now what? (part 16) - pituitary brain tumor journey

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  • เผยแพร่เมื่อ 4 ก.พ. 2025

ความคิดเห็น • 23

  • @janetpotter-v3v
    @janetpotter-v3v หลายเดือนก่อน

    You are doing a good job taking one day at a time. I find that God does provide what you need when you need it. Being grateful for the small miracles. Finding a septic pumper, my winter coat and yes finally found my winter boots. All my stuff I had to pack in totes and boxes to move. Hang on to the little blessings. Finding your videos is a blessing in my pituitary tumour journey.

  • @rachelmills8079
    @rachelmills8079 2 หลายเดือนก่อน +1

    Continued prayers for healing

  • @Wendi-e6n
    @Wendi-e6n หลายเดือนก่อน

    I had my surgery on july 19th of 2024 they discovered mine a year before i spent about 6 hours in surgery my surgery went well not cancer thank god just went back for mri 6 months check up not growing back looks good my surgery caused me to have anxiety panic attacks for 3 months i stayed in room and didnt interact with family i was full of fear i was on anxiety meds every 5 to 6 hours im getting out and socializing now but im not able to go back to work get very nervous around people and my job is care giving ...good luck to you and many prayers

  • @GreenSparrow-l6z
    @GreenSparrow-l6z 2 หลายเดือนก่อน

    Hi Jessie, hope you are doing well ! I have a pituatary adenoma ( prolactinoma ). Mine was still at a micro stage when I caught it. But, high propactin suppresses testosterone, so that is how i caught mine. I have read your mri report and other information you posted on your website. You didn't mention your prolactin being high, so I am assuming your testosterone and thyroid hormone is low because your tumour killed some of your healthy pituatary cells. I was curious what your testosterone and thyroid was when you had the tumoir, and what it is now months post operation. Have your noticed that they are recovering ( Testosterone, TSH, T3 , and T4 ). Thanks!

  • @loracraterly7417
    @loracraterly7417 หลายเดือนก่อน

    Food stamps can also help

  • @finboyYYC
    @finboyYYC 2 หลายเดือนก่อน +1

    Even though you are having sight trouble, can you do some videos on your approach and process to photography?

    • @JesseSchpakowski
      @JesseSchpakowski  2 หลายเดือนก่อน

      So I haven't actually picked up my camera in almost a year. I've thought about giving it a try recently. My biggest challenge with that is double vision and not being able to see the camera settings.

    • @SassyO100
      @SassyO100 หลายเดือนก่อน

      ⁠​⁠@@JesseSchpakowskiJesse I’m a new subscriber and am going through the early investigations of pituitary gland issues and symptoms. But im very much about people being able to live their purpose. The goal posts for you in this moment have shifted and I wonder if you’ve thought about inspiring aspiring photographers by through finding a way to share your knowledge, your formula for creating great pictures - scenery, animals etc etc.
      I’ve been incapacitated due to all my symptoms that have been dismissed and I’ve not work and my purpose has paused and doesn’t look like I’ll be doing it the way I envisaged. I’m seeing this as a way to help others to not fall and to continue on their path in another way.
      Just thought I’d share that with you as your work is inspiring. Many aspiring photographers would be lucky to have your guidance or shares. You could do that under a pay wall where those people paid a small monthly fee of say a coffee and you shared your tips and tricks by simple instructing as even with little sight I imagine you know the camera inside out by touch - use your other senses to gain back your life. Sorry I’m really passionate about people and their purpose and especially when their gift is so obvious. This support I give will I guess become my life purpose whilst I’m dealing with my health issues which I pray I get the help.
      Worth reading up about Cath Kidson and how she diversified her path to become the person she is today. Maybe your wife could read for you. Plus there is technology like Read to Write on Word (Microsoft Office) which can read text for you plus allow you to dictate what you want also.
      I hope I’m not overstepping but I see you have a gift and you can continue on your path just maybe for now in a different way.
      My guidance is to explore. This action will boost you in ways that will support your recovery. I’m very spiritual so forgive me 🙏🏽💫

  • @Boemtie
    @Boemtie 2 หลายเดือนก่อน +1

    Do you feel the benefits of the surgery at all?

