u/TrifleActual534

I am in the process of red establishing care at OHSU. After a frustrating experience at Legacy and taking 6 months to finally scratch the surface of what is going on I have decided to change other specialists to OHSU. I realize it will prolong me waiting to see them even longer than I have been waiting but asked my ACHD cardiologists to refer me to GI, Gyno, PM&R , and tbd if I need other specialists involved but for now that what I also have going on. My question is will they typically send those referrals? I can’t get into any primary care and my current one stinks and plus I’d like to change to OHSU. I also have an HMO plan so don’t necessarily need primary to refer me either. If she does refer me could she get me in sooner?

Good news is for the heart side of things she ordered a bunch of tests and feel like I will get to the bottom of things on the cardiovascular front at OHSU.

I was born with ACHD. I am 29. Born with COA or my Aorta. Had a failed Ross procedure when I was born. Got a St. Jude Aortic valve when I was 5. Then got a melody pulmonary at 13. Also have had my fair share of Angios and stents in my veins and arteries. Both times has to do open heart surgery since cath wasn't working. I’ll spare you the rest but trying to get into an ACHD cardiologist since my regular cardiologist sucks. I have dizziness and extreme fatigue and discolored skin. I also have other health things but I feel my melody valve needs replacement which scares me. Has anyone had these valves last this long without operation? I am a very active person and now can’t do most thing. I have full body tingling which can be other things but it feels like a circulation issue. I had an ok echo according to my current cardiologist but in my experience that doesn’t mean anything.

It’s been a long frustrating journey but long story short I have a 1.8cm LLD finally in shoes with a lift. My pelvis is tilted due to this causing major nerve pain throughout possibly. I also have a small disc protrusion in my S1 but my doctor said that this shouldn’t be causing me pain 🙄. I cant do any PT exercises cuz it will trigger nerve pain. I am at my wits end. I need my mobility back. It is my life. I am struggling to walk , sit, sleep, twist , do any type of activity without nerve related pain. My doctor is minimizing what I tell him and is like you have lupus and I’m like is that some google AI diagnosis? Got tested for lupus negative like I said would be. Like it does all connect to me but I also think there is more damaged possibly which I hope not. I would just like to check since this has gone on for months. It makes sense once my pelvis is not tilted I should be ok but I fear there is no way out of this pain. It’s difficult to cuz I feel it mostly when I am in motion and at night when laying down and or sitting. When I go do activity extreme cramping and sharp muscle weakness and when sitting or standing tingling sharp pain. Anyways not really a question more just venting and frustrated with the healthcare system as a whole.

So I was reading you only correct about 70% of your structural LLD. I have been 6mm and definitely need more now. I am in orthotics with 5mm and then plan to get 8mm on the shoe. Hopefully ready by Saturday. My LLD is 18mm so 70% of that would be 12.6 so it would be a total of 13mm. I was curious though since it’s the same price should I get 10mm on the shoe for a total of 15mm I just don’t want it to be to much or to little should I stick to the 8mm. My foot doctor said anywhere from 8-10mm. I know your body to adjust but for the sake of cost I’m just curious if anyone has had success with wearing 70% of your LLD?

Finally got an mri but it said I have a mild disk protrusion that isn’t impinging any nerves. I am in so much pain. Also this has been going on for about 6 months. I’ve been in pt. I don’t want medications. I’ve been resting the pain is getting worse.

I have a massage scheduled tomorrow and it has really been helping my back and hip pain. I have my low back MRI on Wednesday. Would getting the massage mess with my results because things are loose again? Might be a stupid question but I do feel a ton better after the massage for about a week…

I cannot find a running shoe that feels good and will fit my orthotics and be good to add a lift to run/ walk in. I’m looking to add about 8mm to it… any suggestions?

Has anyone ever had Sciatica or other nerve type pain from an LLD? Specifically the pain started in my feet and I can barely walk without pain. Still convinced it’s more but getting an MRI of my low back which doesn’t hurt all the time. It’s mostly my hips.

I’ve been in pain for months now but finally getting my shoes modified and orthotics with a lift then will start physical therapy. My foot doctor said a 1.8cm LLD is significant. An orthopedist I saw said it’s not. When you google it I says that anything over 2.0cm will cause you problem. I know I’m close but it’s technically not 2cm. Regardless I feel like I am on the right path forward. I have been in Pt for months but it wasn’t getting better due to my LLD. Hopefully will be out of full body pain sooner than later. I was thinking from an orthopedist standpoint that like it’s not significant enough for surgery? So you treat it with just a lift and pt maybe? But it’s not something that you just don’t treat and can do pt without a lift.

Is it just a babysitting job? Does anyone have experience working here?

I am 29 and I feel like something more is wrong but my entire body has hurt since January. Had multiple doctors and physical therapists diagnose wrong things and it has progressively gotten worse. I finally got a standing xray to confirm. I’m not sure what to do at this point. I am waiting on an approval for an MRI still of my low back. I honestly want an entire body MRI but I know it doesn’t work like that. Also my primary is like pills and won’t give me a neurology referral. I have had migraines my whole life from it as well. I also have a ton of upper body pain too. I am getting fitted for Orthotics with a lift this week but they are still a month out. I was running half marathons last year now barely being able to walk my dog. I feel like this will never end I won’t get back to the things I love! I feel like shit everyday and want to cry. Anyways I have pain in my back , hips, knees , ankles and bottom of feet. I don’t and to sound insane to my doctors also but I have been around the block with medical stuff my whole life. Has anyone else had this experience or have any suggestions on how to make it through to the other side?

I went in today and it seems they aren’t showing the playlists for the classes. That’s how I typically choose classes! What is this?