info on to him. I thought I was going to go crazy from the burning. He has helped me greatly and in the last appointment spent over 30 minutes with me. I've had doctors only be in the room for 5 minutes or less. He was also wise enough to not start me on high doses of medicines but to gradually increase them.
Best wishes,
Rea
Symptoms began 6/27/12. Diagnosed with Vulvodynia.Estrace and Lidocane with no relief.
Uretha enlarged Aug. 2012. MRI of Lumbar in Sept. 2012.Normal. Did MRI 3 Tesla of ischial spine to Sacro Spin- Normal. Houston-Nerve Block 10-31-12 & MRI (MRN) entrapment of perineal branch, more on right side. Dr. Hibner- block of perineal branches and sclerozation w/relief over 1 month. SIJD/Piriformis Syndrome Left Side. Gabapentin 2400 mg.
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my attitude

Postby river133 » Sun Dec 30, 2012 10:55 pm

Well,I have had two appointments at pain clinic, I do believe they have all of the info they need after 3 hours of seeing different. Dr.s. First of all they had me see a physcologist
to make sure I am not a flippen addict. He did tell me at the end of the session that I am normal. Well you know what I mean.. My attitude towards Dr,s is a bit mistrusting after 5 years of this crap. They took two MRIs- one of my pelvis and also lower spine.
I think this place gives botox injections.. What is your opinion of this. ?They tell me that they see a lot of pudendal patients and that they have been helped. We will see.
I had surgery on my right side for sciatic and pudendal last Oct. My balance is off because of it I keep tipping over . Well,I was catching my self and twisted my foot . Was a few weeks before I went in for an image. I broke a bone on the top of my foot.. That takes care of going out doors for walks which I have always loved. At least it will not take 5 years to heal. So it is what it is and will just carry on and keep on hoping. It just gets so tiring doesn't it? Hugs to all,we need them. Ellie
Surgery Jan.05 2011 TG with Dr Antalok. Dr.Chambi May of 2012 showed injury from a fall on back, 11 years ago. My piriformis muscle caused a large amount of fibrosis .My sciatic nerve was growing through the piriformis muscle which caused a bifid p.muscle. . Dr Chambi decompressed the sciatic,pudendal,pfcn ,and peroneal nerves. I hope to have a nuerostimulator put in to help with the sciatic pain that never goes away. Most days are better with the pudendal if I do not sit at all.
river133
 
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