No, seriously….It’s been 147 days since I have been able to enjoy life. Today, I’m getting my left hip replaced due to Avascular Necrosis (AVN) returning and my hip collapsing.
Let’s rewind a little bit on how this horrible adventure began….
I started having low back pain and my chiropractor suggested an MRI. The results of the MRI showed Spondylolisthesis at L5 – which basically means my vertebrae is hanging on the edge. I went to an ortho to get an opinion and he put me in PT and also got me in to see a pain specialist.
After PT, I was still having low back pain. My pain specialist then did six procedures on me in the summer of 2016 to burn the nerves in my back (they do two test shots to make sure they are in the right area and then proceed with the burning of the nerves). This was done for both sides of my lower back. It actually worked for quite awhile. I was living my life, traveling – having a good ole time.
After a long flight from Hawaii, I started having achy pain on the top of my right thigh that stopped above my knee. I would take my dog on his daily 128 mile walk (OK, 5 miles, same thing) and noticed the pain would kick-in my thigh/groin area about 5 minutes into my walk. It wasn’t unbearable, but I knew something wasn’t right. In my head, I was thinking the pain was just from sitting on airplanes because I had traveled quite a bit in the recent months. My pain specialist gave me an epidural in January 2017 and that made it flare up horribly! We both determined it was time to start getting opinions on having my back fused. This is where shit gets crazy.
My first back opinion appointment was February 2017. My family knew this doctor and he had done surgery on my dad, so I was hoping for an honest answer. After x-rays and about a three hour wait, I finally got called back. His lovely PA came in and said right away a fusion was needed but he wanted an MRI of my hip. After telling me he would open me in the front and do some work, then flip me over and do additional work, I about lost it – mind you, this is still the PA talking. The actual surgeon comes in and tells me he would not open me in the front and never would and that he may need to fuse me in two places. Now, if you and your damn PA can’t agree to something or at least chat with each other before talking to a patient so you don’t sound like complete morons, you should probably get a new PA and work on your communication skills. He also said to get an MRI of my right hip – I agreed to it and the following week I got the MRI done. I never went back to this doctor after the four hour appointment and the insanity of it all. I figured I would have my pain doctor review the MRI or another back/hip doctor.
After I got my MRI done, I had a follow-up with my pain specialist. He looked over the MRI and said to take it to my next back opinion because he wanted to see what he said about my hip. A few days later, I had my second back opinion. I gave him the MRI of my hip and he said, “I’m not going to focus on your back, you need your hip fixed asap – but you do need your back fused”. Oh, OK…FML!! After finding out my right hip had AVN, they had me come in the next day to see another doctor…that doctor turned out to be an old high school friend, who did not want to operate due to the friendship so he referred me to his coworker who handles AVN. Understood.
This new hip doctor confirmed the AVN and by then, my left hip started having groin pain. What is AVN, you ask? Here’s a brief description:
Avascular necrosis is the death of bone tissue due to a lack of blood supply. Also called osteonecrosis, avascular necrosis can lead to tiny breaks in the bone and the bone’s eventual collapse. The blood flow to a section of bone can be interrupted if the bone is fractured or the joint becomes dislocated. Avascular necrosis is also associated with long-term use of high-dose steroid medications and excessive alcohol intake. Anyone can be affected by avascular necrosis. However, it’s most common in people between the ages of 30 and 60. Because of this relatively young age range, avascular necrosis can have significant long-term consequences. (Mayo Clinic)
Now, you are probably wondering how much I drink or if I do steroids or have I had trauma to my hips. Rarely, NO & NO. I even called my primary doctor to see how many steroid packs I have had since I’ve been seeing her and the total was 2 – TWO!! After doing massive research, two packs will more than likely not cause this – you need to be doing heavy steroids, be an alcoholic (which I should be after all of this). One of the doctors did claim that one steroid pill can cause AVN. Two of the doctors claimed this was due to “environmental issues”.
So, why would a healthy 32 year old all of a sudden feel like a 90 year old and can barely make it around the block? It’s incredibly hard to pinpoint the source of what causes this nasty disease – but keep in mind, there is a huge health concern at Bayshore High School here in Bradenton, FL. Sudents are dying of extremely rare cases of cancer and being diagnosed with autoimmune diseases. Is this the problem? My brother is one of those statistics. He died of Ewing’s Sarcoma (VERY RARE) – 2 cases have shown up at Bayshore High and 2 within the Bayshore Gardens area. If you are unfamiliar with the fight of the students, family, etc. trying to get more information on the dump site (Riverside Products) and the wells at Bayshore High, I advise you to become informed. Now the media states this refers to the old high school, but many of us marched, practiced and were on those grounds of the old school. The other concern – where is the water coming from that is going to the new school? My brother attended the old school and I attended the new school. Check out the links below to read more on it. Ricky Speed is my brother who lost his battle in 1997.
