(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)).
Monday, September 9, 2013
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)).
(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)).
Tuesday, August 27, 2013
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 . . . .
Sent: Tuesday, May 14, 2013 11:28 AM
Subject: Fell down
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.
Subject: RE: Fell down
Date: Tue 5/14/13 11:55 AM
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.
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.
Thursday, June 27, 2013
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! ;-)
Friday, May 24, 2013
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
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
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
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
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.
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
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.
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
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!
Tuesday, April 30, 2013
I've really fallen behind on this blog! I got distracted with life - my husband, kids, visitors, chores, etc. Anyways, I am doing very well in my recovery! My hip has little to no pain! Ice seems to really do the trick if I start having some discomfort.
I regained feeling in my right leg on Saturday, April 20th! It was a wonderful day, I was so happy! BUT . . . my foot was still asleep. The next day my right foot started to wake up, but never actually does. So, since then I've really been struggling! It feels like lightning bolts are hitting it, someone is stabbing it, I'm getting poked with a thousand needles, it's get strangled, etc. It's the worst feeling in the world, even worse than childbirth, because it seems as though there is no end to it! I emailed Dr. JS's nurse to let her know what is going on and also told her that the new pain pill (Vicodin) that they prescribed last week was not mixing well with me. It gave me severe mood changes and just didn't work for me. On Tuesday, they prescribed me Percocet. That worked almost instantly to relieve the pain in my foot! I was able to get a full six hours of sleep that night and it was just wonderful! The only downfall to Percocet was that it gave me nausea. But, it seemed to help if I ate something before taking it. By the weekend, (4/27 - 4/28/13), the Percocet was no longer relieving the pain in my foot. At least with my leg, I could sit and be pain-free. My foot just keeps hurting - 24/7! I called Dr. JS nurse on Saturday hoping that she would check her voicemail over the weekend, and let her know how much pain my foot was in. I also told her that my hip pain is very minimal! If I didn't have these nerve issues, I would be doing really well right about now! I also called the On-Call Orthopedic Doctor/Nurse and they told me that I would have to come to the ER to be evaluated to get put on any other medications. I really didn't want to do that, so I tough'd it out! Yesterday (Monday morning) around 3:00am, I emailed Dr. JS's nurse and told her how much pain I was in. I really could not stand it anymore! I received a message back in the early morning and ultimately they decided to take me off the Percocet and increase the mg for the nerve pill (Gabapentin). Last night, I got about 2 hours of sleep at a time! Then would be up for about 1 or 2 hours before falling asleep for another 2 hours. I really don't know what to do about this nerve pain! We've tried massage, pills and physical therapy 5 days a week! I just want it to wake up! I need my life back.
Tuesday, April 16, 2013
DAY 14 (Thursday 4/11/13):
Last night I was not able to sleep well, I was very uncomfortable most of the night. It feels like my leg is trying to wake up while I am laying down now as well (not just standing for longer than 30 sec - 1 min). It just never does actually wake up, so I am having a really hard time because it really hurts. Around 6am I woke up to use the restroom and still felt tired so I laid back down. I dosed off and was woken at 8am by the nurse asking if I was coming to breakfast (at 8am)? I quickly got up and went to the restroom. When I stood, I realized that somewhere between 6am and 8am my incision decided it was going to bulge out and become really hard to the touch. It wasn't my whole incision, just about 3 inches or so. I alerted the nurse and she then examined it. She didn't feel as though it was too big of a concern because it wasn't on fire (hot), no drainage, I wasn't running a fever, etc. To be on the safe she brought in her supervisor (head nurse) and called Dr. JS to see if he had any concerns.
I had PT right away in the morning again, we worked on the stairs. I needed to figure out how to go up the stairs without a railing, since the three stairs outside of my apartment building does not have one. I mainly use the railing at the top and bottom to get myself up. We used a wooden step that I boosted myself up to, and then I boosted myself up to a folding chair. It worked out great! Only problem was that I couldn't buy the step from them, darn! Julie (the PT) and I then brainstormed what I could do at home. I couldn't just use a step stool as I needed it wide enough to get my hands on it to boost me up on it and then to the chair. She said she had a foam workout step at home and that I could possibly use it. I told her that if that didn't work, then my husband could build something to the dimensions that I needed.
