Avascular Necrosis

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I'm new here!

Hi, my name is ValiantCrow74186. I'm here because I suffer from chronic pain and have for almost ten years related to degenerative spinal disease and avascular necrosis of both femoral heads.

#MightyTogether

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Dirty Looks

Yes, I wear lipstick. Yes, Eminem was playing from my car. Yes, I am 44 years old. Yes, I had to get groceries before the winter storm arrived. Yes, I have handicapped plates. Yes, the car belongs to me as do the plates. (❗️AND❗️) Yes, I see your dirty looks, glaring, shaking of heads, whispering and ignorant assumptions of what a handicapped person looks like. I owe you no explanation of my disability. You are not entitled to my health history. The audacity of people to verbalize comments 'that's a handicapped parking spot,' 'stop using your grandma car,' 'I'm going to report you.'
Listen assholes, I have more metal in my body than an aluminum can recycling center. I have Avascular Necrosis (AVN) or Osteonecrosis. I have rods, pins, plates, screws etc holding this body together. My hips went first. Bilateral hip replacements. Second, my left shoulder. Shoulder replaced. Third, knees. Bilateral knee replacements. Fourth, left ankle. Same story, same dance.
Like most, some days are better than others. Sometimes I need a cane, sometimes I don't. Sometimes I can get in/out of my car with minimal difficulty. Other times it takes me 10 minutes to align my hips, legs and feet to the ground.
Basically FK YOU and your dirty looks. #AvascularNecrosis #Osteonecrosis #ChronicIllness #ChronicPain #InvisibleDisability #InvisibleIllness #Disability #ButYouDontLookSick #Youdont knowme

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has anyone taken blood thinners, speciafically lovonox for avascular necrosis or osteonecrosis? what was your experience any positive results?

I’ve been taking a full therapeutic dose by injection everyday for 7 months and do not feel it has made any difference but do not know how long to keep trying since my hemotologist said it’s up to me how long. the studies have been done for 30 -90 days until more recent studies have gone 3-6 months. it is supposed to stop the progression of the avn if it is in stages 1 or 2 and maybe help with symptoms of more advanced stages of disease but also depends on the underlying cause of the avn. if you have any experience with this I would love to hear about it.
#Osteonecrosis #AvascularNecrosis #AVN

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starting avn dialogue

I’m not new to avn I’ve been diagnosed since 2009 and I have so many questions about it still and many experiences to share as well I’d love to start some dialogue about #AvascularNecrosis
I have experience with the shoulder hips knees and ankles. I’ve had 7 joint replacements 4 of them during the pandemic and 2 decompression surgeries. I’ve had unusual complications after 4 of them including 2 blood transfusions and I’m wondering if others have had the need for blood transfusions after joint replacements due to avn.
I’m new to hand/wrist and. elbow avn and would like to know more about others with the upper extremity avn.
I look forward to hearing from others with #AvascularNecrosis and I have many more questions. #

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Newly diagnosed with Avascular Necrosis

I was just recently diagnosed with Avascular Necrosis. I’ve been having hip pain since end of November. The strongest pain meds I’ve been given is naproxen. I have been lucky in the sense that my PCP took me seriously from the start, did X-RAYS showing the Avascular Necrosis. Sent me to a Orthopedic Surgeon who let my husband go with me to appointments as I have had numerous traumatic surgeries. ( when on the phone making the appointment, I started crying because I am scared). He scheduled me for MRIs of both hips. Before that appointment I took a nosedive in front of my boys two younger, one older. Freaked them out, freaked myself out all while having to not because I had to Mommy and reassure them. When alone I called the orthopedic office and crying told them something was extra wrong with my left hip that something was happening and I didn’t know what to do. She moved my MRI up to less than a week and my follow up with the surgeon a couple days after that. In less than a month somehow the entire left bone was essentially gone.
I never thought it could happen so fast.
#AvascularNecrosis

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Bertotlottis Syndrome- An uncommon cause of back pain

It started over ten years ago when I was pregnant with my second child. I would get shooting pains down my left leg and buttock. Once while at work, I remember my coworkers thought I was going into labor because I was walking towards my patients’ room, and all of a sudden, I got a shooting pain in my left groin and buttocks that literally stopped me in my tracks. I asked my OBGYN about these weird pains, and she said it sounded like sciatica from the extra pressure of the baby, and it would get better after I delivered.

