u/FlatPie9994

Hi all- Im 29F and grew up a figure skater... always been hypermobile and chronic neck/back pain. Back in Feb, I had a fall/what they thought was a seizure at first, and woke up never being able to move my hip the same and terrible pain. First it was just osteoarthritis/dysplasia of the left hip... Everything got worse VERY rapidly the past 8 months.

Now I have severe dislocation/osteoarthritis/dysplasia of both - complete bone-on-one, no socket left. I FINALLY found a surgeon willing to do one hip at a time: he specializes in reconstruction. There haven't been any surgeons willing to do it until now because im severely underweight/malnourished due to other health issues.

I lost the ability to walk without heavy reliance on a walker back in July and even a small bit is extremely difficult and so painful. I've lost pretty much all independence and my entire life because of this.

Still trying to decide which hip to do first, but really praying that I'll at least be able to walk again with having the one done. They said everything goes well, it's possible I can get both by the end of the year though!

Also just had major emergency spinal surgery so my whole body is pretty much being replaced at such a young age...

Suggestions which I should get first?

Anyone else need to get both done very badly and taking a staggered approach? How has it been after your first?

https://preview.redd.it/y5n8gbc6oeuh1.png?width=910&format=png&auto=webp&s=d7004b396a530b63c6655c3b69792d007563cda1

I recently joined this group in hopes of finding others with somewhat similar experiences or really anyone to talk to ... Im 29F.

I have had medical issues for several years, including chronic neck/back pain for 10+ years. This past year, everything has gone downhill at a million mph - so much that you probably won't believe everything I am now dealing with.

To try to summarize, I have had an undiagnosed digestive disorder for many years that has gotten worse and worse due to prolonged damage to my digestive system. It's now at the point in which I can't tolerate solid foods at all and pretty much everything other than clear liquid comes back up/doesn't digest. This has caused continual electrolyte and balances, as you can imagine.

Then in February, I had what seemed to be us seizure and woke up the next day able to walk or use my legs the same (I have always been extremely active and I'm also hypermobile). Since then, it has worsened worsened to the point where I can no longer walk without heavy reliance on a walker, which is still extremely hard and limited. Back in late May, I finally found out that it was due to severe, worst-case possible hip osteoarthritis/dysplasia of both hips - bone-on-bone severe.

My hip replacement was originally scheduled for July, but was then canceled by the surgeon because of my malnutrition, electrolyte, imbalances, and extremely low weight. I have seen several surgeons and none of them will even provide me any guidance of how to survive in this pain and misery. no matter how much pain medications I take, nothing works anymore. They have tried me on everything.

About two months ago, I then started experiencing VERY rapid loss of feeling and function in my left side: unable to use my left arm/lift it or hand/grip things. it got so bad so quick that I could not get off of a toilet. I couldn't get in bed alone. I could not get upstairs. Nothing. somehow I ended up seeing a spine specialist who looked at my x-rays and said I needed emergency spinal surgery due to the severity of the damage to my spine and risk of further permanent damage to my body and nerves.

(official diagnosis: C4-5 ACDF and C3-6 posterior cervical instrumentation and fusion for C4-5 bilateral facet dislocation with cervical spinal cord injury...Chronic bilateral facet dislocation at C4-5 with spinal cord compression causing progressive left-sided weakness and numbness, indicating acute cervical myelopathy and spinal cord injury with high risk for further neurologic deterioration.)

I am now ~5 weeks post-surgery and have been worsening and worsening. At the beginning, i did get some function back to my left arm/hand and leg; at least enough to get me up /down stairs, in /out of a car, etc, but my pain is so severe and I still have to rely almost completely on someone to help me do everything.

I try and try and try every single day but nothing helps the pain, stiffness, cramping, and weakness in my hips/legs. It's SO frustrating that everything takes FOREVER, I don't sleep at all because of the pain and discomfort, and I can't even stretch out the cramps like before. I honestly don't know if I'll ever get my life back and really worried that I am going to become completely disabled/wheelchair-bound any day now. I am so desperate to find any surgeon that will do the hip replacement despite my condition. I would give anything and pay any amount of money in the world to get the ability to walk back.

My life has been so miserable for so long and there's no hope or outlook in sight. doctors are completely useless and living in a hospital does not solve anything. I don't have any friends and I have had to be on medical leave from work since February. There's really nothing going in my life anymore and getting up each day is absolute hell. I don't know how much longer I can do this and there is nobody else to turn to for help.

I'm sure nobody here has had this many complex issues destroying them all at once, but if anybody has any advice or can even relate to what I'm going through… I'd love to chat.

If you read all of this, thanks in advance and know that I really appreciate you.

