What to do...what to do...what to do!

[Barb]

Hello everyone,

I have been on recently asking some questions and reading...and reading.....and reading in hopes that I will know what to do. I am scheduled to have the anterior approach surgery with Dr. Aszmann in Sept. To say I am scared is an understatement. If I have learned anything these last several months it is that THERE IS NO MAGIC BULLET. I have done the research...I have had the 3T MRI and Dr. Aszmann has read the MRI and given me his impressions. I have even talked to him on the phone and asked tons of questions......but making the arrangements ( flights, etc,) has been SO hard. I guess I keep hoping something will come to me through all my research that says...." You are doing the right thing."

I am entrapped. I think that is a certainty. I have every reason to be entrapped in the areas indicated. I had horrible mesh throughout the pelvic floor...which led to complications and removal of the mesh......which led to extensive scarring. I feel this gives me a chance to have SOME quality of life back, but there are no guarantees and I know that.

I haven't tried pulsed radiofrequency ablation, but I have read this has been successful for some. I haven't tried neuromodulation or all the other recommendations before surgery.....and so i guess this is not the last resort, but I don't want to wait until the nerve is damaged beyond repair. My only consolation. Is the anterior approach is less invasive and has a shorter recovery.


I am trying to again reason thru all the questions and weigh the pros and cons. Any advice would be greatly appreciated.

[calluna]

Hello Barb

I haven't been on here for ages, very selfish of me really, but I've been doing so well on my current meds and have been getting back to a normal life. This morning I just thought I'd look in, and saw your post.

I could not think of advising you, not at all.

And you've been through all the pro's and con's already - have you not? And you've tried the meds, have you not? - gabapentin, or pregabalin, perhaps in combination with topiramate or duloxetine? Tramadol is also often prescribed, as are opiates, both are helpful. As I'm sure you know.

It is probable that our situation is physically quite similar, as I think we've already concluded, except that you've had an MRI to see that the nerve is trapped, and I've had a surgeon look and see, laparascopically. If, hypothetically, I were in a situation where I could not continue taking my current meds - well, I'd have to have a rethink. Personally I would not be going to Austria (or indeed anywhere else) for further surgery, for one simple reason - I could not afford to, it must be very expensive. It would certainly not be available on the NHS! I'd probably try duloxetine next, I haven't tried that medication yet.

So I am just going to wish you all the very best, Barb. I have heard that Dr Aszmann is a very skilled surgeon, and I'm sure that you will be in good hands. I look forward to hearing news of your progress and recovery.

[Barb]

Hello Calluna,

So glad to hear from you and so happy you are continuing to do well on your current meds. I am still taking gabapentin (1,800 mg.) and tramadol and sometimes they do the trick, but most of the time they do not. Yesterday was a good day, but today is very bad and I still cannot sit for any length of time, which is the main reason I am trying the surgery. It is so frustrating not to be able to sit. My family recently got together and I could not go because I couldn't sit in the car for 6 hours to get there. Can you sit on your current meds ? That would be wonderful and would certainly make me second guess my decision to have surgery.

Thanks so much for your support and I will certainly keep everyone posted as the more information we have, the more we can make informed decisions.

Barb

[calluna]

Yes, I certainly can (and do) sit with these meds. Until recently I've been maintaining the use of my helpful cushion which I have still been carrying around with me everywhere until one day I forgot it, and much to my surprise I was ok without it. So now I don't bother with it any more outside the house. Inside the house I still have my cushion 'nests' because I like them. And I do still use a cushion in the car - it just lives in the car, no reason to take it out really, it is very comfortable.

Basically life is pretty much normal, if anyone had told me this would happen when I started these meds back in March, I would not have believed it. These days I really am painfree unless I overdo things physically or do something daft like forgetting to take my meds on time. And I do mean painfree. If I get even a single twinge of discomfort then I know I really have overdone things.

However sitting for 6 hours in a car would certainly be something very much out of the ordinary, I'm sure I would manage, but I would be a little concerned about effects the following day. I've always had problems with delayed pain even more than pain at the time. Would it turn out to be painfree? - I don't know. I'm sure I'd manage though.

But that's me. We are all different, remember, we all respond differently to various meds.

The meds that I am taking are not without side effects, which have been slow to subside. Also, there is a chance that I may not be able to take this combination long term - topiramate carries a risk of kidney stones. I am following medical advice and drinking lots of water, hoping very much that this does not happen to me.

You have options open to you which are not open to me.

I can certainly understand your feeling scared - I've been absolutely terrified before each and every surgery. We never know that we're doing the right thing, do we? Not even when the surgery is taking place in the next town. Hang on in there, Barb.

[konedog4]

If you have not considered shockwave therapy with Dr. Kirk Andrews in Cornwall, Ontario, I would advise you to at least look into it. If you call him, he will talk with you about his therapy and the potential to help your situation. I did this very thing. I could not sit down, could not stand up for any length of time either - had to keep moving or lying down to feel relief from the tightening sensation in perineum. After one week session with Dr. Andrews, I could sit down again. I am not cured, but I got better. Being able to sit down is a blessing. How we take that simple pleasure for granted! I went back for a second session 1/2 year later and made some more gains. Still, I am not cured, but am able to do more things and able to enjoy life again. I plan to go back again this fall. It is expensive, as insurance usually will not cover it. But, from my perspective, i wanted to try every alternative therapy before considering surgery. I view surgery as the very last resort, for the published results are not all that encouraging. Some do get better, yes, and thank goodness for that, but others go through a very lengthy recovery period and are no better.

I do not pretend to know what you are going through on a daily basis; we are all different. Perhaps surgery is the best last option for you because you have tried everything else. But if you have not tried shockwave, I would at least give Dr. Kirk Andrews a call and discuss your situation. Nothing to lose in consulting with him, and perhaps much to gain.

kone

[volcanbird]

Can you give us an idea what "shock" therapy involves?

[Rosemary]

I would be interested as well in what the shock therapy involves too Konedog if you can spare the time.

Whereabouts on your anatomy was it exactly put ? - sorry just wondering how close to the perineum it goes. My acupuncture was right in there !

Did you have an MRI scan before starting this therapy ?

Thank you

Rosemary

[konedog4]

I have written extensively under the general board topic: "New person with pudendal nerve disorder". My shockwave experience began in November of 2012, and then again in Feb., 2013, so look for those dates and see my postings about shockwave.

The shockwave operating handle (the working end), is placed directly on the perineum and on the course of the Pudendal nerve. It is very painful therapy.

kone

[Rosemary]

Konedog

Thanks for replying - I have just found your thread and will read through it http://www.pudendalhope.info/forum/view ... &start=170

Also for the warning that it is painful.

Rosemary

[Barb]

Konedog,

Thanks for your suggestion of shockwave therapy. I did look at that and I thought about that seriously. I saw in a post that it does not work as well for surgical scar tissue that is entrapping the nerve.... Which mine is. Do you know if that is true? I am so happy that it is helping you and yes, sitting would be a blessing. You never know how much you take something for granted until you can't do it anymore.

I got my flights and hotel reservations for Vienna in Sept., but I got flight insurance and I can cancel for medical reasons. It is a huge step and very scary, as surgery is what did this in the first place.

I so appreciate this forum and being able to hear others experiences. I am stepping out in faith, and hoping for the best.....as we are all doing with this dreaded condition.


Barb