Hi, I would appreciate anyone's feedback on having had the pituitary tumor surgery. I am looking for a surgeon who will operate thru the nose instead of the older way of going above the lip. I feel for anyone who has experienced what I have for the last several years. I am hoping the nightmare will be over soon. I am looking at Pittsburgh, MD Anderson, and a few other places but really would love to hear from someone who has been thru this and what I can expect. THANKS
Look for those that say "fully endoscopic" technique. Those that say microscopic or sometimes plain transphenoidal, you may not be able to tell what they do, but you can look at the doctor's websites and usually that will feature their particular expertise.
Jho in Pittsburgh only does it through the nose. McCutcheon at MD Anderson may or may not - but he did surgery for a couple of friends of mine and they are both happy.
What really tells is experience, frequency of complications, experience with your type of tumor (Cushing's are gooey, harder to remove at times, macroadenomas tend to wrap around the carotids so you really want someone who has done a lot of them if you have a biggie).
Some types of lesions are just plain difficult. I had a hyperplasia - so while my surgeon did a great job in preserving my pituitary function all around, my Cushing's came back as just one cell left behind was going to just grow grow grow. I m panhypopit from losing the rest of the organs to disease.
Look at websites, talk to people at the office, ask to talk to patients, ask about numbers, ask a lot of questions.
Ask about packing, lumbar drains in advance for CSF leaks (not a fan), ICU stays or not, etc.
I hope this helps.
Dr. Daniel Kelly at St Johns in Santa Monica (previously the director of UCLA's pituitary surgery) did my adenoma in June 07, while still at UCLA. He is an excellent surgeon! There are others that have very good reputations at UCLA, UCSF, Cedar Sinai, and places in CA. If you are in NV you are close. Do lots and lots of research, get ONLY a pituitary specialist, not just a good neurosurgeon and one that has lots of experience with pituitary surgery. Dr. Kelly has helped perfect the endonasal approach. Also check out support groups for information. There is lots of info out there. Hope this helps. Diana
Thanks for all the info! Vegas has the worst health care! I have a craniopharyngioma and I want it out. I can't take one more day of pain and vomiting. It has taken a long time to even know what it is but now that I do, I want it corrected! I will definitely look into the Dr. you named. I spent all day looking at UCLA and the head of the dept there sent me an email already in reply. That was a surprise. I just want to go somewhere that this is all they do and they do it well. Thanks again to all who posted!
Bethlee, Good for you, keep researching. May I ask who the Dr was that answered your email? I assume that you meant that you looked at UCLA all day online not in person. I had my surgery there and it is a good place, the current US News and World Report just named them 7th in the top hospitals in the country for neurology and neurosurgery. UCSF was #4, the rest on the east coast. You have access to excellent pitiutary or other brain surgery here in CA., so close to you. If you chose to visit or use them I can give you info on where to stay, etc. Dr. Daniel F Kelly is just across the freeway in Santa Monica. Both are close. Something I liked about Dr Kelly was that he had stats of his surgeries, how many a year, total, the outcomes, etc. No guessing. Be sure and ask a Dr that. Something I just thought of, a brand new hospital building was preparing to open when I was there, not sure if it has yet so maybe some of my location information (hotel, best entrance, etc) would be old. Have to see. Keep going and be armed with lots of info. Diana
Craniopharyngiomas may be tricky... Ed Laws or Kalmon Post are good docs as well. Do not get hung up on just one name just yet - do some research and find out the best one for you.
It was Dr. Martin . And you are right, I didn't go there, I just emailed him with all my labs and he wrote right back. I also looked into Dr Kelly but according to the web site the don't do the nasal surgery for my type of tumor. I have been to MD Anderson prior as I am 12 year in remission for a squamous cell ca of the base of the tongue. I was dx'd with MS years ago and have had one health issue after another. This thing has me so nauseus...and I am at my wit's end with waking up and vomiting. The dr's here have no clue . THe book I could write! I go all the way to Phoenix to see most of my dr's. It just gets old when you feel so lousy. I am nervous I will go somewhere and they will want to keep me for 2 weeks and re-run all the tests I had. That seriously takes alot out of me! It isn't aasy living in a hotel , being away from home, and then on top of it have every test over again. I'd like to go and get a good consult and maybe narrow it down to 2 surgeons . Pittsburgh has a great place but it's so far. Right now I am torn between going to UCLA or the place you mentioned in Santa Monica. I am not going to rush into surgery...it's only taken years to find out what this wa now so I want the best dang guy I can find! After Vegas, I have to tell you, they almost killed me several times here! Thanks for the info..I am really curious how you are feeling after your surgery? Can you tell me more? thanks, Beth
Laws is at Stanford but not sure if he moved again (he is the top guy in the US so most sought after). Post is in NYC.
I went from NYC to Los Angeles for my surgery. Traveling for surgery is not unheard of. Go for the best doctor you can find.
