One Month Post Op Update

Well my weekly post-op updates didn't quite go as planned, sorry about that! Thank you to those who have been praying (prayer requests at the end of this post).

Tomorrow I will be 5 weeks post-op. Recovery is slow as I knew it would be, and there have been lots of ups and downs. I just got back from 4 days (5 sessions) with my wonderful pelvic floor PT and hip PT out of town. I feel so much better when seeing them, but it is very disheartening to return home knowing that I will go another 4 weeks before I get the PT I need. I just feel like if I had access to consistent good therapy that I would be able to manage my pain much better, but apparently that is not God's plan for us right now. 

Here's a little recap of the last few weeks:

Day 16-21 post op: I experienced a big flare up in my pelvic floor pain/burning. I couldn't even sit for 5 minutes without being on fire! I feel like it was due to being too aggressive with my glute sets and bridges while trying to strengthen my hip. I backed off these exercises for a while and it finally calmed down some thankfully. This is frustrating though because I need to strengthen, but I know I am just going to have to be patient. At three weeks post op I went to see my hip PT out of town. I saw a major improvement in post-op hip related pain thanks to lots of manual therapy. My quad was really angry prior to seeing the PT. She didn't add any new exercises since I was still struggling with an increase in pelvic floor pain, and encouraged me to get in the warm water pool as much as possible.

Week 3-4 post op: I got a massage (right now I am trying to do bi-weekly massages) - this helps with all my overall muscle pain due to the dysfunction and compensation. I also went to the warm water pool 4 times this week without any real flare-up in pain. I tolerated my hip exercises much better in the water than I did on dry land.

Week 4-5 post op: I began to start taking steps around the house without my crutches or with just one crutch. My hip PT didn't really want me to use only one crutch due to fear of worsening my muscle compensation so she suggested I use a cane. I don't feel like the cane really helps that much so unless I am walking outside my house, or unless it is the end of the day, when I often begin to feel like I can't stand up on my own anymore, I've just been walking without an assistive device. I'm glad to be walking some again, but I am experiencing a good bit of muscle pain. A lot the muscles that support my pelvis are so tight they feel like bricks. The muscles that are the worst are my psoas, rectus abdominus, quadratus lumborum, and the erector spinae (which are more superficial - to the surface of the back - than the quadratus lumborum and psoas).

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I've had problems with these muscles for a long time now, but my psoas and rectus abdominus got so bad this past week that it felt difficult to stand up straight or even eat as my abdomen was so swollen/irritated. I'm not sure what exactly caused this, but I think that maybe I was overly aggressive trying to tighten my transverse abdominus (TA), to support my core, while trying to do my pool exercises.  Since I am very weak, due to years of dysfunction and worsened due to recent surgery, it is easy to recruit other muscles . My pelvic floor PT said that you only need to contract the TA to about 30% of maximum contraction. This is much easier for me to do lying down than standing up in a pool though!

I've also been having some significant knee pain. Getting down on the ground to play with my daughter is still difficult and the knee is also painful when walking. My hip PT gave me a SERF strap to borrow to see if it helps with the knee pain. So far it has I think, but I hope the knee pain will lessen once I build back some quad strength.


Praises:

• My circulation issues seem to be getting better. I still have some tingling in my foot and after standing for a long time occasionally my surgical side foot is more red than the other. I saw the surgeon for my 1  month follow-up and he and the PT are hopeful that with time and full-weightbearing this with go away. Although they have bought mentioned Complex Regional Pain Sydrome as a possibility. Continue to pray that this will resolve at least to my pre-op normal.

• My bandiad rash finally went away!!

• Praise God I have access to a warm water pool (for a price we can afford!) and that it provides reduced pain levels, even if for only a few minutes.

• Praise God I am regaining the ability to walk around the house more. Please pray that this continues and that the knee pain will go away as I gain more strength. 

Prayer Requests:

• That I will be able to get the muscular tightness and pain under control so I can continue to strengthen. The main goal of this surgery was to regain strength, please pray that in time I will be able to do this.

