Hi Sweet Ellie,
I sincerely hope you'll start to feel better soon! It was very nice of Dr. Chambi to call and check up on you. Dr. Chambi is right - Dr. Antolak is not a neurosurgeon. Most who perform the PN releases aren't. However, the reason why most PNE'rs have their surgeries with Dr. Antolak, Dr. Conway, Dr. Marvel, Dr. Hibner, etc .... is because they can't find a neurosurgeon to take their case. For the most part, I have very positive feelings about Dr. Chambi. However, I'm not sure I agree your surgery a year and a half ago was for naught. Unless of course, your only site of entrapment was at the piriformis level. Does he have any evidence of that?
Well, at least you have some explanations for your pain, hon. Hoping you see some improvements soon!!
Oooodles of love,
Karyn
Maybe another surgery
Re: Maybe another surgery
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.
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.
Re: Maybe another surgery
Karyn he is going to send me an operative report. He said he saw the piriformis pressing the nerves on the pelvic bone floor. The piriform muscle was so badly damaged from an old injury. From a fall or something.-He gave me a picture of the damaged piriformis.It looks awful. It was pressing and making the nerves flat. Now the are round as they should be. Henhas been decompressingn nerves for 25
yearss. I think i am repeating myself. Better quit. Ellie
yearss. I think i am repeating myself. Better quit. 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.
Re: Maybe another surgery
If you look at Dr. Beautrant's website, you can see what Dr. Chambi meant by releasing the nerves proximally. As Karyn, said, the TG route does not allow the surgeon to visualize the area where the pudendal nerve tunnels under the piriformis. It is very high. I saw this on a diagram on Dr. Beautrant's website. Dr.Chambi does have an advantage with the surgical microscope. It allows him to visualize the entire pelvis, beginning proximally as he would say. He is then able to continue distally, to the clamp. I don't know think he attempts to decompress anything at the Alcock's canal, and I seriously doubt that he tackles the dorsal nerve root. We just keep learning.
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Maybe another surgery
From what you have described from this latest surgery Ellie,it was very necessary and I'm sure you will feel even more benefit with time.
I remember reading about Dr Chambi some long time ago when I first started learning about piriformis syndrome, PN and pelvic nerve entrapments. I suppose he is a little like Dr Filler (both neurosugeon's) without the hype attached (I may be way of the mark, and anyway, I do like Dr Filler).
I will champion anyone who is willing to step outside the medical box in order to help us. I think that this is exactly the surgery that I need (think I mentioned that earlier, but am a bit excited)
Hope you are progressing too Paulette and Karyn. My heroines, each one of you
.
Every best wish,
Helen
I remember reading about Dr Chambi some long time ago when I first started learning about piriformis syndrome, PN and pelvic nerve entrapments. I suppose he is a little like Dr Filler (both neurosugeon's) without the hype attached (I may be way of the mark, and anyway, I do like Dr Filler).
I will champion anyone who is willing to step outside the medical box in order to help us. I think that this is exactly the surgery that I need (think I mentioned that earlier, but am a bit excited)
Hope you are progressing too Paulette and Karyn. My heroines, each one of you
.Every best wish,
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: Maybe another surgery
Agreed! This is one of the things I find most interesting about him. If he see's pathology with another nerve (besides the sciatic or PN), he actually addresses it!paulette wrote: Dr.Chambi does have an advantage with the surgical microscope. It allows him to visualize the entire pelvis, beginning proximally as he would say.
Well, this is where I think Dr. Chambi is a bit short sighted. We have a mutal friend, Paulette, who consulted with Dr. Chambi for a PN decompression. Our friend was discouraged with following through with him because Dr. Chambi informed our friend that it was extremely rare to have an (PN) entrapment in the ST & SS ligaments.paulette wrote:He is then able to continue distally, to the clamp. I don't know think he attempts to decompress anything at the Alcock's canal, and I seriously doubt that he tackles the dorsal nerve root.
