Post surgery update

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Barb
Posts: 92
Joined: Fri Aug 31, 2012 3:14 pm

Post surgery update

Post by Barb »

Just wanted to update everyone on my recovery from TG surgery. It's been a little over 3 months since my surgery. The only consistency in my recovery is the inconsistency. It is TRULY a roller coaster as everyone has said.......good some days, very bad the next. It is also true that at the 3 month period, it seems that everyone has an increase in pain. I have gotten an email from the doctor and he said the increase in nerve pain at this stage is very normal. (nice to know...hard to live with)

I do have some questions for those of you have come through surgery and are further down the recovery road. My main pain seems to still be the numbness and soreness in the gluteal fold and down the back of the leg. Now I have not only the tingling in the areas, but also the little zings in the back of my leg.......nerves coming back to life??? It is still painful to sit.

Yesterday was a particularly tough day. The pain was more inside the vagina close to the back wall at what I can only assume is the ischial spine, but it could be closer to the obturator internus. Is this healing of the nerve? It really is maddening and yes you do second guess the decision. I can only hope this calms down SOON :(

I will say that before I hit the 3 month stage, I felt pretty good, so I will continue to hope by the 6 month period, I will report improvement.

Would love to know some coping mechanisms by others. I have tried hot and cold showers ( an adaptation of Violet's hot and cold crates). I also love music....it really distracts the pain for me. Any other ideas would be appreciated.

Thanks.
Barb
12/10- Vaginal prolapse surgery. Surgeon used mesh. Had incredible complications.
11/11- mesh removed at UCLA.
PT diagnosed hypermobile SI joint
5/13- Potter MRI.... pelvic floor scarring causing entrapment of the inferior perineal branches and the dorsal nerves to the clitoris.
9/13- Prof Aszmann discovered entrapment at ST/SS ligament causing more pain than dorsal nerve....he opted for TG surgery. Also had injection to calm down inflammation at ischial tuberosity. Still healing
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nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: Post surgery update

Post by nyt »

The roller coaster ride is very difficult. Be very careful about over doing it.

You might want to have someone try some gentle massage on the back of your leg. I found that helpful but mine had to be very gentle. I do not know how Dr. Aszmann feels about pelvic floor PT but I started mine about 3 months after surgery. She just did very gentle scar manipulation, desensitization, and gentle massage. It took some time before we could add nerve glides but everything was very slow. I also used meditation tapes. I downloaded some free ones onto my ipod plus I had a few CDs. Still use them. Watched a lot of movies esp. ones with humor that would make laugh, talked to friends on the phone and tried not to talk about my recovery but other things. Anything to keep distracted. Still use a lot of distraction to this day.

Keep us posted on your progress.
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
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Barb
Posts: 92
Joined: Fri Aug 31, 2012 3:14 pm

Re: Post surgery update

Post by Barb »

Thanks nyt,
I am trying a lot of the same things. I agree that distractions help. I tried that today on a very long trip in the car. We have an SUV and I laid in the back for part of the day and watched a movie, but I started getting sick when we were going through the mountains, so I sat in the front seat for about three hours and I am hurting tonight. I am afraid I will be hurting tomorrow and we still have another 8 hours in the car to get to our destination. We have straight roads tomorrow, so it's the back seat for me.

It is hard when you have to limit your life because of this condition, but everyone on this site knows that feeling. I still want to feel normal, so I am afraid I pushed it today. Ice feels good tonight.

Thanks again.
12/10- Vaginal prolapse surgery. Surgeon used mesh. Had incredible complications.
11/11- mesh removed at UCLA.
PT diagnosed hypermobile SI joint
5/13- Potter MRI.... pelvic floor scarring causing entrapment of the inferior perineal branches and the dorsal nerves to the clitoris.
9/13- Prof Aszmann discovered entrapment at ST/SS ligament causing more pain than dorsal nerve....he opted for TG surgery. Also had injection to calm down inflammation at ischial tuberosity. Still healing
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Barb
Posts: 92
Joined: Fri Aug 31, 2012 3:14 pm

Re: Post surgery update

Post by Barb »

We made it to our destination, but I am afraid I sat for too long in the car. I did lay down for a few hours, but I think I may have really hurt myself by sitting in the front. I was almost in tears by the time we got here. Normally I would be so excited because I love the beach, but I just wanted to go to bed with an ice pack and cry.

Can anyone tell me if they have any experience with sitting too long the first few months after surgery and if they did any permanent damage. I hope and pray things will calm down in a few days. I really want to enjoy my stay.

Thanks everyone.
Barb
12/10- Vaginal prolapse surgery. Surgeon used mesh. Had incredible complications.
11/11- mesh removed at UCLA.
PT diagnosed hypermobile SI joint
5/13- Potter MRI.... pelvic floor scarring causing entrapment of the inferior perineal branches and the dorsal nerves to the clitoris.
9/13- Prof Aszmann discovered entrapment at ST/SS ligament causing more pain than dorsal nerve....he opted for TG surgery. Also had injection to calm down inflammation at ischial tuberosity. Still healing
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Post surgery update

Post by Karyn »

Hi Barb,
I'm sorry your trip has increased your pain. I hope you're still able to enjoy some of it!
IMO - it's unlikely you've done permanent damage from sitting too long. But to help with your recovery process, the moment you feel increased pain from ANY activity, please stop.
I completely agree with you about the roller coaster ride and the consistency of inconsistency! ;) Personally, I found the restrictions much more difficult to deal with than the pain. But restricting myself was key with helping to keep pain levels down.

