Hi All,
I have decided to undergo Crylotherapy of the illionuingal nerve to hopefully give me some relief. I was diagonised in additional to Pudendal Neuralia Illionuingal Neuralgia. I have already had the nerve entrapment surgery two years ago however all my sypmtoms have returned and my dr has no answers.
My pain dr who is performing the surgery is also going to put me on a ketermine drip for aweek to try and lower my pain levels fingers crossed it will work.
My medication has been changed and i am coming off the Lyrica and going back on the neurontin 2400mg and Lamictal 200mg so fingers crossed it all works for me.
Crylotherapy of the Illionuingal Nerve
Re: Crylotherapy of the Illionuingal Nerve
Erin, that is truly a nightmare that you are going through and what we all fear in the back of our heads is that the symptoms will come back. Will be praying and hoping that these procedures work for you and give you some quality of life back.
Hugs,
Violet
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.
Re: Crylotherapy of the Illionuingal Nerve
My sentiments, exactly. I'm so very sorry! I wish you the very best with the crylotherapy and sincerely hope for less pain for you.Violet M wrote:Erin, that is truly a nightmare that you are going through and what we all fear in the back of our heads is that the symptoms will come back. Will be praying and hoping that these procedures work for you and give you some quality of life back.
Warm regards,
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.
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: Crylotherapy of the Illionuingal Nerve
I am so sorry to hear about the return of the pain. Ketamine is such a great drug if he believes you have RSD/CRPS. You might want to check out the forum on NeuroTalk on RSD or Facebook Ketamine Klub (this you can only get with an invitation but if you email someone on the list they can get you added). There is a fair amount of information on people's experience with Ketamine in these two places if you are interested. Who is the dr. doing the Ketamine?
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
- helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Crylotherapy of the Illionuingal Nerve
So sorry that you find yourself in this situation. I think I saw that the Ilioinguinal nerve innervates the inside of the thigh, do you get any pain or numbness there at all?
Wishing you every best wish for future treatment.
Wishing you every best wish for future treatment.
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: Crylotherapy of the Illionuingal Nerve
My fingers are definitely crossed for you. I'm so sorry that you are dealing with so very much. You are a brave woman.
cari
cari
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Re: Crylotherapy of the Illionuingal Nerve
Good Luck, Erin.
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
-
Stephanie P
- Posts: 74
- Joined: Mon Oct 11, 2010 10:06 am
Re: Crylotherapy of the Illionuingal Nerve
Hi Erin,
You know that I'm thinking of you and sending love and supportive thoughts.
Steph
You know that I'm thinking of you and sending love and supportive thoughts.
Steph
Pudendal neuralgia, diagosed as ischial bursitis, from 1985. Worsened by fall in 2003. Bilateral TG surgery in Nantes 2004. Nerve flattened both sides. No improvement, still cannot sit.
Re: Crylotherapy of the Illionuingal Nerve
thankyou all for your support im getting quite nervous and its two weeks away.
had a massive arguement with my mother today she never understands she wants me to work n i cant doesnt want me to be on a ketermine infusion ive just run out of answers
had a massive arguement with my mother today she never understands she wants me to work n i cant doesnt want me to be on a ketermine infusion ive just run out of answers