10 days post op left side TG with DR Conway

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jen9952
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Joined: Thu May 05, 2011 9:07 pm

10 days post op left side TG with DR Conway

Post by jen9952 »

Hi I had left sided TG surgery on Sept. 23rd with Dr Conway , the surgery went well, he found that my pudendal nerve was growing through my sacrospinous ligament , and in his words a lot of scar tissue, which all sounded encouraging, and he got my EMG to a 2 !!
The first couple days were fine , they kept the epidural in , but as soon as they removed the epi , I had pain in my RIGHT hip that was so intense , I did not know if it was a spasm , from lying on that side so much in the hospital , so I stopped lying on it, got a bit better but still sore to the touch, I have some burning between my cheeks but short lived..I had to stop taking meds due to nausea , my legs are still a bit weak from surgery but better then after my first surgery TIR.
The problem I am having is the pain that I initially had , hip , leg and back pain on my left side are back, which is very depressing because I am afraid that I had the surgery for nothing and that I might of even made my symptoms worst!!! I woke up crying in pain, just as I have done prior to surgery, I am Scared!!!

Anyone who have had this surgery , did your symptoms go away immediately after surgery of did it take weeks, months???
Lernica
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Joined: Fri Jan 14, 2011 10:31 pm

Re: 10 days post op left side TG with DR Conway

Post by Lernica »

Jen,

I'm sorry about your continuing pain. I have not had PN surgery but from what I understand, it can take a very very very long time for a nerve to heal once it has been decompressed. Don't forget that the nerve was manipulated a lot during surgery and will need to recover from that, too. (If in any doubt about how much the nerve is manipulated during surgery, take a look at RR's video which he posted under Case Updates some time ago.)

So hang in there, Jen! There is light at the end of the tunnel, even if it seems far away . . .

Thinking about you.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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helenlegs 11
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Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: 10 days post op left side TG with DR Conway

Post by helenlegs 11 »

As Lernica said Jen, The nerve would have had to be manipulated, especially if there was all that scar tissue to deal with so 10 days is probably too early to tell much of anything. Easy for me to say as have not had surgery. The fact that Dr Conway found such a conclusive reason for your pain is significant. I hope things go well for you, and you continue to recover.
Take 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.
fguerra
Posts: 3
Joined: Mon Nov 29, 2010 2:47 am

Re: 10 days post op left side TG with DR Conway

Post by fguerra »

Hi Jen. I am now 20 days post op and had left TG surgery. It is just way too early to call in my opinion. Your body just went through major trauma. Most of my pain is just from the huge wound they created to get to the nerve. They go through one of the largest muscles in the body to get there.

I have had those moments where I thought "did this work?" and have stopped doing that because I am just not in control of the outcome. All I can do is eat well, move as much as I can, try not to overdo things, listen to my body, find other things to keep my mind occupied and let the thing heal on its own. I firmly believe that moving is healing so I have been walking as much as I can and will be swimming here in the next few days.

Big prayers out to you!!

I am pulling for you.

You are not alone for sure!!

FDG
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Karyn
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Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: 10 days post op left side TG with DR Conway

Post by Karyn »

Hi Jen,
How very encouraging that your EMG numbers came down! I was also one of the lucky ones who had their values come down significantly. As you've read in the above posts, healing does take time. I'm a bit concerned about this, though:
jen9952 wrote:The problem I am having is the pain that I initially had , hip , leg and back pain on my left side are back,
Those aren't pudendal symptoms. Have you been assessed by a PT to determine the cause in those areas?
I was surprised to learn you had an epidural for unilateral surgery. No pain pump?
Lernica wrote:Don't forget that the nerve was manipulated a lot during surgery and will need to recover from that, too. (If in any doubt about how much the nerve is manipulated during surgery, take a look at RR's video which he posted under Case Updates some time ago.)
While a certain degree of nerve manipulation is mandatory for release, not all surgeons perform in this manner.
Hang in there, Jen. Your PN symptoms will subside as time goes on! :D
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.
AliPasha1
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Location: New Orleans,Louisiana

Re: 10 days post op left side TG with DR Conway

Post by AliPasha1 »

Hi Jen,
I believe that these questions should be answered by Dr. Conway and he should take full responsibility to why these symptoms have occurred.