Carey (with OT) worked with me on sitting in a chair and then standing. I basically have been doing this since I had the surgery, so I didn't need any practice. I just whipped down and back up. We went back to room and tried to think of anything that I might struggle with when I got back home. I thought a bit and then remembered that I probably wouldn't be able to bring the walker into the bathroom with me as it's a small. We decided that I could probably walk into the bathroom with the walker, pivot to the toilet and the pivot to a chair in front of the sink. We tried to think of anything else that I might struggle with when I returned home, but couldn't think of anything.
DAY 15 (Friday 4/12/13):
Again, last night I could not sleep well at all. It still feels like my leg is trying to wake up while I am laying down. The pain of my leg waking up is what is keeping me awake at night.
My actual hip pain is very minimal. Sometimes it hurts a little more, especially after PT, but ice usually helps relieve the pain. I am just really struggling with the pain of my leg "waking up" . . . but, never actually waking up.
Carey (OT) worked with me this morning on standing up from my bed if it's really low to the ground. I did it, easy breezy! It probably helped that it was the morning though and I was ready for the day! When I tried it later in the day on my own it was more difficult. But, practice makes perfect!
Julie (PT) had me work on walking with my new walker that I was going to be taking home. That way I could get the feel of it and be comfortable with it at home. We also did some more strength training. We're still trying to lift my right foot up towards me. But, I am still only able to wiggle my toes. It's so frustrating trying to just move your foot and you're unable to. In the afternoon, we attempted the stairs one last time. I did it fairly easy, but still can only do it on my butt. We went back to the PT gym and tried hopping over a half step as that is how I will need to get in the front door. I was surprised how well I did it! We finished off going over last minute things that I will need for the house. Unfortunately, the items I ordered didn't get delivered because my doctor never sign the script for it. So, I will be following up on Monday with the company that supplies the items. Otherwise, I have a doctor appointment with Dr. JS on Monday and I can get it from him directly. At least everything I really needed can wait since it's mainly shower items.
DAY 16 (Saturday 4/13/13):
It's been a long couple of weeks, but I feel like I've made a lot of progress. They told me that I'd be here 3 weeks and I cut it in half! But, I know that it was my determination and mindset that made it possible. I really am going to miss the nurses and other residents here at Fransiscan Woods though. I really got close with a lot of the good people here! I said my goodbye's and they all told me how much they were going to miss me! Everyone here has really prepared me to go home! I appreciate all their hard work and determination to make me feel as prepared as possible.
Mike (my husband) arrived just after 10am to pick me up. We pack up the car, I signed the discharge papers and we were set to go. I wheeled in the wheelchair up to the car door, stood up and got right in the car. My husband about fell over with how easy I was able to do it. He was still thinking I could barely stand on my own, as that was how I was in the hospital. When he did come visit me while I was at Fransiscan Woods I mainly stayed in my wheelchair or the bed, so he didn't really get to see the progress I made. It was so weird pulling up to our apartment with no snow on the ground! The weather really changed in 2.5 weeks that I was gone. I got myself out of the car and walked with the walker to the first set of steps. I then sat on the new step my husband made me on the landing so I could scoot up to the chair to stand up. I then hopped into the front door. I scooted up the stairs and then my husband brought his homemade step up so I could scoot up to the chair to stand. My husband was impressed once again! I am so happy that Julie (PT) really worked with me so I was prepared for everything!
I quickly realized it is a huge transition being home! My Mom borrowed us a recliner for my recovery, but I discovered that it wasn't going to work for me. It's not your typical recliner, as it's like a zero gravity one. To use the recliner feature, you really need the ability to use both feet to lift it, which I obviously can't. I am also having a hard time not only getting up from my Mom's recliner, but also our couch. So, we're going to have to either ask around if we can borrow something or we'll need to buy something that I can get up from more easily.
Our bathroom is pretty small, so I have to pivot on my left foot from the doorway to the toilet. To use the sink, I have to sit on the toilet as I can't get the walker through the bathroom to the sink.
I have been dealt a lot of obstacles being home, but I am so happy that I am with my boys! And, I know that in time it will be easier and I will find better ways of doing things.
DAY 15 (Sunday 4/14/13):
Today was still another day of transitioning and trying to figure out the best way of getting around. My leg is still numb and still really hurts when standing longer than a minute, so my husband brought up a office chair with wheels for me to use. I keep getting stuck on all of our area rugs, but I've been making it work.
