u/Mama_Dr_954

I had my pit surgery 5 days ago at a high volume pituitary center. I had an excellent experience and everything that could have gone right, did. I needed no fat graft, no lumbar drain, etc. Both tumors were excised with clear margins, and I didn’t develop any DI or other issues while in the hospital.

I felt like I learned so many good things from this group but wish I would have known a few things before doing it:

1. The post op pain isn’t a joke - it was quite painful for me and I’ve had numerous surgeries. It felt like I got hit in the face by a truck and the pain lasted strong for the first 3 days, radiating out from my nose into a headache that took over my whole head. I didn’t need more than one day of oxy post my last c section and I’m still taking oxy at bedtime for the headache pain now.

2. BLOOD CLOTS! I didn’t think I’d seen these mentioned here - apparently Cushing patients are at high risk for DVTs and other clots. I have a coagulation disorder where I don’t clot and still had to have 2X daily heparin injections while inpatient, do a venous ultrasound before discharge, and still have to be on lovonox for 30 days. Was not prepared for that at all.

3. Hydrocortisone protocol - make sure you understand your centers protocol before you go in. Mine had a set “schedule” that as long as you decreased significantly but didn’t zero out, you end up on a 30 day protocol that leads to a taper. I thought it would be more individualized to my specific situation.

4. The congestion is seriously under emphasized on how bad it sucks. I HATE congestion and I didn’t think about how hard this would be for me. It’s the most miserable part by far for me.

5. How much water you’ll want to drink bc of how dry your mouth is from so much mouth breathing. And thay they’ll check your urine basically every time you pee and then they’ll be in there forever.

6. Nausea was bad for me (still is) and so is the constipation and you have to be so careful obv about these two things and still haven’t figured it out 5 days out.

I’m hoping to keep figuring things out and this will all be worth it. Any positive feedback would be so appreciated at this time!

Wondering if anyone has been in this situation and would have encouragement or good ideas. My 7yo co-slept from 3-6 and recently moved back to her own room. She would prefer to continue to co-sleep but has been doing okay. My son is 2.5yo and has co-slept since 4mo. He’s not spent one night away from me or my husband. He’s comfortable with either me or my husband but does like to fall asleep while laying on an arm and then we can move him off to the side and end up with him on the edge so I sleep better. I’m having brain surgery in 1 week. We were told 4-6w and I had planned on working on him sleeping with a bit more independence because he’ll be with his grandma for the first time ever. Now we have no time and I’m so worried about his sleep. I’m hoping grandma, sister and him can all sleep in our king bed so there is enough room. But we also have a kind of unusual sleep schedule because of my health and my husbands work. Both me and my kids usually nap together from 2-5P and then bedtime is around 10/1030P with wake up around 730/8A. I feel totally stuck. He loves his grandma but we’ve never tried to sleep away from him. He doesn’t get to see her very often either - about 1X per month as she lives 2h away. It’s a complicated surgery and my husband basically needs to be with me at the hospital the whole time. The hospital is 3h away. I had planned to just 1) confirm grandma is willing to try this and 2) hope my kids can cuddle each other? I wish we had more time but we just don’t. Grandma is wonderful but does have some issues like restless leg and leg cramps so I’m worried about her being able to do nap/bedtime. We’re also know well be there at least 3 nights but could be longer. I’m not so worried if he doesn’t nap but more if he’s not sleeping no one will function well. If anyone has any suggestions or encouragement from a similar situation I’d love to hear it! Thank you!

Wondering if anyone has been in this situation and would have encouragement or good ideas. My 7yo co-slept from 3-6 and recently moved back to her own room. She would prefer to continue to co-sleep but has been doing okay. My son is 2.5yo and has co-slept since 4mo. He’s not spent one night away from me or my husband. He’s comfortable with either me or my husband but does like to fall asleep while laying on an arm and then we can move him off to the side and end up with him on the edge so I sleep better. I’m having brain surgery in 1 week. We were told 4-6w and I had planned on working on him sleeping with a bit more independence because he’ll be with his grandma for the first time ever. Now we have no time and I’m so worried about his sleep. I’m hoping grandma, sister and him can all sleep in our king bed so there is enough room. But we also have a kind of unusual sleep schedule because of my health and my husbands work. Both me and my kids usually nap together from 2-5P and then bedtime is around 10/1030P with wake up around 730/8A. I feel totally stuck. He loves his grandma but we’ve never tried to sleep away from him. It’s a complicated surgery and my husband basically needs to be with me at the hospital the whole time. The hospital is 3h away. I had planned to just 1) confirm grandma is willing to try this and 2) hope my kids can cuddle each other? I wish we had more time but we just don’t. Grandma is wonderful but does have some issues like restless leg and leg cramps so I’m worried about her being able to do nap/bedtime. We’re also know well be there at least 3 nights but could be longer. I’m not so worried if he doesn’t nap but more if he’s not sleeping no one will function well. If anyone has any suggestions or encouragement from a similar situation I’d love to hear it! Thank you!

