Which type of surgery is best for removal of large pituitary tumors?

[concernedwife72]

My husband just had an MRI that showed he has a large tumor that is pressing on his optic nerve.  It is also against the carotid artery, so they may have to leave part of the tumor there.  We've met with a surgeon who says he feels confident that he can remove it safely, going in through the nasal passage, otherwise he would refer us to a doctor that he knows who specializes in these types of surgeries, and uses a laproscope.  I understand that time is of the essence because of the possibility of totally loosing his sight, but is the technique important enough to risk it and have a second opinion?

[xavier99]

I had my pit tumor removed in 1971, thruogh the top of the skull!!. the newer way is better, thru the nose or eye socket. you will have less recovery time. they cut my  head open with a saw and I was out 3 months. I had radiation after ,but that was normal after this type of operation. I just take meds to help me supplment the hormone lost. If the doctors is a specialist in this field he should be OK. Good luck, get a 2nd a opinion if you can from a specialist in this field. this seem to be more common than you know.

[steph9803]

I just read through your post and wanted to say good luck! If you read through any of my posts you'll see my journey from beginning to now. It just started in june and I'm now 3 months post op. I'm not able to help too much yet as I'm still not feeling as sharp as I once was...but my tumor was effecting my vision by pressing on the optic nerve and it was wrapped around the carotid artery and pressing on my pit gland and stalk. I was advised by a couple of dr's to go through the nose...but I found a skull base neurosurgeon who I am very comfortable with and he went over the risks of endoscopic and open surgery in great detail. I ended up having a craniotomy and am happy with my decision. Finding a dr that you're comfortable with makes SUCH a difference. I was far more at peace with my decision than I ever thought I could have been.

[rumpled]

Keep us posted on the testing and all!

[concernedwife72]

I hope you're right about it not adhering.  When I asked the Dr. about the danger of it being next to the carotid, she said "no, no danger of a stroke".  And yes, having a good surgeon is the key.  This one says she does hundreds of pet tumor and 40 to 50 of the RCCyst type a year.  We feel very confident that we're in good hands now.  Just waiting on blood test results now.  ttyl :-)

[horselip]

A good thing is that it is probably not adhering to the carotid or optic nerves!!!

[horselip]

Hey there-
Yes I had a Rathke's Cleft cyst. Those things tend to be wedged between the two lobes of the pituitary gland because they arise from a birth defect in how the pituitary gland is formed. It makes it a lot easier that you are not dealing with a secreting adenoma though.

So it is still important to have a very very good surgeon!

I would have thought that my Rathke's would have been filled with fluid, but it was filled with something that was that had a texture like pudding so it was kind of firm. Ends up that this thing would expand and shrink, based on this empty area that was next to and above my pituitary gland in the sella on the first few MRI's.


Looking back to my pre-surgery times I can remember having times when there seemed to be more "symptoms", if that makes sense.

Horselip

[rumpled]

That is what Horselip had as well. While most pituitary lesions are benign, it is the hormonal disruption or actions that cause the issues - and some of them can be quite severe so the range can be minimal to debilitating. They should test all hormones and test them again after surgery too. Yes, the only treatment for that cyst is surgery and you want a good surgeon so you minimize harm to the pituitary - but some of that depends too on the location and size of the cyst as well.
Keep us posted and good luck!

[concernedwife72]

Wanted to give an update to my husband's condition.  We saw the Dr. who specializes in pet tumors.  Turns out it's not a tumor after all, but a Rathke's Cleft Cyst!  I'm sure most of you already know what I'm finding out about this, and that is, that it's always benign.  We got back the blood test today on the cortisol, and it's good!  Awaiting the rest of the tests to determine if they can treat it with drugs or surgery.  The Dr. says we will probably be facing the surgery, but I don't think it will be as bad as the other would have been.  So thankful for all the info and suggestions to get a second opinion.  Will let you know when we hear something.

[rumpled]

LOL... it defaults to male as well - so if you don't check anything, you are a man anyway.
I don't know why they do that since most around here seem to be women...
Have a nice holiday!

[concernedwife72]

Ooooops. I just noticed on my profile, that I checked male. lol  Guess I was thinking about my husband while I was filling out the profile.  I've been filling out all his paper work because of the problems with his vision.  Guess I will try to add a pic soon. :)

[rumpled]

Good that they are acting fast. Happy Turkey day and keep up posted!

[horselip]

Check your inbox. I sent over some info for ya.
Good news on the upcoming appt :)
Happy turkey day!!!
Horselip

[concernedwife72]

Yes thanks, I would like to have the links.  I looked at couple of short films that came up when I googled pit surgery.  

I think that we are going to get to talk to a Dr. who specializes in pit surgery.  Her assistant called today, and he is waiting for the Dr. here to fax all the records to their office.  He has to talk to her first, and she is going out of town for Thanksgiving, but looks like we may get to see her on Tuesday (29th)....which was when the surgery with the other surgeon was scheduled.  As soon as I here from her office, I will cancell the surgery (for now).

YAY!! Just heard from the Dr's assistant.  We have an appt with her and and the Endo at the same time on Tues.  Sounds like they will want to do the surgery right away, because he told us to be sure he stays off his aspirin regimen (which we already had stopped).  All of these doctors are right in the same clinic and will be working closely with each other.  I feel like things are starting to come together....I've been crying with relief.  I know we have alot to go through with, but at least I think we are headed in the right direction now.  Thanks again for all the help from both of you, and I will keep you posted.  Have a happy and blessed Thanksgiving! :-)

[horselip]

No worries here either.. my goodness no
Like Rumpled says it is all very overwhelming at first. So take deep breaths and pace yourself. You will pick things up little by little.

