Chiropractor question

[gracie]

Hello,
I am wondering if anyone has any info as to whether seeing a chiropractor is helpful. The reason I ask is because a friend of mine says she spoke to her chiropractor about me and he says he has two patients that he sees for pelvic nerve pain. She only said pelvic nerve pain as she doesn't know PN is what I have. I was diagnosed with a slight case of scoliosis years ago and never did anything about it as it didn't bother me. Lately, my tail bone and my left hip has been hurting. I also have this stiff feeling that runs from the top of my left butt cheek straight down to the back top of my left leg. I am wondering if maybe I am out of alignment or something. I really don't know a thing about this and have never seen a chiropractor in my life.I don't dare to do anything that could do more harm then good. Any words or wisdom for me? Thank you for anything you can offer.
I truly wish everyone well and pain free days,
Gracie

[nyt]

I have found chiropractic helpful but it really depends on the chiropractor. My hips had gotten out of alignment, probably due to muscle spasms, and the first chiropractor got it partly back in and I could tell because my piriformis syndrome got a lot better but after about 5 months of going everytime he would adjust me my right leg would feel worse by the time I got home. I told him he was too aggressive but he could never seem to find the right way to adjustment me. I found a new chiropractor that is extremely gentle and I see her twice a week. She didn't know anything about PNE but she has been willing to learn. She also feels that the muscle spasms pull me out of alignment, hips, lower back, shoulder, TMJ joints and she has been incredibly helpful keeping things in alignment and I do find it helpful. We do a combination of things when I visit her office and varies each visit. Sometimes she does cold laser therapy on my legs and butt, sometimes she works on trigger points in my legs and butt, but always adjustments. She is always very honest with me and doesn't think she will cure me. LIke most chiropractors she is very non-surgery but was very pleasantly surprised how much better my left leg is since my bladder sling removal with Dr. Hibner. Probably the whole non-surgery thing with chiropractors has been the hardest thing for me to deal with as they can sometimes be a little pushy with their opinions and they really don't understand the complexity of PNE.

The other thing you might want to consider along with the chiropractic is massage. Once a week I have a massage before I see the chiropractor and it makes a huge difference with how easily she can adjust me compared to the day I go when I haven't had a massage.

[Karyn]

I have found chiropractic helpful but it really depends on the chiropractor.

I agree. I also found a chiro who was able to help me somewhat. Very kind and compassionate man. Primary focus of treatment was neck, hips and sciatica. After one visit, he completely relieved the sciatica. I saw him 2/week for 6 weeks and the sciatica never returned. Wasn't very helpful for the hip problems, though. He also didn't know anything about PN but listened to me with great interest and even did some research about it on his own. He just wasn't equipped to help me any further. I say give it a try!
Warm regards,
Karyn

[gracie]

Thanks for the info. I think I will give it a try. It made me feel a little better that this chiropractor does have other clients with pelvic nerve pain. I guess he can't talk me out of surgery since I already have done that. My obgyn tried that, but I did not listen as he knew absolutely nothing about PN and was not interested in learning anything about it either. I have found a new one since then. I am curious though, I hear a lot about muscle spasms from folks here on this site. Is it possible to have muscle spasms and not be aware of it? I just have the pain I have described, I don't feel any spasms. I hear others talking about different joints and muscles. What kind of tests are run to have a clear picture of what is going on with these. I have had CT scans and MRIs and none of the doctors have mentioned these things to me. I am just curious how I can get a clear understanding of what is going on with my body. This is just so frustrating to understand. All I know is my pain mgmt Dr suspected PN and Dr. Conway agreed. That is the only diagnosis I have had. Seems like there are so many other things going on with most people that maybe I am missing the boat on something important that needs attention or maybe I am just looking for something that is not there and I should just feel lucky. I just wish I was more educated about all of this. I really appreciate the feedback. Seeing a chiropractor doesn't sound to be something that could do more harm.
Thank you so much,
Gracie

[Karyn]

Hi Gracie,

I hear others talking about different joints and muscles. What kind of tests are run to have a clear picture of what is going on with these. I

A chiro may be able to help you with that but I think your best bet would be an evaluation with a good PT person. To the best of my knowledge, imaging scans won't pick up joint or muscle dysfunction. You need someone who works hands on with the body. I had one of the worse cases of "myofacial pelvic pain syndrome". It was explained to me that my pelvic muscles were in a constant state of spasm. I don't know if it was because I was unfamiliar with this type of pain, but I didn't feel like my muscles were spasming. When I think of "spasm", I would think of muscle contractions or some kind of movement. But I was told that medically speaking, spasm just means clenched. I'm wondering: do you have sacral pain? I also have bilat hip pain and that pain you described from the top of your butt to the back top of your thigh. It doesn't feel muscular in nature though. It feels like nerve pain. I thought it was some how related to the sacral pain I have. But don't know for sure. What does your hip pain feel like? Does it feel like joint pain? I have no idea whats up with my hips. I don't know if that's also from the sacrum pain. It feels like I have thin, sharp, steel bands starting in the back and wrapping around the front top of my hips.
Warm regards,
Karyn