Kind 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.
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Barb
Posts: 92
Joined: Fri Aug 31, 2012 3:14 pm

Re: Post surgery update

Post by Barb »

Thanks Karyn.....I am writing this on the couch with an ice pack, but I am also looking out at beautiful sunshine and palm trees. It is hard to complain too much. I am sure the pool and water walking will be good therapy. I have told myself to take it slow, as I know this recovery is not like recovery from any other surgery, but then I go and do something dumb like sitting for hours. I did have cushions.....two, actually, but it wasn't enough. I will listen to my body now and stop when something hurts.......thanks :)

Can you tell me what your restrictions were and when you felt comfortable doing more things like bending, exercising, walking, etc. I didn't have a lot of restrictions from Dr. Aszmann. I have looked at some of the post op guidelines by other doctors and I do some of them. I have a gripper to pick things up off the floor...and it has been a life saver.

When did the soreness and numbness around the incision start to subside ? I thought by now the numbness would have worn off, but it is still very sore around the ischial and gluteal fold. Every recovery is different, i know, but it sure is easy to get down because things are not happening at a faster pace.

Thanks again
Barb
12/10- Vaginal prolapse surgery. Surgeon used mesh. Had incredible complications.
11/11- mesh removed at UCLA.
PT diagnosed hypermobile SI joint
5/13- Potter MRI.... pelvic floor scarring causing entrapment of the inferior perineal branches and the dorsal nerves to the clitoris.
9/13- Prof Aszmann discovered entrapment at ST/SS ligament causing more pain than dorsal nerve....he opted for TG surgery. Also had injection to calm down inflammation at ischial tuberosity. Still healing
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Post surgery update

Post by Karyn »

Hi Barb,
Sitting is really, really hard not to do. I still avoid it, whenever possible. Cushions can be very helpful, but the bottom line is: you're still compressing the nerves by sitting; no matter what or how many cushions you use.
In addition to having PNE, I also have Tarlov Cyst Disease. My PNE decompression was helpful, but I still have PN due to the cysts.
As far as physician recommended restrictions go; you're right ... everyone is different. For example, it took about 5 - 6 months before I could bend a bit easier. I have a friend who also had bilateral surgery and was tying shoes on her feet after 4 weeks. Honestly, I didn't follow the post-op guidelines I got from Dr. Conway. Instead, I followed his verbal instructions: "If it hurts, don't do it!" :)
I was taking short walks about three weeks after the surgery. Not pain free, but going for walks wasn't doable before surgery. In a nutshell, it took about six months for me to become a bit more functional. It took 4 - 5 months before my incisions became less sore. I still get periodic numbness in the gluteal fold.
Things will improve, Barb. Recovery/improvements really should be viewed in terms of months and years, instead of days and weeks. I say this because it happens so very slowly that sometimes it's hard to notice! But eventually and hopefully, you'll notice that some pain isn't as bad and flares aren't as intense or last as long.
Best wishes with the remainder of your vacation! I wish I were there!!! :D
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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Barb
Posts: 92
Joined: Fri Aug 31, 2012 3:14 pm

Re: Post surgery update

Post by Barb »

Thanks so much for the good advice and support. Hopefully, this time next year I can see a big improvement. At any rate, I will take it easy for now and not push it. This was a good lesson for me. :)

Barb
12/10- Vaginal prolapse surgery. Surgeon used mesh. Had incredible complications.
11/11- mesh removed at UCLA.
PT diagnosed hypermobile SI joint
5/13- Potter MRI.... pelvic floor scarring causing entrapment of the inferior perineal branches and the dorsal nerves to the clitoris.
9/13- Prof Aszmann discovered entrapment at ST/SS ligament causing more pain than dorsal nerve....he opted for TG surgery. Also had injection to calm down inflammation at ischial tuberosity. Still healing
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Barb
Posts: 92
Joined: Fri Aug 31, 2012 3:14 pm

Re: Post surgery update

Post by Barb »

I wanted to give an update on my recovery to give everyone some hope. It has been 4 and 1/2 months since my surgery, and I am doing very well. The nerve pain is much better. Of course, I am not sitting for extended periods of time, but I just returned from vacation and I was able to swim and water walk and go out to dinner ( with my cushion) and enjoy myself without a lot of pain. I did have one pretty bad flare, but it didn't last a long time. I have realized that I am going through the days without PNE dominating my every thought. I know I still have a long way to go and I am continuing to listen to my body and take this slow.

I have also started celebrating the baby steps and I am not expecting too much, too soon. I hope this helps others who are struggling with post-op recovery and wondering if they will ever get better. I do still have the gluteal fold soreness and the soreness around the incision area and numbness down the back of my leg, but I know this will take awhile.

The encouragement I have received here has helped me so much, so I am passing it on to others. Hang in there...... It does get better.

Regards,
Barb
12/10- Vaginal prolapse surgery. Surgeon used mesh. Had incredible complications.
11/11- mesh removed at UCLA.
PT diagnosed hypermobile SI joint
5/13- Potter MRI.... pelvic floor scarring causing entrapment of the inferior perineal branches and the dorsal nerves to the clitoris.
9/13- Prof Aszmann discovered entrapment at ST/SS ligament causing more pain than dorsal nerve....he opted for TG surgery. Also had injection to calm down inflammation at ischial tuberosity. Still healing
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janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: Post surgery update

Post by janetm2 »

Barb,
Good job and hoping for continued success. Thanks for giving others the positive info.
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.
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