Hope After 3 Surgeries

[n4061]

It has been more than two months since I posted anything on my wife's condition who has been fighting PN for over two years and had three surgeries with Dr. Filler. Just when we thought things were never going to turn around a small promising miracle appears to be happening (yes we have never both prayed so much in our lives). A little background for new readers. We discovered Maria had PN one year after the symptoms started. We selected Dr. Filler due to his reported reputation and close proximity to our home in southern California. Physical examinations, MRI's and injections lead Dr. Filler to suspect PN but with very rare symptoms. He told us from day one her case was less than 5% of the normal cases he see's. She had surgery on her right PN with no improvement. A few post surgery injections did nothing then her left side started to act up. Surgery number two provided 80% pain relief 8 weeks post surgery then all hell broke loose. The nerve moved onto a ligament and she had to have what we called emergency surgery this past June. While the ligament touching the nerve pain was corrected she still has the normal PN pain. Her pain levels remain at 8-10 daily. Hydromorphone and Ativan are the medications she takes and the Hydro doesn't work anymore. Came close to having a spinal stimulator installed a few months ago due to the severe sacral pain that is worse than the PN pain. Fast forward to 9 weeks ago and Dr. Filler said we could attempt another series of injections to soften up the scar tissue, relax the piriformas muscle that it still showing some signs of an entrapment further up than he has ever experienced and muscle spasms. He also targeted the Impar Ganglion again. The first set of injections provided her 100% pain relief instantly for about 24 hours (first time ever). While all the pain came back we were excited he confirmed the spot. Three weeks later another round of injections and 36 hours relief and some signs of longer lasting relief. 10 days ago another round of injections and today her sacral pain is down to a 3-4, PN pain is 5-7 with no medications! While she still can not sit she is mobile and doing things around the house. A good sign is that when she over does it the pain gets worse the next day then gets better with rest. We still have a long way to go but at least we are seeing positive signs. When I think back the days and weeks of her lying in bed wishing god would take her this is a miracle. Lesson learned for us is to stay on the PN trained doctors ass and don't let him give up. We sensed Dr. Filler almost wanting to give up but we persisted and he hung in there with us. No one wants another surgery and his experience and skills at giving these injections is hard to beat. He is not cheap but Maria says he is the only one she trusts to give her injections. We keep our fingers cross and still have a long way to go but hopeful. To all those out there fighting this terrible problem, hang in there, pray and push the doctors as hard as you can.

Will keep you posted.

[missyrg]

That is an awesome story, thank you for sharing. I am praying she will continue to get better. Missyrg

[Karyn]

Thanks so much for the update! I hope she continues to improve!
Warm regards,
Karyn

[nyt]

I am so glad to hear of the improvements! If I understand your post correctly the Impar Ganglion blocks really have helped the most. Are you still planning on seeing Dr. Hibner in Feb? You will continue to be in my thoughts and prayers for continued improvement and future decisions.

[Violet M]

Thanks for posting your wife's experience. She is very fortunate to have you to help her fight through this battle.

Wishing the best for both of you,

Violet

[HerMajesty]

I am glad she is having some promising results and just glad to see you here again...I thought you lost the board when it changed locations. I'll say a prayer for Maria.

[Quilter 2]

n4061;
this is the first time I've seen your post. Maria is one lucky lady to have you in her corner. I liked what you said about staying on the Drs. butt. You got that right. I have been lucky to have Dr. Quesada fight for me with the ins. company. United Health Care has been my problem. BUT, pesistance does pay off. I finally got approved for a Botox shot after Dr. Q wrote 2 appeal letters and I sent in 48 pages of info.
My very best to you and Maria. Lying on a bed just wanting to die because of the pain hurts our other halves almost as much as it hurts us.
I'm very happy for Maria
Doreen

[n4061]

Well I spoke to soon. The forth injection injection to the piriformis remnents which took some applied pressure by the doctor woke everything up. A seven day treatment of steriods helped calm the pain back down to below a 10+ but we are in bad shape (again). We have a call with Dr. Filler tomorrow and plan to discuss what the four injections over the past three months tell us. We know we are in the right general area but why will the injections only provide limited short term relief? Another entrapment, scar tissue, impar ganglion or what? If it turns out to be an entrapment further up the PM then we need to decide if it is worth the risk of a forth surgery? One thing for sure is this is not life for Maria. Back on Hydromorphone and Ativan which only means more trouble ahead with side effects.

For those spouses out there reading this, please be compassionate for your loved one that is suffering with this evil condition. If you have a large family lean on them for support if you need it. For us, it is just the two of us and we are fine with that. We pray a lot and it does help. I manage to escape for a little while in my work but knowing that the most important person in the world is home in bed with pain is always heavy on my heart and soul. Believing that some day I will get her back to normal is what keeps me going. Knowing that she needs me to remain strong and support her is critical to both of our sanity as we fight on. I can not tell you how many sleepless nights we have had with her crying out in pain and all i can do is hold her close. The days when she gets so angry and cries out for god to take her are hardest to deal with as a husband but i try to understand. When this started the week of our 25th wedding anniversary we were already best of friends now we are forever soul mates. Life is not always fair but fighting through things like this can make us kinder and better humans. My holiday message to all who read this is to be extra understanding to your love one and stay strong.

[Missingmylife42]

Can you talk to my husband thoses words are my husbands life right now please send my love to your wife o god my husband needs you :,(

i have not had surgery yet but everything you have said is us, is us :,(

[Quilter 2]

Hi n4061;
My husband is going through the hell also. Most of the time he handles it pretty well, but when my pain does the 10 + it makes him very nervous. Thank-you for speaking out. I will print this so that he knows he's not alone. Just having someone else in the same lousy boat helps, I think.
My best to Maria. I do so think she might want to give another doctor a shot. After 3 surgeries I know I would. Dr. Hibner has done some amazing things according to this site. Would it really hurt just to talk to him? I have an appt. with him in April. In the meantime I've been seeing Dr. Conway in NH. I haven't had a surgery yet, but I know that's where I'm heading. But before I do, I'm getting at least one more opinion. Just a thought for you both.
Lots of hugs to you and Maria;
Doreen