Sunday, March 25, 2012

An Update

Tomorrow will be 7 weeks since I traveled to see the sacroiliac joint dysfunction (SIJD) physical therapist expert. You can read more about that experience here. I have been doing correction techniques several times a day to get my hypermobile SI joint back in alignment, taping (you can see a video here of the taping technique I use) or wearing an SI belt, and doing core strengthening and stretches exercises.

At about week 3 I had to back off of the exercises some because it was causing some increase in pain. But overall my pain has been more tolerable these last 6 weeks than since before my botox injections. I have had less tightness in my back, neck, and legs (allowing me to stand for a little longer). I do not know if this is because of the PT, the fact that I've been taking a low dose of Flexeril (muscle relaxer) at night to help with sleep (getting a good night of sleep usually helps me to have less overall muscle pain), if it just took 6 months for the botox to wear off completely, or if God is just slowly answer my prayers for a better quality of life. I am still worse than I was before the August botox treatment, but I am grateful to God for the improvement I have experienced.

My SI joint does not stay in alignment very long due to my lax ligaments and the pelvic floor pain/pudendal neuralgia. Unfortunately I have not seen any improvement in my ability to sit so I do not think the "6 week protocol" the PT put me on is going to reduce my pain enough to allow me to function more normally.  So what's the next step?

In May I'm scheduled to have an MRI in New York City (one good thing about this condition is it requires us to travel -which we love!) that will look at the pudendal and other pelvic nerves. This radiologist is internationally renown as the best at looking for pelvic nerve entrapment. I have some doubts about the accuracy of the findings because there has not been any controlled studies performed, thanks to the rarity of this condition. But I have been waiting for this appointment for several months and if nothing else, an MRI that says I have pudendal nerve entrapment (whether it is completely accurate or not) may help my disability case if I continue to be unable to work. As of now I have nothing to "prove" my pain exists other than my response to nerve blocks. Of course the MRI could be "normal" and I could still have PN or something else unknown.

Over the last month or so I have decided that, as it currently stands, the pudendal decompression surgery is not a good option for me. I have widespread pain (likely caused by central nervous system sensitization) and a complicated case involving the "chicken or the egg" scenario between SIJD and PN, so I'm afraid that surgery will only add more complication to my case. I've been doing a lot of research, thinking, and praying and am leaning towards trying some alternative treatments for my pain. The only problem with alternative treatment is - it is not covered by insurance. The treatment we are currently planning to pursue will be done out of the country, is very painful, and will eat through our savings quickly. If the treatment doesn't work we will not be able to try anything else until my husband gets a better paying job (which could be 16 months or even longer) . So this treatment is a huge commitment and sacrifice, but I actually feel at peace about it, more so than any of our other options.

Prayer Requests:
  • We received an anonymous gift of $300 last week (Praise God!) and now we know why. It looks like my husband will have to have a tooth crown replaced. God always provides! But pray with us that maybe something can be done to fix the current crown so we can use that money towards my medical bills.
  • Pray that God would open up doors for a better paying job for my husband or that God would provide for us until He chooses to give my husband a different job.
  • Pray that God would continue to guide us as we seek answers to my pain and how to treat it. If I am not supposed to get this treatment out of country, pray that God would not let us "waste" our money.
  • Pray that God would continue to give me better days, and that I would be diligent to do all I can to regain strength and a better quality of life.
  • Above all else -pray that we would trust God and seek Him first!
Thanks for caring and praying! As always, send me an email and let me know how I can be praying for you.

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