Sunday, August 24, 2014

Ankle Swollen & Pain

Lately, I've been experiencing some slight swelling in my right ankle (of the dropped foot) which in turn, I think, has been causing me some ankle pain.  I have noticed it mainly when I am on my feet more, which makes it hard to walk.  Not only am I thinking about raising my foot, I am now thinking about the pain I am going to experiencing every step I take.  Even though I am longer in physical therapy, I still feel as though my foot is still making progress.  I just don't see the numbers anymore.  I wish someone could measure it for me! I'm wondering if I am experiencing the swelling and pain since I am so close to a "possible total foot drop recovery?"   I'm going to estimate that my foot drop will be completely recovered by December 2014.  The month that the EMG doctor estimated total recovery to me one year ago (but he told me December 2013!).

Friday, August 1, 2014

CRPS Symptoms

Just came across a scratch piece of paper that I wrote down all the symptoms I was having before I saw Dr. Patel for the first time (over a year ago, before I was diagnosed with CRPS).  I literally thought I was just having 'nerve pain' as that is what my surgeon thought, since I got Drop Foot after surgery.  They kept telling me that the nerve pain would be painful.  Little did they know, or myself, I developed CRPS.  It brings back a lot of bad memories as I was in so much pain at the time, and crying nightly.  I feel so fortunate to have been referred to such a wonderful doctor that has taken most of that pain away.

(Note I brought first time I saw Dr. Patel)

Wednesday, June 25, 2014

Email Update

I've been emailing back-and-forth with Dr. JS and his nurse for a couple weeks, with the intention of trying to get my left hip PAO done sooner than later.  At this time, Dr. JS felt it would be in my best interest to hold off for a little while until the timing was right.  There are still a few things that he would like me to accomplish before undergoing a PAO on my left hip.  

His response was honestly not what I wanted to hear, but honestly what is best for me.  So, I will work on what he needs me to accomplish and go from there.

Saturday, June 21, 2014

Flip Flops or Sandals?

Last summer, I wasn't able to put on flip flops without pulling my big toe through, as my big toe was "dead" from the Drop Foot.  I also wasn't able to keep the flip flops on my feet once they were on.  You don't realize how much you use you toe muscles and such to keep your shoes on, until you can't! So, I purchased sandals with straps around the back of my heel to keep them on.  

This summer, I attempted to put flip flops on again.  I can do it easier and pretty much don't need to pull my big toe through.  I have to think about it, and it takes me longer than my left foot, but I can do it! I can also keep the flip flop on easier than I could last year.  However, it's still not an easy task, as I need to focus on my walking even more so I don't trip.  So, I still use my sandals with the straps around the back.  I'm hoping by next summer, I will be able to wear flip flops again! 

Monday, June 16, 2014

Left Hip Pain

My left hip has been becoming increasingly more painful.  Every night I've been having to use my "Elasto-Gel" Cooling Wrap (btw, best thing ever) around my hip to calm the pain.  I can't lay on my back or my sides to fall asleep, I have to be on my stomach.  It's just weird how much it is hurting me "at rest" now, and not just when I am active.  On a positive note . . . I can't measure my foot, but from the looks of it - I think I'm raising it a few more degrees!

I wrote Dr. JS's nurse an email over 1.5 weeks ago .... pleading that I need this surgery soon than later!  Last week (Wednesday), she responded that she would talk with Dr. JS and get back to me.  I haven't heard anything yet, but I'm hoping for a good response.  I can't keep living like this.  I limp in pain while at the grocery store, the park, etc. I can't even chase my kids.  I can barely lift my leg to put on my pants, socks or shoes.  I literally have to lift my leg with my hands to do these tasks.

My right hip - PAO - was a success! I have little-to-NO pain! It's unbelievable.  All the years that I grew up thinking that a little pain here and there was just normal pain.  It wasn't.  And, now that the pain is just unbearable on my left side, and now that I know that there is a surgery that can take all that pain away - that's all I want! Yes, my first PAO had a few complications - that's with any surgery! But, I got through them and am now living with a newly reconstructed hip.  One that has no limitations, like if I got a "hip replacement."  Which I am so happy that technology has come so far that, they were able to preserve my own hip, and have only a few artificial screws to hold it place.  Which, by the way, could potential be removed.  I am still blown away by the surgery that I got, and love explaining it to others. 

Monday, June 9, 2014

Crystal Healing and Massage

Two weeks ago I got a massage at Amoterra in Townsend, WI.  I haven't seen Phil (from Amoterra) all winter as we didn't go up north since fall (until Memorial Day weekend).  I missed getting a massage!  I forgot how much it helped my foot when I saw him.

We went up north again this past weekend and I tried something new! Phil suggested I see Joe for Crystal Healing.  I never heard of Crystal Healing before, or if I did, I don't recall.  But, he basically had me lay on the table, put a few stones in various spots, and explained the process.  The ultimate goal was to reduce the pain in my left hip (that still needs surgery) and heal my drop foot.  He placed a few crystals in his hands and did a knitting-like wave in the air above my body, and would explain my problem areas.  At times, I felt a spark-like feeling, especially in my right "dropped" foot. At the end, he explained that it may take up to 24 hours for the healing process to complete.  

