X-Ray of PAO Hip Reconstruction and Hip Dyplasia

  X-Ray of PAO Hip Reconstruction and Hip Dyplasia

X-Rays from the day of my surgery, 03/29/2013 (over 1 year ago).  Never posted it to my blog!  Here's a before, and kind of after.  The screws aren't in place yet, but that is the exact placement they did.  I now have a total of 3 screws holding the placement.  According to the CT scan that I had on Wednesday, everything looks good.  The reconstruction is still in place and healing well.  However, because I had such a big correction there will be a part of my bone that will not grow back together (non-union). They said that it should be ok, and doesn't need extra surgery at this time.  The fracture I got last year seems to be calcifying and healing as well.   

CRPS Diagnosis and Summary

My story started when I was diagnosed with Bilateral Congenital Hip Dysplasia that required a hip reconstruction surgery (Periacetabular Osteotomy - PAO), which resulted in CRPS and Drop Foot.  The first sign of CRPS was ten days after surgery, when I woke up in the middle of the night to the feeling of my right foot being on fire.  As the days went on the symptoms I was experiencing increased and became intensified:  My foot felt like lightning bolts were hitting it, someone was stabbing it, it was getting poked with a thousand needles, it was getting strangled, like I was walking on hot coals, etc.  I would also be in excruciating pain if someone would simply brush their hand across my foot, a slight breeze would hit it, putting on/taking off my socks or hot/cold water touching it.  I started to struggle with day-to-day activities such as: sitting, standing, walking, etc.  I couldn't even sleep in my bed anymore because it hurt to lay down.  EVERYTHING hurt at that moment!  Overall, the pain just kept getting worse and I was barely getting any sleep.  I needed to find some answers and relief for the extreme amount of pain I was experiencing!  Finally, my surgeon and his nurse referred me to: Advanced Pain Management (APM) - MCW Wauwatosa location to see Dr. Nileshkumar Patel.

My first impression of Dr. Patel was that he was very knowledgable and funny, especially since I was so down the first time he met me.  He cheered me up and made me laugh!  He did my initial exam and noticed that my right leg would turn a blue/purplish color when I stood.  He actually had a Resident come in to look at my leg as a learning tool.  After the exam he diagnosed me with "Complex Regional Pain Syndrome" - CRPS, which is a serious malfunction of the nervous system.  I never heard of CRPS before my first visit with Dr. Patel, so I had absolutely no idea what he was talking about.  But, I trusted him!  He stated that day, that CRPS is more likely to go into remission if treated early, so he recommend that I get a Sympathetic Nerve Block Injection immediately.  APM and Dr. Patel were able to squeeze me in and give me the first of several injections.  Sedation is optional, but I never got it with all of the Nerve Blocks that I received, as I figured the pain in my foot was probably worse than the pain of the injections.  You basically feel pressure while getting the injection, but it only lasts a minute or so and quickly goes away when the injection is finished.  Kari (APM Nurse) has held my hand for every injection I've received and has made getting the injections a more positive experience.  After each injection, my right foot feels warm for several hours.  During my first appointment, Dr. Patel stated that the warmth was a good sign that the blood vessels were opening up.  I now look forward to the warmth, as my right foot is usually colder than my left since getting CRPS.

It took several injections until I started to finally get some relief from the pain.  The first 2 injections didn't do anything, or so I thought.  But, as I got the 3rd, 4th, 5th and so on and so forth, I started to finally experience relief.  I was able to play with my kids again, I could sleep, take hot/cold showers, putting on/taking off socks (without flinching), etc.  I felt like I was getting my life back again!  The CRPS pain was so bad for a while there that I didn't know how I was going to be able to live my life.  Many people that suffer from CRPS are addicted to pain medications.  I am very proud to say that Dr. Patel respected my wishes to not use any pain medication.  I wanted to fight this battle without it, and I have.  At first, I thought it was something that didn't need to be said in my blog, but the more I hear about people that suffer from CRPS, the more I hear about the many pain medications they're taking.  I want those people to know that I changed my state of mind, and they can too! I knew I would get better with the nerve block injections, physical therapy and positive attitude!  I thank Dr. Patel everyday for giving me my life back.  It means everything to me, especially with two toddlers at home!  Thank you, Dr. Patel, for believing in me all along.  You truly are an inspiration and are making a huge difference in this world!

