Unstable Pelvis or pelvis problems - Physio

[Violet M]

Thanks for this info Sunil. Please let us know how your treatment goes and if it helps. Wishing you the best,

Violet

[catherine a]

Sunil,

Is this Phsyio. in Canberra or Sydney?

Catherine

[A's Mommy]

Catherine,
You've had Botox right? Did you ever have one sided injections only? I recently had Botox into my left side only and now I have random right side PNE symptoms! Is it because my left sided muscles are now paralyzed and the right side is picking up the slack? What do you (or anyone else) think?!

Thanks in advance,

A's Mommy

[catherine a]

Hi A's Mommy,

I had pain on both sides initially until I had my first Botox injection which was distributed randomly around the pelvic floor. (At that stage we didn't know where the source of the pain was as my whole pelvic floor was suffering intense pain all around.)) 4 weeks following the first Botox, my left side pain diminished almost entirely. This was then an indication that most of my pain was coming from the right side. After that, I always had Botox on the right side only. Have you had PNE surgery? I do know that some people benefited greatly from botox post surgery. I also think the botox is only as good as the doctor who does it. I often found it was a 'hit or miss' Sometimes it didn't help at all and I think the Botox was just not getting right to where it needed to go. For me, I believe it was my right side obturator muscle.

With PNE, the pain can definitely be on both sides even though the entrapment is on one side. Dr. Bautrant described it as being like an electrical wire. If an electrical wire is compressed anywhere along it's course, both sides of the wire will be disturbed. I think the fact that your muscles on your left side are beginning to relax, the right side is likely to pick up the pain signals. a good idea is to keep a diary every day with symptoms. Write the diary mid-morning and night time before you go to sleep. It will help your doctors so much when you can explain exactly how you're reacting to the Botox. The best injection I ever had was the one which was done during a laparoscopic procedure. Prof. Vancaillie could clearly visualize the obturator muscle and as it was ROCK HARD he injected 100 units of Botox to that muscle. I was virtually pain free for 6 weeks. Unfortunately, here in Australia the Botox is not being done using CT guidance and I believe we could benefit greatly if the Botox is not just injected 'randomly' so to speak. I always found that the Botox took about 4 weeks to kick in.

After 2 years of Botox and Phsyiotherapy I ended up having surgery anyway as the botox injections only gave temporary relief. It was truly a Godsend for me at the time as it helped relax the severe muscle spasms. My left side has been good ever since. I also found some injections to cause disturbance in the bladder (weak urine flow and leakage.) and sometimes it didn't. My botox shots were always done via the vagina and I gave up after I had surgery. I would've considered having it again but only when the Doctor would use guidance and approach externally. Each vaginal injection always caused a major pain flare for weeks. One good thing about the Australian docs. they sedate us before doing the injection. We're not aware of it whatsoever. And wake up to a nice cup of tea and sandwich. Hope this is of some help to you.

Catherine

[A's Mommy]

Dear Catherine

Thank you for your response! It surely helped me and I'm sure it will help others. I have not yet had the decompression.
I will have it with Dr. Hibner in Phoenix, AZ via the TG approach.

He did the Botox injections under general anesthesia into the left side. I was very sore for approximately 10 days. I have nothing to compare it to, however, as I have only had this once done intravaginally. I know some doctors do it transgluteally or under CT or fluoroscopy.

Why did Dr. Bautrant or Prof. Vancaille think you became entrapped? It stems from my pregnancy and most likely I have some anatomical predisposition to this. We'll see for sure after I have the surgery.

My best to you,

A's Mommy

[catherine a]

Hi A's Mommy,

Prior to having a hysterectomy and pelvic floor lift for prolapse I did not have any pain whatsoever. The hysterectomy was recommended because my menstruation was erratic and as I was 48 years old I assumed it was a pre- menopausal thing going on. Results of an ultrasound showed Endometrial Hyperplasia which is a thickening of the uterus walls and most often leads to cancer if not treated. Because of my age my gynae. advised me to have the hysterectomy. It was done vaginally because my rectum had adhered itself to the back wall of vagina and as he was going in there anyway to do the pelvic floor repair, he said there'll be no need to open me up on top.

