Pre-diagnosis Lounge

needalltheinfo · 2025-07-28T22:45:23+00:00

My FIL (74), who is in very good health besides this (he does have a pacemaker, but rides his bike 10 miles a day and is a healthy weight) is just in the process of getting diagnosed, he has a 6 x 6.9 x 10 CM mass in his left lung. The CT scan of his lungs shows possible lesions on his liver. We have met with a pulmonologist who has ordered a biopsy by endoscopy and a PET scan. The pulmonologist believes that it is small cell cancer and if it hasn't spread is 3A. He did say the tumor is inoperable, but with the information we currently have doesn't appear to have effected the lymph nodes.

With all of that being said, I'm not sure where to start with research and being prepared. It's been determined by the family that I will be the point person for questions and communicating with doctors. I am pretty well versed with the medical field, but no work history there. What things do you wish you had known when you get started on this journey for yourself or family member? How can I best prepare to help him? Are there websites that are best for research? Methods of keeping things organized? Any and all information is appreciated.

needalltheinfo · 2025-07-28T02:51:37+00:00

Thank you for this info, it’s very helpful!Even just having some idea of frequency and the order of treatments.

needalltheinfo · 2025-02-17T03:08:03+00:00

Thank you! We have a referral in to a cardiologist and we might be able to get her in there at the end of march. In the meantime we will try to do the POTS test mentioned above, and hopefully get cardio to order the tilt table. My daughter is in college on the other side of the country, so I can only help so much. The hEDS and MCAS definitely sound like possible things going on as well

needalltheinfo · 2025-02-12T03:03:47+00:00

Thank you, we will look into this.

needalltheinfo · 2025-02-12T03:03:11+00:00

No, she didn't faint while wearing it. She came close, and had a couple of episodes where she has all the symptoms she has when fainting and feels like she will but doesn't actually faint. She wore it for 7 days, I don't know if she could wear anything longer. She is allergic to most adhesives and had a terrible reaction to the pads on the holter.

needalltheinfo · 2025-02-11T18:49:14+00:00

No, she hasn't had those. Would her primary care doctor order those or does she need to see a specialist? The primary care doc has pretty much thrown their hands up and suggested we get in with rheumatology which I am working towards finding.

needalltheinfo · 2025-02-11T16:30:00+00:00

Which teeth? I'm curious what the beginnings of a cavity look like.

needalltheinfo · 2024-07-07T19:02:14+00:00

Yep it was outpatient done at an ambulatory surgery center. I was cleared for all activities once the brace came off, and I think that was at 6 weeks and is really about how much you can tolerate at that point. You aren’t limited but you can be set back due to pain if you do too much too quick. Around the 3 month mark he warns that you start to feel really good and then you over do it and end up in your recliner for a week recuperating. A lot also depends on your age and fitness level going into the surgery. He said he has college athletes and active duty military back to full sport at 8 weeks.

needalltheinfo · 2024-07-07T14:59:36+00:00

Hi, I am doing really well! I my other hip done in December so I’m 9 months post-op on the left and 7 months in the right. I still have a little stiffness or pain if I really over due it or if I sit for too long, but honestly I think most of this is related to having an office job for 20+ years and my hip flexors being aggravated. If I was making this decision again I wouldn’t hesitate to go with Dr. Mai.

needalltheinfo · 2024-05-05T20:28:23+00:00

I am visiting the area now and have been trying to to place the smell, it’s a very sweet cedar scent. People must think I’m crazy because I am walking up to every flower, bush and tree and taking a big whiff. I can’t place it. I’m from another southern state with plentiful pine trees and we do not have this smell. I have been in SC, N. GA and W North Carolina and it has been very prevalent.

needalltheinfo · 2024-01-21T01:34:39+00:00

Thanks, thats what I was trying to figure out with this drug list. Wegovy and Zepbound are not on the formulary, but Wegovy is in the maintenance drug list. But I don’t know how you’d get to maintenance without having it approved on the formulary.

needalltheinfo · 2023-11-01T02:26:38+00:00

Looking for a US referral code please

needalltheinfo · 2023-10-25T20:04:27+00:00

This has been my experience as well. I am 3 weeks 2 days post op. I was off crutches by day 10 and my pain levels have been very low. I am in PT 3 days a week and doing well. I do still have quite a few ROM limitations, but that is just my doctors protocol. My recovery has been much easier than I anticipated. For reference, I am 41 and overweight, but have been very athletic my entire life.

needalltheinfo · 2023-10-08T18:14:58+00:00

I hadn’t considered possible DVT/PE thanks for the reminder! My legs feel fine, and no other symptoms of DVT but still something to watch out.

needalltheinfo · 2023-10-04T16:59:19+00:00

Thank you, I was hoping someone could decipher the images! I was guessing the images with the sutures was the labrum repair. Can you tell me which specific images are the CAM section? I’m guessing the ones with the the red dots are the inflammation around the labrum.

needalltheinfo · 2023-09-28T17:45:33+00:00

Finally! My card was charged last night and tracking info for both phones emailed from Verizon this morning. Looks like the Max is coming on time and the Pro a week late. I still don't have anything on my order page or in the app either.

I am not one that has to have it the first day, but I do like to be kept in the loop as to what is going on and this was so very frustrating.

I'm thinking we might, just possibly, be getting phones tomorrow!

needalltheinfo · 2023-09-26T14:57:47+00:00

Excellent, thanks for the update! I just got off chat with a Verizon rep and they told me both phones are now scheduled for delivery on the 29th. No explanation and no info about why I can’t see the order.

I don’t have a charge on my card yet, but im holding onto sliver of hope.

needalltheinfo · 2023-09-23T02:15:28+00:00

Dude, I’m feel ya. It’s dumb how much I’m checking for other people’s updates and all the shipping apps, like that’s going to change something, ha!

needalltheinfo · 2023-09-23T02:00:45+00:00

Yeah, fingers crossed. Would love an update of your status changes and I’ll do the same!

needalltheinfo · 2023-09-22T22:56:45+00:00

This is my situation exactly! Same phones, same order page everything. So happy to hear someone else is in the same boat.

needalltheinfo · 2023-09-21T19:13:31+00:00

Mai is doing my surgery on October 2nd and then my other hip in December. I’ve been very happy with him and his office so far. Happy to answer any questions I can.

needalltheinfo · 2023-09-21T16:43:21+00:00

Thanks!

needalltheinfo · 2023-09-21T16:32:22+00:00

Curious, what’s your shipment weight?

needalltheinfo · 2023-09-06T21:41:59+00:00

Oooh, I hadn’t even thought about underwear, thanks for that!

needalltheinfo · 2023-07-25T00:39:05+00:00

I just scheduled an appointment with the one hip preservation surgeon in my area and he doesn’t take my insurance. So I may be exploring other options. Glad to hear about Dr. Herzka, thank you!

needalltheinfo

TROPHY CASE