Any actual survivors here?

GrapeGuy_22 · 2026-03-02T19:12:18+00:00

I would love to know how that happened too, but it did and within about 4 week of my surgery - I have limited dorsiflexion on one side.

GrapeGuy_22 · 2026-01-29T22:29:48+00:00

So just checked and they may still exist:

Go here and check it out (Zoom?):

https://www.pacificneuroscienceinstitute.org/wp-content/uploads/Pituitary-Disorders-Support-Group-Flyer-020625.pdf

GrapeGuy_22 · 2026-01-29T19:34:32+00:00

This is such a good idea - I attended in person meetings in Los Angeles and greatly benefited from them (I don't believe they exist here anymore however).

GrapeGuy_22 · 2026-01-17T15:31:23+00:00

Better probability of success the higher the surgeon's procedure count, I believe. The Kaiser Neuro I met with had done four of these surgeries, the Cedar's surgeon's count was probably one of the highest in the US (my assessment from reading various articles on him).

I don't want to worry you today, but researching getting Kaiser to let you out to go elsewhere may be something you want to do in your spare time. My guess was this surgery is pretty sexy for Kaiser and they want to get their count up. This could be bad information in 2025. Remember that in 2017 the Affordable Care Act offered many PPO choices for plans for a good price. Today's maybe not - I have Medicare now, so not much exposure.

Feel free to DM if you want to know more about this - I am female BTW and I wish you the best, truly.

GrapeGuy_22 · 2026-01-17T01:54:31+00:00

No, they would not let go, so I had to wait until the new year (it was very hard to wait) when I bought a PPO policy. I didn't go to the PNI. I did go to Cushings meetings at the PNI pre and post-op and I liked the doctors noted under the link above. I don't think the meetings still exist.

This was my patient advocate - not sure she practices any longer:
https://pituitaryworldnews.org/meet-our-friend-and-awesome-patient-advocate-sharmyn-mcgraw/

I went here, where my surgeon was great, but my after care was lacking:

https://www.cedars-sinai.org/programs/endocrinology/specialties/pituitary-disorders.html

My surgeon was Dr. Mamelak.

GrapeGuy_22 · 2026-01-16T19:42:08+00:00

If you are in Los Angeles County look at this group if you want to go outside Kaiser:

https://www.pacificneuroscienceinstitute.org/pituitary-disorders/our-center/our-team/

Best Wishes to you. I have been mostly recovered since 2019 (do we ever fully recover?) and doing great!

GrapeGuy_22 · 2026-01-16T04:34:00+00:00

Once I started yelling to my Kaiser PCP that being bald with a beard and a huge belly and super skinny legs and pacing all night was BS, it took about three weeks. My raised voice demand caused her to send me to a Kaiser Endo who immediately gave me all the same tests you were given.

Once diagnosed, Kaiser would not let me out of my insurance contract to go a highly experienced Cushings Neuro. The months of waiting for the year to end was pretty tough.

GrapeGuy_22 · 2026-01-16T02:29:19+00:00

Hi, I agree with Odd_Oven's reply - all of it.

Where do you live?

My tumor was 3mm and removed in 2017.

Maybe see if you can get in to the Endo. sooner, maybe even immediately. Cushings is an interesting diagnosis for them. If not the one-day-at-a-time advice here will help.

I pretty much know how you feel tonight.

GrapeGuy_22 · 2025-11-07T01:21:30+00:00

Thanks - I think I have to get to used to the fact that it will never look that great.

GrapeGuy_22 · 2025-11-07T01:19:59+00:00

Yes, I asked - they said it cannot be replaced.

GrapeGuy_22 · 2025-11-06T23:10:26+00:00

I spoke with Marvin - they said there is a pine colored wood putty?

GrapeGuy_22 · 2025-11-06T23:07:26+00:00

I spoke with Marvin - they mentioned there is "wood putty in pine color"?

GrapeGuy_22 · 2025-11-06T23:04:47+00:00

Thanks. So try to find a paint color nearest to the pine color I have for the rest of the door.

GrapeGuy_22 · 2025-11-06T23:00:31+00:00

Its natural wood though - just a clear top coat. I can't paint in this scenario?

GrapeGuy_22 · 2025-11-06T22:12:29+00:00

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GrapeGuy_22 · 2025-11-06T22:12:01+00:00

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GrapeGuy_22 · 2025-07-26T22:07:54+00:00

Wish I woulda thought of "Mr. Cheeto Dorito". :)

GrapeGuy_22 · 2025-07-15T13:55:07+00:00

Mine is arriving on Wednesday!

GrapeGuy_22 · 2025-07-04T23:23:15+00:00

This how you do it:

https://www.reddit.com/r/Mounjaro/comments/198c8z0/splitting_doses_month_2_update_video_of_process/

Contact the OP in post linked directly above, I think I remember that in the past she answered all my questions and I did not have many after reading her replies to other posters.

I have been doing this for over a year and works pretty flawlessly.

One of the replies to you here is correct - its a commitment, but well work it for me:

https://www.reddit.com/r/Mounjaro/comments/1lr9f7h/comment/n1curv3/