10 days after surgey, I felt something 'Shift' in my right buttock which was the beginning of the PNE nightmare. As there was no other pathology to account for the pain (I had all of the symptoms) Treatment with Botox and Physio. and all the pain killers under the sun didn't help solve my pain although the botox did help on a few occassions for about 6 weeks. 3 years on it was my decision to contact Dr. Bautrant and Prof. Vancaillie said he would come with me to France as he'd like to learn more about PN.

Dr. Bautrant agreed my nerve must be severely trapped due to the following:

Surgical event that started the pain.
No other pathology to account for this type of pain.
Ultrasound of Pudendal Artery showed interruption of blood flow in the lower right side pelvic floor. Similar to an hour glass. blood squeezing through the narrowed artery.
All of the classic PNE symptoms, not some, but ALL.
3 years of other treatments which didn't help.
Pain medication which didn't help.
Rectal exam produced the Tinel sign. Major shock and pain when touching the Pudendal nerve at top of rectum.

Neither doctor could say for sure why this happened. It could be that I did have a pre-disposition to this. (In hinsight, I remember having a D&C a few weeks before my hysterectomy and I experienced a feeling of 'something in my rectum' dragging kind of feeling.) I didn't mention this to my gynae. as I assumed it was because he had been poking around in there having a look before surgery.) I'm also thinking, that as some other women here have had the same type of hysterectomy and pelvic floor repair as I did and ended up with the same PN symptoms, it could be that the sutures didn't hold the sacrospinous ligament in place and that is why it 'slipped' and clamped on to the sacrotuberous ligament. The docs. told me that my pelvic floor is in 'A MESS' with very tight fibrosis tissue. (scar tissue)

Violet: if you read this, would you know which ligaments are lifted and sutured during an A & P repair? I'd like to know exactly how this procedure is done and what ligaments are involved. Could it be possible that the sutures didn't hold? I do know they were manufactured by Ethicon (Johnson & Johnson) but the hospital couldn't tell me if they were Panacryl as the doc. didn't keep records of what sutures were used. (he's since passed away.) I did inquire with a leading medical injury lawyer but they want $4000 up front to investigate and I don't have that kind of money any more. (used all my savings going to France.) It's times like this I tell my kids we need a lawyer in the family.

Getting a bit side tracked there, sorry.

Hope this helps.

Catherine

[Violet M]

Violet: if you read this, would you know which ligaments are lifted and sutured during an A & P repair? I'd like to know exactly how this procedure is done and what ligaments are involved. Could it be possible that the sutures didn't hold?

Catherine, if they did a sacrospinous ligament fixation then yes, there are stitches put into the SS ligament and I think it's possible the stitches did not hold. This site has great pictures of it if you want to study it more in depth.

http://tinyurl.com/2dtvk6w

"One end of the suture previously inserted through the sacrospinous ligament is placed through the muscular layer of the vagina. In a similar manner, the second suture is placed. The opposite end of the suture in the sacrospinous ligament is left free and held on a small hemostat. Traction on this suture will draw the vaginal vault directly to the ligament, where a square knot will promptly affix it to the sacrospinous ligament."

When they perform the procedure they have to be careful not to get the stitches too close to the ischial spine where the pudendal nerve is.

In some procedures the uterosacral ligament is used.

It's also even possible for a suture to go through the pudendal nerve:

Obstet Gynecol. 2008 Aug;112(2 Pt 2):496-8.
Pudendal neuropathy involving the perforating cutaneous nerve after cystocele repair with graft.

Bohrer JC, Chen CC, Walters MD.

Cleveland Clinic Lerner College of Medicine of Case Western Reserve University, Cleveland, OH 44195, USA.
Abstract

BACKGROUND: Pudendal neuropathy is a documented complication of sacrospinous ligament fixation, but it is infrequently reported with other types of gynecologic surgery.

