Did labral tear surgery reduce your PN/pelvic/perineal pain?

[Griff522]

Thanks for the replies Shana and Al. I know deep down that everything will be ok. If I can handle the pain I've been experiencing for the past 3 1/2 years, I'm sure I can handle the recovery pain. I just want so badly for this to be the fix for my spasming OI muscle!

[beverley]

HI all (and Griff): As i had posted, I had my hip injected with cortizone three and a half weeks ago at HSS and it didn't reduce the pain (hip or pelvic) but i think it may have helped my Psoas -- which basically wasn't functioning -- calm down and function better. I have been on vacation and will know more when i go to PT and the Chiro. The good news is that i started taking neurontin and it really seems to block both the hip pain and the PN pain. I had taken amatrypaline (sp?) for a while and it really worked but gave me heart papitations so i had to stop. The neuronin has given me muscle cramps but it is blocking the pain and weirdly alleve also works for the pain. What pain meds are you all taking? I dont understand how pain meds for neurapathy help my hip pain, or an anti-inflamatory can help PN. Any insight would be appreciated.

I will start PT and ART again and hopefully this flare will go away!!

Griif: Dr Coleman is great and HSS is the best hospital i have ever been to (i havent been to that many but still). You are in good hands. It definately helped my PN. Also, who is your Physical Therapist? Please call me if you need a pep talk.

[Griff522]

Thanks for your response Beverley. I'm glad to hear the Neurontin is helping you. I don't take any pain meds. I tried Neurontin for 6 months during 2010 and it barely took the edge off the pain at 1500 mgs, and I was loopy as hell! Hated feeling that way, so I weaned myself off of it and continued to search for the source of my pain.

I'm not really sure right now who I'm going to use for rehab. There are several good facilities close to me, but I'm thinking that I really want to do Aquatic PT. A friend of mine had a PAO about 5 years ago and she did a lot of her rehab in the water. She even told me about a book called "Heal Your Hip" that is authored by a orthopedic surgeon and Linda Huey, who is an aquatic PT. I've been reading this book for the past few months and actually doing some of the exercises to sort of Pre-hab for the surgery.

Who did you use for PT? Is your chiro helping with the PT? My chiro is trained in ART as well so I'm wondering what Dr Coleman thinks of it.

[beverley]

Before the surgery, i did pelvic floor PT with Isa Herera and it helped a lot. After the surgery, i did pelvic floor PT at 5 Point -- because they co-authored the study with Drs. Coleman and Coady on hip disorders and Pelvic pain and they specialize in hip rehab and Pelvic floor issues. The surgery flared my PN and my Obturator was very tight and in spasm so Pelvic floor PT really helped. I also did the normal rehab for the surgery with a regular PT. But doing it in a pool sounds great.

I didn't do ART until recently and the guy i go to was recommended by Dr. Coleman. His name is Dr. Winnick and he has helped other Hip/pelvic patients of Dr. Coleman. He is really good and actually works with Dr Kelly at HSS as well. I call him the Chiropractor (he actually isnt a chiro but some sort of special doctor) to the stars because he has all sorts of celebrity thanks yous on his wall. Anyway, i also go to a regular chiro that does more basic stuff and is covered by my insurance.

The thing we all have to realize is that the hip surgery isn't an instant fix/cure all. There are a lot of muscular imbalances/tighness/weakness, scar tissue, adhesions etc. that develop over time that need to be dealt with. All the people that i have spoken to said it took up to a year for their pain to go away after the surgery -- and they had to do a lot of PT, massage, ART etc to heal. My one criticism of Dr. Coleman is that i don't think he really gets how complicated pelvic pain is -- it isnt really his specialty -- and he leads you to believe you just have to have the surgery and do nothing else. That hasn't been the case me or anyone that I have corresponded with. So my advice is to be as proactive about using all the tools and professionals available to you to get better and don't expect the surgery alone to cure you 100%.

Anyway, sorry for the long dissertation and I hope this helps. Good luck!!

