OT: Health Question

Submitted by cincygoblue on March 11th, 2019 at 1:20 PM

My brothers...

after a week of persistent headaches I was diagnosed with a benign tumor on my pituitary gland. I’m 28 years old with no other health concerns, daily meds, or allergies.

I was just diagnosed yesterday, and am waiting on docs to read my second MRI that was more focused on my pituitary gland. The medication I’m on has made my headaches go away, the believe the headaches started because my gland was bleeding. 

Is there any hope I will be able to avoid surgery? Even if I don’t, the surgery sounds very routine, would anyone agree?

I appreciate you all, we are all due for some health scares at some point. Thank you. Go Blue!

Comments

Sandy Lyles Revenge

March 11th, 2019 at 1:25 PM ^

Can confirm no surgery is without potential issues, especially brain surgery. That being said, trans-sphenoidal pituitary surg is in pretty routine. 

I’ll add that symptomatic but non-functional pituitary adenomas, are not super common but they are not all that rare, and malignant transformation is not a thing you need to worry about.

 

Cheers 

Sandy Lyles Revenge

March 11th, 2019 at 4:21 PM ^

That’s a negative. But I assumed some people would get bent out of shape about a word missing here or there so certainly was edited to reflect the most appropriate amount of information for a message board. But thanks for checking my posting history. 

Also don’t turn this poor guys health post into your personal forum to lash out at people. 

Hab

March 11th, 2019 at 4:49 PM ^

Don't confuse lashing out at someone with expressing legitimate skepticism.  You offered a fairly specific diagnosis, treatment plan, and likelihood of success based on very little  information from the OP.  Expressing that skepticism and checking the posting history of your month-old account seems warranted under the circumstances.  The fact that many of your posts don't necessarily go hand in hand with what someone trained to diagnose and treat brain conditions and suggest treatment options has me thinking that, rather than being a brain surgeon, you might just be someone who stayed at a Holiday Inn Express last night.   

I'mTheStig

March 12th, 2019 at 2:52 AM ^

Don't confuse lashing out at someone with expressing legitimate skepticism. 

IDK man, kinda of a douche move.  I can explain the difference between Keplerian and Cartesian orbital elements but my history is full of "fuck sparty" and calling WD out on his two-faced bullshit.

I'm unaware of the blog rule which says one is related to the other.  Unless that's a symptom of the MGoGroupThink so prevalent here.

mGrowOld

March 11th, 2019 at 1:30 PM ^

As someone also diagnosed with Cancer I truly hope your health issue clears up and doesnt impact your life in any way.   I would also suggest the following:

1. There is ALWAYS hope.  Never, every give up on that.

2. The definition of "minor surgery" is surgery performed on someone else.  Any surgery done to you should be considered major.

3. You can read what people post here but man oh man for the love of God dont take any medical advice from randoms on a Michigan sports blog like me or anyone else here for that matter.  See your doctor and if you want additional opinions on your treatment ask for a referral.

Good luck.

cincygoblue

March 11th, 2019 at 2:32 PM ^

THANK YOU sir, 

always hope. I truly believe we are all due for our hardships. I was just tell a coworker last week that I NEVER get headaches unless I’m hungover. 

Thank you everyone for your kind words, I’ve never had any medical scare in my entire life, this isn’t going to to slow my life or my career, and happy as always to be part of this community. 

mGrowOld

March 11th, 2019 at 4:37 PM ^

Years ago my daughter had to have surgery to have a lazy eye corrected.  I was telling somebody about it (I was obviously nervous) and they said "oh that's just minor surgery - she'll be fine".

I told them minor surgery was surgery done on YOUR kids, not mine.  Anytime somebody is going under it's fucking major as hell surgery.  It might be relatively easy for the surgeon to perform but all surgery is major surgery to the patient and their loved ones.

Ironically I now am a part owner of a medical device company that provides a tool surgeons use intraoperatively to locate, assess and protect nerves in complex cases where the human anatomy has been distorted.  So I deal with surgeons, surgery and the patient outcomes every damn day.

 

The Harbaughnger

March 11th, 2019 at 10:49 PM ^

Feel you mGrowOld...

Our 3 yr old son is having double bilateral lateral rectus recession (strabismus) surgery next Weds- has to be inpatient due to terrible reactions he has to anesthesia... necessary evil though- can't cut if he can't sit perfectly still.

