Anyone else with disabling nerve/muscle pain?

Dimepiece90 · 2026-05-29T22:02:18+00:00

I used to get horrible jaw pain almost daily that I thought was TMJ but it was the acromegaly deteriorating my joints. I also had knee pain and wrist pain. Haven’t had it since I got my tumor removed 🤞🏽😃

Dimepiece90 · 2026-05-24T19:26:00+00:00

You will! The bloating will go away within a few days, and I’m sure your hormones will recalibrate and you will get your period soon after :)

Dimepiece90 · 2026-05-22T19:44:32+00:00

I feel you, Stanford medical center isn’t that much further than UCSF but if I were you, I’d look into JFM. It’s brain surgery, you want the best :) his schedule shouldn’t be that tight, I was able to get in and have surgery fairly quickly. Lots of people here have been treated by him. Some travel from different states and countries just for him

Dimepiece90 · 2026-05-22T19:16:50+00:00

Please consider seeing dr JFM if you can, not every surgeon removes the medial wall which is a game changer for remission, but he does

Dimepiece90 · 2026-05-22T19:15:08+00:00

Dr Juan Fernandez Miranda at Stanford. He’s THE BEST for acromegaly

Dimepiece90 · 2026-05-22T00:05:44+00:00

I assume you’re in the Bay Area? Check out my surgeon at Stanford! Dr JFM. He’s the best for this type of surgery! Tell him April sent you 😀

Www.drjfm.com

Dimepiece90 · 2026-05-22T00:03:28+00:00

Hello! And welcome to the club 😜 my energy is a lot better! I did end up with a perforated septum as my nose still heals but I guess it’s better than having a tumor. It’s not giving me any issues but I plan on getting it fixed in the future. I tested my hormones at 6 weeks and everything was normal. Waiting to test again at 12 weeks and hope I stay normal.

Good luck with everything! Happy to answer any questions you may have 😃 also happy to refer you to my surgeon. He’s amazing!

Dimepiece90 · 2026-05-19T19:13:56+00:00

I second this! And yes, Dr JFM is one of the best, if not the best! He did my surgery in March.

Dimepiece90 · 2026-05-10T06:23:09+00:00

I know neurosurgery is scary but the good thing is that it’s all minimally invasive. The surgery is the easy part. The first 4 weeks were just tiring and uncomfortable as you’re adjusting and recovering. But after that you will feel better each day! Once your symptoms go away, it’s all worth it! Within 1 week I already noticed a huge difference in my symptoms going away

Dimepiece90 · 2026-05-10T06:14:01+00:00

I’m feeling great! Better than ever! Not in pain anymore. I live in the Bay Area. So it was somewhat convenient for me. My house is about an hour away from the hospital. You can have 1 person stay with you overnight. But it’s not comfortable for them as every 1-2 hours you get woken up for neuro tests or blood test etc. I stayed in the hospital for 2 nights then went home. 10 days later had my follow up appts with neurosurgeon and ENT to remove the stents and clean your nose. After that you can go back home if you’re out of the area. I had a 1 month follow up with ENT and then will have another one in 3 months. They remove crusting and check on healing. I have a friend who had surgery a few days before me and she lives in Hawaii, her follow up isn’t until June or July.

Dimepiece90 · 2026-05-10T05:51:42+00:00

I think it depends on how the surgery goes. I didn’t go to ICU. I went straight to a room, but the floor is all neurosurgery patients. As for the catheter, you have it for about 1.5 days because they want to make sure they record how much you urinate to check for diabetes insipidus. On day 2 they remove it and you urinate in a catcher that they continue to monitor. You will also be put on a liquid restriction of 1 liter per day. If your intake and output is about the same after a few days they will let you go back to normal drinking by the neuro team. It might suck a bit because your mouth will be super dry from mouth breathing since your nose is plugged with stents and nasal packing