Selling 2 tickets in ORCHESTRA TERRACE, ROW W for Harry Potter & the Cursed Child live at Segerstrom Performing Arts Center @ 8 PM, TODAY, July 18!

Ticket current resale value is $200. Asking just $45, as 2 of our family members are now disabled. :(

Selling 2 tickets in ORCHESTRA TERRACE, ROW W for Harry Potter & the Cursed Child live at Segerstrom Performing Arts Center @ 8 PM, TODAY, July 18!

Ticket current resale value is $200. Asking just $45, as 2 of our family members are now disabled. :(

Hey fellow OC-ers!

I have been looking and looking for a Ramen spot in central/northern OC that has a sesame or curry broth (as opposed to your typical miso, tonktasu, sukiyaki, etc).

There was a spot I used to go to that had the best curry broth ever but they are not around anymore.

Anywhere with ramen or udon!

Any ideas?

Thanks in advance!

I switched to Anthem Blue Cross PPO this year to get out of the torture of Kaiser and am SO glad I did. I've kept all of my healthcare within UCI network because I have a lot of severe conditions/complications. I've been in and out of their Irvine Hospital 4 times already this year - stays varying from 1-3 weeks. The last visit really just frustrated and let me down, losing trust in them and how I was treated. Getting stuck with an awful doctor upon shift rotations and being refused a different provider, I ended up having to leave AMA.

I am at the point where I need to be back in the hospital and admitted thru the ER, but I feel like Im going to get no where new with UCI at this point.

I am thinking of going to Hoag Newport this time to see if I can at least get any new advice, treatment, etc. However, I did go to their Irvine Hospital at one point a few months back and had an even worse experience than UCI... so I am a little torn at what to do.

The one benefit to returning to UCI is that I already know and am comfortable with everything there (the entire staff basically know me at this point because it's a small, new hospital), whereas I dont know what to expect with Hoag in terms of patient experience...

Hoping there might be SOMEONE out there in the reddit community who has experience with both or could just give me some advice. I don't have many people to talk to in my life right now.

Thanks in advance. xoxo

Its been the worst year of my life so far and here we are ending June, more than half way thru.

I have had health issues for a long, long time (10+ years) due to an undiagnosed digestive disorder and chronic pain from being a figure skater growing up. Ive been underweight/malnourished for the past 2 years, which comes with constant electrolyte imbalances, but never to this point.

Long story somewhat shorter... in February, I had a seizure and woke up unable to move my legs and body like usual (which has always been hypermobile and very flexible). Since then, I worsen every day and now am unable to walk without a walker (which is extremely hard as it is) and can't sleep due to pain. I was officially diagnosed with severe end-stage arthritis of both hips back in March and had hip replacement scheduled for July 2. The surgeon just cancelled it and refuses to proceed, however, because my nutritional state is so bad .... all because I have had no cooperation from any of my doctors in writing the continuation order for the TPN (iv nutrition) I was on a month ago. This was basically my stabilization/maintenance "medicine" that would at least give me a chance at still having the surgery.

Ive been in the hospital multiple extended stays, never getting anywhere due to poor care coordination and flaky doctors.

I have been on medical leave from work since March and am at the point where I can no longer tolerate any food at all (everything comes up and extenuates my pain) and lost my ability to walk. The 2 most basic abilities in life that could bring me any sort of purpose or happiness. Thus, Ive been miserable beyond belief, crying myself to sleep every night, and have no desire to talk to anyone.

Hoping anyone can provide some sort of advice or, well anything. Everything seems to worsen and I really see no sense of hope anymore.

I was thinking today about trying one of those eScooters to be able to get around without grimacing in pain every second.... Thoughts?

Thanks to anyone who reads and lends an ear. Appreciate at least having reddit during this time.

I always see or hear about new coffee shops opening in and around OC in passing, but then when I actually want to go check one out, I'm at a loss! (Yes, I need to do a better job of actually writing these down LOL).

So, what's your favorite new/up-and-coming coffee spot? Or just your favorite in general!

I know this post already exists, but I am bringing it back to the surface for the summer ahead and need for something fun to occupy my time... (aka, coffee shop exploring).

Thanks in advance!!

Hi OC family.
Currently suffering from a lot of severe health issues & complications that have taken away my love for food & just everything honestly.
At this point, I am on a liquid diet (think dysphagia pureed diet) which has been very hard, despite how creative I try to get. I can't walk and am in excruciating pain 24/7, so no desire to cook anymore either.

So, I had an idea and thought I'd try it out...
I'm hoping to find someone local who has a love for cooking and wants to earn some extra cash doing something that makes them happy. OR any recommendations if you know someone!
If you're interested & have a knack for making soups & getting creative with a blender, drop me a message!

(Hope this post is allowed!)