Questions I Had

Here's a copy of the MANY questions I compiled for the neurosurgeon before I flew out for my second opinion at UCLA. I have posted some of the answers to the questions I had. Obviously not all were asked, especially the ones dealing with post operative (radiation) treatment. I figured I would save those questions for later if needed:

1. How many pituitary tumors have you removed surgically?

Answer: 500+

2. Have you had patients die from complications during the surgery and what about my situation makes that less or more likely?

Answer: Only 1 patient and he was an elderly man

3. If the tumor is removed from the pituitary will the left over tumor in the cavernous sinus continue to grow and cause the secretion of the trigger hormone that produces IGF-1?

Answer: Yes, if there is tumor left over - this is likely to happen.

4. Will the tumor in the cavernous sinus continue to grow if it has been separated from the pituitary? Assuming all tumor in the pituitary is removed and the pituitary is intact, could the remaining tumor in the cavernous sinus continue to cause hormone issues?

Answer: Yes, It's possible.

5. Can you use an endocscope to get the tumor from the cavernous sinus? How come you can't just grab it and pull it out of the cavernous sinus? Is it attached to the artery?

Answer: No, impossible. Results would be catastrophic. Death would likely occur if there was damage to the carotid artery. Too risky to surgically remove.

6. Will you use an intraoperative MRI or other imaging during surgery?

Answer: Ultrasound is used to determine the location of the carotid artery.

7. Will a pathologist examine biopsies during the operation to confirm whether adenoma has been found? How soon will we know if the tumor is benign or not?

Answer: Pathology will be done while I'm on the table to determine pituitary tissue from tumor.

8. Are stereotactic radiosurgery and gamma knife the same?
9. I read that Stereotatice radiosurgery has a higher complication rate than standard radiation and that they are equally effective - is this true?
10. I also read that radiation treatment of acromegalic tumors does not help reduce IGF-1 production. Is this the primary reason for using radiation to reduce what is left of the tumor in the cavernous sinus?
11. I've read that the lower dose fractionated treatment of Novalis is the same as gamma knife and that it is just as effective and less damaging to the pituitary, is this true and what method do you recommend in my case?
12. Is the radiation still needed even if the tumor has been successfully removed?
13. Will you transposition the pituitary away from the region that will be treated with radiation in order to reduce damage to what is left of the pituitary? If yes, how will the be performed? Ie: will autologous fat, fascia lata, and/ or bone graft be interposed between the normal pituitary and residual tumor in the cavernous sinus?
14. How long will I have to undergo radiation treatment, how many times? What are the risks? Who would you recommend for this procedure, anyone in TX by chance?
15. Do you expect eye movement and facial sensation to remain intact after surgery and post radiation? What us the possibility if carotid artery damage from the radiation?
16. I read on the UCLA web site that you are not using nasal packing in a research study, is this standard practice now?

Answer: Yes, standard procedure now. No nasal packing is used post operatively. Gauze is placed under the nose instead.

17. I understand you do not use fat to pack off a CSF leak, is this correct? What do you use and how much more or less effective is this than fat?

Answer: CSF leaks are repaired with collagen sponge and titanium mesh - depending on the severity of the leak.

18. How long do you anticipate I will be in surgery and what pre and post op tests will you do?

Answer: 3-4 Days if all goes well. Longer if post operative complications occur.

19. How are post op complications handled across state? Ie: If a CSF leak occurs a month after surgery, where do I go? Is it safe to fly to California if this occurs? Do you have a doctor in the Dallas area that you work with in the event of an emergency?

Answer: Dr. will work across state with other doctors as needed. Clearance is required to return home after surgery if CSF leak occurs.

20. Do complications increase with repeat surgeries if needed?
21. It appears I may have acromegaly. If this is true, would you recommend my being placed on Pegvisomant right after surgery or do I have to wait until all other means of treatment fail before going this route?
22. How do you know where the tumor started? Is this something you can determine from the MRI? Does the likelihood of cancer increase if a tumor has invaded the cavernous sinus (speaking to the character of the tumor)
23. Since the maxillary nerve is in the cavernous sinus - is it possible the ear discomfort (or pain in the area) is casued by the pressure of the tumor in the region and on the trigeminal (maxillary) nerve? It seems somewhat plausible, do you agree?
24. How do we know that the tumor did not originate in the cavernous sinus and not in the pituitary gland, especially since the pituitary gland's hormone production and vision is not disrupted with such a large tumor there?
25. Can you tell if the tumor has grown in size? (Is there a difference on the MRI's)
26. I have a history of high fibroginen and blood clots (post partum), is it possible to run a test to be sure there will be no bleeding problems during or after the surgery or is this part of the pre-op work-up?

Answer: Yes, the necessary steps will be taken to ensure clotting will not be an issue.

27. My neurosurgeon in Dallas described the tumor as being gelatinous and that it typically oozes out with some coaxing. Is this consistent with what you see on the x-rays. How can you tell if a tumor is fluid filled or not. With MRI or endoscopy can you determine what is good pituitary tissue from the tumor?

    Answer: No, not all tumors are gelatinous in nature. In fact, some are fibrous. **NOTE: My tumor was BOTH gelatinous and fibrous. The closer the doctor got to the pituitary the more fibrous the tumor became. Microlayers were removed until normal gland was confirmed via pathology report.

28. Will you have an endocrinologist assign a prophylactic medication of cortisol in the event of an adrenal crisis. My endocrinologist in Texas says this is necessary, do you agree?

    Answer: Prophylactic cortisol is not given. Only prescribed if post-op labs indicate it's needed. Would discuss this with the endocrinologist in Texas.

29. How do I keep communication flowing easily between doctors?
30. Do you have an ENT that opens the spenoid sinus or do you do the surgery yourself? In Texas I would have a team of three doctors working on me, how is UCLA different?

    Answer: Dr. Kelly does not use a team of doctors but does it all himself. He has a team of doctors that oversee my post operative care but he is the primary physician in charge.