Managing the First Week Post-op Alone

[nyt]

Luckily things worked out yesterday that the hubby can go with me . I appreciate all the advice and PM's with all the great suggestions.

We are renting a house that is 0.5 miles from the hospital for $60.00 a night. I found it on homeaway.com. The owners live in the main house and rent out the cottage/bungelow that sleeps 4 people with 2 bedrooms. I'll let people know how it goes just in case people would prefer to have more space, cook for themselves and lounge by a small private pool. If I really like it I'll ask if they give special rates for individuals coming to the hospital esp. during the summer when most renters in Phoenix have a hard time renting their places.

I'll be glad when this is over. It took me 3 years to finally bite the bullet. Dr. Hibner will do the right side and see how I do but I am anticipating I will have the left side done next year just from my symptoms and the confirmation by Dr. Potter's MRI.

It is highly likely the surgery is going to be videotaped. So, RJR you might have some butt competition

I told one of Dr. Hibner's office personnel yesterday that when this is all over I am going to get a tattoo on my butt and let them vote on which one it should be. She thought it was pretty funny.

[Lernica]

NYT,

That's great news about your hubby going with you! That will make all the difference in the world. It sounds like you found a nice place to recover in. Good luck with everything and please keep in touch. I hope the surgery will be the beginning of an end to your pain.

Lernica

P.S. What's "TOT" (in your signature)?

[Karyn]

Hey Nyt,
I'm weeping with relief because you don't have to do this alone!!!! Thank Gawd!!!!
The bungalo sounds fantastic! What a great idea!!!
I love your sense of humor about the surgery and getting a tattoo! Currently, I only have one and it's on my right ankle. Any guesses of what it is? Yup - a Fairy!
But it would be neat to get another one, somehow using our 4" vertical scars. Got any ideas???
Best wishes with your upcoming surgery!
Warm regards,
Karyn

[nyt]

Lernica, TOT stands for Transobturator Tape. It is a bladder sling and is named based on how the sling is placed. Worst decision I every made!!!

Not sure what I'll have tattooed but unfortunately it won't be until next year because I'll wait until both sides have been done. There is a RN in out city that is a tattoo artist that works with the local dr.'s who do breast reconstruction for cancer patients that have had mastectomies. She tattoos on nipples free of charge but she also does beautiful work covering up scars for those who do not have reconstruction. They had an article in the Sunday newspaper about her and they showed these wonderful pictures of vines or flowers or snakes that worked right into the scar and some of these woman had very large extensive scars. The stories told by these women who had tattoos and how it helped them deal with the change in their body image made me cry. When I'm ready I'll let everyone know what's going on the derriere .

[Lernica]

Thanks for the explanation, NYT. What's "LFCN"? It sounds like your 2007 surgery screwed up every nerve in your pelvis. I'm sorry for you.

[susibee]

nyt,

I wanted to wish you good luck with your Dr. Hibner surgery!

Whatever came of your assessment by Dr. Dellon? Do you not feel those nerves were the culprits? (I'm assuming you didn't have surgery with him and your signature refers to his diagnoses only?)

[nyt]

Lernica, LFCN is the lateral femoral cutaneous nerve. And yes, the physician who did my surgery in 2007 did mess me up . It is very hard not to wish evil on him.

Susibee, regarding Dr. Dellon, I really liked him and he is an exceptional physician. I was not surprised by the majority of what he told. What surprised me was what he thought about my legs which I wasn't sure I wanted the surgeries on my legs he was recommending. He doesn't take insurance and the surgery he is recommending was very extensive and very expensive. I wanted a 2nd opinion for the surgery on my legs so with some research I contacted a Dr. Ducic, he trained with Dr. Dellon and takes my insurance. Dr. Ducic has you fill out a questionnaire before he sees you. He sent me back a detailed note stating that in the over 8,000 peripheral nerve surgeries he has done that if an individual has more than 5 peripheral nerves that need surgery, (I need 12 on just the front, does not include my backside), the outcomes are not good and due to the invasiveness of the surgery and risks he felt a spinal cord stimulator would be a better option. I spoke with both Dr. Hibner and Dr. Howard and they both felt that the surgeries were too extensive and we should start with the known, the pudendal, see how I do and then do a more step-wise approach. The MRI with Dr. Potter confirms the pudendal entrapment bilaterally and the areas of entrapment match my symptoms perfectly. Dr. Hibner maintains his usual statistics, not promising anything, Dr. Howard is more optimistic that this surgery will help, won't cure me but should help. I have been in communication with Dr. Dellon who has been very receptive to doing a few nerves at a time. Part of the surgery he is recommending Dr. Howard can do. So the plan for now is pudendal surgery with Dr. Hibner with botox into the pelvic floor and maybe Ketamine during the surgery to stop any flare of the RSD in my legs. When I see Dr. Howard post-op we will discuss what the next plan of attack will be. I have my list of questions started for him. Don't know how Dr. Howard puts up with me .

I am really reluctant to have too many surgeries for fear of spreading the RSD. Plus, more surgeries equals more scar tissue both could cause me more problems than I already have. I know what I live with day to day and if some surgery made me worse I'm not sure I could deal with that emotionally or physically. One thing I wish I had a better handle on is how much of my pain is central nervous symptom in origin and that none of these surgeries would make a difference because of that. I don't think that for my pudendal because my pudendal symptoms are much better after nerve blocks. I usually get 2-3 months of marked improvement in those symptoms. They are never gone but put it at a level that I can sit for a while, not have some constant unpleasant sensation in my perineum, and make my sex life much more enjoyable. It is an undending puzzle and many days I feel I am like an onion that the layers get peeled back slowly as the dr.'s figure out everthing that is wrong.

Thanks for all the well wishes and we have our fingers crossed here that this surgery will help decrease my pain.

[Lernica]

OMG, nyt, what a journey you've had. How many surgeries have you had so far? I've had five pelvic surgeries and am thus very reluctant to go under the knife again. I share your concern about more scar tissue. Plus, I am a very difficult patient to intubate. During my last surgery in November, 2010, the Chief of Anaesthesia needed ONE HOUR to intubate me. Thank God I was asleep the whole time. Imagine the havoc that I caused to the O.R. schedule that day!

I know someone else who has RSD in her legs and it is no picnic. Hers started with a neuroma in one foot, and it travelled up her leg and then into the other. Do you think yours developed from your 2007 surgery?

Re: your central nervous system. Are you currently taking any nerve meds like Neurontin or Lyrica?

I'm really feeling for ya, nyt.

[susibee]

nyt,

Thanks so much for taking the time to explain re: Dr. Dellon. Did he agree that the pudendal nerve was a problem?? It just seems weird to me that he focused on the LFCN and the saphenous nerve, only.

Anyway, regardless, I hope you find relief from your suffering with your new plan to take things one nerve at a time, starting with the pudendal. Sounds very wise, and I'm glad the surgeons are willing to work together on this plan.

Susibee

[nyt]

Dr. Dellon also diagnosed me with Il, IH, GFN and LCFN. On my updates I only added what new diagnosis he gave me. He also thought I had PNE but felt if I had these other surgeries first that maybe I could sit better just from them and be able to bypass the pudendal surgery. However, after getting the MRI from Dr. Potter after seeing Dr. Dellon it is quite clear that I need pudendal surgery.

My RSD started after the physician who did my hysterectomy and bladder sling manually pulled on the bladder sling to try and loosen it up at 16 weeks post-op. I almost screamed it was so painful.