Friday, May 24, 2013

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!  :-)


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!  

Tuesday, May 21, 2013

Lumbar Sympathetic Nerve Block

Nerve Issue/CRPS:

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?!"

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?!"

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!  

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!  

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!!! 

Saturday, May 18, 2013

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!  :-)


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.

Friday, May 17, 2013

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.

Sunday, May 12, 2013

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!  :-)

Tuesday, May 7, 2013

Unexpected Clinic Visit

I would like to explain a little more about the pain and discomfort I've been experiencing since my foot started waking up.  As I said in my past posting (4/30/13) . . . . My foot feels like lightning bolts are hitting it, someone is stabbing it, I'm getting poked with a thousand needles, it's get strangled, etc.  I am also struggling more now because starting a few days ago when I raise my foot at all it hurts.  I can't sleep in my bed now because it hurts to lay down.  If hot or cold water touches my foot I am in excruciating pain! If someone brushes their hand across it, it hurts.  Sitting, standing, walking, etc.  EVERYTHING hurts right now!  Overall, the pain just keeps getting worse and I am getting barely any sleep.  I even tried a Sleep-Aid (Melatonin), and it doesn't work at all.  Dr. JS said that a sleep-aid won't work because of the pain I am in, but I thought it would be worth a try.


Yesterday, I started out my day normally with my foot still in pain.  I emailed Dr. JS's nurse in the middle of the night telling her how much pain I was in!  The nights just kill me!!!  I told her that I was taking the (900mg/3X a day) of the Gabapentin since Friday, rather than the recommended (400mg/3X a day) for two days, then (900mg/3X a day) for one day.  I told her that even with the increased dosage I wasn't getting any relief!  I asked what our next step was because this has just gotten to be completely unbearable!  She emailed me immediately in the morning and was completely sympathetic!  I couldn't ask for a better nurse!  She stated that I should start taking (1200mg/3X a day) starting immediately.  You are reading that right!  I went from originally (100mg/3X a day) to (1200/3X a day), crazy!  And to be completely honest, I have no change in pain level with any of these increases so far.  All I can say is that I really hope that this new increase in dosage kicks in soon and that it helps control the pain!

I had physical therapy with Pam at about 11:00am.  In the middle of PT, she started to do her usual soft tissue massage to my lower leg and foot to help wake up the nerve.  She noticed the my swelling was more than normal and then felt a lump on the lower right side of the knee.  She went from her typical chatty self to completely quiet and seemed to be really concentrated on the lump.  She ended my session a little early and I noticed that we didn't get through all of our exercises. About ten minutes after she left I received a call from Dr. JS's nurse stating that she wanted me to go to the ER as soon as possible just in case I had a Blood Clot.  I told her that I really didn't want to go to the ER and asked if there was another option.  She put me on hold, talked with Dr. JS and decided that I could just go into the clinic to get an Ultrasound.  But, she wanted me to go right away.  So, I called my husband and he said that his boss was out of the office in meeting, but that he would call her and leave right away.  I told him to hold off and that I would try to call my Mom to see if she was available.  She was in the same meeting as Mike's boss as they work for the same company, but different locations.  While I was talking with my Mom, it occurred to Mike that she was in the meeting and he was trying to call me.  But, my Mom said she'd leave the meeting and take me!  Thank goodness!  She got here in about 30 minutes and we were on our way.  Dr. JS's nurse asked me to call when I was on my way, so I called and left a message.  When we arrive at Froedtert, about 2:00pm, they said there was a 2 hour wait.  We waited and I got to enjoy a cup of hot chocolate, yum!   They came to get me just before 4:00pm for my Ultrasound. She just went up and down both of my legs checking my veins.  When I was just about finished Dr. JS came in to see me.  He asked how I was hanging in there, as he knows from my emails back and forth with his nurse that I am having horrible nerve pain in my foot.  We got to talking and he told me that my nerve damage would already be corrected if it was to my Peroneal Nerve to the right of my lower knee.  So, he stated that it was a complication due to surgery.  He believes that when he did the reconstruction he had to make my leg about 2mm longer, therefore everything in my leg had to adjust to the new positioning.  He said that normally your nerves can handle a 4cm change, which is obviously way more that what change I had done.  He thinks that my nerve was just stretched during surgery.  He told me that my nerve will heal and that it'll just be a matter of time.  I am really hoping for sooner than later!  He checked out my incision and was really happy with the way it looked.  When they were done he was happy to say that I wouldn't have to stay at the hospital -  no blood clots!!! 

Last night was probably the worst night ever for sleep!  I can't get comfortable anywhere now!  It's horrible.  I just want this pain to go away so I can sleep and so my husband can sleep.  He said that he can't sleep because he's worried for me and says I am just not the same person when I have extreme pain moments.  

Today during physical therapy I could barely do any of my exercises because everything hurt.  I just had to push through it all.  She couldn't believe how much pain I was in!  She asked me to ice my right hip at least three times daily, since Dr. JS now thinks the nerve was damage during surgery.  She said if there is swelling, it will make it more difficult for the nerve to heal.  I am hoping this helps!  I've iced it twice so far today and will probably try to ice it at least twice more this evening/night.  Lets hope that I can get a little sleep tonight!!!

Sunday, May 5, 2013

Week 5

It's been five weeks since my surgery and my hip seems to be healing wonderfully!  I have no pain most of the time, but the occasionally discomfort is treated with ice.  I am still using the walker and rolling office chair to get around the house.  Yesterday, I made a trip downstairs to sit outside while my boys played for a while.  It was really nice to get outside since I have been inside our apartment since my Doctor appointment (4/15/13), which was two days after I came home from the Rehab Center!  I was happy that I could still do the stairs fairly easy, by scooting my butt!   

The nerve pain going to my foot is absolutely unbearable!  I am really not sure how I make it everyday!  It just seems to get worse and worse as the days go on!  Dr. JS's nurse increased my Gabapentin from (200mg/3X a day) to (400mg/3X a day) for two days and then if needed (900mg/3X a day) for one day and then back to the (400mg/3X a day), then again if needed two days later the (900mg/3X a day), and so on and so forth.  I don't even notice a difference taking these pills, whether it's the higher dosage or not.  I get about an 1.5 - 2 hours of sleep at a time and then wake myself up by crying, I'm sleep crying!  You know the pain must be bad if you are sleep crying!  I really can't stand this anymore!  It is absolutely the worst pain I have ever experienced in my life!  I was really hoping that I would wake up today pain-free!  Since it took two weeks for my leg to wake up, I was hoping it would be the same or less for my foot.  I guess that is not the case, unfortunately!  My physical therapist has really been working with me to get movement back in my foot (as I have Drop Foot).  We see improvement, small improvement, but it's better than nothing!  Dr. JS filled out the script for physical therapy for 3 - 4 weeks, next week being my final week.  So, I am going to contact him to extend my physical therapy for my foot as I still really need help!  My hip has been doing great and I am able to do all those exercises myself, so I won't necessarily need it extended for my hip.  Anyways, my the Peroneal Nerve needs to heal fast, so my foot is pain-free again . . . and so I stop keeping my amazing husband up every night with my crying!