Month 5

A lot has happened since my last posting.  I had my 6th Sympathetic Nerve Block on 6/28/13, and my final one two weeks later on 7/12/13.  At that time, Dr. NP said that because I was doing so well, that we would discontinue the Nerve Blocks.  He stated that he would like me to come in sometime during October, before the weather gets too cold, to get 2 more Nerve Block injections.  I seem to be doing really well still since my last injection.  I get the occasional "lightning bolt" feeling in my foot, but I do not believe that is the CRPS.  I am pretty sure that it is just my nerve rejuvenating itself.  But, I have been on high alert and have really been crossing my fingers that my CRPS went into remission.  I feel like I'm the luckiest girl in the world if it did!  I've seen several blogs of people living with this condition for years.  I thank God that he took away my pain and led me to such an awesome pain doctor!  

I had a my 14.5 week Post-Surgery check-up and x-rays on 7/8/13 with Dr. JS.  He stated that the placement of my right hip was still in the same position as surgery.  He could tell that I was strict with my non-weight bearing (due to the way the bones looked, I guess).  He then noticed on the x-rays that there was a fracture in my hip that seemed to be healing.  He looked back to my last appointment (5/23/13) and noticed that it was already fractured then.  We thought back and remembered that I slipped in the kitchen on 5/14/13.  At that that time I sent an email to Dr. JS's nurse . . . . 

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From: XXXXX

Sent: Tuesday, May 14, 2013 11:28 AM

To: Sarah

Subject: Fell down

Hey XXXX- 

I was just in the kitchen and I slipped on our floor and fell to the ground pretty hard.  I tried to grab the counter but my hand slipped off of it.  It doesn't really hurt at the moment, just a tad sore especially in the pelvic area.  I'm concerned that I could have messed up my surgery!  I wasn't sure how I'd stand from the floor without bearing weight.  But, I was able to scoot to the dining room, slide a chair to the wall and push myself up.  Let me if I need to do anything.  

Sarah

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From: XXXX

To: Sarah 

Subject: RE: Fell down

Date: Tue 5/14/13 11:55 AM

Hi Sarah,

I hope you are doing ok after your fall!  When I saw the title of your email my heart dropped.  What you have described is something that we are not immediately concerned about, and doesn’t, at this time, require you to come to the ER or get emergency X-rays.  Fortunately, you are over 6 weeks out from the surgery, and your bones are healing.  I would expect some discomfort and some swelling and/or bruising from the fall, but if you start to experience marked increase in hip pain, please let me know asap.  We see you on 05/23/2013 @0800 for X-rays and clinic visit, which we are looking forward to.

We really hope everything else is going well for you & keep me updated.

XXXX

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So, I never went in to check if I broke anything due to their recommendation.  And for some reason it was missed at the follow up appointment on the 23rd. I am just grateful that everything seemed to be healing very well, along with the broken Pelvic Bone.  

On 7/9/13, I had an electromyogram (EMG).  This test measures the electrical activity of muscles at rest and during contraction.  They basically stuck an electrode needle into several areas up and down my leg.  They then did a Nerve Conduction Study with Electrode pads to determine if I had an nerve activity.  The test took about 2 hours, but was worth it in the end because they told me that my nerve is healing itself and verified that it was stretched during surgery.   He told me that my Drop Foot would not be permanent, and I should expect it to come back within 6 months or soon (December 2013).  I was so excited, it was exactly what I wanted to hear!

Throughout the month of July and now August, I am still doing wonderful!  I still have Physical Therapy three days a week.  I started going to Aquatic Therapy, per Dr. NP's recommendation, about 2.5 weeks ago.  I feel as though I have better form in the water, but I noticed that my muscle strength is starting decrease.  So, instead of 3 days in the water, we are going to do 1 day in the water and 2 on the land.  I may also just talk to them about transferring completely back to land PT, as I felt like it was more beneficial for my Foot Drop.

Overall, I am feeling happier everyday and am so thankful for the life I have been given!  Our family has grown even closer together through all these tough times, and has made us appreciate our lives so much more.

Week 13

It's been about a month since my last posting.  Since then, I've doing really well.  My hip is continuing to feel really good!  I've stopped having my "At Home Physical Therapist" and started "Out Patient Physical Therapy" about three weeks ago.  My team of physical therapists have really helped improve my strength by building my muscles back up.  I usually start by warming up on the bike for 10 minutes and then they kick my butt with table exercises & weights!

I've been full bearing now for the past two weeks, but I still need a crutch at times for stability with my Drop Foot, especially after PT!  My Drop Foot doesn't seem to be improving like I thought it would when I started Out-Patient PT.  My first day they measured my foot while i was trying to lift it at -39 degrees, which is way off from the normal +10 to +20 degrees.  Last week Friday (06/21/13), they measured it again at -39 degrees.  I was bummed out!  I just want to be able to lift my foot normally!  It's so frustrating that I can't walk normally or drive!  No one knows how long it will take for my foot to start working again, but I am trying everything to get it back.