Will be his fourth surgery since birth, first three for hydrocephalus/shunt failure.

You could say we're a little grateful for Helen Devos Children's Hospital.

Life is way more fragile than we assume- luckily have been forced to learn not to write things off as 'just minor'...as well as to drink in as much life as you can with every day you're given, because as cliché as it sounds, it is crystal clear to my wife and I that you never know when it could be the last for a loved one or yourself...put another way, "attack each day with an enthusiasm unknown to man kind" -JMFH

Thoughts and prayers with you, cincy!

saveferris

March 12th, 2019 at 8:19 AM ^

Seconded.  Both of my kids have had to go under anesthesia to get tubes in their ears.  It's the most routine of surgeries for kids and yet until they open their eyes and confirm to you that they're alright, you don't stop agonizing over the possibility that they'll be the 1 in a 1,000,000 case where sometime goes terribly wrong.  Routine surgery is a myth.

GRboy

March 11th, 2019 at 1:33 PM ^

Pituitary apoplexy. Not too common.

I had this too in my early twenties.  

Headache will be there as long as you have blood on your scans. 

I did not have surgery.  It depends on how much of the tumor persists after infarction. If no surgery, you’ll have an occasional MRI every few years to r/o recurrence. 

The greater issue is how much endocrine function you have lost.  The hormones are lost in the order of GH, then LH, FSH, TSH, and then ACTH (ant. Pit.) 

There are a lot of options to replace hormones, including FSH/LH if needed fir fertility.  It’s an interesting go. 

I should probably also add that I’m a doc for credibility reasons only. 

 

BoCanHam15

March 11th, 2019 at 1:38 PM ^

Praying for you Cincy. Don’t worry you’ll be fine.  As far as the surgery I’m not sure the Docs I’m in touch with were and are mostly Peds, however I’m claiming victory for you and your family throughout this process.  Stay positive my friend, and may you be blessed.

teldar

March 11th, 2019 at 1:49 PM ^

Am not a surgeon. But I do anesthesia. Seen many transsphenoidal surgeries. They go through the nose and it's not like having a mass removed from a lobe. 

 

If a surgeon tells me I should have transsphenoidal surgery to have a mass removed or what-not, sign me up. The last thing you want is a pituitary avm killing you, or a polyp turning into cancer. That's why you have colonoscopies, to look for polyps before they are cancer, hopefully.

ColeIsCorky

March 11th, 2019 at 2:24 PM ^

Prayers for you my friend. Had my fair share of health scares over the last few years as well. Not easy. Trust the doctors, as that is what they are paid to do. Get a second opinion if necessary. And try not to stress about what you can't control (speaking to myself here). God bless!

jigsmcgee

March 11th, 2019 at 2:47 PM ^

similar situation, mostly going to be head games going forward.

Recommend examining your diet, benign tumor or not.  

I cut out sugar and gluten completely, dropped 30 lbs and feel like i have unlimited energy.

MichCali

March 11th, 2019 at 2:52 PM ^

I would listen to your doctors, and NOT the Mgoblog community on this issue.  Just me, but they probably have a more informed opinion on your situation.

papabear16

March 11th, 2019 at 3:03 PM ^

I have all of the medical training you can get at the College of Engineering and the Law School, so ...

My wife has a benign tumor on her pituitary gland. I have no idea whether it is the same type as yours. But she was advised to just leave it alone. She does take some medication for it---now down to half a pill two nights per week---and that's it. The doctors have monitored it since it was discovered maybe five years ago, but have never seen anything concerning. Her prognosis is that it should never affect her life beyond (in her case) some occasional medication and checkups.

I hope that yours is like hers.

God Bless.

Sideways_Rain

March 11th, 2019 at 3:53 PM ^

Cincy,

Another medical professional here, although not a neurosurgeon. I will echo that whatever your Doctor recommends is likely the best route, which you seem to know.