I delivered my son, and the shooting pains did subside, but over the next year and a half, I started noticing lower back pain, a constant dull stiff kind of ache. It didn’t bother me much unless I sat, walked, or stood too long. It was easily relieved by changing my position and taking Tylenol. After a while, I decided I couldn’t keep taking Tylenol for the rest of my life, so I figured I needed to heal my back. I also had diastasis recti from pregnancy and knew that I needed to strengthen my core. The idea was to start an exercise program to strengthen my core, and by strengthening my core, my back wouldn’t have to work so hard, and maybe the pain would go away?

I chose yoga! I was initially focused on core strength, and I began doing planks, arm balances, and all kinds of challenging poses. I ended up injuring my shoulder a few times because I lacked core strength and my alignment was off. I had no business as a self-taught yogi trying to do advanced poses. At this point, I decided to take a more gentle approach and started looking into restorative and therapeutic yoga. I had found my niche! I loved Iyengar yoga because of the focus on alignment and therapeutic approach. Just doing a few poses a day cat/cow, mountain, downward dog, tree, warrior, I started to notice my back pain was better. I no longer had to carry Tylenol everywhere, and I could sit, stand, and walk without pain!.

My back didn’t bother me for years; I think because I did so much yoga. By so much, maybe 10-15 minutes of a couple poses a few times a week. I was also very intentional about my posture during the day. But then things started to get crazy again a few years later. I got diagnosed with lupus and couldn’t do the level of yoga I was doing before. I began to notice standing poses would exhaust me, my knees and hips would hurt, and it seemed almost any pose caused that sciatic and low back pain to exacerbate. Driving also became an issue. My 1 hr commute to work would leave me limping from my car. My hips and low back would get so sore just from driving to work.

Since yoga was causing me issues, I turned to Yoga Nidra, chair yoga, and walking. But with walking, the same thing would happen, after about 10 minutes or so my hips would hurt, especially the right hip and I’d be limping, my knees hurt and felt like they couldn’t support my weight. This was when I got nervous because I thought I developed avascular necrosis. I told my rheumatologist, and she ordered Xrays. My hips looked fine on Xray, but she was concerned about my sacroiliac joint. It showed some irregularities,so she ordered an Xray of the SI joint. This Xray then showed both my SI joints had what looked like inflammatory changes. It also picked up “transitional vertebrae”. She orders an MRI to rule out active inflammation because she was concerned I had ankylosing spondylitis. The MRI was fine… it showed the same damage to my SI joints but no active inflammation. The MRI also confirmed Bertolittis syndrome and picked up Tarlov cysts. I was then referred to a sports medicine MD and physical therapy. This is where I am today, awaiting my appointments while dealing with this mildly annoying low back pain and difficulty walking, sitting, and standing. I thank God the pain isn’t severe and that I don’t have another inflammatory condition.

At the beginning of my back pain journey, I knew something had to be wrong, but I also knew that the options for me would be medicine and/or surgery, and I didn’t want that. I knew yoga would help, and it did. Most of what I’ve read so far about Bertolotti’s syndrome and tarlov systs recommend surgery, and most patients have a lot of pain. This leaves me to wonder if yoga has kept my pain from getting severe? Will I need surgery to get rid of the pain ultimately? Will it get worse if I don’t do surgery? Have I been harming myself with my own self-prescribed exercise regimens? To be continued!

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How do i start volunteering for non profits?

I’ve always want to volunteer for non profits that like help people like me. Sorry this isn’t making sense. But I have lupus so one I want to work would be the lupus foundation( i think it’s called) I just feel like I can help others like me... #Lupus #Depression #MentalHealth #EatingDisorders #PTSD #HipReplacement #AvascularNecrosis #BorderlinePersonalityDisorder

4 comments
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just diagnosed..


#AvascularNecrosis
I've just been diagnosed with avascular necrosis in my right hip after 2 long years of my doctor telling me its sciatica....I knew it was something more ...... the first xray showed osteoarthritis in both hips but then my consultant sent me for an MRI as she thought there mustvs if been something they were missing with me having more pain in my right hip.....has anybody else found it a long hard task to reach a diagnosis?

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