× Tell us about your journey

Needing help / guidance!

  • Posts 85
  • Thank you received: 0

Replied by PNA-Tammy on topic Needing help / guidance!

Hello!

First let me say that Ryan is lucky to have a friend like you looking out for him. A support group of family and friends is so important. I highly suggest getting a second opinion from a pituitary specialist. I can understand the frustration of not being treated for something they know is there. Pituitary tumors are very complex and require expert care. We have a list of specialists on our website that should be able to help Ryan, we also have a list of pituitary centers where they have teams of specialists that all work together to come up with treatment options.

Here is a link to our list of specialists:

pituitary.org/medical-resources/physicians

Here is a link to our list of pituitary centers:

pituitary.org/medical-resources/hospitals

I am not a medical professional so I am not sure about all the testing that needs to be performed but it seems like a basic lipid panel is not enough. Here is a link to a section of our site that has information about getting started including Finding the Right Doctor, Symptoms of a Pituitary Tumor and Signs & Symptoms and What to Ask your Physician (this article has a list of what should be tested). 

pituitary.org/table/get-answers/

The section above is a great place to learn more about pituitary tumors and how they can and should be treated. I know you mentioned that Ryan has insurance through the VA. I do not know how referrals work with the VA or how they work with facilities other than the VA but I do think it is important to find a specialist. I recommend contacting one (or more) of the pituitary centers near you and asking them whether they work with the VA. 

Most importantly there is hope! We are here to support you and Ryan and try to help point you in the direction toward a better quality of life. Feel free to contact us at (805) 499-9973 or via email at [email protected]

Kindest regards,

Tammy Mazzella 
Pituitary Network Association
3 months 3 weeks ago #10571

Please Log in or Create an account to join the conversation.

  • iamrachelbush
  • iamrachelbush's Avatar Topic Author
  • Offline
  • Fresh Boarder
  • Fresh Boarder
  • Posts 1
  • Thank you received: 0

Needing help / guidance! was created by iamrachelbush

Hi all! I need your help, please! My close friend Ryan recently was told in November that he has a 7x10x18mm pituitary tumor / cyst as a result of a MRI scan (completed by his request and unwillingness to accept other diagnoses). His symptoms started in June 2018 - daily and terrible ice pick headaches, disorientation, balance issues, anxiety, depression just to name a few. His most recent blood work (basic lipid panel including TSH) has come back normal, which unfortunately,... seems to set us back with any treatment plan for surgery right now. Since, his doctors seem to just put it on a back burner, want to write prescriptions for the symptoms (essentially just band aids), and last said "we will conduct another MRI in a year". A year with insane physical and psychological pain? Sometimes it feels the doctors hear us speaking, but don't believe us or show any urgency to fast track Ryan to better health. I need your help, your stories, resources, etc., to help him get this treated correctly and ultimately removed as quickly as possible. There's no doubt in our minds or our hearts that this tumor / cyst is the reason behind his new medical issues that he has never experienced before and cause so much disruption to his life. Has anyone experienced situations where it feels the doctor's are not taking action as felt needed? What did you do? What did it take for the doctors to truly understand and move forward? What can you share from your journey that will help us? A note to add is we are currently working through Veteran Affairs as Ryan receives insurance and benefits through them. If you also have experiences with the VA and found success, please share how! Any starting points, anything and everything is much appreciated more than you know. We need to know there is support, hope and recovery down this path. Thank you all so much!!
3 months 4 weeks ago #10570

Please Log in or Create an account to join the conversation.

Moderators: [email protected]