One Year Post-Surgery

I was officially discharged from ATI Physical Therapy on (3/14/14).  Facebook Status Update: ("Sarah Viglione - My last day! — at Ati Physical Therapy."). The staff at ATI Physical Therapy was friendly during my entire therapy process - which was over 125 visits total (I lost count since I started going there in June 2013).  I appreciate all of their guidance throughout my recovery process.  And, even though my Foot Drop still isn't completely recovered (measured -4 degrees at discharge), they gave me all the tools and knowledge to continue therapy on my own.  I am confident that I will do just fine!  Mike and I also went out and bought a Stationary Bike (a few nights ago) to assist in my recovery process since I am no longer in Physical Therapy.  

Two weeks ago (3/20/14), I met with Dr. Patel for another Sympathetic Nerve Block Injection to treat my CRPS. As always, he gave me a hug to greet me!  Since I've been doing so well and haven't seen Dr. Patel since December, he pulled up a chair and took a seat to have a chat to see how I've been doing.  We discussed our treatment options going forward in regards to the (still slight) CRPS pain in my right foot.  We decided to go forward with the Sympathetic Nerve Block Injection that morning, and again the following week (3/27/14).  Then, this week Thursday (4/3/14), we're going to try an Epidural Injection, something completely new for me! So far, I haven't noticed any pain change with the two Nerve Block injections this time around, which I typically do.  However, my pain isn't very severe, just more bothersome at this point more than anything, a dull aching pain.  Every now and then I will get a stabbing pain that will last just a few moments, and then will go away.  I'm hoping the Epidural Injection will work well for me on Thursday!

Today, was my -- One Year Post Surgery -- appointment and X-rays.  It went fairly well.  I was hoping to get my Left Hip Reconstruction (PAO) scheduled within the next month or two; however, according to the X-rays it will not be possible at this time.  Dr. JS is sending me in to have a CT scan done on my right hip as it looks like it has not healed in some of the spots all of the way (including where my pelvic bone broke), and he wants to determine the next steps. I'm bummed as I can't have my left side done yet, but I really don't want to ruin all the progress I've made on the right side.  So, we made an appointment for Wednesday to have the CT scan, and all I can do is cross my fingers and hope for the best!

