Today’s blog post is thanks for Carissa M, a strong mama who suffered from femoral nerve damage from the birth of her daughter. Many thanks to her for sharing her story and helping so many along the way. We wish her the absolute best in her continued healing.
Where my Story Begins
As I sit here in preparation to share my story with others, I find myself welling up with tears and uncertain of where to begin. I am sharing my story and my journey to bring awareness, inspire and bring hope to others. As a first-time mom I, just like many of you experienced so much excitement and anxiety all wrapped up in one as we set on to prepare for our baby girl’s arrival. I just couldn’t wait to meet her and be the mom I envisioned I would be. Many say nothing prepares you for motherhood and boy were they right.
My image of what it was going to be like was completely shattered the day following the birth of my daughter. My idea of labor went nothing as planned. I made the decision to get an epidural and after nearly three and a half hours of pushing the doctor told me my daughter had not been descending any further in the last hour. With tears streaming down my face out of frustration as this was not my plan, I agreed to a c-section. Besides my own nerves getting the best of me, little did I know that was the least challenging thing I would experience. At 9:33 p.m. my daughter Layla Rose made her appearance into this world. The feeling of love and joy for her and our new family immediately took over.
After settling back in our room that night they placed the intermittent compression device on my legs to prevent clotting. The compression device on my right leg didn’t feel right but I disregarded it. The following day around early afternoon I was asked to move to the edge of the bed so I could stand up and use the bathroom. I found myself unable to move my right leg at all and it was completely numb from mid quad down to my ankle. They helped me move to the edge and with a nurse on each side they assisted me to stand, where my leg collapsed. I could barely move let alone stand. With a person on each side and one behind me holding me up, I used a walker and was assisted to the bathroom. They told me that the epidural most likely didn’t wear off yet and to give it a day and I should regain feeling. They couldn’t have been more wrong. This was the beginning of what has seemed like a very long battle. I spent the next few days hoping and praying I would wake up to feeling in my right leg and each day I found myself feeling less hopeful and more fearful.
I met with the neurologist 24 hours after giving birth who sent me for testing. Little did I know I would be seeing him A LOT more. Three days later while sitting in my hospital bed I spoke to my neurologist on the phone where he made my diagnosis of femoral neuropathy from childbirth. He discussed with me possible causes, which could have been from either the lithotomy position for a prolonged period and/or compression on the femoral nerve from my daughter descending. Feeling overwhelmed and confused I asked many questions where the answers were difficult to hear. I hung up the phone and immediately started crying. I sat there in disbelief thinking “what do you mean 3-6 months and sometimes up to a year?!” I didn’t quite know what to think at that moment. It was a lot to take in. I began doing my research to find out more. I began PT in the hospital where they worked with me on standing from sitting, walking and very cautiously doing stairs. In the process I scared the physical therapist and my family multiple times as my leg would buckle unexpectedly. They ordered me a walker and a cane for home to help with the transition. That Tuesday — just five days later — I was discharged with a referral for continuing physical therapy, occupational therapy and a follow up with the neurologist. I was fearful of how I would manage once we were home, especially since we have 13 stairs. I had physical therapy and occupational therapy coming to the house three times a week. After this I transitioned to outpatient PT three times a week.
My Life at Home
My first day home and with assistance I “walked” right to the couch and plopped down … literally. I felt lost. The days, weeks and months ahead I found myself hysterical and in tears feeling completely helpless. I tried to be strong but deep down I wasn’t. The second anyone asked if I was okay I would burst into tears and rattle off a million reasons why I wasn’t. I found myself many nights lost in research and blogs posted from other moms about their own journey. I felt each and every one of them very deeply knowing it sounded just like my story and that I was not alone in this nightmare. I kept trying to remind myself how we were SO lucky to have a healthy baby girl to help lift my spirits but sometimes it would only get me so far. Within the first couple weeks I had multiple falls including in the bathroom inches away from smacking my head off the tub, in public for my daughters first appointment, down the stairs and three months in at a wedding. By the grace of God I didn’t seriously hurt myself or break anything. I would cry out of pure frustration or sometimes laugh because I just didn’t know what else to do.
I went from being a miss independent-do it myself kind of girl to being completely dependent on my fiancé and our family 24/7 for over two and a half months. They helped because they love me and support me but that didn’t make me feel like any less of a burden at times. I was unable to get up and use the bathroom or shower by myself. I got adaptive equipment in the house to help; a nice shower seat that went off the side of the tub and side bars to help me off the toilet. Who would have thought that at 29 years old these would be the things I would find myself SO excited over when I saw them at my front door. We slept on the couch for a couple weeks because it was just easier. I would barely move from the couch and chair during this time because standing up and sitting down was a challenge and painful. My family would wheel over her pack n play just so I could change her. I felt defeated when I couldn’t walk with her, stand with her or sit on the floor to play with her. I had to ASK to hold my own daughter because I was unable to get her myself. Each time she had to be handed to me while I sat. I was unable to get up and be the first face my daughter would see when she was upset or the last she would see at night before going to sleep. The guilt that follows you through each day for not being able to be “that person” for your little one is beyond challenging. Our first Halloween over three months in, I was unable to carry my daughter to each house because of uneven ground and slopes. Simple things many wouldn’t think twice about became such important parts of my life.