That said, the most common type of pituitary mass is called an adenoma, which are more common than you would think and almost always slow growing and benign. The fact that it has been giving you headaches (and the bleeding) leads me to believe that it is likely of the larger variety (a macroadenoma). That doesn't necessarily mean it is worse in terms of outcome. Many of these masses also secrete one of the numerous pituitary hormones which may or may not cause other symptoms. If so there are a few medications that tend to work extremely well and actually cause the tumor to shrink in size. My guess is that they have already started you on one of these medications. If it works, wonderful. If it doesn't, usually surgery to remove it is the best option. No matter what though, outcomes are generally quite good.

I will reiterate that your personal doctor likely knows best, and what I have said is mostly educated guesswork based on my knowledge and the info you have provided. I hope it gives you a little bit more context and comfort. Best wishes and go blue.

cincygoblue

March 11th, 2019 at 4:34 PM ^

I really appreciate this post, and will follow my doctors orders. I actually have relocated a few times since making my mgoblog handle and am in Louisville. The specialist that is seeing me is the best in the region.

I’m taking dexamethasone every 6 hours, and pantoprazole once a day. I have some pain and anti nausea pills also but haven’t needed them since being discharged. 

Thanks again for your insight. 

Jgruss42

March 11th, 2019 at 7:25 PM ^

Hey there (PM&R doc here - I do a little brain injury, lots of sports medicine, which includes headaches, but excludes YOUR headache).

 

A few things not mentioned so far:

1) bring someone you trust (spouse, sibling, parent, etc) to every doctors appointment. Give them a job: take notes. YOU will certainly get too much information to process. Having another pair of eyes and ears is very helpful (presuming the person you bring isn't freaking out themselves).

2) It is OK to look up stuff online, but probably limit this to professional organizations and trusted hospitals (Mayo clinic has a pretty good website for patients, for example). You are probably already doing this, but I'm here to tell you that is ok, and very normal. Use a LOT of common sense. Here is a link to the American Association of Neurological Surgeons article on pituitary tumors:

https://www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Pituitary-Gland-and-Pituitary-Tumors

3) They will be doing a lot of blood work. Pituitary tumors often make a bunch of different hormones, so testing ahead of time will help decide which kind of tumor they can expect. A good question to ask would be: 'is there anything else you need to test for when I go to get my blood checked?' That may trigger the physician to say, 'yeah, we may as well get this one too.' Always better to get stuck once for 5 tests than to have to go back 5 times. Same thing goes for imaging (CAT scans and MRIs). Get comfy with those. You will be having more of them.

4) If the surgeon has a Nurse Practitioner, or Physician's Assistant, you should expect to see them. You may see them MORE than you see the surgeon. That can be ok. They will be passing on information to the surgeon, while they handle the bread and butter stuff. Not all offices do this, but I am often surprised about how often patients are shocked that they see the NP more than the doc. It's almost normal practice now, so you aren't being ignored in case this happens at some point.

5) Your job is to notice symptoms. Your medical team will be the ones to decide whether or not to be worried. Don't presume something is minor or major issue. If you notice something change, tell them. They will decide whether it's important or not.

6) find portable ways to distract yourself. There is a LOT of downtime in medicine. Waiting for the doc, waiting for labs, waiting for a MRI, etc. Phones are useful; little books of sudoko, crosswords, etc are also awesome and don't need to get charged. You should probably have a backpack with a charger, headphones, book, notebook and pen that you can take with you to appointments. The man-purse of a backpack is super duper helpful on the day they give you 200 pages of stuff to bring home. Also, I assure you, at some point you will be happy you have your charger.

Even in a best-case-scenario you will have a bunch more doctor's visits than you anticipated. 
That super sucks and I'm really sorry you have to go through this. But the reality is that most pituitary tumors are treatable and long term survival is really good. Also, as mentioned above, this seems like a scary surgery, but the side effects and recovery are much better than other surgeries. 

 

cincygoblue

March 11th, 2019 at 8:40 PM ^

Better feedback than I could have ever expected. I have a few associates who became NP’s, so that didn’t surprise me.

I really appreciate your post, I was happy to find out that I still have 20/15 vision and have already had 2 MRI’s and 3 CT’s. I’m lucky that none of these bother me, but I loathe the idea of getting into the MRI machine.

Being in the service industry has given me good perspective on things taking time, being patient on results, and being courteous to everyone in the hospital. I truly believe this helps me receive better service. I know it was true when my wife was in the hospital ahead of our daughter being born in Toronto in October. 

Truly - thank you.