PT to break up scar tissue?

[Karyn]

Has anyone had pelvic scar tissue "broken up" by manual physical therapy? The reason why I'm asking is because after receiving my 3T MRI report, I forwarded a copy to my pelvic floor PT. She called me yesterday to let me know she received it and commented on what a thorough report it appeared to be. When I expressed to her how surprised I was at the extent of scar tissue I had, entrapping the nerve, her response was, "well, you could come back to therapy and we could work on breaking that up manually". I told her that I'm still considering surgery and would keep her posted about the direction I'm going in. I replied as such because I've begun to have doubts about being treated by her. I guess I should back up a little to fill you in on some history: When I first saw this PT in 07/09, I had not been diagnosed with PN(E). My diagnosis at the time was a severe case of MPPS (Myofacial Pelvic Pain Syndrome), an unexplained, mysterious pelvic pain phenomena (according to the slew of "ologists" I saw). My pelvic floor muscles were in a constant state of spasm and tighter than a drum. I was treated with internal & external myofacial release techniques 2ce per week for 6 months, with no improvements or pain relief, so I discontinued the treatments. As a matter of fact, my condition continued to deteriorate with the myofacia spreading to other parts of my body at an alarming rate. However, this PT is the one who accurately diagnosed my PN. So, in January 2010, I went for 4 months (2/week) for intense acupuncture treatments. The acupuncture eventually cured the MPPS. No more tight pelvic floor muscles or tight anything else! Unfortunately, it did absolutely nothing for the nerve pain. I always thought the myofacial pain was secondary to the nerve pain but no one wanted to hear anything about nerves. Well, that's a topic for another time ... Anyways, because I am a PNE person and in constant pain, I too ride the emotional rollercoaster of indecision and doubt. I've exhausted all kinds of "conservative therapies" and am contemplating surgery, which I find scary. As a last ditch effort, I recently had Dr. Conway fax orders to this PT person for another trial. My rationale was that maybe it would be more effective this time, with the absence of the myofacial stuff? So, I go for my re-evaluation and at the end of the visit, she suggests that I would probably benefit from PT much better after decompression surgery. I'm unable to lie flat on my back because of the intense sacral pain I have. I also have severe hip pain and it's excruiating for me to lie on my stomach because of the ilioinguals and (?). She did do an internal exam but said she couldn't tell if my pelvic floor was tight or not (I had a very thorough internal by Dr. C the very next day - NO tightness but profuse tenderness). I discussed the previous days PT with Dr. Conway and he was in agreement about postponing further treatment. I did go back to PT the following week because I really do like this therapist and she had given me "homework" the last time I saw her. The homework assignment was for me to read this new treatment they're introducing to their chronic pain patients called, "Understanding your pain". This is also a different topic for another time but I will say that I did read the 8 page handout and I'm not impressed. What it basically says is that your BRAIN controls pain and we, as chronic pain people must re-train our brains if we're ever to get well. Oh, and part of that retraining is anti-depressants. Because if you have chronic pain, you are most certainly depressed! I'm not completely ditzing that theory but I don't think it's entirely true, either. Everyone is different. Everyone has different pain tolerances. And everyone copes with their pain differently. For instance, I've been on numerous med trials. For me, they've been utterly and completely ineffective for pain, yet I've suffered intolerable side effects as a result. Anti-depressants depress me. And somehow, they diminish my coping skills. I discontinued all med therapy a year ago. There's one section in the handout she gave me entitled:
Helpful Hints for Making Changes - Visual Imagery":
1. Begin by watching others perform movements that cause you pain, then ...
2. In a calm, controlled environment, visualize yourself performing the actions that you currently have difficulty performing without pain. Picture yourself doing them with ease,
and without pain.
3. Believe it or not, just visualizing these motions will help to retrain the areas of your brain that fire these dysfunctional pain signals!
So, I tried it, reaching into the dryer to get clean clothes out. Didn't work for me. The reason why it didn't work for me was because I stopped to think about what I was doing. Didn't matter that I had positive, pain-free thoughts about the action. The pain was the same, if not worse by merely thinking about it! As I mentioned previously, I'm doing this med free. Distraction and a positive attitude are how I cope. I do believe every day is a new day and go out of my way not to dwell on my pain and disabilities.
Every time I go into the fridge to get out that gallon of milk, there's NO DOUBT in my mind that I'm going to pull it off. I'm not peering into the fridge thinking, Oh crap, I have to get the milk out and oh boy is this gonna hurt! It isn't until I do reach in and take it out that I'm hit with, "Oh, ya! This is something that causes me significant pain!" AND THEN I DISMISS IT. What I found upsetting about our discussion regarding the homework was that she seems to be fully embracing the idea that ALL chronic pain people's pain is coming from the brain picking up the wrong signals. I'm not suggesting that never happens but I, as well as many of you, have a very specific reason for the pain. And the reason why my particular pain is "chronic" is because it hasn't been addressed or treated properly. Not because my brain is picking up on "faux signals" or something! She was very adament that EVERYONE was the same, regardless of circumstance and I'm having a hard time swallowing that. I'm very confused that 3 weeks ago, she was of the opinion that PT wouldn't benefit me until after surgery; she gets my MRI report detailing the extent of scar tissue I have and now thinks she can "break that up"? She also offered to have me come back for more PF myofacial release. When I told her again that I do NOT have PF tightness, she replied, "You have chronic pain. You HAVE to".
Maybe it's time for a new PT? What do you think?
Best regards,
Karyn