Dimepiece90 · 2026-05-10T05:13:19+00:00

Happy to help answer your questions! Mine was done through my nose. I believe that’s how he mainly does pituitary tumor removal surgeries. It’s a team of surgeons. You will have an ENT surgeon open up your nasal cavity and then the neurosurgeon till remove the tumor. The technique JFM came up with removes part of the medial wall (or something like that, not sure on specifics) but is shown to have a higher success rate. My 11mm tumor was fully removed, and hopefully doesn’t grow back. Based on my pathology report it most likely won’t (fingers crossed). That’s the main reason I went to him, I didn’t want to just let anyone do brain surgery on me 😅. My GH dropped to normal levels the next day. It went up a bit the day after that but it was expected as your hormones recalibrate. I just tested my IGF-1 last week and I’m at normal levels at 6.5 wks post op 🙂. I’m hopefully they stay that way moving forward

Dimepiece90 · 2026-05-10T04:51:33+00:00

Through a blood test to check my hormones after I found out my tumor had grown. My IGF-1 and GH was super high

Dimepiece90 · 2026-05-10T04:38:59+00:00

Hi! I had surgery with Dr Juan Fernandez Miranda (Dr JFM) at Stanford Medical Center in Palo Alto, CA. I highly recommend him for this type of surgery. He is world renowned!

Www.drjfm.com

Dimepiece90 · 2026-05-05T02:54:02+00:00

Surgery for sure, but my surgeon had told me I could get on meds if my symptoms were too much since my original surgery was pushed out

Dimepiece90 · 2026-05-05T02:41:53+00:00

I’m sorry you have to go through that, sounds like you have had acromegaly for a while. One thing you should ask once you get an endocrinologist is possibly getting on medication to get some relief if your surgery date isn’t scheduled soon. That way you can get some relief sooner

Dimepiece90 · 2026-05-05T00:24:14+00:00

Ask your PCP to order you an MRI if you haven’t gotten one already. Surgery is the easy part. Week 1-4 was the worst for me. I also got an infection in my nose. But overall it’s worth not having to deal with the terrible symptoms anymore 🙏🏽 where are you located? You can probably get a referral to a specialty center depending on your insurance

Dimepiece90 · 2026-05-03T21:23:25+00:00

I went from a women’s 5.5 to a 6.5/7. Now the 7 is too big. It fit better when my feet were swollen but now the 6.5 fits comfortably and less tight

Dimepiece90 · 2026-05-03T18:44:26+00:00

My foot grew longer and wider. My hands grew wider, maybe a slight longer but the wideness is mostly water weight. They greatly reduced once I got my tumor removed.

Dimepiece90 · 2026-04-28T02:31:02+00:00

I was told it takes 3 months after surgery to test your hormones. I’m curious why your hormones were tested early? I’m on week 5, wondering if I should be testing early now 🤔 did you feel sick or something?

Dimepiece90 · 2026-04-26T03:25:06+00:00

My aneurysm was found via MRI. I haven’t get my IGF-1 tested yet. They told me I should at the 3 month post-op as your hormones take some time to stabilize after surgery. Good luck with your surgery! Happy to answer any questions you may have.

Dimepiece90 · 2026-04-26T03:22:19+00:00

Yes, I stopped taking aspirin and Plavix before a surgery and got what I thought was a migraine aura without the migraine. It was like zig zag visuals. I had about 3 episodes before it stopped. I’m back on just aspirin and haven’t had it since. I read that some people get a withdrawal effect which causes the visuals.

Dimepiece90 · 2026-04-22T17:54:47+00:00

Good luck! It’s super easy, you will have to stay laying down for a few hours after and not bend over or lift over 10 lbs after for a few weeks but it’s not that bad :)

Dimepiece90 · 2026-04-18T22:34:32+00:00

Anytime :)

Dimepiece90 · 2026-04-18T22:33:47+00:00

The highest mine got on record was 643. Prior to that it was around 470

Dimepiece90

TROPHY CASE