DAY 16 (Monday 4/15/13):
I had a doctor appointment to see Dr. JS this morning. He removed my dressing and said everything looked good. He showed me my x-rays and 3D CAT scan showing my correction. It was so cool to see it!!!! I can't wait to get a copy to show people, or to just keep checking it myself. I thought he told me in previous appointments that I was ONE of the worst cases of Hip Dysplasia he's seen, but he told me today that I AM the worst case he's ever seen. He asked if I would want to be featured on a website and give my testimonial. I agreed, of course. Why wouldn't I? He really is changing my life for the better! I can't wait to be able to walk almost pain-free!
After the doctor appointment, we stopped at a medical supply store for all my goodies, haha! I needed transfer bench for the shower, along with some grab bars for the shower, a raised toilet seat, and some grab bars that attach to the toilet to make it easier to sit and stand. I initially tried a raised toilet seat (borrowed from my Mom) that had the bars attached to the seat, but I almost fell every time I stood when I would only hold onto one bar and not both, as the seat would pop out. I would definitely recommend getting the grab bars that attach to the toilet and that are separate from raised toilet seat. It's far safer!
DAY 17 (Tuesday 4/16/13):
I finally got to take a shower today! Woohoooooo!!! I couldn't stand just taking a sponge bath anymore.
Home Health Physical Therapy came today. She pretty much just had me sign a bunch of paperwork and just assessed where I was at with my progress. She will be coming 5 days a week to work on strength training and some stretching. Although, Dr. JS stated to not do too much with the range of motion (stretching) as it could do more damage than good.
Wednesday, April 10, 2013
DAY 11 (Monday 4/8/13):
Today, while standing for longer than 30 seconds to 1 minute, My leg starts to feel like it is waking up. Now the best way to explain this is, if you are sitting on your leg/foot and it falls asleep, then move it to get the blood flow back, it hurts like hell (excuse my language). That is what I feel while standing, down my entire right leg. Then as soon as I sit/lie back down, my leg/foot just goes numb again.
During Physical Therapy (PT) I wanted to attempt to do the stairs. We decided that scooting up the stairs on my butt would probably be the safest route. The physical therapist (Julie) was having me hold onto both of the railings (on each side of the stairs) to bring myself down to sit. I felt like I was going down too hard because of the position she had me doing it. Once I was seated, Julie had me put my left leg on the step below me to help push myself to the third step. I couldn't even push myself up one step. I was too nervous that I was going to push using my newly reconstructed leg. I started crying because the stairs are the only thing holding me back to be home with my boys. She reassured me that it will come in time with a little practice and that we can work on it again in the afternoon. She had me stand back up and we just practiced walking with the walker instead. To wrap it up, we did a little strength training to help build my muscle.
Later in the day I had my second PT session. Right away we tackled the stairs again. I sat down on the second step but, this time I did it my way. I used only one railing, held on and slowly sat down. I felt like I had a lot more control going down as opposed to her way. Julie agreed that it was probably safer for me too. I started to put my left leg back up on the step and push myself up to the next step. But, because my right leg is still numb it is a lot of dead weight and kept getting stuck on the step. So, my therapist put a towel under it, used it like a sling and held it up while I pushed myself up the stairs. I actually made it the entire flight! She had me try to stand at the top of the stairs but I was struggling. She brought in another person and a chair for the top of the stairs for me to sit down (the purpose of the chair is that I can lift my feet to the floor and pivot in the direction I want to walk). I definitely needed assistance to stand and then sit. I was so excited that I actually made it up, with help, but I made it! I needed help again to sit back down on the step and then to sling up my right leg to get down. It was a lot easier to go down, but still a little difficult. Again, I needed assistance to stand at the bottom of the stairs. When we finished, I did the 'happy dance' in my wheelchair because it was a big accomplishment for me!
DAY 12 (Tuesday 4/9/13):
Today, I still woke up to a numb leg. I pray every night (and during the day) that it'll wake up, but it's been stubborn, just like me!
I had OT right away this morning. Again, they didn't do too much, but watch how I walk and dress myself. They just want to make sure that I am doing everything the correct way so I don't mess up my newly reconstructed leg.
