not many options

[cuteus]

My baby sis had a radical mastectomy a couple of weeks ago. Following surgery she wakes up unable to open an eye. Family fights to keep her in the hospital to find out reason and after tests, an adenoma in the pituitary is seen. At first the neurosurgeon said no surgery was needed, then a week later he is rushing to operate. Red flag! She is in Las Cruces, NM so there are not many options for neurosurgeons and no specialized centers. She is also worried about what the insurance will cover. I feel that she is not getting the best consults, (so far no optic md has been to see her) and has no access to the latest technology.  I wanted her to go to the Barrow Institute in Phoenix, but she worries that she will be charged more deductibles and will have higher copays if she is discharged to be seen at another center. Her husband changed insurance in the middle of this, don't ask me why. He does not seem to have a good hold on finances. To me, she should be at the Barrow, and assess for the transsphenoidal approach. Instead, her surgeon is only comfortable with a craniotomy ( at the hairline and replacing the bone flap with a metal plate instead of her bone).  He feels that the nasal approach is operating in the blind and does not offer it. My sis is been pushed to accept the only thing available: a surgeon that does not seem to have experience in the less invasive techniques and who seems to want the most convenient surgery for him, a quarter size hole at the hairline, a more invasive approach.  And he can't even replace her bone flap with her own bone! I am so frustrated! Has anyone gone through a similar craniotomy here by a regular neurosurgeon (not a brain MD)?

[rumpled]

Yeah - in fact the non-functional type will recur even faster. She really needs a pituitary center. The parts that were not removed need radiation, typically, from an experienced center. That is what an experienced center would do - and you again, need experience as there is the radiation leakage factor and you don't want to hit the optic nerve or the carotids - or anything bad in the cavernous sinus.

If she is not on proper replacements post op, like cortisol - she can die. If the doc has on nothing, her glucose can be dropping. She can also develop sodium issues and all sorts of issues with low hormones and electrolytes. She can also have issues with chemo and vomiting post op - with cortisol replacements you cannot vomit as dehydration can be life threatening (I wear a medic alert and carry emergency meds, emergency shot etc). She may also need thyroid meds and other hormones - so any idea on what her post op hormones came out to be?

I got a fat graft to patch my hole - not sure what they do for this surgery. Most pituitary surgeries are benign - that is not an issue - it is the hormones.

This really, sadly, needs expert hands - neuro-endo and an pituitary surgeon. The hubby may have not paid much for the surgery - but he may have paid a greater price in the long run but I hope not.

I have only been around here for a few years. It does change from time to time.

[cuteus]

They went ahead with the surgery as planned. Last I heard, he was not able to remove all the tumor because of how close it was to sensitive areas. He claims that the tumor is amorphous and will not recur and what is left might be absorbed by the body.  I am searching the web and found that it can recur even if it is nonfunctional amorphous. At this point, the focus will be on making sure she does not develop any clots and there was no damage to any areas he touched. Maybe I can convince them to follow up with the team at the pituitary center.  I could find no specialized centers in New Mexico, only Arizona.  I have to find out how he patched the hole, because if metal was used then no MRI follow up for my sis, I am guessing. The tumor was benign, and not metastasis according to pathology. I am hoping they were competent at that since I have no confidence if the hospital gave her insulin even though she had been fasting since midnight, BG went down to 88! WTF? Why would they give anyone an insulin shot if they are fasting??? I just want this to be over, and her out of there so she can start her chemo for breast cancer.  If all is well with the head surgery, will know within the week, I will personally drive her to the pituitary center for follow up and pay for it, if I have to.  Her hubby is more concerned about copays and deductibles than getting the best treatment. So frustrating!  How do I read your earlier posts on your surgery? When I started in medhelp over 10 yrs ago, it did not look like it does now, so I am not familiar with all the functions. Thank you for your support.

[rumpled]

The hubster is likely scared and the surgeon - hopefully experienced (but that technique is not common! the guy who has done the MOST in the US uses the nose!!! the NOSE!!!) so if he does not have the tools, I would get your brother in law to read up a bit as he can make his wife blind and cause strokes with poor surgical technique.

The nasal technique is not new... I had it 12 years ago when it was fairly new and it is  what everyone does. The OLD technique is via the LIP and the old old old technique - as in the early early early surgeries are what this guy is doing. I would run away from this guy. You need experience. I really feel sorry for your sister - she needs a pituitary center. Have your brother in law contact the pituitary.org ASAP and they will rip him a new one. After the first surgery - it is very hard to repair damage.

[cuteus]

thank you for sharing, this is new for all of us.  I was pushing for a more experienced surgeon, but Insurance pressures and husband's lack of support in seeking a specialized center, has left her with limited options. She signed the papers and ok'd the surgery for tomorrow. This surgeon wants to use a technique that affords him easy access and view of the area, (says tumor is the size of a quarter).  I don't know, I feel he is just selling his practice and like most surgeons, he is a bit narcissistic. You have to be to be a confident physician.  Hopefully the benign narcissism.  I hope she comes out well from this, and the tumor is not metastasis from the breast.  His technique gives him a wide berth for accessing the area and working in removing the tumor.  He has not done the nasal technique. Maybe he is not interested in training for it, or he was not good at it during his residency, who knows? I just pray I have my sister well after. Will try to read more here later. Maybe I can push for the center after the surgery if all goes well.  As far as I know, only GP's have seen her in the hosptial, no endo consult and no ophthalmic consult! I wish I lived closer cause I would be pushing for all that! Not much in Las Cruces, NM! Thanks again.

[rumpled]

I have not heard of the bone flap in most normal surgeries for pituitary - that tumor must be HUGE. Is it huge? If it is not, then through the nose is pretty standard right now - and they can take out pretty large tumors via the nose - even macro-adenomas (over 1cm, which is the larger of the pituitary tumors) come out via the nose.

If you go and read most of my posts, I cannot stress enough how much surgical experience effects outcome. If you get a GREAT surgeon the odds are so much better that the outcome will be better. Just guessing but it sounds like her optic chasm is effected and in that case, she needs a super duper surgeon as the optic nerve is not one to mess with - so she needs a top surgeon - one that has done thousands. I will PM you some names and I would suggest that you start as well with the resources in the health pages and look. Insurance is one thing - and hopefully the company will allow for an expert (if not FIGHT) and some doctors will take on cases and some will know experts close by you.

Your sister needs a skull base surgeon that uses an endoscope - I don't know Barrow per se - if they have a pituitary center - but she for sure needs a pituitary center as she also needs a neuro-endo as hormones will also be messed up a bit and she will need some help with that as well.

You want the least invasive, most effective technique - and you also need to know WHAT type of tumor it is - some can be treated with medications and not need surgery! What labs have been done?