[Celeste]

I would bail on the PT, pursue surgery, and start buying milk in smaller containers. The cool thing about that is while you may spend a few more dimes, you are always clearing space out of your refrigerator and if you are constantly replenishing, you have fresher milk all the time.

Leave it to me to overthink these things.

Frankly, that PT is always going to be there. No I don't believe they can break up scar tissue; who's to say it wouldn't just grow back together afterwards? At least in surgery you can have it removed. Also, you sound like you're in too much pain to deal with it anyhow. Anybody I have heard of who valued PT, valued it post op.

Finally, I don't know what to think about the brain-rebooting stuff they're telling you. I'm sure they feel they are offering you a service. Maybe you could try a guided imagery class like hospitals sometimes offer for support of cancer patients, to help with relaxation in general. Anti depressants help some chronic pain patients by cutting back on how much pain sensation they can experience. They just gave me this epic apathy and I felt it was no way to live. Some people are helped with a low dose of an anti anxiety med like Valium or Klonopin. I never tried them but have a feeling I would have really honed my napping skills on them.

You've tried a lot of stuff and your instinct is to pursue surgery. I say get a consult and see what you think. Don't try to make what some PT thinks fit what is best for you.

[catherine a]

Karyn,

I ditched Physiotherapy as I found all the internal work actually made me feel worse. My scar tissue was dissected until the nerve was freed. If your Pudendal nerve is being trapped by scar tissue I would think it needs to be carefully cut away from the nerve. I found my Phsyio very good but she is all about muscles and ligaments. Not a clue about nerve pain. It is now 3 years since I had my PNE surgery and I manage my own internal massage. I smear 5% Lignocaine on to the glass dilator given to me by the physio. and insert it very gently then slowly massage the vaginal walls. I couldn't achieve this before surgery whatsoever. It took me about 2 years after surgery before I could pluck up the courage to try it, but I can now use a no. 4 dilator quite comfortably. (the smallest is no. 1 and I think they go to a no. 8 or 9.) i'm not really interested in going for a bigger size at this stage. I stopped going to the Physio. about a year ago as it's an hours journey and I don't really get much benefit any more.

I don't know anyone who's had scar tissue broken up manually. I would think this would stretch and harm the nerve more. Maybe someone will read these posts who has had it done and give their opinion.

Catherine

[Violet M]

Karyn, I tried one of those "retrain your brain" tricks. It didn't do a thing for me. I also tried the mind over body stuff. Didn't do a thing for me either. I am not a proponent of the "it's all in your head" theory.

Can PT break up scar tissue? I don't know. Sometimes I wonder if the trauma of breaking up scar tissue actually causes more scar tissue. Of course, some people would say that about surgery too -- especially if you are prone to scar tissue formation. But maybe that is where the neurogen wrap comes in....

[Karyn]

would bail on the PT, pursue surgery, and start buying milk in smaller containers. The cool thing about that is while you may spend a few more dimes, you are always clearing space out of your refrigerator and if you are constantly replenishing, you have fresher milk all the time.

Hi Celeste! I'm so glad you're here! Great suggestion about the milk, and all kidding aside, I actually did do that with my laundry detergent! I used to buy the 64 gallon size but have switched to "All - Small and Mighty"! Hoooraaaaay!!! I can wash clothes again! Now, getting them out of the dryer is still problematic and carrying the laundry basket is out of the question, BUT I can still wash!!! I'll take it!!!
Catherine and Violet - thanks so much for replying, too. I think you're right. I guess because she threw it out there, I felt the need to inquire if anyone had actually had that happen.
I'm really trying to cover all my bases. I would think if it's possible to manually break up scar tissue, she would've done something during the six months I spent with her for all that excruiating internal work. What bothered me about the "understanding your pain" thing, is, she was so rigid about it. When I was being treated by her last year, I felt like an individual. I felt like someone was finally listening to me and identifying my "unexplained, mysterious" pain. Now, because she recently attended some chronic pain seminar, I'm no different than any other chronic pain patient. Doesn't matter if I have PNE, IC, rhuematoid arthritis, ect ... One of the very first things I told her after reading her new protocol was that I thought one of the biggest mistakes doctors are making in this area is not acknowledging the fact that we're all different. She completely and utterly disagreed with me.
She said that our circumstances may be different, but the way the brain processes pain is the same for EVERYONE. So, if that's true, why bother going to PT at all? We should be having brain work done!
No, no more PT for me, for now. In my heart, I know surgery is my best chance for improvement and I need to stop putting off the inevitable, stop looking for ways around it.
I'll be looking for a new PT, eventually.
Warm regards,
Karyn

