Out of options, Fearful - Told I must do Surgery or Med

[fguerra]

Hi everyone, I am in real trouble currently having just had my 2nd round of CT guided injections about 8 weeks ago in Houston (Memorial sugarland ordered by Dr. Renney)

My pain at first went away and I was doing great. Now being beyond 8 weeks, I am in horrible pain when sitting, can't bend over at all, stopped all exercise and spent most of my time in bed over the last month.

According to Dr. Renney, I need to chose living on meds to stop the pain ( elevel, neurontin etc) or get the surgery with Dr. Ansell.

I believe my situation is one that requires surgery to ever have a chance at any form of recovery. ( Alcocks canal shot triggered this event)

So, reluctantly and now with seemingly no other way out of this hell, I am going to see Dr. Ansell.

This has a been a long and horrible road to travel and frankly I don't know what to do next because of the possibilities of making this worse which is what just happened to me after getting the shots. (since 2nd round of shots, can't wear pants because of the pain caused, bowel movements start pain imediately, sitting is hell..)

Questions I had:

1. What causes people to be out of commission for 4-5 months after surgery? Is that the norm? Will I be able to sit or function at all during that period...very fearful on this one...I need to be working...like most people

2. What is the best procedure to have? What has the greatest probablility of getting relief? ( My problem is in the alcocks canal per my shot which badly exacerbated that site and now has left me almost completely disabled)

3. How long after surgery can you go back home? I live 3 hours from Houston where the surgery would be performed and am sure flying or driving after this surgery is bad news.

4. What has your experience been with surgery? Does it really take years to get better if at all?

I am extremely fearful about long recovery, being unable to work, the chance I may lose sexual function, being on heavy narcotics for long periods, and a million other things regarding the risks.

I really appreciate any insight anyone may have as the decision to have this surgery weighs very heavy on my mind because of the possible bad outcomes.

Thank you in advance for sharing your experience,

F Guerra
Austin, Texas

[nyt]

I am so sorry to hear of your continued troubles. You have asked very important questions.

1. Not everyone is out of commission for 4-5 months. It varies from person to person. There are restrictions that are gradually lifted and it is dr. dependent.
2. The best procedure to have is the question we all struggle with even the PN dr.'s don't agree on the best approach. I would suggest you look through the old threads and read about the different PN dr.'s and their approach. Also, below is the link to the main page of HOPE which a nice explanation of each of the surgical approaches.

http://www.pudendal.info/node/23

3. Returning to work is based on your dr. but 8-12 weeks. You personally won't be able to drive that far but you can certainly ride. Many of us have flown long distances for treatment and/or surgery so it can be done. There are lots of suggestions on how to deal with post-op travel.

4. I will most likely have the pudendal surgery next year after I recover more from surgery I just had to remove a sling and release the obturator nerves. The dr.'s will tell you that it can take up to 2 years before you know the results of the surgery. Some individuals have significant relief right away, others gradually get better, some no improvement and some get worse after surgery. The dr.'s I have seen for my PN (3 PN specialists) are very upfront that there are no guarantees with the surgery.

You might want to consider a 3T MRI in NYC with Dr. Hollis Potter or see if Dr. Hibner's office in Phoenix has changed their 3T MRI protocol to what Dr. Hollis Potter is doing or an MRN. This might help figure out where the scar tissue is and possibly other sites of entrapment along the pudendal nerve.

Have you tried botox injections into the pelvic floor?

[HerMajesty]

A lot of people have been choosing not to go with that team of Docs, because other surgeons doing pudendal nerve decompression surgery repair the pelvic ligaments during the surgery, while the Houston team cuts the ligaments and then does not repair them, which can lead to later problems due to pelvic instability.
I am glad you are here because you should never be told that your options are only limited to plan A or plan B; look around here and you will see there are plans C, D, E, F, G, etc as well.
My guess is that they are correct you would need surgery, because if the precipitating event was an injection into Alcock's canal there is a good chance that you have scarring there. But, you can research the various surgical techniques and the various surgeons and make an informed decision about who will work on you. Surgery is a step you should take when you feel confident and hopeful, not backed into a corner.

[MsRivers]

I just want to say "welcome" to you. I noticed you are from Austin, TX. My family lives nearby in Bastrop. I love Texas.

The folks have replied to you very well. Have you tried physical therapy? I'm doing that now but have not had much luck. I know that there's a gal in Austion named Kimberly Sullivan (spelling may be off) and can get you her contact info if you want it.

Celeste is one of the person's who posts here that had good results with the Houston group. You may want to look up her posts or private message her.