I’ve seen many times in this group the importance of getting an MRI done using the 3T or specialist protocols. My endo in my smaller area used a pituitary protocol on a regular MRI and there was a maybe lesion maybe cyst seen. Got IPSS done and it said both sides were “on”. Surgery is next week and the surgeon (at U Mich - a major pituitary center) did the specialized MRI in prep for the surgery and they found 2 “new” tumors that match the IPSS results! It’s wild that the other MRI couldn’t see them - and they aren’t that small - each about 4mm where the midline lesion is 5mm. Just had to share how wild this whole thing has been and so crazy how non-pituitary centers handle Cushings.

I am finally on schedule to have my pituitary tumor removed in August! I’m hopeful and anxious. I’m wondering about experiences for those who had to travel for their surgery and how it went? I’m in Southwest Michigan, about 2.5-3h away from UMich Hospital. It sounds like we can stay (my husband and two small kids as we have no real help) either at the hotel in the hospital or a very close hotel. However, based on what I’ve heard so far, the timing is really unpredictable for when you get to go home, etc.

How rough is traveling? We’ll be driving. I get insane motion sickness (like once I got motion sickness going for a walk with my winter coat hood up, intense motion sick) so I’m very worried about this drive home. What did you do to best get through travel? Did you choose to stay closer for longer? I don’t think I’d be super comfortable in a hotel and 2.5h isn’t too too bad but I’m just curious about peoples experiences and if anyone had any suggestions? Thank you!

I spent all night looking for more what to expect about IPSS and wanted to share my experience from today in case someone is looking for more details like I was!

My procedure was at U Mich which overall was a positive experience. I was told by the neuro radiology group that this had no sedation during my pre-op screen. This was accurate and definitely sent me into a panic attack. They were super kind. They had the nurse anesthesiologist come and explain what they could give me (anti-nausea for the compounds injected during the procedure). I did basically cry the whole time but it was okay.

They wheeled me back and put me on the table - as someone who has had so many procedures it was bizarre to be totally awake. They taped my head down to the board and taped up my stomach to access the groin sights. This was a bit nerve wracking for me as it was physically restraining and I didn’t know to expect that. They prepped the sites which was also uncomfortable - they kept readjusting tape and drapings which definitely was not fun but was distracting from being taped down to the table. I was given my anti-nauseas (yay) and then they started the catheter insertions. They did a lidocaine gel and then lidocaine injections, right then left. The right side was numbed well and it was just weird pressure while they got the catheter inserted. My left side did not numb up despite them adding more lidocaine so it felt shaper and was one of the more painful things. But they got it inserted. Then they did some things leading to putting the wire leads though the veins - in the chest I did feel some pressure but no pain. They left in lower and warned me as they went into the sampling space that I may experience pressure in my ears. It felt like my ears were popping over and over and I had constant pressure like a headache during the whole procedure. They repeated on the left side. Once everything was in (all guided by imaging) they give you heparin to keep your blood from clotting. They collect baseline samples. Then they dose you with different compounds and do timed collections of blood from the periphery & the right and left.

The first compound I didn’t feel much of anything (I can’t remember which one this was) and they took timed blood draws at 1 min, 3 min, 5 min and 10 min. They then did a second compound that made me feel hot and made my heart race but it lasted like 30 seconds. The timed draws were repeated. They then took everything out and did a manual compression for stopping the bleeding at the venous puncture sites. These were then sterile dry wrapped. The proceduralist I had was phenomenal. The OR was booked for 4h and I only spent 2h in, one hour being prepped. Before they untapped me and did the pressure holds they took pity on me and gave me versed and fentanyl to be comfortable during the bed rest & the pressure compressions. Once I was dry wrapped I only had to be prone for 1 hour which I took a nice nap because of the post procedure drugs. They checked for bleeding after being upright for another 30 min and then made me walk & use the bathroom before discharge. My team was amazing and it went so much quicker than we had expected based on the pre-op info we were given.

I had a hours long drive home and was pretty out of it still so was quite comfortable. Now tonight I have a mild headache and ear soreness. The incisions are tender but not too bad. Was cleared to go back on all my medications right away. Cannot shower for 48h so wounds don’t get wet and have a light lifting restriction for a week.

It was not my favorite thing by far. I wish I would have known some details to better mentally prepare. But it wasn’t as bad as my head made it out to be. Mostly because the team was so calm and kind and just wonderful to explain what was happening in real time.

Anyway, sorry for how long but I hope that this is helpful to anyone who has to prepare for IPSS and wants more details. Also of note - UM was very clear that most/best recommendations for these are totally with no sedation compounds at all which isn’t what I saw I saw discussed here the most (some form of conscious sedation). This was the scariest part and was hard but doable.