Surgery after 8 years

[ezer]

I briefly communicated with Bautrant as I translated his paper to English a few years ago. Very nice guy.
His lack of access to the SS and ST ligaments is a problem though. Dr.Filler claims that he can access that section too. But of course the proof is in the pudding and I am struggling right now.
How long was your recovery from surgery alipasha?

[AliPasha1]

Hi Ezer,
It has been 9 months since my surgery with Dr. Bautrant.I haven't still recovered to the pre-surgical level.My sitting is worse off than before surgery.All other symptoms are the same with the exception urinary frequency which improved slightly.Dr. Bautrant can access the Sacro-Spinous ligament.His problem is the Sacrotuberous ligament and I belive the falciform process of the Sacrotuberos ligament.He says that he he adresses the falciform process of the Sacrotubeous ligament,but I think what he means is the end of the Alcock's Canal not the falciform process of the Sacrotuberous ligament before it meets the ischial tuberosity.

Best Regards,
Ali

[catherine a]

Hi Ali,

I also had surgery done by Dr. Bautrant. I too was disappointed when at 12 months i was still in as much pain as I was pre-surgery. but I can tell you that it was clearly 18 months - 2 years post op when I began to see improvement.
Now at 3 years I am much better. Not 100% cured but I would say about 75% better. For the past year I've said I'm about 70% better but in recent weeks I have improved more. Always remaining positive. I never gave up hope that things would change for the better. Do not ever give up that you'll one day feel better and the pain will become less. It is a long journey of pain and requires patience, understanding and most of all, keep moving. Walk a little, swim a little, get up early in the morning and early to bed at night. Try and do something that will distract you from the pain. I felt so much better in myself when I stopped taking the heavy opiod drugs and anti-depressants. i'm not suggesting that anyone do this of course as we must follow our doctor's advice but for me I didn't want to be like a 'zombie' and I had to get back to work regardless of the pain.

3 years on, I'm not cured but I do have my life back. I don't take any meds. at all throughout the day, just 25mg Lyrica at night to help me sleep. Some people recover quicker than others. I remember the days when I cried just because I woke up. I didn't want to die but I didn't want to wake up either to another day of intolerable pain. It was 2 years after PNE surgery when these thoughts began to leave me and I could get on with my life.

I did have severe entrapment between my SS & ST ligaments (Liberation was achieved by sectioning the lower third of the sacro-spinous ligament) and at the the Alcock Canal by sectioning hard fibers of the Falciparous ligament.

I understand exactly how you feel that you haven't progressed much. I too felt the same way. I now gauge my progress on a yearly basis instead of months. In a few years time I'm sure you'll be reporting the same.
Hang in there.

Catherine

[ezer]

Alipasha,
You are absolutely right. I just re-read the French version of that article and Bautrant can access what he calls the "pince ligamentaire". It is Shafik that has no access to it.

[AliPasha1]

Hi Catherine,
I hope that your words come true.Ameen.However,I cannot ignore the fact that fortunately I wasn't bed-ridden like you were before surgery and neither were pain levels 9/10 which was unfortunately your case.I was working 9 hours a day sitting with a cushion and an inclined chair before the surgery.My pain levels were between 0-5 depending on the day. I had sitting pain on both sides but I had other issues like urinary burning, urine frequency,Post ejaculation Burning,no orgasm,E.D on the left side only.Except for the sitting pain, to my utmost delight all the other symptoms completely disappeared for a month after the surgery .As the time passed,all those symptoms reappeared, with my sitting pain worse than ever.There is another twist to this story.It is the pain on the right side which Dr. Bautrant refused to operate on the basis that it is a myofascial reaction from the left.I pleaded with him till the last minute to operate on the right side but he completely refused to my dismay.
In the last three weeks,I have been noticing that my sitting pain on the left side is decreasing and the right side is becoming more apparent and worse than before,The right side feels like somebody just stuck a nail with a hammer at the ischial tuberosity(the sitting bone).
In addition,Dr. Potter 3 Tesla MRI clearly shows that I am entrapped on the right side in the Alcock's Canal as well as the EMG Testing done by Dr. Conway and the PNMLT test done by Dr. Poppenney of the Houston team.The only reason Dr. Bautrant didn't do my right side because his Stupid dopper artery test showed entrapment on the left side only.
Maybe,the surgical outcome could have been better if the right side was operated as well.I would still like Dr. Bautrant to operate on the right side,but I don't have another US $24,000(all expenses included) to spend in Aix En Provence again.

In addition,I also lost my job because I couldn't return to work because my sitting pain was worse than before.

Best Regards,
Ali
PS
Another interesting part is that Dr. Bautrant stated that I should see most of my improvements in the first year and little improvements the year after since I was entrapped in the Alcock's Canal only and not in the grip of Sacrotuberous ligament and SacroSpinous ligament.It has been 9 months as I mentioned and three more months to see what really happens.Dr Potter's MRI has also indicated entrapment in the Sacrotuberous ligament as well as re-entrapment of the Pudendal nerve as well as the dorsal nerve in the the scar tissue in the Alcock's canal left after surgery.
It has been known for some time that Dr. Bautrant's TIR approach cannot access the Sacrotuberous ligament.

[AliPasha1]

Hi Ezer,
I have sent you three power point slides on your personal email.Let me know what your views are on it.In addition,could you attach those power point presentations in a condensed form if possible for the people on the forum to see.

Thank You,
Ali

[stephanies]

Ezer,

Wishing you all the best as you continue to recover! I also had surgery with Dr. Filler back in 2006. At the time I had seen or spoken to all the PN doctors (excluding Dr. Hibner who was new then) and I felt most comfortable with Dr. Filler. He is certainly very knowledgeable. It is also good to have the information that he can do surgery at a different hospital to save the patient some money. I had mine done at Cedars-Sinai, but I think my insurance paid for 100% of my hospital stay it was Dr. Filler's fee and the cost of the other doctors that was not covered hardly at all (including the doctor who did all the nerve testing during surgery, the anesthesiologist, etc.). Keep us posted!

Stephanie

[Violet M]

Alipasha,
You are absolutely right. I just re-read the French version of that article and Bautrant can access what he calls the "pince ligamentaire". It is Shafik that has no access to it.

When I observed Bautrant perform a TIR surgery, he did not actually see the ST ligament. He can relieve a compression of the nerve at the ligamental grip (at the ST/SS ligaments) by severing or partially severing the SS ligament but if the nerve is entangled in the ST ligament he does not have access to disentangling it from the ligament.

Sorry, Ezer -- this is a bit off the subject of your surgery. Hope you are starting to see hints of improvement although it's still too soon to be alarmed if you are not.

Violet

[ezer]

Violet,
Very interesting observation regarding Bautrant. That is clearly a limitation of the TIR surgery.
I am not seeing much progress... Quite the opposite actually.

[Violet M]

Sorry Ezer. There are better days ahead.