[shana]

Beverly, its interesting you're saying Dr. Coleman said after surgery your pelvic pain will be better as he never said that to me. I'm going for my second surgery with him in a month and he always says you're still in the running but not everyone finds it helps the pelvic pain and it can take a year to see any relief with the pelvic pain. For now I would be happy if the surgery got rid of my hip and groin pain as that would take care of a chunk of my pain.

[beverley]

Shana: Dr Coleman didn't say my pelvic pain would go away after surgery -- he said that 70% see an improvement from the surgery and that it usually takes up to a year. But, what he didn't say is that I needed to address it with more than just the surgery and i think he implies the surgery alone will cure it (if it can). From everyone i have spoken to they needed more than just the surgery. BTW, did your nerve injections help?

[shana]

Beverly, I had a totally different take on what Dr. Coleman said with regard to surgery. One of the main reasons I like Coleman so much is that, at least the way I took it, he said he doesn't understand why some people report hip surgery helping the pelvic pain but people do so there's a chance it will but a chance it won't. I learned the hard way that if a medical provider tells me "this will work/cure you" to run! I never felt that way with Coleman. As all our histories are different and mine seems to be "extremely complex", as one doctor put in his report, I'm sure what each patient is told varies.

The nerve blocks I had with Chapman were not so successful. The first block was either a miss or just did nothing. The second one helped with partial relief (did not help the coccyx or anal pain) for only about a week. I'm looking now into pulsed radio frequency nerve ablation. My doctor who is overlooking my medical care told me to go to Dr. Diwan so I scheduled an appointment for Aug 16.

At this point in my journey nobody really knows what to do with me. I'm told if you want to try more blocks and/or PT its up to you. I just started treating with Dr. Deena Harris who feels there's more than just PNE and hip issues. We are waiting for test results but she offered to oversee my care and help me figure out my next move which is a HUGE help as I'm so lost. She's more of a sexual pain doctor, she doesn't really treat PNE so its a different perspective than the recent doctors I've seen. She's very knowledgable in PNE as many if her patients have it. She said she's been able to help some of her patients identify exactly which nerve is causing symptoms and then in surgery the doctor is able to just address that nerve instead of all the nerves that's usually decompressed in surgery so the recovery is easier.

Taking it one day at a time

Shana
Shana

[beverley]

Hi Shana: I go to Dr Harris as well and she has been a great guide for me through all of this. So i am glad you are seeing her. And, I think Dr. Coleman has been great (he is also a family friend!!)-- don't get me wrong. You are correct in that he is very good about not overpromising. I just wish he had more of a multi-disciplinary (sp??) approach. But, no one really does. Everyone just does what their specialty offers and for me i have needed more than just one approach and strategy to getting better. Please keep us posted on your progress.

[Griff522]

Wow, I guess both of you live close to New York. I'm in Michigan and my rehab will have to be here. Still searching for the right place. I continue to search for a doctor that will guide me through this process but unfortunately still haven't found one. I thought I had found a PM&R doctor who specializes in pelvic pain, but after one appt with her, I knew she wasn't for me. I brought in my records and she didn't even ask to look at them much less want a copy for her records. Then she examined me and told me she didn't think it was my hip causing my pain. She thought it was neuroplasticity and handed me off to a pain med doc. I didn't even know she was handing me off!! I thought she was going to do the injections. I went through with the first of what was to be 3 nerve blocks. It was a caudal epidural and I did it without sedation and it hurt pretty dang bad. I got no relief whatsoever from it, but it did royally screw up my digestive system for the last 3 months! I don't need any more blocks. I know what the problem is. It's my OI muscle in spasm. I just need an answer as to how to stop it from spasming!!!!! Maybe stabilizing the hip will help . . . I'm praying to God that it does.

[beverley]

Yes, I'm in New York. But my husband can do pelvic floor release as well as my PT so maybe you can go to Stacy Futterman at 5 Points while you are in New York and then teach someone to do Pelvic PT when you get back to Michigan. The PT hip rehab is pretty straight forward. Good luck.....