All the best,
Ali
Diagnosed for PNE by Dr. Jerome Weiss in June 2007.Started PT with Amy Stein in NYC.
PT for almost 3 years now without any results.
Pudendal Nerve blocks in August,2007 by Dr. Quesda left me with sitting pain.
Unilateral TIR approach with Dr. Bautrant on 18 Febuary,2010 with no major improvements and sitting is much worse.
MRI By Dr. Potter reveals nerve entrapment in the ST,AC and DN.
Dorsal Nerve Decompression surgery on April 8,2011
Redo surgery by Dr. Hibner on July 18,2011
jen9952
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Joined: Thu May 05, 2011 9:07 pm

Re: 10 days post op left side TG with DR Conway

Post by jen9952 »

Hi all, Thanks for the encouraging words, I know you are right and that it is way too soon to really tell if the surgery was a success yet , but patient is not one of my strong suits.

Karyn , thank you ,I did have a epidural and a pain ball, the epi was left in for two days at the hospital and then removed, I kept running high fevers of 103 until they remove it, I guess my body did not like it , and the pain ball was left in for a week until my follow up appointment. as far as my symptoms go , they were my symptoms all along, hip , buttock , sciatic leg pain , and low back pain, I never did have CLASSIC PN symptoms , but the MRI showed damage and scar tissue on the left side, so DR Conway said I was a good candidate for TG surgery , which BTW has been sooo much easier to deal with than my first surgery TIR...besides the same pain I had before the surgery and the new right hip pain.... it is not bad at all, the incision barely hurts , I can walk around a lot easier this time, so as far as the surgery experience piece of cake compared to my last :). Dr Conway did a great job ...I guess I just have to wait it out ,and hope things calm down.

Ali, thank you,I did discuss the new symptoms on my right side with Dr Conway, he thought that it was from lying on that side too much, so I have been lying on my back, and my hip is still sore to the touch, but better. as far as my left sided symptoms that still remain, I have not had a chance to speak with him about this yet, but I will when I see him next time, hopefully he will have some answers.


I want to thank all that responded, I am really going to try to be hopeful that this works out for me, and hopefully soon , you will be reading my post under success stories :)


Take care.

Jen
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helenlegs 11
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Location: North East England

Re: 10 days post op left side TG with DR Conway

Post by helenlegs 11 »

Jen, did you have any piriformis problems before surgery? You mentioned buttock, hip and sciatic pain which could all be due to a tight/spasmed piriformis muscle as I'm sure you know. If you had this symptom before surgery it would almost be inevitable that the p muscle would react to the surgery you have just had.
Hope things calm down soon
Take 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.
donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: 10 days post op left side TG with DR Conway

Post by donstore »

Hang in there, Jenn. Recovery can be a roller coaster. Wishing you all the best after all that you have been through.

Don
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
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Karyn
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Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: 10 days post op left side TG with DR Conway

Post by Karyn »

Hi Jen,
Wow! An epidural AND a pain pump! :o How did you like the pain pump?
Helen asked a very good question. I was wondering the same thing. I have piriformis syndrome, but I had it before surgery. Unfortantely, PN decompression surgery is not a fix-all.
If you went into surgery with the hip, leg, back, buttock pain ... it's likely you're going to have after, too.
I agree with you about the TG surgery - not that bad! Yes, the incisions were sore for a few weeks, but NOTHING compared to the nerve pain.
Walking was also much easier after surgery, too. Overall, the PN pain is almost non-existent. It's all of the other crap I've got to deal with now. I've made peace with "I'm not done, yet". ;)
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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