He didn't come right out and say he wouldn't go there, but our friend got the impression it was something Dr. Chambi wasn't experienced with. I'd be very interested to know just how much of the PN he can actually decompress.
I'd be excited if I were you, too, Helen! Heck, I'm excited for you!!!!helenlegs 11 wrote: I think that this is exactly the surgery that I need (think I mentioned that earlier, but am a bit excited)
I do agree with you that this particular surgical approach may suit your needs.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.
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.
Re: Maybe another surgery
This morning we went out for breakfast. I sat for an hour without that horrible stabbing pain.--burning yes . Afte I took our dog for a half hour walk. Dear Lord I believe I am in heaven. Still have sciatic pai but that is improving in leaps and bounds. Surgery was a weak ago today. My nerves are reay free this time. Thank you Dr. Chambi. :
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.
Re: Maybe another surgery
How wonderful to hear, I hope you keep reaching up for the stars!
Janet
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: Maybe another surgery
Hi Ellie,
Thank you so much for sharing your ups and downs. What a journey you have had. I sincerely hope Dr. Chambi keeps at it, and can help more and more sufferers.
You are an inspiration.
Again, thanks for sharing. Hoping you have more ups now, than downs
Debbie
Thank you so much for sharing your ups and downs. What a journey you have had. I sincerely hope Dr. Chambi keeps at it, and can help more and more sufferers.
You are an inspiration.
Again, thanks for sharing. Hoping you have more ups now, than downs
Debbie
Vag pain, leg burning 3/11, SIJ inj 7/11, Pelvic PT, Chiro/acupuncture,
2-CT pudendal blks 11/2012, did help, less deep vag pain
Potter MRI 04/2012 - Scar tissue/thickening at SS/ST, scar in Alcock canal -bilateral,
Hibner 6/12 suggests Botox (didnt do), 8/12 more pelvic PT w/ dry needling
Gabapentin 1800 mg, Lyrica 200 mg, 5mg valium, vicodin as needed
Trying to get rid of central sensitization burning pain in my legs, Valium seems to be helping
Looking into more mindfulness options. . . . .
2-CT pudendal blks 11/2012, did help, less deep vag pain
Potter MRI 04/2012 - Scar tissue/thickening at SS/ST, scar in Alcock canal -bilateral,
Hibner 6/12 suggests Botox (didnt do), 8/12 more pelvic PT w/ dry needling
Gabapentin 1800 mg, Lyrica 200 mg, 5mg valium, vicodin as needed
Trying to get rid of central sensitization burning pain in my legs, Valium seems to be helping
Looking into more mindfulness options. . . . .
Re: Maybe another surgery
Today is-more of a down day. Only to be expected. . What a releif to have the trip and the surgery
behind me.. we can all be so grateful for Paulette and Karyn. Their knowledge and compassion surpasses all. The two of them helped me to decide on my choice to see Dr. Chambi. My husband and I decided it would be a good choice. I still need to speak with Dr. Antalok. Praying for all that suffers wth this dreadful disease.Ellie
behind me.. we can all be so grateful for Paulette and Karyn. Their knowledge and compassion surpasses all. The two of them helped me to decide on my choice to see Dr. Chambi. My husband and I decided it would be a good choice. I still need to speak with Dr. Antalok. Praying for all that suffers wth this dreadful disease.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.
Re: Maybe another surgery
I really would like o know of anyone that has been helped with-the tg approach. I have so many questions for the Dr.s that are doing pn decompressions. Why could Dr Antalok not see that all 4 of my nerves were pressing on bone of my pelvic floor. Why did not he do further testing to find all of this out..I-just do not want any one else to have to go through what I did. If it would not have been for Paulette I would have gone on just getting worse and worse. . Are there
people out there that have been helped by any of these drs.. Ellie
people out there that have been helped by any of these drs.. 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.