My Symptoms from Femoral Nerve Damage
From the beginning my symptoms included having no feeling from mid quad down to my ankle, inability to kick my leg forward, inability to pick my leg up, weakness in right leg, inability to walk without assistance, unable to drive, difficulty walking stairs (can only do good leg up, bad leg down with a cane), difficulty with inclines and declines, knee buckling, falling, hyperextension, muscle atrophy and no knee reflex. My foot and ankle had full strength and movement from the start. With PT I began experiencing random achiness and pain during some exercises and after. Today, my walking has improved significantly, my leg rarely feels like it will buckle (unless I trip or turn/bend a certain way), and I am now able to carry my daughter around (except stairs and inclines/declines). Over five months postpartum I am still out of work and unable to drive because I am unable to get my foot out far enough. Feeling in my leg has returned although the best way to explain it is it feels like rubber and near the knee still has some numbness. I experience achiness in my leg (mainly my knee) nearly every day. I am unable to kick my leg forward more than a few inches, I can’t do straight leg raises, I still experience muscle atrophy, and still experience the same difficulty with stairs. I am overwhelmed with everything I have not yet accomplished but am grateful to be able to be alone with my daughter and carry her.
Appointments & Findings
Although at five months PP my story has been SO similar to others experiencing femoral nerve damage, it has also been different; each one of us has our own challenges. My first EMG exactly two months post partum showed zero activity in the femoral nerve. My neurologist appeared surprised and said it is a more severe case as he would have expected to see some activity. Due to knee pain, swelling and achiness he sent me to an orthopedic. After an x-ray the doctor said my right kneecap (impacted leg) is significantly lower than the left because there is no communication to the patellar tendon for it to work. After a few more appointments over the following months with my neurologist he was concerned with lack of progress in multiple areas. Although my walking improved greatly other things were stagnant. He referred me to one of a handful of neurosurgeons in the country for a consultation.
During my first consult with the neurosurgeon he listened to my story, tested my strength and evaluated me. He informed us that more then likely I would have to have surgery as things didn’t seem to be progressing as much as they should and strength was minimal. He wanted to send me for a follow up EMG and then for an MR neurography at the Hospital for Special Surgery in Manhattan. The doctor made it clear that he would like to wait until about the 6th month mark before making a final decision. The longer the nerve sits inactive or damaged the less likely it is to return to normal functioning and the harder it will be to come back. He explained in detail about the time limitation and provided the following example: “you wouldn’t go to a junkyard to buy a battery to start your car.” He discussed the two step procedure: a nerve decompression where they would then take away the fatty tissue surrounding the nerve and the second would be to take the obturator nerve and piece it into the femoral nerve to help reactivate.
My second EMG was completed and we went back in for a 2nd consult with the neurosurgeon. After review he said there are some areas that are trying to work and other areas that are not and are chronic. My question proceeding this was “does that imply its more permanent?” He said yes. I am now awaiting the results of my MR neurography which will show specifics of the nerve and where the damage is along that nerve. So if/when they do surgery they know how high to do the incision. My next follow up regarding the testing is the first week of January. The neurosurgeon said I would not get back to how I was prior to childbirth; surgery would help me get closer to normal but still with limitations (due to the obturator nerve being removed).
My feel good moments consisted of being able to change my daughter’s first poopy diaper (I never thought I would be so excited for this BUT I was), showering and toileting on my own, transitioning from my walker to my cane, cooking my first meal, giving my daughter her first bath, being able to stand at my daughters pack n play to change her, sitting with my daughter on the floor for the first time (scoot down from a couch and use your arms to push yourself back up thanks to my OT), putting my daughter in the front carrier to practice walking with her with OT, holding my daughter while standing, being able to get my daughter when she woke up or was crying, being able to walk with her around the house, and the best one yet after two and a half months having my very first day with my daughter all by myself! Almost five months later I have made a lot of progress but still have a ways to go.
This has been one of my biggest challenges in life but it has made me stronger and has brought me a stronger sense of appreciation. My goals today at five months postpartum are to be able to drive again, go up and down the stairs normally, be able to walk inclines and declines mindlessly, carry my daughter’s car seat around, be able to kick my leg out, do straight leg lifts, squats, and lunges, get rid of muscle atrophy, dance like I normally would, wear heels and get back to running and snowboarding. Long term I would like to run a half marathon (my goal prior to pregnancy) and be able to hike on my honeymoon in September.
To all of you strong moms out there struggling with nerve damage, don’t give up. Focus not on how far you have left to go but on how far you have come. Celebrate all accomplishments no matter how small they may seem because they matter. And to all of you who are just beginning your journey: there is hope, there are options and you can get better. Very few will fully be able to understand what this experience is like both mentally and physically. It becomes frustrating to get people to understand that just because things appear better that it doesn’t mean things ARE better. It has been so eye opening how many professionals (including OBs) are uneducated about nerve damage from childbirth. It is so important to find knowledgeable doctors during this process who can help guide you to healing. If you are not satisfied, find a different doctor if you have that option. Seek help and reach out to your support (including fellow moms) if you’re feeling depressed, overwhelmed or anxious. Lastly, I can’t stress enough- ask questions, advocate for yourself, demand answers, invest in yourself to get better, and MOST of all KNOW YOUR OPTIONS.
Much love to all of you amazing and strong ladies out there. Keep pushing through!