The endoscopic tools are what they put through the nasal cavity to do the surgery. There are videos of pituitary surgeries on the internet for med students and the like. Would links to one of these be helpful to you? I found this type of thing helpful in explaining the process, but then I am not a squeamish person.

Some folks want this type of info helpful, while others find that it makes them more stressed and would rather that their doctors handle things.

It just depends.

Happy to help, if you ask.

Horselip

[concernedwife72]

We are still trying to get an appt with the Dr. at the nearby clinic, but havn't head anything yet.   I did talk to the ENT office today and they are wanting to set up appt for a CT scan on Monday the 28th.  She said they use something called stealth navigation, where they put a band or "halo" around your head.  She mentioned something about sonar too, and it's supposed to be safer than anything else????  She said it was called endoscopic also??  I'm starting to get confused again, but I keep going back to the fact that if a doctor speciaizes in this kind of surgery, it stands to reason they would have to be more proficient.  Maybe we will hear something tomorrow, if not I will call the Dr.'s office myself.  I would have done that to start with, but she (lady at the first Dr.'s office) told me that a Dr. would have to refer us.  I called back this afternoon, but had to leave a message.  I really hate this waiting!

[rumpled]

We don't mind - at least I don't and Horsey and I have been around and helping people quite a bit here.

It is important - with any tumor - that the patient be informed - but with pituitary patients seem to flounder a bit more since a lot of doctors are not trained well still so you need to seek out state of the art care and experience really makes a huge difference in our care. Make sure you get copies of everything. It seems so scary and overwhelming at first - and like you do not understand a thing - but after a while - you do! Hang in there and let us know how things are progressing.

[concernedwife72]

Hope it's ok that I thanked you both on the same comment.  I tried to send you a message, but It sait I couldn't send a personal message to you.  I probably did something wrong...will try again tomorrow.  :-)

[concernedwife72]

Thank you for the info!  Was up all night doing some research and reading LOTS of older posts on here.  After my initial "freaking-out" from all of the bad experiences, I took the suggestions from all of you and we are calling to set up an appt with a doctor that specializes in pet tumors, and is at a research hospital, where they have state-of-the-art equipment!  They are only about 45 miles from where we live, and there is an endo specialist right there in the clinic.  Oh, and they do endoscopic...which I understand is minimally invasive.  I know that God led me to this forum, because I've never done anything like this before, and I've prayed that He would lead us in the direction that we shoud go.  Thanks so much, (rumpled and horselip) for taking the time to help answer all the questions on here from me and people like me who really are "clueless".  I will let you both know what we find out. :-)  

[horselip]

Rumpled is right.

I was only asking you to PM me to send you some links, as we are not supposed to post them here in our posts.

These links to some of the larger Pituitary centers on all the internet, however . You might do searches for the pituitary centers at UCLA, Mass General and UCSF. Those all had surgeons six months ago who were very well versed in the method and had experience that Rumpled is describing. I am sure that there are other great surgeons too, these are just the few that I know of because of other patients that I've met over the last few years.
Horselip

[rumpled]

There are different methods - open (which is done rarely) via the lip (which is not common either) and the nose. Then you look at tools. Endoscopic vs microscopic is what you look for. If you talk to surgeons - you want to go endoscopic. Endoscopic has more field of view and can turn on tip to see more while the microscope can only see the head on view - if that makes sense?

I would get a surgeon that has done more than 500 surgeries and make sure you are comfortable that this surgeon has worked well with large tumors before. So make sure you get a guy/gal at a pituitary center with a good neuro-endo behind him/her. Ask about complications, how he nips around the carotids and the optic nerve, how much is going to be left behind (estimate) and show you things on the films.

You may have to get a bit of radiation afterward if you have a secreting tumor if you cannot take meds.

To send a message you can simply click on her name and it will take you to her profile. Then you can send her a message. If you hover over her name it will say send a note or message - a message is better. There are links in the health pages at the bottom here to pituitary sites that have doc links and info that may be helpful too! Keep us posted!

[concernedwife72]

Thank you so much for responding so soon.  Your suggestion about getting copies of the MRI for second opinions or consultations is very helpful.  Also, the woman you mentioned who had improvement in her vision is VERY encouraging!  I can't wait to tell my husband about her...loosinng his sight is his main concern right now.
I should have mentioned also, that the surgeon we talked to did say that we were more than welcome to talk to someone else, but that if he didn't think he could do the surgery well that he would tell us to go to someone else.  We thought we were sure, until we researched the different types of surgeries....?  BTW, how do I send you a personal message...I'm new to this forum?

[horselip]

I meant to add that I know several people who have had Macroadenomas that were very close to the optic nerve and wrapped around the carotid who have had successful transphenoidal surgeries. Some had residual bits but because the adenoma was not secreting and slow growing they are ok. One woman in particular that I am thinking of lost most of her hormone function but she had an improvement in her vision.....so?

[horselip]

Hi
Wow this is  a very tough question to try and answer. But I will try. Any good neurosurgeon worth his or her license would encourage a patient to seek other opinions.

Given that this adenoma did not grow overnight you could probably have the radiology center where his MRI was done make a few copies made of the MRI onto a disc and seek second and even third opinions in a relatively short period of time.

Research the best Pituitary neurosurgeons and call them. Narrow it down to two or three and interview them ove the phone. Many are used to patients traveling from out of town and will and have a way for you to work with them for a second opinion.

Since this is probably the most important choice that you and your husband will ever make I would seek other opinions and not limit yourself to your local area.

Without seeing the MRI a layperson such as I could never advise you as to what surgical approach would be best. Things such as the adhesiveness of the adenoma, even the narrowness of your husband's nasal cavity could influence this. Several members have recently needed to have partial craniotomies because of just those reasons.

Feel free to send me a private message if you'd like to communicate more.
Horselip