[HerMajesty]

Karyn,
I know that some release techniques on scar tissue can be useful because I have a large external abdominal scar which was worked on as part of my external trigger point work very soon after my diagnosis - and this work did reduce the overall tightness in my "belly button to knees" area and hence reduce my neurogenic bladder symptoms. It didn't do anything for my PN but was also in no way focused on the area of my pudendal nerve.
Dr. Weiss in San Francisco is very big on the idea of manually breaking up scar tissue in the pudendal area as an alternative to surgery. He had a friend of mine from my area, stay up there for a month while he supposedly broke up all her scar tissue by hand. No change, but his line after that is that he "got it all", but now just go home and over the next year and a half you will feel better, as that is how long it takes the nerve to heal.
OK, I know this is one of the big-time respected PN Docs so I am not going to say what I really wish to say here. What I will say is, many people including myself who have had SUCCESSFUL treatments to decompress a pudendal nerve, got INSTANT improvement, so I just don't know about this "taking a year to heal" line. That is the nicest way I can put it.
Surprisingly, after I argued with my friend ad nauseum saying you cannot possibly access the entire nerve manually anyhow, she went to Dr. filler for the MRN and he told yes, it IS possible to access the entire nerve manually. Thanks for backing me up, Dr. Filler.
I think there is a place with a QUALITY PT, which I do not think is what you had, to work on internal manual scar tissue release. I doubt very strongly this would ever be enough to cure an severe case of PN secondary to scar tissue entrapment, although it may help.
Those are my thoughts...also that if you are going to do any more PT, maybe shop for a new one?

[Karyn]

Hi Hermajesty!
I was hoping you'd comment on this! The more I think about it, the more skeptical I'm becoming about manual therapy being able to release scar tissue that's encasing the nerve.
In my very unprofessional opinion, the PN is buried too deeply to be unsurgically, manually released. Not to mention, I can't even imagine how unspeakable painful that process could be! I can kind of grasp how this may be effective for surface stuff, though.
Getting surgery lined up is my next course of action. No more PT until afterwards. I don't care if she promises me Fairy Wings, so I can fly ! I probably will consult with someone other than the person I've been seeing. One step at a time, though.
Hope all well with you and yours ...
Warm regards,
Karyn

[Celeste]

I used to buy the 64 gallon size but have switched to "All - Small and Mighty"! Hoooraaaaay!!! I can wash clothes again! Now, getting them out of the dryer is still problematic and carrying the laundry basket is out of the question, BUT I can still wash!!! I'll take it!!!

I've got some thoughts on this. I'm a quilter and that means I hang out with an older demographic. I have been amazed at all of the ways that they find to make adjustments to living with aging, and keep on keepin' on. My friend Judy had her both her dishwasher and dryer put up on a base so she can fill and empty them standing. Back in the day when I used the laundromat, they had these baskets on a wheelie cart so you could empty the load while standing and then move it on down the line to fold.

If you can't get your dryer elevated, maybe you could use one of those pincher/grabber tools to more easily pull laundry out. And, maybe some handy person in your life can make a wheelie base for the laundry basket. Or if you have a cooler on wheels with a handle and removable top, that can be your new laundry basket. Of course this falls apart if your laundry is down in the basement and your bedrooms are all up one or two flights of stairs, but if you're in a ranch this just might do the job. If you do have multiple levels, might there be a way to put the laundry machines upstairs?

Looking on the semi-bright side here, if you are able to make some adjustments for chronic pain, they could really help you face down aging and independent living.

[Karyn]

Hi there, Celeste!
Excellent suggestions! In an effort to stay on topic, I'm going to start another thread to reply. I hope you'll come with me!!!
Warm regards,
Karyn

[Charlie]

No more tight pelvic floor muscles or tight anything else! Unfortunately, it did absolutely nothing for the nerve pain. I always thought the myofacial pain was secondary to the nerve pain but no one wanted to hear anything about nerves.
Karyn

I found your post very interesting to read Karyn and I agree with a lot of your points. As regards your statement I have quoted above I would say some PTs do not want to hear about nerves but if you asked any neurosurgeon about this problem they would agree that often myofascial problems are secondary to nerve pain. If you have adhesions on a nerve then your muscles will tense up in response. That is not an opinion but proven fact.

As you have found PT very often merely treats a secondary symptom. If you remove the adhesions from the nerve very often the muscle will release anyway.

I would agree with Celeste bail with the PT.

I agree with the point you make below. I would say your 'unprofessional opinion' is completly correct.

In my very unprofessional opinion, the PN is buried too deeply to be unsurgically, manually released.

Physical therapy absoloutley has a role to play in pelvic pain but I wish some Physical therapists would recognise the limitations of what they can offer pelvic pain patients.