So this is how it goes..

The results of my efforts as of Friday, November 4th, 2011 are as follows:

•  I received an e-mail from Dr. Gentili in Toronto. He asked for a "3T MRI with dynamic scanning." Once he has this he will be able to determine if there's anything that he can do, and would see me in office if need be. 

• I received an e-mail from Dr. Swearingen at Mass General asking for my initial MRI and blood work before any treatment and asking if I've had an IPSS (Inferior Petrosal Sinus Sampling).

• I received a phone called from Jill, the assistant at Dr. Quinones office at Johns Hopkins. Based on my MRI, Dr Q doesn't feel as though there's enough tissue left to safely operate, he feels I've had too much radiation and does not advise any further treatment to my brain. He does not do anything with gamma knife, but said I could try contacting another gamma knife center. He does not refer people to clinical trials, but suggested I look into them. He wants to still see the results of my 3T MRI because it will offer a lot more information and if my tumor grows, he'd be happy to try to assist me later on. 

• I received an e-mail from Dr. Laws at Brigham and Women's Hospital. He acknowledges that this is a difficult situation with Cushing's and that I continue to have elevated cortisol and developed the anticipated pituitary insufficiency. He said:

 "The MRI studies show a secondary empty sella. It is possible, but not certain, that there may be small amounts of pituitary tumor tissue at the base of the sella. Your situation is such that additional radiation therapy is not a reasonable strategy. There are two trials of medical therapy ongoing at the Massachusetts General Hospital, and you can find out more information about them through the NIH website. They involve drug treatment with either pasireotide or mifepristone. I would encourage you to explore these possibilities. A surgical option might be available, but would require an inferior proposal sinus sampling procedure before being certain that it is a reasonable recommendation."

• I received a phone call from the assistant, Dane and Dr. Jho's office in Pittsburgh. Dr. Jho requested all "clinical notes" which was clarified as anything relevant to my diagnosis, copies of my initial MRI from diagnosis (which would be with Dr. Salamon), my MRI/CT's from after BOTH gamma knifes, and all lab work from diagnosis and after each gamma knife along with the upcoming 3T MRI. 

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I have looked into obtaining all the required documents and disks that are needed and it's becoming a very expensive task. I was told by Dr. S's (old local endo) receptionist that if Dr. L (or her office - present local endo) requests my entire file, I would not be charged, so I'm hoping this can be done, also just for Dr. L to have my whole file for herself. She is to send a letter with my name, date of birth and both Manitoba health numbers in order to get it. If I do it, I was told it would be a $25 administration fee plus an additional 25-50 cents per page (the woman couldn't remember for sure) and it would also be a month long wait. If Dr. L does it, I avoid the cost and wait, supposedly. 

I spoke with a woman in Health Records at St. B and was also told there would be a $25 admin fee plus 50 cents per page, however if my Dr requests copies, all the fees are waived, therefore I'm hoping Dr. L will also be able to request files from here.

I was not able to get a hold of anyone at Health Sciences records to find out about obtaining my files from there, they didn't answer the phone after two tries, however I'm assuming it will be much the same, that I would have to pay, but my Dr could request it for free.

When I got my MRI disk from HSC to send to the above drs, it was a $50 fee for the disk, but again, if my Dr requests it, I believe the fee is waived therefore unless Dr. L can help me get the pre-diagnosis, post-gamma knife 1, post-gamma knife 2, and forthcoming 3T MRI disks ($200+), I doubt I will be able to afford them all in order to send ($20 to mail each registered package) to Dr. Jho especially who requested all of them. 

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So this is everything that's happened until now. The initial responses I've had are much like what Dr. F (local neuro) has already told me, but I felt I needed to look more to see IF there was something being missed, or just ANYTHING that could be done. I'd like to be able to send the requested documents to these Drs and I still hope to hear from more of them. 

As discussed with Dr. L in clinic, I know that I may encounter someone who says "oh! None of them can fix you, but I can!" so I am still going to be cautious. My goal is to find someone who will say "I might be able to help, I will go in and try , but if it doesn't look good, I will abort mission!" I need someone willing to take a calculated risk.

If the end result of my efforts if everyone saying "no," then I will have to accept this, but I couldn't live with myself if I didn't at least try. I completely understand how I approached this wrong by not consulting Dr. L first and I feel bad for that, however I honestly didn't even expect the responses I've received as from in the phone calls I made prior to sending my information, I was told that these drs either weren't accepting new patients, or that my odds of receiving help since I'm from out of the country were not good. I've just been shocked by the response. I'm wondering if from Dr. F taking my case to conferences, if some of these Drs. had already heard about me and that inspired their interest and quick responses? I suppose I'll never know. But anyway, I do trust and have always trusted Dr. F - I love the man! - but I just needed to be certain that nothing else could be done. This is MY LIFE, I do not want to die with people saying "well, she didn't even try!", I want them to say "she did everything she could!"

I'm currently taking 3.0mg of cabergoline 3 times per week, but I feel like I'm running high again, so I will try to add keto back in. And I will wait and HOPE for more good responses from the neurosurgeons I have contacted.

HOPE HOPE HOPE.. can't ever lose HOPE.