Last week Friday (06/21/13), was my 5th Sympathetic Nerve Block Injection for Chronic Regional Pain Syndrome (CRPS).  The blocks have been working wonders for me!  I am off of all Nerve Pain medication and have been just strictly getting the Nerve Blocks.  On my last posting, I stated that Dr. NP took me off Gabapentin and started me on Topamax instead.  I had almost every side effect possible - memory loss, numbness and tingling in my hands and feet, fatigue, weight loss, breakouts, etc.  Even though I liked the weight loss part of it, everything else wasn't so great!  After being on it for two weeks, I ended up in the ER (05/28/13).  It made me so severely sick that I became extremely dehydrated.  Dr. NP then took me off the Topamax.  He told me that we could restart the Gabapentin if I wanted.  But, I was still really sick for about a week and had no appetite.  By the time the Topamax was out of my system, I never felt better.  My foot seemed to be nearly pain-free!  So, I didn't contact him for the prescription for the Gabapentin. When I was in last week for the 5th Nerve Block, Dr. NP was so happy with my progress!  I still have to get the Nerve Blocks to stay on top of the CRPS, in hopes that it will go into remission!  I am getting my 6th one tomorrow and I just keep hoping and praying that the pain continues to stay away!  I am just so happy to be off all of the medications and starting to go in the right direction!  Now if only my foot would decide to make a come around, I'd be one happy camper! ;-)

Week 8 and Pain Clinic Appointments

Week 8 Follow-up:

Yesterday was my Eight Week Follow-up with Dr. JS and his nurse.  I had X-rays taken immediately when I arrived and then was taken into his office.  We reviewed the X-rays and his was really happy with the placement.  He said it looked like everything had stayed in place and the bones were healing wonderfully!  I was so happy to hear some great news!!!  I also was able to take off my Compression Stockings, finally!  I hated them even though I just had to wear them during the day. 

Dr. JS told me that he looked through all the literature for the PAO surgery and he didn't find anywhere that anyone has ever developed CRPS after surgery.  He asked if I would mind being part of the research and I, of course, agreed.  My case included most of the rare risks (nerve damage, drop foot, CRPS) but, there is a risk having any surgery.  You just always have to hope the risks don't happen to you!  I've been trying really hard to stay positive through all of this, which honestly hasn't been easy at all!  I am so thankful to have such a great support system!  Dr. JS nurse has gotten and responded to all my crazy emails/phone calls, with compassion and "want" to help.  My husband has been at my side through all my dark moments of extreme pain and he has kept me level headed.  He has taken over most of my daily duties and our boys.  I really couldn't ask for a better husband!  My family and my friends, who have helped with a few meals or a drive to and/or from the doctor.  I thank everyone who has helped me get through all of this.  I just want everyone to know even though I still have a long road ahead.

Dr. JS will have me continue Physical Therapy for at least another 6-8 weeks , 3 days a week, to work on my Drop Foot and Hip.  My foot is still very week, so we need to continue to strengthen it.  Then, we can discuss when I can start driving again!   

All in all, I had a great appointment and couldn't be happier!  :-)

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Pain Clinic Appointment:

Today, I had my 2nd - Lumbar Sympathetic Nerve Block.  I got to speak with Dr. NP before my injection to ask him a few questions and he wanted to know how I was feeling compared to last week.  I told him that Desensitization has decreased and I've been able to handle warm/cold wash cloths on my foot, cotton ball rubbing it, putting a sock on, etc.  I told him that my pain was still extreme, especially at night.  He decided that he was going to wean me off of Gabapentin and start me on a new nerve pill.  I can't remember what it's called at the moment, but I will update when I do.  We are also going to try some patches for my foot instead of the Lidocaine Cream he gave me (which didn't seem to work).  

After we went over all the questions, I was wheeled into the OR.  put on the operating table, face down, and was prepped for the injection.  Dr. NP came in and had a Resident observe him to learn.  The injection still hurt,  but not as bad as last week.  It only lasts about 5 - 10 minutes and it's done.  I felt the effects of the injection this time more than last.  It took away a lot of the pain, woohoo!  I am just really hoping it stays that way.  I am still having some pain, on a scale 1 - 10, I am at a 4.  I am crossing my fingers for continued pain relief!  

Lumbar Sympathetic Nerve Block

Nerve Issue/CRPS:

Friday:

I had the "lumbar sympathetic nerve block" to treat the CRPS and that afternoon, evening and night were probably the worst yet!  I was in so much pain that I could not tolerate it! I kept thinking, "why did I get this injection, it's making me worse?!"

Saturday:

We were having a little get-together with my family to celebrate my youngest son's 1st Birthday.  On Friday, I wasn't sure if I could handle having everyone over with the pain I was in.  However, when I woke up on Saturday, I was still in pain, but it was my normal pain and not worse.  On Saturday night, I was in extreme pain again and I was still thinking, "why did I get this injection, it's making me worse?!"