Facebook Status Updates

February 10, 14 @ 9:04am Sarah Viglione was at Froedtert & The Medical College of Wisconsin	My second - EMG - to check out my nerve activity, not looking forward to being zapped for the next couple hours. — at Froedtert & The Medical College of Wisconsin.
February 3, 14 @ 10:24am Sarah Viglione was at Ati Physical Therapy.	My foot is measuring at 0 degrees today! Another 10-20 degrees to go!!!! — at Ati Physical Therapy.
January 15, 14 @ 8:50am Sarah Viglione was at Ati Physical Therapy.	(Check-in)
January 3, 14 @ 1:11pm Sarah Viglione was at Ati Physical Therapy.	Got to take Matthew to PT with me today! – at Ati Physical Therapy
December 18, 13 @ 10:25am Sarah Viglione was at Ati Physical Therapy.	Woohoooooo -5 today! That's right my foot raised to -5 degrees!!! Only about another 20 degrees to go!!!!!! — at Ati Physical Therapy.
Decemeber 11, 13 @ 10:18am Sarah Viglione was at Ati Physical Therapy.	My foot started to tingle with the electrodes on today! First time ever, and we've been doing this 3X/week since June. They said it's a great sign!!!!!! :-D — at Ati Physical Therapy.
December 9, 13 @ 8:53am Sarah Viglione was at Ati Physical Therapy.	Working my Foot Drop!!! — at Ati Physical Therapy.
December 6, 13 @ 11:08am Sarah Viglione was at MCW Pain Centers of Wisconsin Wauwatosa.	Another Sympathetic Nerve Block Injection .... this cold weather can go away now so it can stop flaring up my CRPS pain! — at MCW Pain Centers of Wisconsin Wauwatosa.
November 8, 13 @ 9:53am Sarah Viglione was at MCW Pain Centers of Wisconsin Wauwatosa.	Lumbar Sympathetic Nerve Block — at MCW Pain Centers of Wisconsin Wauwatosa.
November 12, 13 @ 9:12pm Sarah Viglione updated her status.	Need really good, warm boots for the winter as the CRPS is acting up again in the cold weather..... any recommendations, please?
October 23, 13 @ 1:09pm Sarah Viglione was at Ati Physical Therapy.	(Check-in)
October 14, 13 @ 2:26pm Sarah Viglione was at Children's Hospital of Wisconsin.	At Hanger again, getting my AFO refitted! Bruises and blisters stink! — at Children's Hospital of Wisconsin.
October 4, 13 @ 8:27am Sarah Viglione was at MCW Pain Centers of Wisconsin Wauwatosa.	Nerve Block before the cold winter hits to keep the CRPS in remission! — at MCW Pain Centers of Wisconsin Wauwatosa.
September 16, 13 @ 10:41am Sarah Viglione updated her status.	I raised my foot to -10 degrees today!
September, 13 @ 1:13pm Sarah Viglione was at Ati Physical Therapy.	I've been back to the West Allis ATI location for one week and my foot is already raising back to -16 degrees. I love the progress I'm seeing again! — at Ati Physical Therapy.
July 17, 13 @ 12:16pm Sarah Viglione was at Ati Physical Therapy.	I can lift my foot to -18°, better than the -39° when I started!!! :-) — at Ati Physical Therapy.
July 15, 13 @ 10:45am Sarah Viglione was at Ati Physical Therapy.	Another week of physical therapy! Hoping to start water therapy this week! :-) — at Ati Physical Therapy.
July 12, 13 @ 7:46am Sarah Viglione was at MCW Pain Centers of Wisconsin Wauwatosa.	7th Nerve Block — at MCW Pain Centers of Wisconsin Wauwatosa.
July 9, 13 @ 7:17pm Sarah Viglione updated her status.	Had my 3 month post surgery appt yesterday - hip is healing great! But, I fractured my pelvic bone somehow. Had an EMG today to check out my nerves - they are confident that my Foot Drop is NOT permanent. It will just be a matter of time until it gets better. :-)
May 30, 13 @ 8:46am Sarah Viglione was at MCW Pain Centers of Wisconsin Wauwatosa.	3rd Lumbar Sympathetic Nerve Block -getting relief with each injection! :-) — at MCW Pain Centers of Wisconsin Wauwatosa.
May 24, 13 @ 10:20am Sarah Viglione was at MCW Pain Centers of Wisconsin Wauwatosa.	Just got my second Lumbar Nerve Block! — at MCW Pain Centers of Wisconsin Wauwatosa.
May 23, 13 @ 9:43am Sarah Viglione was at Medical College of Wisconsin.	Eight week follow-up, I can start bearing 25% weight! :-) — at Medical College of Wisconsin.
May 21, 13 @ 11:32am Sarah Viglione updated her status.	Dear God, please make the pain go away. I'm trying really hard to understand why you are making me suffer night after night . . .
May 1, 13 @ 1:36am Sarah Viglione updated her status.	Nerve pain, nerve pain go away . . . and don't come back any other day! A big thank you to Michael for going to Walgreens to get something to help relieve the pain since the prescriptions aren't working! Best husband ever! Prayers requested, please! The nerve pain in my foot has been unbearable and keeps getting worse! It may mean it's closer to waking up, but hurry up already!

Back to Land Physical Therapy

A week and a half ago, ATI Physical Therapy measured my foot again and it measured at -30 degrees.  When I first started at ATI in June, they measured me at -39 degrees, and just before I started Aquatic Therapy (beginning of August) I was measuring at -15 degrees.  I definitely could see that the Aquatic Therapy was not helping my foot at all.  All of last week and from here on out I have completely transferred back to land PT (3 days/week).  By last week Friday I was already showing improvement and was measured at -25 degrees.  And today I was measured at -21 degrees.  I am so happy that my foot is starting to go in the right direction again!  It made me so nervous when my progress got worse!  I just wish this process was a lot faster!  I miss being able to walk normal, without constantly tripping over my foot.  I also can't run after my children as I would probably fall flat on my face.  I really hope that my Drop Foot would just go away - I just keep praying that it will soon!  

(Just a reminder for those who may not know or have forgotten --->  Most people can raise their foot to a +10 to +20 degrees.  My left foot can raise to a +20, so I'm sure that is what my right foot was before I had the PAO surgery in March.  I have a long way to go yet - (another 30-40 degrees)).

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! ;-)