Pain Management Or Surgery

[JODDY]

I am looking into pain mangement. I have had Levator Spasms(orPNE) for the last 20 years. Levator Spasms are spasms of the rectal muscles.I have read some posts about how PNE surgery has helped some people, and for some it has made them worse.There is always a chance that the PNE surgery could make me worse. Thats a gamble I'm not ready to take right now.

[janetm2]

I had EGS electrogalvanic stimulus treatments and Botox for Levitor syndrome muscle spasms but eventually PNE came about and I did surgery. Earlier on the treatments did help. Good luck.
Janet

[JODDY]

Hi janetm2, EGS and physical therapy did not help me.Since the physical therapy didn't help,the physical therapist said I probably have Pudendal Nerve Entrapment.I have tried everything except botox and pain mangement. I have been told that PNE causes Levator Spasms.If the botox or pain mangement doesn't help, I guess I will go ahead and have the surgery.Their are 3 teams of doctors that do this surgery.One team is in France the other team is in Houston, and the other team is in Phoenix,Arizona. I will have to forget about the doctors in France,there is no way I can go to France. That Leaves the Doctors in Houston Texas and Phoenix Arizona.I live in the Dallas-Fort Worth area and the doctors in Houston would be close to me.The only thing I don't like about Houston doctors is that they cut out the ligament. This can cause pelvic instability. I sure don't need that on top of everything else.The doctor in Phoenix cuts out the ligament too, but he repairs this ligament to prevent pelvic instability. So, it looks like I will have to go with the doctors in phoenix when I decide to have surgery. Some people have had PNE surgery at Houston and not had any pelvic instability problems &then there are others who have had pelvic instability problems after surgery..I just don't understand why some people have problems and others don't. I know I don't want to live out the rest of my life in this condition.

[janetm2]

I agree with not wanting to live with this condition. I am still waiting to see how much better I will get. I have the cut ligament and Unstable pelvis and it sucks along with the rest however I did avert the 24/7 pain level 10. I dove in to surgery as I was degrading and did not want to lose my job ( down to 5 hours work and only 4 days with weds break) so now up to 7.5 a few days a week and shorter days for PT acupuncture and chiro ) . I also did not find this forum until after the surgery. You will have plenty of info hear about the doctors etc to help you. Of course as you said the data is not clear cut for what works or how it impacts everyone (many different ways with no consistancy) a very tough and frustrating condition to make decisions. Honestly I am almost glad I did not find the forum because it may have overwhelmed and gridlocked me. You appear to have a set of goals and path and just need to go down it. Pain management worked with me chronic foot pain alowing me a limited but way to work and do some things at home and out for vacations again limited by usiing a wheelchair of course the combo with this condition is giving my a challenge to do some of the previous but there is still time to finish recovery and the other things may fall in to place. Good luck and sorry you have to look at these options and deal with this.
Janet

[carolynm]

My plan is to continue the PM route until the lap decompression surgery is more widely available. The current surgery seem barbaric and brutal to me. PRF is my next step.

I am suffering daily, but I have 2 toddlers and cannot have much downtime after the TG surgery. This has already been so financially devastating.

cari

[JODDY]

Hi carolynm, I agree with you about this problem being financially devastating. I have spent a lot of money in the last 20 years. I am now on medicare with a supplement and that helps a little, but some Doctors like Dr Dellon do not take medicare.Like I said, I am going to give pain management a try. I may give physical therapy another try. I think I need a PT that specializes in treatment of PNE patients, not just a regular pt. If I find a PT that specializes in the treatment of PNE patients, I will go with the physical therapy first.If the physical therapy doesn't help, I will try the pain management. If that doesn't work,I will just have to take a chance on the surgery. I don't like the idea of being cut on,but living(if you want to call it living)out the rest of my life with this condition sounds even worse.

[JODY23]

I seen my Urologist last month and he said I should try interstim. Has anyone heard of this procedure? My doctor thinks it would help the Levator Spasms(PNE).
I have found several people that had this procedure done and it made their Levator Spasms(PNE)worse. Interstim is a device with 2 leads going into sacral nerve. (If this is wrong, let me know).This device is battery powered. Here is list of problems associated with this procedure:Pain at implant site, electrical shocks, infection, skin irritation, numbness in the legs,nerve injury, dificulty walking, and negative change in bowel or urinary habits, and trouble urinating whether the device is turned on or off. I can't imagine having one of these on top of what I already got. I got a appointment in 2 weeks with this doctor, I am going to tell him that I DO NOT want to have this done because I feel that it will only make my Levator Spasms (PNE) worse.

Jody

[helenlegs 11]

Hi Jody,
I would read this
http://www.pelvicpainrehab.com/blog/201 ... ofeedback-

it is very up to date and from what I remember supports your theories.
Take care,
Helen

[Violet M]

Joddy, you can go to the neuromodulatin section of the forum and read about Amanda's experience with interstim -- although she is using it after failed PNE surgery and in your case I don't think you've had PNE surgery, right? The effectiveness of interstim is sort of like surgery -- you don't know until you try it whether it will help or not but at least you have a trial stim first to see if it will work.