Best wishes and a speedy recovery in whatever you decide to do.

Ms. Rivers

[Celeste]

A lot of people have been choosing not to go with that team of Docs, because other surgeons doing pudendal nerve decompression surgery repair the pelvic ligaments during the surgery, while the Houston team cuts the ligaments and then does not repair them, which can lead to later problems due to pelvic instability.

Truthfully, a lot of people still go to the Houston team. Even more truthfully, only one doctor offers "ligament repair"; it hasn't always been shown to produce desired results and no one has chosen to copy this procedure.

I am not the only person cured of pain by TG surgery in Houston, nor am I the only one without pelvic instability problems. I wish more people would come to the forums and talk about their good results. I know them in real life and on Facebook, and my feeling is that pelvic instability from this surgery is a truly rare occurrence. I spoke to one person (Richard) who was cured of his pain by TG surgery who said he did have pelvic instability as a result. Rather than being some disabling problem, it was easily managed by a bit of daily exercise. The surgery worked to cure his neuropathic pain when nothing else did, yet he was a tireless critic of the surgery and thought people should just do PT instead, even though PT was not something that had brought him relief. Food for thought about where these things come from when we talk about "a lot of people say".

[gracie]

Hi,
I agree that you should research all the different doctors and procedures they do. I had the TIR surgery in New Hampshire. It is about a 4 hr drive. I stayed in a hotel with someone there with me the whole time. For the first few days I layed in the bed and read and watched TV and enjoyed conversation with my friend staying with me. My brother came to get me in his truck and I put a cushion under my butt and layed the seat back. Once at home, I was able to get up and down the stairs no problem. I used the cushion to sit at all times. I mostly layed back for the first 2-3 wks. I stood up to eat and did no house work, cooking etc. I had family that came over often to do these things. I went a little stir crazy at times, but I knew if the surgery was going to be successful I had to follow the instructions. I was out of work for 10 wks. My work got me a stand up workstation. I don't mind it at all. It has been 10 mos since surgery. I still take meds, but I am living somewhat normal. I went to NH because it was the most convenient as far as travel. I do think though if it is possible for someone to travel by plane, then definitely look into all the doctors and go with who you think can make you better. I think it is worth it do it right the first time. I know I don't want to go through another surgery. It seems to me that there are people who have had success with a number of different doctors and there are people who have not had any success with the same group of doctors. My opinion is they all want to help us, but they are human and can only do the best they can do and they are not miracle workers. We all have different symptoms and the research on this is still in the process. Just go with your instincts. I pray you will get the best possible care.
Gracie

[AliPasha1]

Hi F Guerra,
I have known quite a lot of people who have developed SIJD and other Pelvic issues after both their Sacrotuberous ligaments and Sacrospinous ligaments were severed either by the Houston team or the Professor Robert of Nantes who originally came up with the TG approach.

You can either opt for Dr. Michael Hibner in Phoenix Arizona because he repairs the Sacrotuberous ligament or to a less invasive TIR approach by Dr. Bautrant who leaves the Sacrotuberous ligament alone.However,you have to keep in mind that Dr. Bautrant doesn't access the Sacrotuberous ligament and if you are entrapped at the Sacrotuberous ligament or the falciform process of the Sacrotuberous he might not be as successful.Although, a confirmation by Dr. Bautrant is still pending whether he addresses the falciform process of the Sacrotuberous ligament.

Under no circumstances,don't opt for any surgeon who doesn't repair the Sacrotuberous ligament beccause it is pivotal for Pelvic stabilty.

If I were you,your next step should be get an MRI of the Pelvis with Dr. Hollis Potter in NYC and get an idea where you are exactly entrapped and secondly get an appointment with Dr. Hibner asap, since he has quite a que of patients lined up for surgery.

As far as returning to work after surgery,a safe bet is between six to nine months after surgery.You can go on your company's short term disability and further on Long term disability if required.

Regards,
Ali

[Celeste]

I went back to work 6 weeks after surgery. My incision was healed and I had no difficulties, though I did continue to use a seat cushion for a short period.

[AliPasha1]

That is the statement of the Houston team and that's what Dr. Renney tells everybody about the recovery period.Normally,it takes at least three months for the incision to heal and 9-12 months to assess the outcome of the surgery.It can take 9-18 months for the nerve to heal ,although there are always exceptions.

Regards,
Ali

[mikette]

sorry, when you talk about "Pelvic stabilty" do you mean pelvic floor prolapse or something similar?
what does pelvic instability produce, which are the effects?