Sunday:

My pain was a lot less during the day.  I could start to tolerate kicking my leg out, a cotton ball rubbing against my foot, hot and cold washcloths resting on it, reclining in my chair, touching my foot, etc.  It's still painful and very hard for me to do, but not nearly as bad as it was a few days prior.  It seems so silly that even a cotton ball rubbing my foot brought me to tears, but it's true.  I am so extremely thankful that Dr. JS and his nurse referred me to the Pain Management Clinic as soon as they did!  Even though CRPS (Complex Regional Pain Syndrome) is not curable, but when treated early on, it is more likely to go into remission.  That is the goal and my pain management doctor is very hopeful!  

Monday:

I had little pain throughout the day, but the night is still horrible!  Not as bad as Friday night, but still very painful and it always brings me to tears.  I also can't even fall asleep if I don't have a sleeping aid.  During Physical Therapy today, I was able to do more exercises as I was not in extreme pain to complete them, woohoo!  

Tuesday:

I am still having slight pain, and by slight pain I mean it still hurts me 24/7, but I am starting to get use to it.  I still have moments where it will bring me to tears during the day.  But, I think that Lumbar Sympathetic Nerve Block is working, but not taking away all of the pain.  Hopefully, with more injections it will start to take away more pain . . . and SOON!!! 

Intolerable Pain

Just to let everyone know, my hip is healing great!  I have little to no pain!  I am going to see Dr. JS on Thursday for X-Rays and a Clinic Visit.  Then, I will hopefully be able to start putting a little weight on the leg.  We'll see!  :-)

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Now a little complaining about my <Nerve Issue>:

First, I get diagnosed with a rare form of Severe Hip Dyplasia, and now I am living in the utmost intolerable pain in my foot caused by a stretched nerve (less than a 1% chance of getting), and that turned into CRPS (1 in 4000 people).  I want to crawl in a hole from the pain, please God help!  

I really need all your prayers everyone! The lumbar nerve block that I got Friday, seems to help during the day, but the nights have gotten 10X worse.

Pain Management Clinic Visit

I went to the pain clinic today to find some answers and relief for my extreme pain in my right foot.  I saw Dr. NP with Froedtert Medical College - Pain Management Clinic, who was really knowledgeable and funny.  He really made my visit less stressful.  He did an exam and noticed that my right leg would turn blue when I stood.  I thought it was, but whenever I asked anyone, they always told me it was just swollen.  He actually had a Resident come in to look at my leg as a learning tool to this condition.  After the exam he diagnosed me with "Complex Regional Pain Syndrome" - CRPS, which is a serious malfunction of the nervous system.  The main effect of the disorder is that the nerve endings in the area that are affected are constantly experiencing severe pain even though there is nothing physically causing the pain.  He wanted to start treatment immediately as he knew how painful this is.  They were able to squeeze me in and gave me the 1st of 4 "Lumbar Sympathetic Nerve Block" injections.  He was really happy that I came sooner than later as its better to treat this condition early on.

I had the Nerve-Block injection with no sedation as I figured the pain in my foot was probably worse than the pain of the injection.  The injection did hurt mainly in my rear as he was injecting it.  Immediately afterwards there was no pain in the injection sight.  As the night is going on though, the injection sight and my rear have become very tender and painful.  I did however have a pretty big headache afterwards, but it seemed to wear off within about 5 minutes.  My foot also became very hot and has continued to last, but Dr. NP said that was a good sign that the blood vessels were opening up.  I am very hopeful for some pain relief even though I haven't had any yet.

Week 6

This past week has been fun, ok not really!  Monday, I had the Blood Clot concern from my Physical Therapist as I wrote in my previous post.

(Nerve Issue):

Wednesday:  My husband took me to the Emergency Room as he couldn't handle seeing me in as much pain as I have been in.  He, and myself in that matter, were hoping that another doctor could find a solution to help relieve my nerve pain in my foot.  All they did was give me a shot in my arm of Dilaudid (pain med).  I told them that regular pain medications don't work, so it will probably be a waste of everyone's time.  I was right, it didn't even touch the pain a little bit.  So, they sent me on my way home because unfortunately they couldn't do anything else.  

At the same time as we were at the ER, Dr. JS's nurse sent me an email as we've been emailing back and forth in regards to my high nerve pain level.  She stated that she sent a referral for me to see a Pain Specialist.  I've been praying for relief, so her email was about a half hour too late, but an answer to my prayers!

On Thursday, I called the Pain Specialist and left a message to make an appointment.  No one called back so I called again on Friday and the first available appointment was in two weeks!  I asked if I could be put on a waiting/cancellation list because my pain is so unbearable, I needed to see someone like yesterday!  About an hour later, I received a call back stating that they could get me in next week Friday.  I took it!  One week is a really long time when you're in pain 24/7, but I'm willing to wait!

On a positive note - I've been getting about 3-4 hours of sleep straight at night the past few days (then I'll be up for about 1-2 hours and can usually fall asleep another 1-2 hours).  Rather than the 1-2 hours straight, then 1-2 hours awake, then 1-2 hours of sleep.  I got a Sleeping-Aid from my Primary Care Physician on Wednesday, so I think that is really helping, even if it's just a couple extra hours!  :-)