• Pray that God will provide a way for us to get good physical therapy more consistently. The only way we see this happening is if we move. My husband continues to look for jobs in larger cities where I would have access to the specific medical care I need. If it is not God's will for us to move, please pray that He will help me learn how to manage my pain with the resources I have locally.

• I continue to have some numbness on my upper and outer thigh either from surgery or from the nerve blocks I received in recovery. These areas are very sensitive if I rub up against them or try to lay on my left side. Pray this will decrease in time (sooner rather than later!).

• Pray that we would rejoice always that I have a living hope and a future in Jesus! This is a daily battle as chronic pain wages heavily on us.

I was reading in a devotional Jesus Calling by Sarah Young that a sweet new friend with chronic pain gave me. (I do not necessarily advocate for reading this devotional as I feel the author's take on "hearing from God" and writing in the first person as Jesus is a bit presumptuous, but as with any devotional book one must take the author's writing as just that - the author's writing. So if you read "Jesus Calling" take Mrs. Young's writings as a grain of salt and be sure the majority of your spiritual food is coming from God's true word - The Bible.) Today's reading was so very appropriate as I am tempted to worry about the future and how I will ever get my crazy tight muscles under control (and especially without good PT!). Here is a portion of today's reading:

I am your Strength and Shield. I plan out each day and have it ready for you, long before you arise from bed. I also provide the strength you need each step of the way. Instead of assessing your energy level and wondering about what's on the road ahead, concentrate on staying in touch with Me.... Refuse to waste energy worrying, and you will have strength to spare. (Psalm 28:7, Matthew 6:34, Psalm 56:3-4) 

Green Light With Infusions Tomorrow!

Just wanted to update about my previous post. As of now, I will be proceeding with my infusions as scheduled tomorrow, Tuesday, and Wednesday morning. My GI issues are still there though a tad better I think (maybe) since doubling up on my priolsec (per a GI nurse practitioner's advice), modifying my diet, and taking antacids - though I still feel like this is atypical, if it is reflux. If another week on the prilosec doesn't settle things down I'll be trying to get a referral to a GI doc - yet another specialist to add to my list, ugh!  After speaking with the GI nurse practitioner and my pain doctor and getting the "all clear" I decided to proceed with the infusions.

• Please pray that the infusions will not cause nausea/vomiting or hallucinations - the two biggest side effects of the medications.
• Pray that I will tolerate the medications ok so I can get the full 3 days worth and ultimately that I will get even just a little pain relief!
• Pray that this infusion will help us gain wisdom as we seek to understand how much of my pain is being driven by the central nervous system so we can better know how to proceed with other diagnoses like my labral hip tears.
• Pray that the insurance company will cover the cost of the infusions - we still are not sure what they will pay as one of the medications is often considered "experimental".

Thanks for praying. I really don't know what to expect over the next few days, but I know the One who holds the future, and I rest knowing my times are in His hands.

New Cause of Pain after 4 Years: My Hips?

Sorry I've been a little more quiet lately. This past week I've been struggling with a stomach virus that's been lingering leaving nausea and stomach cramping as my companion. Actually, I'm not sure if it is related to the virus, or the fact that I've had to increase some medication due to burning in my legs which is relatively new. I've been struggling to use the computer for long periods to type because I have to lie down and I cannot stand the laptop on my legs. Lying down is the only way I usually get any relief of my pelvic pain, but now even that has become painful as it hurts when my legs touch each other while lying on my side and I cannot lie on my back (due to my sacral pain). It's been a discouraging week to say the least.

I've been struggling with burning in my groin and upper quadriceps off and on ever since I tried the intense alternative treatment back in May, but this burning throughout my legs and pain when lying down is pretty debilitating. It could be due to muscle tightness caused by compensation from all my pelvic dysfunction, but I feel like it's probably due to central sensitization (this is a link to a short video clip explaining what happens in central sensitization) unfortunately as pain medication doesn't even touch the pain. Next month I am going to try some drug infusions to hopefully help calm down my central nervous system and get the pain under better control.