Bethlee, I totally agree with the previous things Rumpled said, research, ask tons of questions, and go for the best Dr you can find and for YOUR type of tumor. Yours is not the same as mine so Dr. Kelly may or may not be for you. Another place I forgot to mention is the Skull Base Institute with Dr. Shahinian, also in LA. I've seen his hame mentioned on boards with high recommendations. Your type of tumor is listed on his site. Everything I have read says the success of your surgery has so much to do with the EXPERIENCE of your surgeon. Dr. Martin was my UCLA roommate's Dr. and she loved him, credited him for saving her life, but her's was an aneurysm, again not your tumor, but that doesn't mean he doesn't do them. In 96, the mother of a guy my husband worked with, was sent to Dr. Martin from Kaiser because they couldn't handle her case. Again, some type of aneurysm and he saved her life. As for my case, I had a basic non secreting macroadenoma, 2-3 cms. no symptoms. I have had migraines for 30 years and started having some vision issues, so I asked for a CT scan since I hadn't had one in 27 years. The Dr agreed, thankfully, and I expected it to be totally fine. BUT, surprise, a tumor. I spent from Mar - May 07 doing tons of research and HOURS on the computer, checking with Kaiser's Drs, finding a support group, and ended with Dr. Kelly. Kaiser, definitely NOT! Mine had already spread to a sinus cavity so he couldn't get 100% but 98% he said. It may or may not return but if so they will zap it early with radiation. I just had my 1 year post surgery MRI and it shows no change. YEAH! All my endocrine tests have been normal except the last T4, slightly low and is being monitored. I'm on no medication except for BP and feel basically good, except a little less energy than I use to have. I was anemic after surgery and it took me quite awhile to get over being tired. I am extremely happy with the outcome of my surgery and so GRATEFUL I found a good surgeon. I am SO GLAD I did not chance using Kaiser (their Dr. did one pituitary a month) and because Dr Kelly is not with them we had to pay "out of pocket", NO REGRETS and worth every penny!!! One other thing, hotels. We stayed at the Tiverton, which is affiliated with UCLA. It was right across the street and SO convenient, and provided a shuttle if needed to the hospital or medical plaza. If you check with the SKull Base, Cedar Sinai or Dr. Kelly's, ask if they have that same arrangment with a local hotel. It really helped. Sorry to go on and on but hope this continues to help. Diana
I forgot to mention, the migraines and vision issues.....still have them, totally unrelated to the tumor. If it hadn't been for my vision problems, I wouldn't have had the CT and it could have ruptured evently. So, even though I have this I am thankful for it! Diana
Shahinian did my surgery - he may not be the best for you but I was extremely happy... please do a lot of research and find the best doctor for your tumor. Do not hesitate to travel if you feel you have found THE one. Research your tumor, who has written a lot of papers, find a center of excellence. Get numbers. Some will do a sell job, some surgeons are good/excellent and have no personality so you have to pick what is best for you and what is most comfortable for your situation.
I am so glad to see that I am not alone in this. I am scheduled to have pit surgery next thurs at montefiore in the bronx with dr lasala. Not something I am looking forward to, he is going thru the nose. Anyone who has had the surgery I am interested in the real scoop of what to expect after surgery. I am a teacher and I need to be on my feet in about 3-4 weeks. This is emergency surgery since the stupid thing grew from 4mm to 6 in a year and just now my vision is getting blurry. Everything I am reading is so informative and comforting at the same time!
Muffinmom,
My surgery was endonasal and for the most part all went well. I had surgery on a Tues. at noon and was to be checked out on Thurs morning but due to a spike in B/P at the end of surgery they put me in the ICU for 24hrs, which added another night and I didn't leave until Fri morning. I've never had any type of surgery before so this was a new experience. I was out of surgery at 4:30 and groggy for that night but do remember some. They did another MRI at noon the next day (I think). My nose was stuffy and I had to breath through my mouth which made my mouth very dry. There was some nose drainage and you can't blow your nose or sniff. (keep kleenex handy) They also kept me at a 30 degree upright position and I had to do that until my followup appt 2 weeks later so I just slept in the recliner when I got home, which worked fine. That helped me breathe better too. They sent me home with a saline rinse which helped. Because of the dry mouth I found it hard to eat meat and drier food, preferred yogurt, applesauce, soups,etc, and lots of liquids. The first 2 weeks I took a 2 to 3, short naps a day and after that energy increased slowly. I found out a few weeks later that I was anemic so I was a little slower at getting energy back. I was also told NOT to bend over until my followup appt so I got pretty good at picking up some stuff with my toes if I dropped it. My surgery was in Los Angeles and I live in San Diego and my trip home was no problem. There were followup blood tests the next week and I did them here at my Kaiser (my HMO) and they have done all my followups. Oh yeah, they gave me a blood sugar tester and I had to do that for a couple weeks until I saw my Dr. here. Apparently, any surgery can throw off any blood sugar (I'm not diabetic). I avoided going anywhere for weeks just so I wouldn't pick up a cold, didn't want any nose complications. There is a lady at my support group that is a teacher (elem sp ed) and she went back to work after 3 weeks but said she was very tired and wished she had taken one more week off. I'm retired (62) so I didn't have that issue. It's really pretty easy except for those instructions, which I followed. This was my experience but others may have a different one, no one is the same. Hope this helps and that I covered everything. Diana
Thank you so much Diana for the information it is good to know what to expect with this. Have your symptoms gone away since the surgery? My endo swears that everything I have is because of the Cushings but I don't think everything can be blamed on that. We will see, I just want to get this growing thing out of my head!
