Hi there orangejuice. I too am 18 days post op today. And I sympothise. Since the surgery, I have been extremely anxious. I have been very, very worried about complications. Every sniff is a CSF leak and every headache is meningitis to my worried mind. Before the operation, I was most definately not prone to anxiety. I also suffer bouts of acute depression that are new to me. I also find myself shedding tears over the most mundane things. All very annoying. And as I am a man, pms is not a possibility. My endo seems to think that a lot of it is due to new hormonal variations due to the pituitary having taken a knock during the surgery. She says it should settle down in time. I hope

I am also recovering well, except for the fact that I have been suffering from diarrhoea for the last 14 days. This is making me even more anxious and keeps me weak.

In short, anxiety and depression post op seems to be somewhat common, and you shouldn't worry about it too much.

Good luck with your recovery and hang in there.

Johan (A fellow post transsphenoidal emotional wreck)

Thanks so much so the response :-)

I've had more of a problem with constipation since getting back, I'm on a 80% raw food diet though.

I hope things clear up quickly for you!

I think these variations play a part in the post operative depression.

I've looked at the curative rates and I am not encouraged in my own case as the meds cause the tumors to become "fibrotic" and hard to debulk and remove.

As a result, I believe in my own case, that Radio-Gammaknife may be a possibility. I want a consult to check my options.

The current curative rate, with surgery (in my case) is 30%. The people with Gamma-Knife claim an 80% curative rate.

Either way, I feel I have things to lose if things don't go perfectly. What I fear most is the destruction of the Pituitary. My Endo warns me that it happens and when it happens...I really WILL be taking meds all the time.

We are 23 days post op today :-) Soon that's going to be over a month, & countable by weeks instead, yay.

I was in the car for about 12 hours on Monday and my head hasn't forgiven me for it yet. It's like I'm going through the whole post op head sensitivity issues again, just two steps milder. I think monday was my last freak out too.

I face the same car ride on next week to get home, I probably need to face reality and break it up over two days. It seems like a waste of time, but sitting with head pain for 3 days is a larger waste.

What has been nice is I'm recovering so much faster from fatigue and regular bowel movements. Two wins :-)

I saw a presentation on gamma-knife treatment in October, the technology is pretty amazing and extremely accurate. The drawback was that it could take up to 5-10 years to see the results of the treatment. Considering how long a person might be on drug therapy it seems like a worth while option with few drawbacks.

Seriously? 5 to 10 years to see a difference??

Woot!! had my post-op MRI Wednesday (4 weeks 1 day after) and went back to the ER this morning with a kidney infection. They're not kidding about staying hydrated after the contrast die.

Yes, TP, the radiologist at the PNA Symposium in October stressed that the gamma knife worked so slowly because the tumor cells multiply at an extremely slow rate. So like they do a set of treatments and check-in yearly to see if there's been any progress.

Other radiologists may have different results and expectations from treatment. I certainly received a large range of recommendations for surgery.

Wishing you the Best

That makes sense.

Does the tumor begin to attenuate, however?

TP, that's a question for the experts. The radiologist seemed focused on size rather than strength. PNA may have recorded the session, or someone on the PNA forums might remember the information better than I do.

I'll check that. Thank you!

I got a call back from the GammaKnife people this morning. They want me to fax my information and also send my most recent MRI to them.

But, the representative didn't know if they could shoot a hormone secreting tumor or not.

They do case reviews and consults on Monday's and Tuesday's. We shall see...

Hi tigerpaws -

I was really interested in what you said about the meds making the tumor "fibrotic" and harder to remove.

I'm very curious: which meds do this??

I didn't know about that.

I am not currently on any meds. My endo reccomended it, but, I wanted it see if I could try it without them first. I would go on them if I needed them, for sure, but, if I can get by without them, I'll do that.

I have a microadenoma, and go for tests to make sure it's staying small, and just tolerate the symptoms. I was diagnosed 4 or 5 years ago, and have done fine with no meds. But if I ever need the meds, I'd like to know about the "fibrotic" thing, which my endo never mentioned.

Thank you!!!

From what I understand, the medications (bromocriptine and cabergoline) attach to the surface of the tumor.

As the cells replicate, they somewhat change their pattern of replication and can actually branch out and become fibrously entangled in other tissues in the Pituitary.

The experts seem to think, that if you're going to have the surgery, do it inside the first six months you start the medication. Otherwise, those hair-like projections from the tumor cannot and will not be removed and will only replicate back into yet another tumor over a few years time.

This may not be entirely correct, I'm answering you on the fly, so to speak.

Hi Gonnamakeit,

From what I understand dopamine agonists such as caber and bromo cause tumors to get more fibrous and thus more difficult to remove via surgery. I think this is more relevant in the case of macroadenomas.

Quote from the UCLA website:

Surgery

For patients that do not respond to medical treatment with cabergoline or bromocriptine, surgery is considered
Ideally, surgery should be performed within six months of starting medical treatment because the tumor may become more difficult to remove thereafter. Transsphenoidal surgery is effective for women with relatively small adenomas.
* The long-term cure rate is 80 percent to 90 percent. The cure rate is lower for larger tumors, particularly in men.

Here's a link to the UCLA website discussing the issue:

http://neurosurgery.ucla.edu/body.cfm?id=1123&ref=86&action=detail


Orangejuice, I noticed you mentioned that your tumor was only 2mm, what were some of the reasons behind your decision to go the surgery route? Also, did you get your surgery done at the UCLA pituitary center? I understand they are one of the best in the country.

I was having an extremely hard time with the cabergoline. I was non/low functional for 2.5 days a week, could only digest raw foods comfortably, and loss most the use of my left foot from pain.

The MRI said it was 2mm, the surgeon from UCSF said it was 3-4mm when he took it out 10 months later. The surgeon commented that the tumor was a little sticky, I figure from the cabergoline.

UCLA was our second choice... I'm very glad we chose UCSF, I felt like I got the best care of my life there. I might have felt the same way at UCLA too... I think they are both good.

Even if they didn't get it all out, I'd take the 5-15 years of quality of life it would take it for it to get big enough to bother me again.

It's interesting what you said about the prescription making the tumor get entangled with other fibers. We still haven't figured out how to fix my foot, I'm attempting to get the referral to the right nerve specialist.

Day 37 update: I had a Kidney infection last friday, ended up in the ER. All better now. I am noticing less facial hair growth, a lot more vitality, less insomnia, less headaches, more digestive tolerance for cooked foods. Biggest issue is riding in the car for 2+ hours definitely give me headaches, we've tried both our cars.

Wishing the best to all of you!

Thanks for the information. O.J.