Anyway – back to my hip mess – the hip doctors recommendation was to do a core decompression – which means drill a hole up to my femoral head and scrape the dead bone out. He would then inject it with bone graft/stem cells to promote blood flow again. Sounds pleasant…My right hip core decompression was March 30th (Should’ve been March 29th if the damn drill showed up)…I healed pretty quickly from this. I was at my friends wedding about a week and a half later. The doctor was surprised how fast I was up. I was up walking immediately after surgery and he did not have me do PT. I was on a walker for a few days, then moved to a cane. I had about 15 staples, which looked like Frankenstein. During my recovery, I got an MRI of my left hip, which showed AVN as well. I proceeded with the core decompression on the left side on April 19th.
After my left hip, I was in horrible pain. I used a walker and would transition to a cane sometimes. The pain became so unbearable a few weeks after surgery, I had to call my doctor over the weekend. I went in the following day to have x-rays and they turned out clean. He claimed I just needed to take it easy and also upped my pain meds….I hate taking pills!! About a week and a half later, I went back to work. I still didn’t feel 100% My second week back at work, I had to start using a cane and I was dragging. Something was wrong with my left hip. I couldn’t lift my leg up normally. It felt like a ton of bricks and walking up an incline seemed like Mt. Everest. I was about to leave on a trip the beginning of June and I called my doctor to see if this pain was normal. He ordered an MRI and called the next day with results. He said my bone was inflamed and I needed to be on bed rest because he was afraid the other hip would eventually have the same problem. He said to take it day by day and it could last about a month. AGAIN – FML – Vacation was cancelled!!
On June 3rd, I started my “bed rest” – bleh. Luckily, I was able to work from home so I didn’t go too stir crazy. I had a follow-up with my surgeon after bed rest for 2 weeks and he said to give it more time – HOW MUCH FREAKING TIME!!? The pain did not subside at all. I had my OK days and I had terrible days. I even tried Cryotherapy!!
I didn’t know if my hip was going to give out and a few times it did. It felt like my hip was out of place. Picture a chicken wing and you pulling it apart – literally what I felt like. I could usually handle mornings well, but around noon I had to lay down or take a pain pill. I can’t count the nights I cried myself to sleep or had panic attacks because of the amount of pain I was in. There were times I just wanted to die – seriously. People say that loosely, but this was just horrible. I can’t image how my brother went through cancer or anyone else with a disease/disability. This set me back not only physically, but emotionally. Depression kicked in…I was in a horrible place.
I trusted my surgeon up until the point he said I needed to, “Granny it up” and “Wait it out”. I wasn’t expecting to walk out of surgery and be ready to run a marathon, but I also wasn’t expecting to be worse. I waited until the end of June and sent an email to my good friend who is an amazing Physical Therapist (if you need one in Sarasota – let me know!). He called me the next day and said sometimes it does take awhile for the pain but what I was going through just didn’t seem right. He gave me the name of a hip doctor and said to try and get in to see him. He was supposed to be the best….we’ve all heard that, haven’t we?
I gave this new “amazing” hip doctor a call. They got me in the following week to see a PA. She requested blood work to be done to see if there was an infection. The right-hand man came in as well, who was another PA, and we chatted for quite a bit and he said sometimes this just doesn’t work and we have to replace your hip but we will do everything we can. I went and had blood work immediately. My levels came back high (inflammation) so they requested a hip aspiration to see if the joint was infected and they were concerned with the amount of fluid present on the MRI – something the original surgeon never mentioned to me. In case you’re wondering how that went, watch below…
So that shit was awesome. The results came back with no infection found. This time, I finally met the actual hip surgeon – turns out – HE IS AMAZING!! My appointments were very thorough and not only did the PA’s spend a ton of time with me, the surgeon did as well. He explained the hip aspiration was negative, which is good news because if this shit was infected, he’d have to go in and clean out my joint, place a spacer in and I would have to have an IV for 6 weeks to get antibiotics – THEN he could replace my hip. He asked for one more MRI of both of my hips and to add contrast to see if it’s an infection or AVN – he just wanted to do his due diligence – I understood. A joint infection is different than if the bone is infected (where the procedure was done). Thats is what the doctor wanted to rule out.