Afterwards, Phil gave me a massage and focused on my left hip and drop foot, but also gave me a bit of a relaxing massage too!  He kiddingly said, "someday I'll be able to just give you a relaxing massage instead of deep tissue/muscle" - aka: ouch! - but, I know it'll make me feel better later, and it does! ;-)

Thursday, April 24, 2014

Epidural Steroid Injection

On October 21, 2013, I fell and busted my knee pretty bad in a parking lot.  I got an X-ray of my knee because I thought that I broke it (but, I didn't). Since the fall my balance has been off, I got numbness and tingling/falling asleep feeling in my feet, and more pain in my right foot.  I thought that the CRPS was flaring up because of the cold (since it was at the start of winter).  But, to be on the safe side, Dr. JS sent me in for a MRI of my back in January 2014, and that's when they discovered the bulging discs in my lower back.  

On April 3, 2014, Dr. Patel gave me an Epidural Steroid Injection, to try to reduce the pain that I was experiencing as another plan to my treatment process.  Today (4/24), I got another Epidural Steroid Injection.  Today, they put the injection in right at the bottom of my spine.  When I received the injection on 4/3, they injected it higher up on my (lower) spine.  Also, today (4/24), the injection was more painful than the one on 4/3.  I didn't notice any relief from the injection on 4/3, so I'm hoping that the location that this injection was put in will do the trick!  Time will only tell!  If it does work, then I won't need to return until my scheduled office visit in another two (2) months! 

UPDATE:  Monday, April 28, 2014:

I did get pain relief from the 2nd Epidural Steroid Injection!!!  I've been able to sleep without socks on since Thursday night!  I have not been able to do that since my fall in October.  If anyone enjoys sleeping in a clean bed, shaved legs and no socks . . . it's me!  It's been killing me since October that I couldn't sleep without socks on.  Even though we have a 'heated mattress pad' I still needed the socks, because warmth was the only thing that took away the pain.  For me, I didn't need pills, I just needed warm socks, boots, heated blankets/mattress pads . . . anything warm!  So, the great thing about this last injection . . . MY FOOT IS NATURALLY WARM now!  I'm not sure how long the injection will last to keep my foot warm, but I am sure loving the relief I am getting.  This injection gave me about 85-90% relief - the fastest and most immediate relief that I've ever gotten!

UPDATE:  Tuesday, April 29, 2014:

Last night I noticed that the pain is just starting to creep back up on me.  My foot isn't as warm as it has been and almost needed to put socks on.  But, I was stubborn and put my feet in-between my husbands legs to warm them up!  I also turned on my heated mattress pad.  It seemed to do the trick last night, but not sure about tonight.  I really enjoyed my warm feet while it lasted, and knowing that this injection worked gives me hope!  

Friday, April 18, 2014

Sympathetic Nerve Block Injection

Went to see Dr. Patel for another Sympathetic Nerve Block Injection early this morning.  This past week or two I've been experiencing more pain than normal in my right foot.  I've had lightning bolt, stabbing, and almost like a snake bite feeling in my right foot.  I've also noticed that when I've been showering, part of my leg has been turning a purplish color again.

I showed the above pictures to Dr. Patel and he agreed that I may be having another flare up of the CRPS.  He went ahead and gave me the Nerve Block and it went very smooth, as always.  Although, it almost felt like the first time I got a Nerve Block.  The "pressure" as he did the injection seemed more intense today, more than normal.  And, my rear is hurting a little throughout the day today.  They always tell me to expect side effects, but I typically haven't had many since my first few blocks.  Other than that, I seem to be having the normal warming sensation that I typically do in my right foot.  We have another scheduled for next week to get the CRPS under control.

Thursday, April 17, 2014

Stationary Bike

We bought a new stationary bike about a month ago to assist in my recovery process.  Since I still have Foot Drop, it is difficult to walk fast or obviously run.  I still needed to get some sort of cardio in to continue physical therapy at home (on my own), so we felt like the bike was the best option at this time.  Here it is . . . 

Friday, April 11, 2014

One Year Post - PAO Incision

One Year Post - Periacetabular Osteotomy Surgery ( PAO ) Incision
Some of it is nearly invisible now, but towards each end it is still a deeper red/purplish color.

Wednesday, April 9, 2014

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.   

Tuesday, April 1, 2014

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!

Monday, March 31, 2014

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!

Tuesday, March 25, 2014

Facebook Status Updates

February 10, 14 @ 9:04am
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
My foot is measuring at 0 degrees today! Another 10-20 degrees to go!!!! — at Ati Physical Therapy.
January 15, 14 @ 8:50am

January 3, 14 @ 1:11pm
Got to take Matthew to PT with me today! – at Ati Physical Therapy
December 18, 13 @ 10:25am
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
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
Working my Foot Drop!!! — at Ati Physical Therapy.
December 6, 13 @ 11:08am
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
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
October 14, 13 @ 2:26pm
At Hanger again, getting my AFO refitted! Bruises and blisters stink! — at Children's Hospital of Wisconsin.
October 4, 13 @ 8:27am
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
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
I can lift my foot to -18°, better than the -39° when I started!!! :-) — at Ati Physical Therapy.
July 15, 13 @ 10:45am
Another week of physical therapy! Hoping to start water therapy this week! :-) — at Ati Physical Therapy.
July 12, 13 @ 7:46am
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
3rd Lumbar Sympathetic Nerve Block -getting relief with each injection! :-) — at MCW Pain Centers of Wisconsin Wauwatosa.
May 24, 13 @ 10:20am
Just got my second Lumbar Nerve Block! — at MCW Pain Centers of Wisconsin Wauwatosa.
May 23, 13 @ 9:43am
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!