Possible PN and hoping for help!

[Violet M]

That's true although unfortunately, so far I can't remember anyone coming back to report they are finally doing better but we haven't really had that many people post results of surgery with Aszmann.

Violet

[Meliora]

Helen - I am certainly trying very hard to do my "homework" and pick the best surgical approach. I wish I knew for certain what I needed, as I know we all do. I sent A's mommy a message, but have not heard back. I am sure she has things going on or she would have responded.

Violet - I wonder if there are more successes in woman with Dr. Aszmann, because he can reach more areas. I do not know how many women he has operated on though. That may be a question I should ask! Regardless, he seems to be an upstanding individual to answer so many e-mails from patients in need.

[Meliora]

I had botox done unilaterally. If it helps, I will have the other side done (obturator internus muscle.) How long does botox typically take to "kick in" and stop spasms? I am still dependent on vaginal baclofen for help with spasms and hope the botox will take over soon.

I am next going to consult with a surgeon to see if I could have a sports hernia. I had been routinely lifting objects and my child that was much too heavy for me. I also had severe groin pain after being on a treadmill a little over a year ago, I still have a lot of pain on that side and is my worse PN side. I have had a c-section years ago, but wonder if weak abdominal muscles could contribute to anything. However, it could be my hip still and everything else going on with me. PN can be such a puzzle!

[Violet M]

How long does botox typically take to "kick in" and stop spasms?

I haven't tried it so I can't say from experience but from what I've read it can take several days. Hope you will be feeling some relief soon.

Violet

[Meliora]

The Botox I had in the right obturator (two areas) did not provide relief unfortunately (done by pain doctor.) In a couple weeks I am having a combo of Botox (much more extensive,) CT guided perineal blocks and vein scleritization. I had very abnormal pelvic veins embolized in December, but it also did not help. I saw Dr. Hibner/Loretta PT and it is felt there could still be varices deeper/lower in my pelvis, that need to be addressed. I am a little concerned with the foam/agent used to "destroy" the vein but, also feel I need to take every opportunity to get better. Hopefully there will be improvements from this combo approach.

On a personal note I was so fearful to see a PT (I have a PT injury from a therapist local to me) and Loretta is awesome! She is very careful and lets you know everything that will happen, I was at ease with her approach. Dr. Hibner had a lot of information and seems willing to do what is needed to help.

I am also looking into why I still have right groin pain, will be checking in hernias, endometriosis, etc.

[helenlegs 11]

Good luck with the 'combo' approach Meliora. The more I hear about Dr Hibner and Loretta the more I like them and the work they do Not only that, Dr Hibner actively spreads the PN word too which helps enormously.
Groin pain can come as a result of psoas muscle tightness and piriformis but I'm sure Loretta will have checked those muscles out. With me the hips are also sore with a spasmed or tight piriformis, so that may rule this one out. Still worth bearing in mind perhaps?
Take care,
Helen

[Meliora]

Thank you Helen! You are always so sweet to respond! I think Loretta and Hibner are a good team. There are some really kind physicians that treat PN out there, I have talked (not actually visited in person) with at least five and impressed with all.

[helenlegs 11]

Well Meliora, when you think about it, pelvic nerve treatments are not at all mainstream medicine, as we know too well; so the physicians who have taken up the PN challenge must be that bit more special, humane and empathic.
They see patients in pain and have decided to actually try and do something for them rather than dismiss or ignore the problem as others have done and continue to do, unfortunately.
I'm sure there are some who I would prefer to others but they are still all hero's in my book
Thank goodness for them.

[Meliora]

Helen, just realized I never wrote back....sorry! Yes, PN doctors are heros...they take a rare and horribly painful issue that can take so much time to treat and still keep helping! Thank goodness!

I had perineal nerve blocks (steroids I believe as well) and botox this week with Dr. Hibner. I was nice and numb except an area on my right side that refuses to numb. It's my number one pain area! UGH! I did have my number two area (vaginal) get numb though. I don't know what to think. I hope it does not mean I am trapped higher up, as I am hoping to have the frontal/perineal approach done (less healing time than TG.)

The spot that is stubborn on the right side, is in an area that I think something is impinging on the nerve from my "treadmill event." I had horrible groin pain one day and now that area stays angry and reaches all the way to perineal/side rectal area (but not rectal pain per se.) I see a general surgeon next week to see if he thinks a hernia or my hip is to blame as well.

The burning is coming back, so the block is wearing off. Good and bad....the burning bad, sensation good, as I was urine incontinent for the first couple hours after surgery. The nurse said that could have been anesthesia though. I had a really hard time with anesthesia this round. In fact, I do not remember anything after the anesthesiologist came in with my "cocktail as he called it." I was hoping to actually be able to remember my conversation with Hiber about where he felt my problem was BEFORE I was knocked out. I told the doctor I was sensitive to all meds....note to self refuse the "pre cocktail" for future so to remember what doctor tells me!

The botox should kick in soon and I hope it gives me some relief, minus incontinence issues. I am not too hopeful, but would be nice. I asked Dr. Hibner to only do the vein scleritization if he saw varices on ultrasound. I had none, so I was able to skip that procedure. I had a whole pelvic embolization in December.

Looks like I have to keep up searching for the root of all my pain. Part of me wants to just get a pain stim and just get back to some sort of life! Have another appointment booked with Hibner....will be surgery or more blocks/botox.

[Thunderman69]

Hi Meliora,

I am sorry you are still in pain, and back to the grind of searching for answers.. I hope you find the answer real soon!

I threw in the the towel so to speak and I am having the SCS implanted in 7 days. We are just waiting on insurance authorization to approve it. I just couldnt handle the pain anymore and I read that Dr Hibner has done surgergy on folks with implants so I took that into account in making my final decision as I have him on my short list of possible Future PN surgeons.

I met a guy named Jeff Brown thru this forum who had a SCS implanted last March. I ended up talking to him the other night for a couple hours and his story is absolutely amazing. This guy is now my inspiration to live every day to its fullest and get better! He has been living with PNE for almost 30 years!! Jeff Is 48 years old and was somehow able to marry and have 2 sons with this hideous condition.. Amazingly he was able to maintain his job and his marriage, and put his boys through college! Its how he did it thats even more incredible. His contact information is listed under the Nuerostim Thread - Dr Morar . Dr Morar implanted the device for him and it has changed his life.. I suggest at least sending him an email and then getting his phone number and talking to him. He doesnt like emailing/texting conversations as he prefers simply chatting over the phone. But you gotta hear his story. WOW.

Cheers

Matt