CASE: A woman developed neuropathic symptoms of the right vulva, perianal area, and gluteal fold after vaginal surgery with graft for anterior pelvic organ prolapse. Pudendal nerve entrapment with involvement of the perforating cutaneous nerve was suspected. Suture removal 1 year after the operation resulted in improved pain symptoms and sexual function.

CONCLUSION: Pudendal nerve entrapment is one potential complication of anterior vaginal repair with biologic graft. Removal of sutures, even long after surgery, can result in clinically significant improvement in pain symptoms and sexual function in patients with pudendal nerve entrapment.

PMID: 18669778 [PubMed - indexed for MEDLINE]

[catherine a]

Thank you so much for this article Violet. The more I think about this the more I'm convinced that the sutures didn't hold. I specifically remember the very moment when I felt something 'Shift' in my right side buttock. I also noticed from the article
this statement :

Care must be taken to avoid the pudendal artery and nerve, since these are immediately posterior and inferior to the ischial spine. The sutures must be placed at least 2 cm medial to the ischial spine to avoid injury to the pudendal nerve, which could result in chronic pain. The type of suture material used must be carefully chosen to avoid recurrence. We prefer a synthetic nylon suture mounted on a small Mayo needle or a Deschamps ligature carrier for placement.

I am extremely disappointed and somewhat angry at the Gynaecologist when he denied that the pudendal nerve was involved. I think most surgeons would know very well that damage to the PN can and does occur but fail to address it when it does happen. They seem to avoid discussing the issue and refer us on to another doctor. All kept 'hush hush' so to speak. As some would believe 'Your not supposed to get pain in that area.' Hopefully, this attitude will change in the near future so others don't need to suffer.

Again Violet, thank you for the information. it will be very helpful to anyone who questions the procedure. Most of us go into surgery without asking enough questions. Even if we do, we won't always get a proper explanation as some doctors have the attitude that 'The public don't have to know that' and I do believe most people don't want to know more than they have to but when it all goes wrong, we wonder whether we should have been more educated about things.

A good example of that would be HPV or HIV etc. The medical profession have known about these diseases for decades but it the attitude was always 'The public don't need to know about that' I'm rambling a bit now.........
Better get on with dinner.

Catherine

Catherine

[Violet M]

Catherine, my son just went through his surgery rotation in med-school and he was explaining to me how difficult it is to tell some of the structures apart -- nerves, vessels, ureters, tendons, etc. -- even the experienced surgeons have to be extremely careful before they cut something. Medicine is not an exact science -- there are variations in each person's anatomy. Being a surgeon must be a very high stress job and I think sometimes we forget that they are human and that the risks to having surgery are very real. I can understand why Dr. Hibner is careful not to schedule too many surgeries in a week and why it takes so long to get an appt with him.

But it's scary to be the patient and to have to put your trust in a surgeon. It must have been pretty scary for you when you felt like the sutures came out!

[catherine a]

I didn't ever get angry with the surgeon for something going wrong as I absolutely agree that they are human and errors do occur. My disappointment & anger was that he didn't offer to help find out why I was in so much pain.
He simply passed me on to another doctor and didn't ever enquire as to how I was doing. No further appointments. I kept going from doctor to doctor until I found the two who finally agreed that the problem could be pudendal nerve related and who were willing to spend some time to research my symptoms. I just feel that some doctors are not willing to learn anything new. A true caring doctor would do all in his/ her power to help their patient and not just pass them off to someone else. Especially when the pain started after they did surgery.
Sadly, my gynaecologist passed away shortly afterwards and he never got to know that my problem was a trapped pudendal nerve.

There are some doctors who are willing to listen to their patients because one of them, one day, might just actually teach them something they didn't know.

Sadly, most of them don't have the time I suppose. This was one comment I heard from a surgeon. he said 'Thank God someone has the time to research this because I certainly don't."
Another comment I heard was "Once a woman's uterus and ovaries are gone, she's no longer my problem." I do know there are some very compassionate doctors who are willing to go above and beyond what's normally required of them. Govt. funding plays a huge role too in how much research can be done.

Catherine