tumor update

[ashley]

Hi everyone,

 I got a phone call on Friday from the UVa pituitary clinic. The doctor I was scheduled to see on Oct. 7 reviewed my chart and declined to see me since I had "too many doctors involved already." What that really means is the doctor I saw previously at UVa (six months ago) - who told me I was making things up - wrote something bad on my chart, so no one at UVa will see me. That's ok, though, I thought this might happen, and I know that God must have another plan. I have a phone appt. with Dr. F on Oct. 31st and we'll go from there. This whole ordeal is really trying my patience, but that's something I need to learn....

If anyone knows anything about hypopituitarism and surgical tumor removal, I'd love the information.

ashley

[dollsie]

Hi Ashley,

I'm sure you'll get lots of supportive replies to this post.

I don't know what to say other than I'm so sorry you're being treated this way. I had a very similiar experience at Hopkins and still have trouble dealing with it on a day-to-day basis. The fact that you're chosing to rise above the infuriating feelings is truly admirable. You're a real inspiration.

I will post an inquiry on a couple of other forums tonight regarding pit surgery and relay the replies to you immediately.

We're all behind you on this. Hang in there.

Leigh

[dollsie]

Hey again Ashley,

I did some asking around. Here is one recommendation: http://www.drjho.com/pituitary_surgery.htm. This doc does endoscopic transphenoidal surgery. Another person recommended a pituitary institute in Boston. You probably already know this, but here is some advice from someone who had a pit adenoma removed:

"What you want to know about the surgeon you are working with is, what is thier success rate, how many of these surgeries have they performed. The more surgeries they have done the lower the complication rate is. Oh yes by the way what is the complication rate. Now that they have figured out the diagnosis this is very treatable. Find the right surgeon and she will be a much happier person afterwards."

I'll keep sending info as I get it (unless you've had enough - just let me know).


Take care,
Leigh

[ashley]

Hi Leigh,

Thank you for your replies (and your support)!
What I'm interested in (and haven't been able to find) is information on surgical tumor removal in people with both hypopituitarism and non secreting pituitary adenomas (like me). In particular, does surgery result (sometimes, often, rarely...) in reversal of the hypopituitarism? I'll certainly discuss this with Dr. F, but so far my google searches have turned up hardly any info....

ashley

[dollsie]

Hey Ashley,

I don't know much about pit problems, but from chatting with people on some other forums, I do know that it is possible to regain function in some circumstances. If I understand correctly, it can take some time to see if the pit "wakes up". Sorry that I can't shed any more light on it...

Here's another reply I got today:

"My surgeon was Dr.K.Reddy.. Hamilton, Ont. Canada. He has a pituitary team with ENT, Endo, and neuro-opthamologist. I didnt really have a choice here.. with the shortage of Drs.  He told me he does about 30 of these surgeries a year. My tumor was massive, and he was able to leave my gland, save my sight, and he thought he got it all. It was a CT scan the next day that showed some remnants remaining. A very serious man, blunt, and to the point. Which I really appreciated in the doctor as my neurosurgeon."

Hang in there, Ashley!
Leigh
p.s. I wanted to give the HC another whirl just to see if I really am allergic. But I didn't want to switch over abruptly, so last night I cut back to 0.25mg Dex and this morning took 10mg HC. At 5pm I took another 5mg HC. Do you think this is too much of a change? I'm thinking it might hit me in a day or two b/c of the Dex half-life...I hate not knowing what the conversion to HC really is. Would love your thoughts on it if you have a chance, but if not, please don't worry about it.

[ashley]

Hi Leigh,

Thanks for that information. My tumor isn't large enough to cause any visual symptoms or headaches (if it was I'd have to get it removed immediately). But it is causing the hypopituitarism. I just wonder if many people get surgery when the tumor is still relatively small. I'd rather do that, if I'm given the option...I'll let you know what Dr. F says....unfortunately it's 4 weeks until I talk to him. In the meantime we'll draw some labs (prolactin, FSH, LH, estradiol). Those have not been done in quite some time.

