PN Surgery Update 20 Months Later

[n4061]

I have not posted in some time and provide the following update to help others.

Maria's first symptom start in June 2008. One year to diagnose PN as possible cause. First surgery to Right PN failed to provide relief. Second surgery (Bi-laterial) provided short term relief. Third surgery provided relief or about 2 months then all hell broke loose. Dr. Filer assessed the nerve had moved against a ligament and agreed to perform one last surgery. The fourth surgery (Bi-laerial) found the nerves touching some ligments and was in fact inflamed. He cleaned that up and removed some of the ligament then proceeded to go higher up the PN then he done in over 250 PN surgeries. He found the PN to be entraped further up the Piriformas Muscle and removed more of the muscle. This 10 hour surgery appears to have done the trick. Maria suffers from inflammation and has been on/off Predisone for the past year along with Enbrel which appears to have settled down the PN inflammation. She is off all medications for the PN and lives at a 2/3 pain level down from 10+. Can still get flare ups but they calm down within 24 hours. We are now dealing with Sacral Pain that had gone untreated the past four years and appears to be soft tissue. This problem we believe has impacted the ability of the PN to really complete healing since nerves do speak to each other. While she has not been diagnosed with AS she has all the sysmptoms. We have no idea hw this all came about but it doesnt matter. We are thankful that Dr. Filler did not give up on her difficult case and in the end he helped her. Bottom line is if any doctor wants to give up on you either find another doctor or make him keep trying. For the spouses out there dealing with this evil condition remember the suffering he/she is going through and be kind and gentle. You may have to give up a good part of your life while you both deal with this PN issue, but if you truely love that person you are not giving up anything that matters. Feel free to contact me if can provide any assitance. I should also mention that during the past four years I had to take on the medical institutions more than once to secure the out of plan coverage required and won every battle. If you facing the same issues remember that you are dealng with people that know less than you and if you document all the facts and present them correctly there is a very good chance you will win! Don't ever give up!

[Violet M]

That is awesome to hear that Maria is doing so much better! Thanks for letting us know of her progress. My guess is that even though she is not cured she is very happy with the results so far.

You are an amazing supportive spouse and I agree with you that it is so important for PNE patients to have someone who is helping to advocate for them because when you are in serious pain it's difficult to think clearly and to be proactive.

All the best,

Violet M

[nyt]

Yeah!!! I am so glad to hear of this wonderful news!!

[helenlegs 11]

Thanks for posting your wonderful story. It is made all the more touching because of the love and support you have given your wife through all of these difficult times.
Immensely pleased that Maria has at last found a place where she can function from. Good luck to both of you
Take care,
Helen

[HerMajesty]

I am glad to hear she is doing so much better, your earlier posts were painful to read she was suffering so much. Living with chronic pain at any level can be a struggle but I am thankful she has been able to get much of her life back..