    • @JesseSchpakowski
      @JesseSchpakowski  2 หลายเดือนก่อน

      I do to some degree. There has been some improvement in my eyesight since surgery. My brain is a different story. I am dealing with some brain lesions/damage. I have good days and bad days with my cognitive function.

    • @Boemtie
      @Boemtie 2 หลายเดือนก่อน +1

      @JesseSchpakowski Damn im scared, just got the results of my Mri i have a 0.5 cm microadenoma on the back of my hypofyse. Been dealing with Pots, panick attacks and depression out of nowhere for 7 years now. I have been getting therapy for a while now and it does help but the headaches are just constant and the deprssion doesnt go away anymore. i hope surgery will help with the anxiety and depression.

    • @KhalidKipawi
      @KhalidKipawi 2 หลายเดือนก่อน

      Watch out your diet, it plays an important role during your recovery. Just like you I'm a Pituary Adenomas patient too.

    • @Boemtie
      @Boemtie 2 หลายเดือนก่อน

      @@KhalidKipawi thanx what do you reccomend?

    • @KhalidKipawi
      @KhalidKipawi 2 หลายเดือนก่อน

      @Boemtie I had surgery on my Pituary Tumor in 2016 and it reoccured in 2022 so I under surgery again in 2023 and this tumor was bigger than previously (2016) the neuro team suggest I have radiotherapy on the tumour as they suspect cancer cells within it. So I had radio therapy in September 2023. Actually my recovery is progressing but I had to endure the radiotherapy side effect. And my right eye vision is badly affected. On my diet I chose more of plant base diet. I suggest than you can take Green tea, Oats, Chia Seeds and flexseeds in your diet reduce or avoid taking sugary and FAT saturated food for the time being. I could not do much work currently due to fatigue (radiotherapy side effect). Like you, I'm also a photographer in my town assign as wedding photographer.

  • @TheJohndeere466
    @TheJohndeere466 2 หลายเดือนก่อน +1

    They are thinking that I also have a pituitary tumor. I am wondering how long it takes to get disability once you find out for sure.

    • @JesseSchpakowski
      @JesseSchpakowski  2 หลายเดือนก่อน

      I'm sorry to hear that. It happened extremely fast for me. My diagnosis was clear without question. My tumour was very large. A CT scan and an MRI confirmed everything. I was diagnosed and approved for disability within a few weeks. Definitely less than a month.

    • @TheJohndeere466
      @TheJohndeere466 2 หลายเดือนก่อน +1

      @JesseSchpakowski will they let you be on it forever or just until you heal. They are thinking I have acromegely which is from a pituitary tumor prducing too much growth hormone.

    • @JesseSchpakowski
      @JesseSchpakowski  2 หลายเดือนก่อน

      @@TheJohndeere466 I honestly have no idea. The neurosurgeon said I would be on the mend for 6 months to a year. I'm at 5 months right now. I just had more bloodwork done for my thyroid and testosterone. I'm just waiting to see if I need medication or not. I still need a follow up MRI to see if anything is growing back and how things are healing. I have an appointment in February for my eyesight. So there are still a lot of unknowns and I just have to take things one day at a time. This tumour seems to affect everyone a little differently. How does the growth hormone affect you?

    • @TheJohndeere466
      @TheJohndeere466 2 หลายเดือนก่อน +1

      @@JesseSchpakowski it makes your hands, feet and skull keep growing. For me it makes all my bones and joints hurt. I also have a horrible head ache and pain in my face almost all the time. I hope you get over all this. Its deffinitely no fun.

    • @JesseSchpakowski
      @JesseSchpakowski  2 หลายเดือนก่อน

      @@TheJohndeere466 Oh man, that sounds awful... It's definitely no fun for anyone. I hope you have a full recovery as well.