!5 months and very little change post op. I have learned so much since I have had surgery.. For at least 10 years or more I have been bothered with sicatic problems, I am convinced that , that is the reason for the pn .. I can not name off all of the nerves and terms with this disease...
Well I have decided not to go back to the Mayo clinic here in Mn.. Instead I will be seeing Dr. Chambi from Santa Ana in May.. I ordered all of my reports from our clinic here from the past 4 years , It was then the problems started.. Amazing what Dr.s will say when they can not make a diagnosis... One of them said," she does not seem to be in writhing pain" .. Stick a hot poker up his rear and then make a judgement... I will be having a consult with Dr. Chambi and possibly surgery the following day... will keep you posted....
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.
Hi Ellie,
Do you have a date for seeing Dr Chambi? I hope that he can answer your questions and offer a solution.. . . "possible surgery the next day" WOW!!
I'm trying to think of what I would do if I were in the same situation. . . .write it all down and tick things off your list as you go. You have learned such a lot from your previous surgery and how that has, or has not, affected you. I know that when there may be multiple nerves involved things will be more tricky diagnostically, but hopefully he can make sense of your situation. Everything crossed for you, I understand how important this will be.
Honestly, that comment!
river133 wrote:" she does not seem to be in writhing pain"
If only we could transfer the pain for a minute and see how much writhing any recipient would do hot pokers at the ready
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.
Congrats on your upcoming appointment, Ellie! I soooo hope this works out for you. Please let us know how things went, as soon as your able. Hot pokers at the ready, indeed, Helen!!!
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.
Karyn I am wondering if I am expecting too much too soon from the tg surgery with Dr. Antalok...
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 wrote:Karyn I am wondering if I am expecting too much too soon from the tg surgery with Dr. Antalok...
Not sure what you mean by this, hon. Are you having second thoughts about seeing Dr. Chambi? At the very least, he'll be able to rule out piriformis syndrome, entrapping your sciatic nerve. I don't think that will be the case for you, though. You've got too many of the tell-tale signs.
What day in May is your appointment?
Love,
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.
Back from ca.from surgery with dr chambi. I learned that my surgery 15 months ago with dr antalk was a total disaster.. .MY piriformis muscle was so badly damaged and all of the nerves were flattene and pressing
.on bone of the pelvic floor. I asked dr chambi what the difference was in the way dr antalok
released the nerve compared to how he did it. Dr. Chambi said nerves need to be realsed
proxmially not distally. So in fact my pn was never releasedby dr antalok. He said nerves need to follow the spine down not distally.meaning distance away.
So my sciatic nerve and other nerves were released by him removing the badly damaged
Piriformis. I can feel the difference. I really do not believe i will experience that same horrible pain. My nerves are free and will be round again not flattened and gasping for air. Please look into a nuersugeon that knows nerves.hensaid he believes that i will heal in time. I know that i will. Ellie
And ressing
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.
Ellie, thank goodness. . . . .I have every hope that you will be able to start again and in time be nerve pain free. Everything, everything crossed for you xxxxxxxx
That is exactly the surgery that I need and of course similar to Paulette. Thank goodness you didn't simply give up. Let us know how you progress as I'm sure you will.
take lots of 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.
HI Ellie,
I'm so very glad Dr. Chambi was able to help you. I'm confused about this statement, though:
river133 wrote:So in fact my pn was never releasedby dr antalok. He said nerves need to follow the spine down not distally.meaning distance away.
Your Op report from Dr. Antolak describes him releasing the main trunk of the PN from scar tissue. The TG approach doesn't allow access to the level of the piriformis, just as it doesn't allow access to the dorsal branches. All of the surgical approaches are limited. Including Dr. Chambi's. Thank goodness he was able to address this area for you.
I hope you're able to start healing now. I'm very excited for you that you can already feel a difference!!!!
Lots of love and 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.
Karyn my love, I really do not understand much of how Dr Antalok did release the pn.. In fainess to Dr. Antalok, I should not have said that... I just know now there is a big difference with the rectal pain... I just hope it lasts... I must have had numerous nerves released by Dr Chambi? Paulette and you know so much more and understand the workings of the neves and muscles than I do.. I am just going by what Dr. Chambi told me... My biggest question now is how long will it take for the incision to heal by my hip,,,, That is very painful. a few weeks I am thinking.... 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.
Dr. Chambi called me and explained more of what he did. He said most of my piriformis muscle is gone. He said :it was awful Ellie:. So much
scar tissue pressing on the nerves against the bone. . He released 3 nerves or was it 4\' . He also said that dr. Antalok is not a nuerseogeon and can not release the way he does. So it really was all for naught so to speak.. I am still in pain but he said that I will get better slowly. Just wanted to keep you updated. 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.
Stick a hot poker up his rear and then make a judgement... I will be having a consult with Dr. Chambi and possibly surgery the following day... will keep you posted....
hot pokers at the ready 