MRI was done and the results – AVN is present in both hips (again) and my hips are starting to collapse – but no infection. Yasss!!! and Shit. I know what this means, hip replacement. Now I have to get into the mindset of going through surgery again and praying the outcome is not what I had before. I had to have faith and it was hard for me to believe that everything was going to be OK. It’s been wrong for five months. Is this how my life is going to be forever – chronic pain and end up on disability? I mean, shit, my dog hates me right now because we can’t go on our adventures.
My pre-op appointment was August 3rd. We went over everything there could possibly be. We talked about skydiving, snowboarding, taking a picture of my sawed off hip bone, videoing the surgery, etc. This doctor gave me faith that it will be OK – and that he will have me back to my regular non-sense in no time. I just have a small hiccup in life. He has to replace both, but not at the same time – Thank you baby Jesus. In the mean time, I had to buy ridiculously tight bicycle shorts, get a DVT Pump, get cleared for surgery and have a million tests done. Oh, did I mention the surgery is outpatient? Amazing!! My PT will come 3-4 times a week for 2 weeks and then at my follow-up, my surgeon will more than likely release me back to work and I can do PT on my own. I will be having an Anterior Hip Replacement. This isn’t like years ago where they make a huge incision and cut through your muscle. It’ll be on the side of my thigh and they will be able to move the muscle out of the way, so it is a quicker recovery time. 🙂 Yay all around!
Today, right now as you’re reading this, they are sawing off my hip. I’m loving it because I’m completely knocked out and in a whole different world of anesthesia. Here’s hoping I can drop it like it’s hot (without dislocating my hip) and back to my normal self again. CHEERS!
I wrote this not only to tell my story, but when they first told me I had AVN, I had no idea what it was. I didn’t know how serious this would turn out. If you search AVN, there are a few websites with a description, but you don’t find many sites where people tell their story. That’s what I needed. This is such a rare bone disease and it needs to be more known and researched. It’s the most painful thing I have ever gone through in my life and I’ve been through hell and back. If you’re wondering if I saw the original surgeon again, no I didn’t. I lost complete trust in him and his team. When that happens, you know something bad is bound to happen. My advice is, when you think something is wrong, say it. If you persist and a doctor still doesn’t listen, get another opinion. YOU know your own body. This is my story of my struggle and my fight with AVN.
If you’d like to know the physicians names, please contact me – I didn’t want to embarrass them…although, I should have. 🙂
I will keep everyone updated on my progress. Add me on Snapchat (localcelebr1ty) or Instagram (localcelebr1ty) to watch ridiculous videos of my recovery. If you have any questions about the procedures or anything at all, leave a comment!
For those that have lost someone close to them, there are at least two days we need a time out. Today is one of those days. On this day, every year, my heart stops at 7 p.m. No matter what I’m doing, I always seem to be looking at the clock when it hits 7 and my mind flashes back to the most terrible night in my life.
Today marks the 18th anniversary my brother became an angel. Unfortunately, the days do not get easier…or at least they haven’t in 18 years, so I can’t see it becoming easier anytime soon. You just end up learning to deal with it. It’s a part of life. A shitty part of life. When I speak about him to friends, family, or at events, I still get that knot of my stomach, lump in my throat and teary eyed. I could cry as hard as I did the night it happened. Don’t be confused that I don’t want to talk about my brother because that’s not the case.
May he rest in peace and be with all of the others we have lost throughout the years. I hope he is proud of the person I have become and I haven’t let him down.
Below is an article I came across that describes what people should understand about losing a child. No, I didn’t lose a child – but after 18 years, I can’t tell you how many times people have said the most awkward/ridiculous comments to my mom about my brother. I’m not sure if they get in a panic and have no idea what to say, so they end up blurting the very first thing that comes out. This is definitely an article EVERYONE should read.
Four and half years after the death of my oldest son, I finally went to a grief support group for parents who have lost children. I went to support a friend who recently lost her son. I’m not sure I would’ve gone except that when I was in her shoes, four years ago, I wish I would’ve had a friend to go with me. Losing a child is the loneliest, most desolate journey a person can take and the only people who can come close to appreciating it are those who share the experience.