Muffinmom,
I mentioned in another thread that my pre-surgery symptoms turned out not to be related to the non-secreting tumor, therefore I still get migraines and still have a double vision problem related to a retinal problem. My post surgery symptoms that I just described, stuffed nose, etc. are all gone. One of the post surgery things I forgot to mention was a headache right after surgery for the first 24 hours. That was over by the third day and I didn't even take tylenol after that. I still don't think I have as much energy as I use to but my thyroid is slightly low and the endo is watching that plus I'm not as young as I use to be. Everything else is normal and in fact we are leaving for LA today to babysit our 1 year old granddaughter. Now, that wears us out! The best to you in surgery this Thurs and I will be thinking of you. Please post how you did. Diana
Thanks to everyone for all the info and posts. I haven't gotten back to you because I have been so busy trying to figure this out! I have been told so many different things here in Vegas, that I don't believe they know what they are doing or talking about. I did contact UCLA and was told to go thru neurology, get current scans and make an appointment. Made sense. But I kept searching the net and found a support group there in California. And on her site, she has some videos of a Neuro-endo guy and they were very long and very informative. I got his number off her site posted under great docs and got an appointment for September. Well, I decided to just call Dr. Kelly at St.Johns, and I was so impressed with the receptionist there. She told me to immediately fax over all records , scans, and any info and they would get back to me. She told me they got back to people usually in 24 hours. When I didn't hear anything for a week, I called them. They had a full set of orders for me. He had reviewed the films , bloodwork and I was given a diagnoses of pituitary adenoma but they still aren't sure what type. Since no one has ordered a scan here in over a year, I am going to get a 3D one ( which is going to take a month to get in there) and lots more bloodwork. They told me they were , as always, shocked that the doctors here haven't done any more but I guess that is normal for this tumor!! Damn it! I just wanted to say that I feel very good so far about Dr Kelly and St john's from all I've read and what I have seen from them so far. Much more concerned about this than anyone else and that feels good. I have been ignored for too long. The next place I will call tho is the Skull Base Institute on your recommendations as I will want a second opinion, want to meet these guys and see who it is that I want to operate on my brain. I am like everyone else...excited to FINALLY be doing something and holding the hope of getting all better soon...and the fact that this is still brain surgery and that the carotid artery is Right in the line of incision..one wrong move and you can have a massive stroke. I am going to an EXPERT....no matter what anyone says, this is a very big deal. I am not paranoid. Surgery is better than what I am going thru. But caution goes a very long way. Like you all said..a guy who operates once a month is no match for guys who do this and only this and keep statistics. Reputations are hard to build so my advice to anyone else is more of what has been said...get someone good who you believe in. I read 'the 'places to go are: Mass. General/Harvard, UCLA, Pittsburgh, Skull Base Int. , and St Johns. I'm sure there are more..those are only the ones I had a chance to look at. Wow...maybe I can get this finally taken care of!
Some posters mentioned UCLA and a prominent pit dr there. Stanford also has a good track record with pit tumors. And retired Dr Charles Wilson (one of the founders of the Transphoidal surgery) was the Head Neurosurgeon at UCSF.
25yrs ago when the Transphoidal surgery was new, I had surgery for a Prolactinoma. Eventhough I was diagnosed at UCSF, I didn't have ins. and had to go through the county that I lived in.
I purposedly did not ask the neurosurgeon if and how many of these surgeries he had done............because I was afraid of his answer and had no choice. Fortunately he brought in an ENT to assist and rebuild my sinuses. So I think that I did better then most.
Last edited by Anita Porpoise; 08-05-2008 at 02:05 AM.
<removed> I had my surgery at Stanford and was very pleased though UCSF and many others have good reps. The most important thing is how many of these surgeries do they do.
Last edited by mod-anon; 08-05-2008 at 10:49 PM.
Reason: do not instruct members to do outside searches
Bethlee,
Did you ever have your appointment with Dr. Kelly? If so, how did it go and will he be able to help you? The receptionists there are very nice and knowledgeable. By any chance did you go to September's support group meeting? Sorry for the late inquiry, I thought about your meeting but haven't been on the boards recently. Diana
Re: Looking for surgeon to remove Pituitary Tumor 