Please pray that my insurance company will pay for these infusions. My doctor has submitted a letter of medical necessity and I am waiting to hear back from them. Please pray that the infusions will work to help manage my pain better and the side effects will be tolerable. If it does help, this is something I can do on a regular basis to manage my pain. Praise God I found a local pain doctor willing to try this!

Thankfully my doctor is willing to give us a "deal" (though still not cheap) so we feel like we need to go ahead and try the infusions as my pain is just becoming worse and worse. We will battle the insurance company after the infusions if we have to. I am concerned because the dosage this doctor is planning to give me is small and the infusions will only be for 3 days (2 hours each day) so this may not be enough to tell if the medications will help me. But it is the best option I have at this point without traveling across the country to a specialist who deals specifically with this type of pain syndrome.

Three weeks ago we visited a hip specialist and I had an MRI of my left hip (where most of my pelvic floor/sacral pain is). Interestingly they found some damage to my hip - a labral tear and ischiofemoral impingement. I was surprised to say the least, after 4 years of going to doctors and never finding anything concrete on scans. What does this mean? Was this the actual cause of my pain to begin with? I don't know, but it's possible. There is a study (read abstract on page 29 of 32) being done out of New York that suggests a correlation between labral hip tears and pelvic floor pain. However, my case is complicated due to the central sensitization and while arthroscopic surgery can be done to correct the labral tear it is possible that even with surgery my pain could become worse if my central nervous system is driving the pain. It's also important to know the cause of the labral tear, which mine seems to be congenital according to the specialist, but I also have a degree of hypermobility in my joints and this could also lead to a poor surgical outcome. I plan to look into this more in the coming months as well.

I did have a hip injection that relieved my hip pain (which is minimal honestly compared to everything else) for several hours. (I have wondered a little if the hip injection is what set off the burning in my legs, but the injection was only in one hip and my pain is bilateral and the burning didn't start until about 3 days after the injection - but then again anything is possible with central sensitization it seems!) I feel like it is possible that the hip damage has caused all the muscle dysfunction and nerve irritation/pudendal neuralgia in my pelvis and that if the hip was repaired and I had consistent good physical therapy (which is a problem where I live) then over time some of the other pelvic pain might resolve. Of course until I get some of the burning in my legs calmed down I do not know if I feel comfortable pursuing a surgery.

We are traveling this week to see the hip specialist again and I will be getting an MRI of my right hip (I actually have more true hip pain in my right hip) as the specialist thinks I have a labral tear in my right hip as well. I have a lot of questions to ask her and will see their PT as well as my pelvic floor PT. Pray that God will give us wisdom as we seek answers to these questions.

We continue to need prayer that our hope would be in God, especially  for me in these hard days, and that I would call out to Him for grace to sustain me in my physical weakness. And most importantly that we would truly trust Him.

And of course we covet your prayers for healing and if not healing then better days and a better understanding of what is causing my pain and the ability to get treatment to help me.

Recently a Facebook "fan" recommended a sermon to me by Pastor Timothy Keller entitled "Questions of Suffering" that is very convicting. He talks about the "Why?" question of suffering saying that we must:

• Avoid the pat answers of "why do we suffer"
• Embrace living without an answer to "why am I suffering"
• Anticipate the final answer

Listen to it here and be encouraged!

To Take Pain Meds or Not?

That is the question for many of us suffering with chronic pain, isn't it?  I went to see a new pain doctor last Thursday. Surprisingly I made the 5 hour round trip in one day without too much flare up, although today I am feeling the effects of the trip and a busier weekend than normal for me. 

So I told my story again to this new doctor. Every doctor has their opinions which is always interesting. She thinks a spinal cord stimulator, as suggested by my previous pain doctor, is not a good idea. I am young and it is likely that within 5 years my brain will find a way to work around the stimulator, which "tricks" your brain instead of feeling pain you feel a tingling sensation. She also thinks pudendal nerve decompression surgery is not a good idea - what pain doctor does really recommend surgery? They see hundreds of failed surgeries every year. She really thinks since my debilitating pain began after aggressive sacroiliac joint  manipulations that maybe I can get some relief with the correct type of manipulation to get my pelvis back in alignment. This was encouraging since in 2 weeks we travel to Gainesville, GA to see one of the nation's best PTs in hopes that I will be able to avoid surgery and that the proper alignment will get my pain to a more tolerable level. I am of course doubtful however because the pain has gone on for so long now and I have already seen 6 PTs who were unsuccessful in fixing my pain.