About the steroid switch. I think you were on .5 DEX, is that right? If so, I think, from the best I can tell, that .25 DEX is approx. 15 HC. So I think what you did sounds just right. Wait a week and see how you feel, then try to switch over a bit more. Let me know how it goes. I feel badly with any switches at first....so I have to give it several weeks before making any decisions.
What thyroid dose are you on now?

ashley

[dollsie]

Hey Ashley,

It seems like some people "watch and wait" when it comes to the pit, and others act sooner. I've talked with some people who've had cysts sitting there for years, and others whose docs ordered sx right away. I guess it's like all of these things, totally individual. I'm sure I'd feel exactly the way you do about it.

Thanks for your advice on the Dex situation. I had come down to 0.45mgs last week, felt the effects after about 3 days - had some lows during the day but still felt over-treated at night. I'm on 66mcg of Levo right now but think I might be a tad hypothyroid. On one hand I'd like to adjust the Levo first, give that some time and then see how much steroid I really need when my thyroid is balanced, but I just really want to come down on the steroids. I hate the idea of being over-treated. I don't know though, there's something about HC that my body doesn't like. Either that, or there's something else going on that the steroids are masking. I'll find out about the Lyme testing and pit hormones this week.

Got another reply for surgeon recommendations - seriously, if this is overwhelming, just say so! Here goes: Dr. Marvin Bergsneider @ UCLA or Dr. Adam Mamelak @ Cedars Sinai

Thanks again for your words of wisdom!
Leigh

[ashley]

Thanks, Leigh. I'm sure Dr. F knows both of those surgeons, since he's in LA too.

If I were you, I'd try to get down on the DEX first, and then switch to HC. Otherwise you're mixing coming down on the dose and switching to a different agent. You might want to do only one of those things at a time. Otherwise, if you feel badly you won't know if it's because you lowered your dose or switched to HC. Just a thought...
Maybe you could try going down to .375 DEX and waiting it out a few weeks to see how you feel. You probably will feel badly at first, but you won't know if that feeling will pass unless you wait it out a bit. I had a really hard time lowering my steroid dose last year. I felt so sick, but eventually that passed.

What do your most recent thyroid labs say? (esp. free T3 and free T4?)

[ShannonD]

Ashley.
Sorry to hear about the way you  were treated.....perhaps the doc does not think surgery is a good idea, but telling you that you have just seen too many docs is straight up rude!!

I do think that surgery should always be approached with caution.  Once they cut.....things are never the same.  I had a friend who had 5 redo lumbar fusions....she was miserable for 3 years straight, and still has some problems.  I am not saying this would happen, but I would definitley look at up and down side.  

I truly think that my addison's is coming from a pituitary problem from pregnancy.  The reason that I mention this is that I can (now periodically) feel the damage in my head....I swear.  

The pituitary is at the bottom of a stalk, below the hypothalmus.  The blood supply there is venous, and very fragile.  (think how varicose veins in legs can get engouraged and tortuous.....blood supply around pituitary is similar.) WHat happens with pregnancy, is that the pituitary grows (just like your stomach), if you have massive blood loss associated with pregnancy, then the blood supply to the enlarged pituitary is compromised, so the cells in the pituitary atrophy or die....sometimes the damage does not show up until years later. This is sheehan's syndrome.  I am almost positive that this is in part my issue.  Why?  Because I can feel it.  Sometimes I feel as though that stalk and fragile vasculature just collapse and I feel the weight of my brain sitting on the bony structures....incredibly uncomfortable pressure.

The reason that I bring this up is because with surgery, they are cutting right in that area.  If there is not a fair degree of confidence, that you will not be left with side effect from the surgery, AND that it is likely to help, I want you to be careful.

I do not want to frustrate you, but as you mentioned....maybe God has a plan.  So keep an open mind, ask questions...get a couple of opinions.

Dusty mentioned that you have had lots of trouble managing your meds, and had asked if the pituitary tumor might be related.  What kind of trouble have you had?

Did you ever have head trauma (or blood loss during pregnancy)?

By the way....I can definitely relate to wanting to have a surgical fix.  Every since i have started to go through this....I have almost hoped for a tumor or something they can just cut out. Sadly, I think that is unlikely.

I am very interested in what (the good) doctors say.  and am hoping you all the best, whatever the outcome.
Shannon

[ashley]

Hi Shannon,

I think what you wrote is exactly right. I need to know whether surgery both has
a) low chance of complications *and*
b) good chance of reversal of hypopituitary.