After breakfast I had PT. Instead of doing the stairs this morning Julie decided that we should work on strength training. We really worked a lot of my leg muscles! She even added some weights to add resistance. During my second PT session, we started out with some more strength training. She then did about ten minutes of electric shock therapy. We finished off the session by tackling the stairs. I was able to sit down on the step far more easily than yesterday. Julie held onto my belt, but more to make sure that I didn't fall down. I then scooted up the stairs fairly fast. I wore pants today instead of capris, hoping that it would help slide my right leg up the stairs more easily (and without having to sling it up with someone else's assistance). Even though it was easier today, I felt more pain in my pelvic area than I did yesterday. I got to the top of the stairs, was able to stand on my own and sit in the chair. I then was able to sit on the step and scoot myself down on my own. When I got to the bottom I was able to stand on my own again. It felt really good not needing as much assistance as I needed yesterday!
DAY 13 (Wednesday 4/10/13):
Today OT had me work on getting in and out of the bathtub/shower with a transfer chair. I did it really well and felt like it was a piece of cake! I can't wait until I can actually take a real shower. I've been taking a sponge bath everyday now for almost two weeks and it has been driving me nuts. I just don't feel clean, clean! But, I will have to wait until my dressing is removed and my incision is healed.
After OT, I immediately had PT. Julie did about ten minutes of electric shock therapy. We then did a few strength training exercises and finished off walking with walker.
In the afternoon PT session, we started off doing the stairs again. I was able to go up and down them even easier than yesterday and with less assistance. After the stairs we did some exercises while laying in a bed. I still am unable to scissor out/in my right leg. But, she helped me do the motion while I tried to do it. She stated that by trying to do the motion will help wake my muscles back up. Near the end of the strength training, I had my knee up (while I was laying down) and was able to squeeze my knee inwards. I woke up one of my muscles today, woohoo!!!! Then, we practiced walking with the walker again.
I also spoke with Julie today to see if I could go home. She then brought in another lady (in charge of discharging patients) and we decided that Saturday would be best! They felt like I will be ready to go home by then because of how well I am doing. Even though I will be ready to go home, they feel like I will still need at-home therapy. So, they are going to look into that for me and try to get it approved through insurance. I can't wait to go home to my boys!
Sunday, April 7, 2013
Last night I laid in bed and was catching up on a few tv shows before I went to sleep. Before I knew it, it was just midnight! I went to the restroom (and am able to walk there all by myself with the walker of course), brushed my teeth and snuggled back in bed. When I laid back down I had to call the nurse in to put my "boot" on to prevent "drop foot." Shortly after putting the boot back on, I started to get a feeling like my foot was on fire! When I called the nurse back in my room, they stated that she just went on her lunch break. So, I waited about a hour until she came in my room. She felt my foot and said it was just slightly warmer, but nothing significant to cause concern. The boot was put back on and she said she'd check back up on me. At about 3:30am, another nurse came to check on me and basically brushed it off as well. I was then up by 5:30am for the day, because the fire feeling wouldn't go away. I got ready for the day and just relaxed until OT came in. She was surprised I was ready to go for the day. I explained what happened last night to her, and she felt like it was a good sign. As much as it hurts/uncomfortable, it may mean my nerves are starting to wake up. I really hope that is the case, heck, this is getting old! I went the whole day with my leg/foot still asleep. But! . . . but, now if I am sitting down I can kick my foot forward about 6-ish inches! I feel like everyday I can do something new! I can't wait to see what tomorrow holds! Hopefully, starting to work on stairs!
Saturday, April 6, 2013
It's been one week & one day since I had the PAO surgery on my right hip. Sorry that I was unable to update sooner, but I will give an overview of my past week.