This new pain doctor prescribed a new pain medication for me Nucynta  (don't tell me all your bad experiences with this drug!). I was previously trying to manage my pain with Neurontin, Baclofen, and various other pain medications on an as needed basis. This doctor thinks I should take Nucynta twice a day and in between as needed to try to get my pain under control. She thinks it is better to take medication and be up doing things than to not and lay around on the couch. I'd like to think she is right, but if my root cause of pain is nerve entrapment or SI joint dysfunction then the pain medication will only mask the pain and I will do things (such as sitting, bending, twisting, etc) that will really make the root of the pain worse. The other problem with this medication is that it is brand new so it will cost us around $76 a month. Thankfully for the first three months we found a prescription saving card making it only $25.

This medication is supposed to have the effectiveness of some of the more powerful narcotics with more tolerable side effects. As with any opioid drug there is the potential for needing more and more of the medication to get the same desirable effect over time because our body builds up resistance. The way the spinal cord and brain perceive pain is a mysterious thing. While the nurse in me knows there is a root cause of my pain (likely sacroiliac joint dysfunction and pudendal nerve entrapment) I have to get over my preconceived notions about pain medications because the pain itself has become a problem. Pain in the Mom, a fellow pudendal neuralgia/chronic pain sufferer, wrote an interesting post here about how pain is often the problem.

So I am going to take the medicine as long as I can tolerate the side effects. I can't worry about building up a tolerance or making my root problem worse right now. I have to try my best to get the pain under control because in reality the pain is controlling my life. I will continue to work at fixing the root of the pain, but until that day comes (whether it be here or in heaven) I have to to try to live each day as best I can. If pain medication helps I'll take it (unfortunately so far the nucynta has done very little for my pain, even the most powerful narcotics often do not help nerve pain). Worrying about things that may or may not happen in the future, like tolerance, withdrawal, or even tomorrow, do not make the problem any better. Today, this moment, is all we are promised and it has enough trouble of it's own (Matthew 6:34).

All in a day

Well, my blood test results are back.  I checked them when I was at work yesterday (I praise God that I was able to work another 12 hour shift) and some of them are not normal.  Now I am waiting for the doctor to call me back and advise me on what to do next.  I am trying not to jump to conclusions after knowing  my blood work, but it's hard for me not to read everything on the internet and "diagnose" myself.  I always wanted to be a doctor :) I am praying by the end of the week we will have a call back from the doctor.

My headaches and neck/shoulder tightness have been a little better the past couple of days. Maybe the massage, or should I say "beating" helped.  The massage therapist was a little rough (in more ways than one) and I was sore for a couple of days after.  I probably won't go back to her. Massage is expensive, but if it helps me keep these headaches at bay it may be worth it.  I'm just so grateful for a little reprieve from the headaches I've had for almost 2 weeks.

Today I have done too much already.  I got woken up by hubby's alarm at 5:45am and was soon joined by my daughter who was up around 6:30am (a half an hour earlier than her normal wake up time).  After breakfast I started on the laundry, picked up around the house, got out some fall decorations, and swept  the kitchen floor. Soon it was time for my daughter's morning nap which is when I should rest, but instead I got supper cooking in the crock-pot, called the lab to make sure they faxed my results to the doctor, did my Physical therapy exercises, and took a shower. After lunch we took some of my daughter's old clothes to a consignment store to try and sell, played outside with our dog, and folded some laundry. To many of you this seems like a typical day, but for me I can tell I have probably pushed it a little too far (as my headache starts to creep back).  That's one of the hardest things for me in dealing with chronic pain/illness--not being able to do things I used to do everyday without even thinking about it and most days without ever thanking God for the ability to do those things.  And I think this is part of what God is trying to teach me through this time of suffering....that  I need Him more than I ever thought possible, and I need to get rid of my pride just as much as I ever have.