The meeting was a local chapter of The Compassionate Friends, an organization solely dedicated to providing support for those who have lost children, grandchildren or siblings. The facilitator was a tall gentleman who had lost his 17 year old son eight years ago. He opened the meeting by saying that dues to belong to the club are more than anyone would ever want to pay. Well, he couldn’t be more correct: no one wants to belong to this group.
The group of incredible survivors included parents whose children had been killed by drunk drivers, murdered, accidental overdose, alcoholism, suicide and freak accidents. The children’s ages ranged from 6-38 years old. When hearing the stories, I had a visceral reaction to being part of this “club,” but was also humbled by the greatness of these mothers and fathers.
Most of what I share in this article came from this meeting, but also from my own experience of having lost a child and being four years into that lifelong journey of healing from deep grief. The following five tips can be your compass to help you navigate how to give support to grieving parents on a sacred journey they never wanted to take.
1. Remember our children.
The loss of children is a pain all bereaved parents share, and it is a degree of suffering that is impossible to grasp without experiencing it first hand. Often, when we know someone else is experiencing grief, our discomfort keeps us from approaching it head on. But we want the world to remember our child or children, no matter how young or old our child was.
If you see something that reminds you of my child, tell me. If you are reminded at the holidays or on his birthday that I am missing my son, please tell me you remember him. And when I speak his name or relive memories relive them with me, don’t shrink away. If you never met my son, don’t be afraid to ask about him. One of my greatest joys is talking about Brandon.
2. Accept that you can’t “fix” us.
An out-of-order death such as child loss breaks a person (especially a parent) in a way that is not fixable or solvable — ever! We will learn to pick up the pieces and move forward, but our lives will never be the same.
Every grieving parent must find a way to continue to live with loss, and it’s a solitary journey. We appreciate your support and hope you can be patient with us as we find our way.
Please: don’t tell us it’s time to get back to life, that’s it’s been long enough, or that time heals all wounds. We welcome your support and love, and we know sometimes it hard to watch, but our sense of brokenness isn’t going to go away. It is something to observe, recognize, accept.
3. Know that there are at least two days a year we need a time out.
We still count birthdays and fantasize what our child would be like if he/she were still living. Birthdays are especially hard for us. Our hearts ache to celebrate our child’s arrival into this world, but we are left becoming intensely aware of the hole in our hearts instead. Some parents create rituals or have parties while others prefer solitude. Either way, we are likely going to need time to process the marking of another year without our child.
Then there’s the anniversary of the date our child became an angel. This is a remarkable process similar to a parent of a newborn, first counting the days, then months then the one year anniversary, marking the time on the other side of that crevasse in our lives.
No matter how many years go by, the anniversary date of when our child died brings back deeply emotional memories and painful feelings (particularly if there is trauma associated with the child’s death). The days leading up to that day can feel like impending doom or like it’s hard to breathe. We may or may not share with you what’s happening.
This is where the process of remembrance will help. If you have heard me speak of my child or supported me in remembering him/her, you will be able to put the pieces together and know when these tough days are approaching.
4. Realize that we struggle every day with happiness.
It’s an ongoing battle to balance the pain and guilt of outliving your child with the desire to live in a way that honors them and their time on this earth.
I remember going on a family cruise eighteen months after Brandon died. On the first day, I stood at the back of the ship and bawled that I wasn’t sharing this experience with him. Then I had to steady myself, and recognize that I was also creating memories with my surviving sons, and enjoying the time with them in the present moment.
As bereaved parents, we are constantly balancing holding grief in one hand and a happy life after loss in the other. You might observe this when you are with us at a wedding, graduation or other milestone celebration. Don’t walk away — witness it with us and be part of our process.
5. Accept the fact that our loss might make you uncomfortable.
Our loss is unnatural, out-of-order; it challenges your sense of safety. You may not know what to say or do, and you’re afraid you might make us lose it. We’ve learned all of this as part of what we’re learning about grief.
We will never forget our child. And in fact, our loss is always right under the surface of other emotions, even happiness. We would rather lose it because you spoke his/her name and remembered our child, than try and shield ourselves from the pain and live in denial.
Grief is the pendulum swing of love. The stronger and deeper the love the more grief will be created on the other side. Consider it a sacred opportunity to stand shoulder to shoulder with someone who have endured one of life’s most frightening events. Rise up with us.
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