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My 20 year journey continues

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Replied by pnaadmin on topic My 20 year journey continues


I am sorry for what you have been through and for what you are continuing to go through. I am not a medical professional so I cannot answer any medical questions. However, I do recommend getting a second opinion from at least one pituitary specialist. Make sure you find a surgeon who has done an extensive number of these types of surgeries. Studies have shown that surgical skill has a direct effect on your quality of life. 

Since you are having vision issues I recommend that you take action sooner rather than later. I also recommend seeking treatment from a pituitary center. You mentioned Dr. Roper so I assume you are in the southeast area. University of Florida, Shands Hospital and Emory University in Atlanta, Georgia both have pituitary centers. You can find out more about them on here on our website. 



I suggest that you contact both facilities and send them your scans and test results and find out what they suggest you do next. I hope you are able to get some answers and the help you need soon. Feel free to contact us if you have any questions or if you would like additional information. 

Take care, 

Tammy Mazzella
Pituitary Network Association
(805) 499-9973
[email protected]
7 months 1 week ago #10823

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My 20 year journey continues was created by Tengleman

Twenty years ago, I was diagnosed with my first Pituitary Adenoma. It was removed surgically through an incision behind by upper lip, which I suppose you would say is transphenoidal. It was a very interesting experience to say the least. Interestingly, no one referred me to an endocrinologist, and I was told it was non-secreting and I had MRIs every three months to follow it.
Two years later, the tumor had returned but it had become wrapped around my carotid artery and I was told they could not operate on it, even with Gamma Knife, so I had radiation treatments every day for six weeks and it seemed to halt the growth of the tumor from then on as I had regular MRIs from then on every six months and then every year.
Then back in April of this year (2019), I woke up one morning and was seeing two of everything. At first, it didn't even dawn on me that this had anything to do with my former pituitary tumor. It had not been an issue in such a long time. I also started having headaches at the base of my skull in the back of my head, which was odd -- around the C1/C2 vertebrae. 
I went to my primary care doctor and she ran bloodwork for diabetes, which is what she thought might be the culprit, which it was not. I suggested perhaps we might do an MRI of my pituitary and compare it with the last one, which had been done two years ago. When that was done, it was found that there was growth. 
I found a local neurosurgeon who was extremely confident that he could do the surgery and get the majority of the tumor out. He was adamant that he did a lot of these surgeries and that he had come from the Mayo Clinic, was very confident that he could get the tumor, even up close to where it was completely wrapped around my carotid artery, which he showed me was very tightly wound. I was very concerned, but he was not. He said, it was not going to be a problem at all, that he would work in conjunction with an ENT and do the entire procedure transpenoidally and robotically and that it had changed significantly since my procedure 20 years ago and that the results would be much better..
I had the procedure done May 23 of this year and was amazed at the lack of pain afterward and my recovery was so smooth. Everything seemed to go so well.
However, within just a few weeks, my vision became so much worse and has gotten progressively worse over subsequent months. My headaches have grown horrendous. 
I went back to the neurosurgeon a couple of times, but he told me it was just part of the recovery process. My last MRI showed tremendous growth in the tumor, not reduction. It showed that he actually only took a tiny portion of the tumor during surgery and the radiologist notes say that the tumor is now over 2 cm and growing, even since surgery.
My neurosurgeon said to ignore the radiologist's notes that he didn't know what he was talking about. 
However, my vision is horrible. I see double almost all the time and my eyes get stuck in different positions.
I recently saw a neuro-oppthalmologist and she had a fit when she saw what my eyes were doing. She said I have to get the tumor out right away as it is invading the cavernous sinus and that is what is causing the vision issues. She referred me to another neurosurgeon. The next neurosurgeon was not comfortable doing the surgery though and has referred me to Dr. Roper at Shands, who is the only neurosurgeon that I see listed as a member of the PNA. I am seeing Dr. Roper on January 7 and am very anxious to hear what he can do for me. I also recently watched a program on this site with one of our member surgeons from New York who was able to remove a tumor like mine, so I do know that it is not impossible and I am hodling out hope. 
It is so hard to work as my job is a copywriter and even to type this message I have to close one eye and take regular breaks, my vision is terrible and headaches excruciating with no medication to take.
Any suggestions other than what I have done are appreciated.
I am so thankful for everything this organization does.
7 months 2 weeks ago #10819

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