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I had surgery 3 years ago on my lumbar. One of many reasons for the surgery was a condition called spinal epidural lipomatosis. Basically unencapsulated fat was crushing my sciatic. So my surgeon removed a very big amount. After the surgery he came and told me my spine was much worse than the MRI showed.
3 years later I had an MRI cuz I'm experiencing much worse and frequent pain. Well turns out the fat deposits grew back and now there's also at least 2 new spots of stenosis.
My pain specialist said o would call me to schedule a round of cortisone injections in my hips. I have emailed 3x and called twice. I haven't heard back from anyone.
The pain keeps getting worse day by day. I can only handle being upright for 10 minutes.
I'm so hungry but I am not interested in any of the food we have. I want a BK OG chicken sandwich with tomato and cheese and a great big bucket of cheese fries.
Or maybe Sbarro pizza and bubble tea at the mall. I can imagine it now, big cheesy triangle, thin crust, dipped in ranch dressing. Oh fudge bucket I'm so hungry. I guess I'll go make myself another protein coffee.
#spinalepidurallipomatosis
spinalepidurallipomatosis
Exhausted
This week is a little bit busy. Tomorrow at noon we're going to the Henry Ford medical center for labs. Then we were gonna go out with Pauley's mom but I decided I don't want to. We were gonna make pizza. I wants potato.
On Thursday I have a follow up appointment with my pain specialist. I'm gonna schedule nerve ablation for my lumbar and cortisone injections for my hips. I need to talk to my doctor about the fat deposits along my spine. She doesn't know I had spinal epidural lipomatosis and my surgeon removed a huge amount 3 years ago. According to the MRI, the fat deposits grew back and now I've got more stenosis. Fun times for all.
Oh and it's a rare disease. Of course. Because gods forbid I get the sniffles.
#spinalepidurallipomatosis
1 reaction Good morning
I've got my nerve block procedure this morning. We're getting picked up in about an hour. I don't feel good at all. My back from base of my skull to my tail bone hurts so much. I feel like I got kicked. I took my morning insulin and I ate a croissant for breakfast.
My BG should be fine when I get there cuz it's currently in the 220s. I went last week and my BG was 12pts too high. I don't know what to do about my BP being high. I've got my giant water bottle full of sugar free juice. I just took a few hydroxyzine to calm me down.
This procedure is a test . It's temporary. It's gonna show us if the pain is in that area. It'll last less than 2 weeks. I'm just hoping it works.
#BackPain #spinalepidurallipomatosis
I was hangry. I want cheese fries or poutine at the local bar and poutinary, Liberty bar. So I walked into my kitchen and looked in my freezer. Tater tots. Ok that's a start. I looked in the fridge and found shredded cheese, guacamole and salsa. I'm still disappointed I didn't grab the sour cream. But I smooshed the tots and mixed it with delicious things. Oh it was so yummy!
I've got a full tummy, my blankie, Lux Alba, and my music on Spotify keeping me feeling good. Of course now I have to go back to the kitchen for more juice cuz I drank a whole bottle of coffee in about 10 minutes and forgot it was for taking my evening meds. Whoops. In my defense I got very excited for coffee and I haven't gotten excited for much lately.
My neck really hurts right now. The X-ray from 2 years ago showed some unpleasant snafus including my last vertebrae under my skull has calcified to my skull. I didn't even know that was possible. And the spot under my skull where my optic nerves cross each other has narrowed. None of my eye doctors can give me any real answer about what it means.
My eyes are really hurting. My vision has been trashed since I woke up. Double vision and the left eye keeps fogging up. I gotta call to schedule an appointment with my ophthalmic surgeon cuz I asked my ophthalmologist's nurse about scheduling to talk about the pain and she said he doesn't deal with eye pain, I just gotta go back to the surgeon and tell her what's happening. Fun times.
How's your night going?
#bilateralintermittentexotropia
#BackPain #FemoralAcetabularImpingement
#spinalepidurallipomatosis
Today's coffee adventure
Oh ok so hear me out. Banana butterscotch toffee caramel cinnabon flavored coffee.
Mind. Blown.
It's just sweet enough, I can taste every ingredient. It's silky smooth and rich. And the temperature is perfect.
I made it right before my telehealth appointment with my pain specialist. Oh she's such a a sweet woman. We talked about my back and it really just hinges on my getting the MRI done. It's scheduled for the 14th but I have another appointment that day. Even though they are hours apart my transportation only takes me to one appointment per day.
I am really glad she's my doctor. She said as soon as we get the MRI done we can schedule injections. I'm quite eager to get it done.
She looked at the X-ray and said she completely understands why I am hurting so much. Finally someone with education having compassion for me.
#hippain #FemoralAcetabularImpingement #BackPain #spinalepidurallipomatosis
Oh so the prevalence of femoral acetabular impingement is 1% but bilateral is even less. My body thinks rare health problems are Pokemon.
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Therapy went well
We did a couples session today. Last night we did a 9 questions journal prompts and I sent it to my therapist this morning. It was a really good page. Some of the questions were pretty deep.
I just had pauley put some CBD cream on my back and hips. I tried to make a little snack in the kitchen and OMG my back started screaming after 5 minutes. Pauley asked what I need and I sat down and directed her on finishing my coffee. Luckily my sandwich was done already. I'm so lucky to have her.
Tomorrow is my birthday. I'm turning 5 with 36 years of experience. Tomorrow for dinner I'm gonna make a garlic butter spinach and smoked gruyere quiche for dinner. I'm excited.
Next culinary adventure will be lamb meatballs with fresh homemade tzatziki sauce. I'm having trouble finding ground lamb.
I can't handle making dinner tonight cuz my back is trashed. I always feel useless when it gets like this. I just gotta hold on till the 31st when I get my X-rays. I'll actually get the results before my doctor.
I'm very anxious. When my lumbar got bad, we found out that I had epidural lipomatosis. Basically fat tissue was crushing my root nerve. My concern is if it was crushing my lumbar, what's the chances it isn't crushing my thoracic and cervical spine too?
I know my cervical spine has a lot of arthritis. I imagine it's effecting my entire spine. So after I get the results, I'll get in touch with my back surgeon and go from there. My hips can't be fixed but my back can. I'm being as proactive and involved in my health care as possible.
I'm thinking about getting some air drying clay to play with here at home. If I enjoy it I might look into sculpture class at a local college.
I'm really tired. I fell asleep early on the couch with Pauley last night. But I didn't take my night meds till after 3am. And I kept waking up every 45 minutes. I think I woke up at 8am.
It's been a day.#Relationships #BackPain #spinalepidurallipomatosis
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