DAY 1 - SURGERY DAY (Good Friday):
I woke up on surgery day pretty calm and ready to go. I was surprised how calm I was, it didn't feel like I was having a major surgery in just a couple hours! I showered right away and then had to use sterilizing cloths to wipe down my entire front and back of my right leg (I had to sterilize the leg the night before as well). My husband gathered my bags and we were off to hospital! When we arrived (about 6:45am) I had to check-in, and waited about 10 minutes to be taken back. They took me to a small "prep room" where they changed me into a gown, put on my compression stockings and started my IV (the first of three while I was at the hospital). I was asked several questions over and over and over (and over, ha) which was partially annoying, but I know they just making sure that they didn't make any mistakes. My husband and I said a nice little prayer before I was taken into surgery at 8:15am. It was really nice to have a moment to pray to God to take care of me during surgery if that was in his will. They injected something into my IV that made me a tad loopy, I kissed my husband goodbye and they wheeled me into the operating room. They said that I wouldn't remember any of that, but I do. They put the gas mask over my mouth and I was out cold! They checked-in with my husband about two after they started and let him know that everything was going wonderful! And at about noon, Dr. JS came out to my husband and stated that everything went awesome! He stated that the new placement was great especially with how severe my Hip Dysplasia was. He also didn't have to use a plate, which I am honestly really happy about! So, there are just the three screws holding my pelvic bone in place, and the bones will hopefully fuse back together. When I woke up I was in the recovery room, but kept falling in and out of sleep. I wasn't in too much pain and I felt fairly good after surgery, just very drowsy! In the recovery room they put my leg in a machine that moved it up and down (bent knee up then moved leg straight). While they wheeled me from the recovery room to my room, I got really nauseous. But, it was really nice to see my husband waiting for me when I arrived. They injected something into my IV to relieve some of the nausea that I was experiencing. In the afternoon, I was able to keep my eyes open more and have several conversations. Dr. JS came to check in on how I was doing and checked my reflexes. At that time, I noticed that my foot and lower part of my leg fell asleep and never woke up after surgery. Basically, it was completely numb and I could barely wiggle my toes.
DAY 2 (Saturday 03/29/13):
I woke up on Saturday still feeling really good. I was really surprised how good I felt and how alert I was considering they gave me pain medication every few hours. I was also still in the leg machine until Dr. JS came to check on me. He felt it wasn't doing exactly what he wanted as my leg just kept sliding in it rather then getting the motion of up and down. He removed the machine and then wanted to check everything out. He had me try to pull my foot towards me, move it side to side, and try to lift it, but I was unable to do all of the above except wiggling my toes. My leg was still asleep at this point, but I still had hope it would wake up soon. Also, Dr. JS had high hopes that I could possibly go home on Sunday or Monday, I was so excited! Physical Therapy (PT) came in during the late morning and had me sit on the side of the bed. Unfortunately, that was all I could do. I got really nauseated and had to lie back down. Since it was my first time sitting up since surgery, they stated that my blood pressure probably dropped so they said they would return in a couple hours. When they came back they sat me up again and then had me try to stand for the first time. I did it, but started to feel nauseated again. I also felt really un-easy standing since my foot was numb, so I couldn't tell how much weight I was putting on my leg. And since I am restricted to "no weight bearing/toe touch weight bearing" - it made it very difficult. All they made me do was stand and try to lift my foot and leg, which I couldn't. They taught me a few leg exercises to do in bed, to start building my strength. I really couldn't do them, since my leg was numb, but they told me to at least try. Occupational Therapy (OT) also came in and gave me a exercise stretching band to work on my arm muscles. They also gave me some other nifty tools for everyday function (a sock aid, clothes stick, invisible dog leash to move my leg, and a grabber). These tools have been so helpful!
DAY 3 (Easter Sunday 03/30/13):
Oh my goodness, Day 3! Day 3 I woke up so sick! I threw up in the middle of the night and just couldn't get rid of the nausea! I felt like I had a really bad case of the flu. My leg/foot still didn't wake up today either. And, again when PT came in, I couldn't even move my right leg when I was standing with the walker. They just told me to continue to try to do the leg exercises they taught me yesterday. Dr. JS came to check on me, and took off my compression stocking on my right leg in hopes that it would help the nerves to wake up. The nurses also had to put me back on IV fluids because they thought I was dehydrated.
DAY 4 (Monday 4/1/13):
They stopped my nerve pill and pain pills in the middle of the night because I was so sick, even threw up! I couldn't even think about trying to take them. Since, prior to this surgery I have never taken anything other than the occasional Tylenol or Ibuprofen, they said that my body was just having a reaction to the narcotics (pain pills). Dr. JS came in to follow up and told me that he would change me to a pain pill that would be less harsh. I didn't actually take any pain meds throughout the day because I felt so crummy. I really wasn't in pain though, just really nauseated and had flu-like symptoms and no appetite. Dr. JS also ordered a CAT Scan to check out my right leg. He wanted to make sure that no nerves were growing inside the bone since my leg and foot still had not woken up. They were supposed to do it same day, but they didn't actually ever show up to do it.