[gracie]

Hi Karyn,
I think my pain is more associated with my coccyx. It hurts if touched and when I stand up from sitting down too. I find it easier to sit on hard surfaces then soft which I read is common with coccyx pain. I also have a major burning feeling on the inside left butt cheek and my sit bone hurts alot. The hip/outer thigh pain feels like a burning, but I know what you mean about the elastic feeling. Sometimes I feel like there is a tight elastic around the very top of my left leg just below the buttock. The pain that goes from the top of my buttock down my leg just feels like something is stiff inside there. It doesn't feel like it wants to bend at all. I feel like there is a stick embedded deep in the middle of my butt down to the top part of my leg. These things are so hard to describe. I am going to call the chiropractor on Monday. I found out that I can self refer for this so I don't need a referral. I would love to find a PT, however Dr. Conway advised against this because where I live there aren't any that know anything about PN. Frustrating as hell. The only ones I have found are still a good 2-3 hour drive.
Thank you for sharing. You've helped me come up with some questions for the chiropractor.
Gracie

[HerMajesty]

I tend to bad mouth Chiropractors and am going to have to stop since i went to this World Interdisciplinary Congress on Low Back and Pelvic Pain this week and Chiro's, as well as PT's responded well to the idea of signing up with us to learn how to manipulate the pelvic joints correctly. So instead of trashing the profession, I am changing my position as follows: Chiropractic joint assessment and manipulation techniques, just like PT joint assessment and manipulation techniques, as taught in most degree programs are not particularly effective. As a result, if you get any relief at all, you will make a tremendous investment in time and money in continued weekly (or more frequent) visits if you want continued relief. However a small minority of individuals in either profession do seek out education and innovation, because they want to improve outcomes for their patients. It is possible to learn to permanently correct many kinds of pelvic joint dysfunctions, but only a small minority of Chiro's and PT's train to do this.
And of course, only a subset of individuals with nerve pain have joint dysfunction. If a PN patient has a balanced pelvic joint structure and their only problem is a nerve stuck in scar tissue or another non-joint issue, no kind of joint manipulation will be helpful. I did get much permanent relief from balancing my pelvic structures; but now that they are balanced, I still have other pathology (cysts on the nerve roots) which will not respond to this type of treatment.

[gracie]

Hi HerMastety,
I completely understand your position on this. I only considered this chiropractor when I heard he has other patients with pelvic nerve pain. I plan to bring some information with me about PN. I have come to the point in my search for help with my pain that I now ask right up front if the Dr. is willing to research PN before taking me as a client. I don't want to waste my time or his if he is unwilling. My new obgyn told me right up front that he knew nothing about PN, but the difference between him and my old one is that he told me he would help in my search for anything that would help me. He actually said he would treat me as a patient the same way he would if he were searching for help for his own wife. Let's hope they have a good relationship Haha.
I always value your advice and input HerMastety as I know you are a wealth of knowledge. I know you have been through a lot yourself and I appreciate your willingness to share all that you have learned. Let's hope that some chiropractors will find PN something they want to learn about and hopefully treat us. I will welcome any doctors willing to take us on.
Hoping you are well,
Gracie

[Karyn]

Hi Gracie,
OMG! How very excellent and smart of you:

I have come to the point in my search for help with my pain that I now ask right up front if the Dr. is willing to research PN before taking me as a client. I don't want to waste my time or his if he is unwilling.

Congrats on finding an open minded GYN who's willing to go the extra mile for you! Very rare indeed!
Wishing you the best,
Karyn

[nyt]

The biggest difference between the first chiropractor I saw and my current one is the willingness of my current chiropractor to educate herself on pelvic pain and how the sling I had went in. She told me her pelvic anatomy was very rusty and it has been good for her to get back into areas none of her patients ever complain about. In my humble opinion that is why my current chiropractor has been more successful. Recently she has even started adjusting my pubic bone with hopes it will open up more space for my obturator nerve. As long as it doesn't make me worse, I am willing to give anything she has thought about and wants to try. Hermajesty you are correct in that they will only be able to fix/help so much just like PT because if your nerve is entrapped in scar tissue the only way to free up the nerve is remove the scar tissue.