Thursday, December 15, 2011

Moving Forward

Many of you have prayed for wisdom for us concerning future medical decisions, especially clarity on whether I should have pudendal nerve decompression surgery in January or not. This has been the hardest decision I've ever had to make in my life and, to be honest, it seemed like we prayed and prayed without a clear cut answer. But we asked for wisdom and trust that God gave it to us as He promises to do (James 1:5).

We had serious doubts about the surgery. The outcomes (60% chance of SOME improvement) are not great and the recovery process is rough to say the least. (4-6 months before seeing ANY improvement and at least 2 months of not being able to stand for long or bend over). And the big kicker for me is that, as with any surgery, there is a risk of scar tissue. So the entrapment could be released only to get re-entrapped in scar tissue. There is also no way to know 100% for certain that I have pudendal nerve entrapment (except through surgery). So I could go through the surgery for nothing.

We have decided to postpone the surgery until July and try out some other treatment options/diagnostic procedures first. I feel good about our decision, even though my pain has been quite debilitating the last few months.  I feel if I continue to uphold my lifestyle modifications: not bending/squatting/lifting a lot, limiting sitting, and not "over doing" things it is unlikely my nerve will get much more entrapped (if it truly is) in the next 6 months.

I feel like there are benefits to waiting for surgery: my daughter will be a little older so she will be a little more self-sufficient and hopefully completely potty trained by then. Also it will be the summer instead the dead of winter which will make the many short walks I will need to take post-op easier. My mother and two of my aunts will not be working as they are teachers so I will have more help available. My brother plans to get married in June so now I won't have to worry that I will not be recovered enough to attend the wedding out of state.

I know surgery is still a likely possibility for my future, but I want to feel like I have done absolutely everything to my knowledge possible conservatively before I have my butt cut wide open and ligaments severed! I also know that it is possible my condition might never improve. This is something I am struggling to accept to be honest. As I continue to become more debilitated, I worry that I could end up mostly bed-bound if God does not provide some relief. But even if that is His plan for me I have to trust that it is good and that He loves us.

We would appreciate your continued prayers for my family and I as I conntinue to battle chronic pain.

1. I was denied social security disability (The doctor who made the decision said he believes I can sit for 6 hours a day. Something tells me he didn't read my medical records). My husband has low-paying job despite his high education so we need just a little more money to afford our bills, especially medical bills. We are meeting with a lawyer on Tuesday to get help with our appeal. Please pray God will give the lawyer wisdom to help us.

2. My husband has applied for several jobs over the last week. Pray that God would provide a better job (both with schedule and pay) in the near future. He has to work mostly evenings right now and it would really be helpful it he could get a "normal" day-shift job since my pain is worse in the evenings.

3. Pray that God would help me to find a medication or form of treatment to get my pain back to a more managed level (like it was in August prior to my botox treatments). Currently my pain stays around a 6-8 (out of 10), whereas before it was usually a 4-6. 

4. We will travel to Georgia in February to see a physical therapist who specializes in difficult sacroiliac joint dysfunction cases. I felt this was important to rule out because 6 PT's and 2 doctors have told me I have SIJD, but have not been able to correct it effectively yet. So pray this PT will be able to help and that this will in turn help with my inability to sit or stand for very long.

5. I also plan to get a special MRI (in New York City) and to get a CT-guided pudendal block to double check that this is the correct nerve causing my pain. Pray that these diagnostic tools will bring greater clarity to my chronic pain.

6. Pray for contentment, peace, and joy in Lord even when life is hard and my pain is very bad.

Thanks for your continued support and prayers. As always, I would love to know how to pray for you all as well.


  1. I am praying. You are very brave. I know God is with you. I am so sorry you are going through this. It sounds awful. I do believe that God has good plans for all of us and that he loves us all. it is crazy that you have to travel the country in search of relief. I know pain can be very tough financially and emotionally. Please take care of yourself. Are you familiar with Lisa Copen's site I hope you ccheck it out. It is very comforting. Hugs and prayers.

  2. I know how much pain I've been through in the last eleven years and still having pain from my hip problems; but I have a serious appreciation for you for still continuing onward. Also, I admire you for still having such a strong faith in the Lord through these hard times you're going through. I hope for the best, and I'm praying for you and your family.

  3. So sorry to hear about the disability denial! I hope you can find an attorney to help you. Don't let that doctor's opinion discourage you. Pretty much all of the state agency doctors write opinions that are not favorable to the applicant, and the majority of people are turned down initially. Praying that God will lead you to the right attorney.