DAY 5 (Tuesday 4/2/13)
I woke up and could only eat some yogurt, yet again I didn't have an appetite. They tried giving me some Tylenol at about 6:00am, but I just couldn't take it as I still felt a little nauseated. It sat there until about 9:00am, and I finally forced myself to take it since OT/PT was coming shortly. And, again I was unable to do much but stand and then pivot to the commode. By the lunch hour, I started to get my appetite back and felt a lot better! I couldn't believe it, but I actually ate my entire lunch! After lunch they took me off the IV Fluids and took me down for my CAT Scan. Dr. JS came up by me a few hours later to let me know that everything looked wonderful and it was just going to be a matter of time until the nerves woke up.
DAY 6 (Wednesday 4/3/13):
I woke up feeling really good! The nurse told me that I was going to be released today. Unfortunately, because my leg/foot was still numb, I was not going to be able to go home due to living on the second floor with no elevator. So, I was admitted into a Rehab Clinic in Brookfield. They had a wheelchair accessible van pick me up to take me to the rehab clinic. I was nervous to go because I heard horror stories about these after care places. But, I was pleasantly surprised! It was very clean and the staff was extremely nice. My Mom came in the evening and helped me unpack my belongings. It felt really good to have everything put away and not just thrown around.
DAY 7 (Thursday 4/4/13):
They did an OT and PT session with me where they assessed me to see where I was at and what my estimated time in the clinic would be. I was only able to walk about 5 feet but that was huge for me! They estimated me being here for about three weeks - OMG - I really hope not! I heard that and have been pushing ever since to get out of here. During my second PT sessions they had me walk again with the walker. She had to push my right leg though as I still couldn't raise it off the floor, but I was able to walk about 20 feet that time. They then tried electric shock therapy in hopes that it would wake up my nerves.
DAY 8 (Friday 4/5/13):
They woke me up to do OT and taught me to stand in front of the sink to brush my teeth and wash my face. I felt really good that I could stand there! Then they took me down to PT after breakfast and I was able to walk about 30 feet. During the afternoon PT session I learned to go on my left tippy toe and kind of swing my right hip forward. That way I did have to have anyone push my foot along. They also tried the electric shock therapy again.
DAY 9 (Saturday 4/6/13):
They woke me up again today to do OT. She didn't actually teach me anything today, just kind of watched me. But, she felt like I was really independent and stated that if I got practice doing stairs, then I could probably be released sooner, but that is up PT. When PT came after breakfast, I asked to do the stairs. She stated that she wanted me to walk more before doing the stairs to build my arm muscles. So, I made it about 60 feet straight today! That's double from yesterday! I feel like progress is being made! And even though I still can't feel my leg/foot, I feel as though I will definitely not be here three weeks! I just hope that my leg wakes up soon!
Tuesday, March 26, 2013
In just three days I will be getting the Periacetabular Osteotomy (PAO) procedure on my right hip. I went to the doctor yesterday for last minute questions and had Pre-Admission Testing done. I feel extremely prepared for the surgery, but I am still nervous and excited all at once! We're still trying to finalize the details on childcare for the boys, but hopefully it'll all be figured out by the end of the week. Toni (my sister-in-law) is coming up to watch the boys on surgery day and the rest of the weekend. I am so thankful to know they will be in good hands! I will try to update on here as much as I can after the surgery, but I know that I will be pretty out of it initially and may not be up to it.
Thursday, March 7, 2013
Monday, March 4, 2013
Today I had an appointment to meet with Dr. JS. He basically went over everything we discussed at the appointment last November 2012. He asked if I considered all my options and what I'd like to do from this point. I practically jumped out of my chair saying that I would like to proceed with the PAO surgery. As much as I was excited to tell him that I was ready, that excitement quickly dwindled as he went over the many risks. As many risks as there are, I feel very comfortable with Dr. JS, and know that I will be just fine! He also told me again that my severe hip dysplasia is one of the worst cases he has seen. By that comment, I knew that I was making a good choice to help correct it.