From what I've read, the most common complication of pituitary surgery is hypopituitarism, which I already have. But maybe there are other complications that aren't talked about as frequently...What I don't have a good handle on is b)....how often does hypopituitarism reverse with surgery? This is what I really need info. on.
We'll see what Dr. F says, then I'll go from there.

Have you had a pit. MRI?

ashley

[ShannonD]

Ashley,
I did have a pituitary MRI, but the slices were not thin enough.

Do you have headaches?  Actually my only concern would be if you did not have headaches, that post surgery you could develop them.  But maybe that is not the case.  Just a question I would have.

I agree with the hypopituitary thing, sounds like that is not in danger of getting worse.  

I am definitely interested to hear what Dr. F says.

If I continue to get worse headaches over the years, I might have my MRI rechecked.

Take care,
Shannon

[ashley]

Hmm...
I never thought of that. I don't have headaches now. I wonder if post surgery headaches are a common complication. I'll certainly ask. Thanks for your thoughts!

ashley

[ShannonD]

Ashley,
Did Dr. F check your growth hormone.  Did he do the IGF-1 test?

Did they do the GHRH-arginine test (this requires intravenous infusion of arginine.)
I was reading on Dr. F's web site that benign non-secreting pituitary abnormalities may result in growth hormone deficiency which has normal GH and IGF-1 test but abnormal GHRH-arginine test.

http://www.goodhormonehealth.com/symptoms/nonsecretingdef.pdf

I am reading all the articles on his site (worried about my own pituitary) and this article made me think of you.
Shannon

[ashley]

Shannon,

Thanks for pointing this out! I hadn't seen it. No, I've not had the GHRH-arginine test done, but I will ask for it. (IGF-1 was normal).

ashley

[babs]

Hey Ashley..i didn't have a chance to look through all the postings but if you're looking for a second opinion you should definiately try out Dr. Ian McCutcheon. Dr. F uses him often as do many Cushing's patients. I know that if you've had an mri done you can email him and ask him to look over it. Lately he's been busy but he will email you back with his thoughts and suggestions. He's at the University of Texas Anderson Cancer Center and performs several transphenoidal surgeries a week. From all I've heard from him he's a wonderful guy and amazing surgeon. If you're interested I can track down his email for you

Best of luck,
Ashley

[ashley]

Yes, that would be great! I would really like to have his email if you can find it. I think a second opinion is a good idea in this case.

ashley

[babs]

His email address is:
[e-mail]

I would send him an email briefly explaining your situation and ask him if he'd be willing to take a look at your MRI's. From what I hear it may take awhile, but he's brilliant and a nice guy so it sure doesn't hurt asking. If he's willing to look at your scans the address to send them to is
Ian E McCutcheon MD
Dept of Neurosurgery
M D Anderson Cancer Center
1515 Holcombe Blvd, Unit 442,
Houston, Texas 77030

Best Best of luck to you!
Ashley

[Idaho Dusty]

Ashley,

I wonder if the doc that won't see you is embarassed or afraid that you will sue since he/she dropped the ball with your diagnosis.

My friend Kate knows a ton about hypopit and tumor removal.  I will contact her, would it be ok if I gave her your email address?

:) Dusty

[ashley]

Dusty,

You might be right - I've thought of that possibility. It would be great to be in contact with Kate - you can give her my email.

Thank you for your help!

ashley

[ashley]

Hi all,

Here is the latest info I found on a PubMed search. (Search for:
"Pituitary hormonal loss and recovery after transsphenoidal adenoma removal")

The bottom line is that the recovery rate for those with hypopituitarism caused by a non-functioning pituitary adenoma (like me) is 24%. Not a very good number. At this point, it isn't looking like surgery is the best option. But, I'm still waiting to hear the final word from Dr. F. I'll keep you posted.

Good news, though. I recovered from the flu about a week ago, and the last few days since then I've been feeling better than I have in a long, long time! On Mon I ran 30 min, followed by 60 min of ashtanga yoga. Today I swam 60 min (2900 meters)! So that's great news. :) Tomorrow I'll try the run/yoga again...

ashley