In my previous posting I never discussed the pain and uncomfortableness that experience on a day-to-day basis. Every morning I wake up feeling really good for the most part. But, on an average typical day, I will be limping immediately. Then the pain will increase as the day goes on, especially if I have a few errands to run. For example, lets say I have to go to the grocery store. By the middle of the shopping trip I will be limping through the store almost unable to walk. But, I push through it because I still have to live my life. I am looking forward to the outcome of these surgeries ahead. It definitely will not be an easy year, but I know that the road ahead of me is a positive one! One that will make me more active for my children and one that will leave me nearly pain free!
Sunday, March 3, 2013
My husband and I starting dating in December 2007. Around the same time, I started experiencing pain in my right hip every so often. It wasn't a consistent pain so I didn't think much of it, and thought that it was possibly a nerve. As the years progressed, so did the pain and frequency. I also started to experience pain in my left hip as well, but I just thought I was going crazy! I continued to live in denial because I was so young and I didn't believe that anything could be wrong with my hips. I ended up having two beautiful little boys, our first was born in August 2010 and our second was born May 2012! During my second pregnancy, if I squeezed my hips together I could feel them pop out of place and pop back. At the time, I just made the excuse that I was getting close to delivering my son, so it had to be my hips expanding. In June 2012, my Dad was experiencing hip pain as well and went to the doctor to have it checked. He has always avoided the doctor unless there was a good reason to go. I am just as stubborn as my Dad when it comes to going to the doctor. But, I finally gave in and decided I should probably just have them checked. First, I found a Primary Care Physician (Dr. ET) and made the appointment. Dr. ET ended up taking X-rays and found that my Pelvic Bone never developed all the way when I was born. She then referred me to an Orthopedic Surgeon (Dr. WD). Dr. WD reviewed the X-rays that the Dr. ET took and also took a few more to see my left hip. He then diagnosed me with Bilateral Congenital Hip Dysplasia in July 2012, and told me that I would need a reconstructive surgery called Periacetabular Osteotomy (PAO). Unfortunately, none of the Orthopedic Surgeons at his practice could do the surgery. He referred me to a doctor at Northwestern University Medical College in Illinois, but my insurance would not cover an out-of- state procedure unless it was an Emergency. I called Dr. WD back up and he then found a doctor in Madison, WI. I called the doctor in Madison several times to set an appointment, but every time I called they stated that the referral wasn't approved yet. This went on for months, but I was persistent and just kept calling to follow up. Finally, in November 2012, I was fed up and I search for a doctor myself! I found Dr. JS, who practices at Froedtert Medical College of Wisconsin (MCW). Dr. JS started at MCW in September 2012, as he just came back from studying Hip Preservation and Reconstruction at the University of Bern, Switzerland (directly where the PAO procedure was created). After doing a lot of research I decided that Dr. JS was the doctor that I wanted to do the surgery so I made an appointment in November 2012. During the appointment he took more X-rays and confirmed my condition. Dr. JS was very thorough and made sure that I understood my options. He highly recommended that I get two reconstructive PAO procedures, one on each side (that the prior orthopedic surgeon discussed). The next option was that I could continue to live my life in pain and would ultimately end up getting an artificial hip replacement in my 30's. Even though I was prepared for the appointment and knew my options (as I did a lot of research after seeing Dr. WD), it was still hard knowing that I have two kids at home and how I was going to get through this. I explained my situation to Dr. JS and that I was still breastfeeding my youngest child. He told me that there was not a rush and that I could wait a few months if I would like. I couldn't believe how much he worked with me and didn't push me to give him an immediate answer. He encouraged me to go home and take some time to think about my options. That was exactly what I did! After a lot of thought, I decided that I wanted to get the PAO surgery as it will preserve my hips, and will have nothing artificial except the screws (which can be removed). But, it was too important for my son to continue breastfeeding until he was closer to one years old, so I waited and I decided to get the first surgery done in March 2013. My youngest son isn't quite one yet, but I know that the faster I get the surgery done, the more mobile I can be for my boys! I have an appointment scheduled to meet with Dr. JS on March 4, 2013 to get more X-rays done and then schedule the PAO procedure. I am very nervous for the next steps, but I can't wait to be able to start walking without pain and a limp! I will give updates periodically in hopes to help someone else who may be going through this as well.