OMG! I have a brain tumor

[TheGh0st 9]

UPDATE:

Got tired of my DH calling every hour yesterday asking if I the refferal clerk had called with an appointment time yet so I bounced from person to person until I finally found someone who would even try to help. Then all she could tell me is that she saw I already had an appointment set up in the system with a neurosurgeon. Only no one had called to tell me this. And get this the "STAT" appointment my doc requested is set for JULY!!! Can anyone tell me on what planet 9 weeks is Stat?

The gal I was talking to couldn't explain why it was so long, couldn't/wouldn't give me a direct number to the neurosurgeon's office and said I'd have to wait until the referral clerk called me to officially tell me when the appointment was to find out why it was going to take so long. I AM STILL WAITING FOR THAT CALL!!!!!

THEN, I went online to do a little background check on the doctor they had scheduled me with. After all maybe he was so good it took that long to see him. Who knows that may still be true but according to the internet he only graduated just under 2 years ago and he doesn't even specialize in Brain tumors or Pituitary disorders.

Needless to say this didn't sit to well with me or my DH. So when he got off work he started making phone calls to the insurance company as well as neurosurgeons off our in-network list. And within a couple hours he had 2 different appointments with neurosurgeons who both specialize in pituitary disorders one of them in the same group as the appointment my doc's office has yet to tell me they set. And get this both appointments are for next week! Kind of interesting how my husband was able to get an appointment 8 weeks sooner than the doctor's referral clerk who was told to get a STAT appointment, and they work at the same university hospital.

[kathystrick 3]

SO glad you were able to get an earlier appointment! Thank goodness for persistent husbands. Please keep us posted and good luck.

[Savedbygrace 11]

Congrats on the earlier appt. I'm like you, I would have NEVER waited that until then either. Thats crazy that they would put if off like that and then never let you know anything. We'll continue praying! Let us know how the appt goes!

[Kat817 19]

I'm so glad your DH was so proactive in the situation!!! Seeing a Dr. next week is definitely preferable.

That is what I am preaching at my DD-----get on it! Do it yourself!!! I hope she does as well as your DH---otherwise her Mama is gonna have to step in!!!

Hang in there, let us know!!!!!

Kat

[gadgetlady 4]

My mom always taught me not to take "no" for an answer when it comes to medical care -- DEMAND the best. Glad to see your dh did this on your behalf.

[TheGh0st 9]

Yes I have to say this is one of those time that the "d" in DH actually stands for Darling :cool2:

[juliegeraci 7]

I am so sorry to hear about your tumor. Keep us updated on your progress.

[TheGh0st 9]

The neurosurgeon wanted me to see an opthamologist before my consult next Thursday as well as a bunch of new blood tests. So I went in yesterday morning and I swear they drew nearly a pint of blood out of me just for testing. She kept pulling out more and more vials, of different sizes and shapes. When I asked if she was looking for something special she said "No dear the doc has requested all of these." Even with fills I'm not thrilled with needles so I just bit my knuckle and tried to focus on that instead of the needle.

Then I saw the opthamologist yesterday afternoon. He confirmed that there is a small amount of vision loss in one corner of my left eye. It is in the area near your nose just below the eye. They make you stare at a light in the middle of a white box then press a button each time you see a flash somewhere else in the box out of the corner of your eye. Apparently I missed flashes in that area just out of the one eye with the tumor pressing on the optic nerve.

Don't think I'll hear anything new now until Thursday. I'd had an appointment on Monday with a different doc but after researching him a bit online and through other contacts I decided to cancel his appointment.

Thanks again for everyone's concerns. I'll let you know what she says on Thursday. Just keep sending those good vibes my way. I have a trip to Vegas the end of June I really don't want to have to cancel so I'm hoping this can either be removed quickly enough to recover before then or postponed until I return.

[brandyII 9]

The Ghost,

Did you have any pain in your forehead on the side where your tumor is? brandyII.

[Fenton 3]

Ghost! What a pain in the ass! (Can we say that? Perhaps I should have typed @$$?)

You seem very rational, which is completely appropriate - you'll be absolutely fine. Because of the position of the pituitary gland (behind and between the eyes, just above the top of the nose), it's the easiest type of tumor for the surgeons to reach - a nose job would be a far more unpleasant surgery to have! You probably will have to have replacement hormone therapy, but it shouldn't be too bad at all; and don't worry about your thyroid: your endocrinologist will keep up on it, particularly if you keep up on him or her! Because you have only a small amount of visual field problems, it's likely that the tumor is still pretty small, but it's big enough that they feel that you'll be better off with it out than in. And since you've been having the hormonal problem for a couple of years, and it's STILL pretty small, you know that the tumor is growing very slowly.

So, you'll be fine, and you're right that your major concern should be that you don't have to delay your trip to Vegas!

[NukeChik 1]

I just found your thread today...

Sending good vibes your way!! Keep us posted, you're in my thoughts

[green 6]

Ghost, how are you doing? And what is the latest news? Please keep us in the loop.

[TheGh0st 9]

Well Thursday's appointment was a mixed bag. I found out that it is not a functioning tumor producing prolactin itself but instead a non-functioning tumor that is just pressing on the pituitary stalk which is blocking the hypothalamus from sending the pituitary gland the signal to stop producing prolactin. They call this a stalk effect.

What does this mean? Well, it seems to mean that drug therapy would not work as it works best on tumors that are actually producing the prolactin. They also said that even though I am experiencing some apparent loss of vision in my left eye that the tumor is only very close to the optic nerve but not yet pressing on it. Meaning they think I have some other yet to be diagnosed issue causing the vision changes.

So where do I stand? More tests, more specialists and a big decision to make with little assistance from the doctor. She says that as far as the tumor goes, I don't need to be rushing in to have it removed in the next few weeks but that considering my age and its current size I will eventually need it out sometime in my lifetime. I can either choose to do so now and accept the risks that come along with surgery, or I can take a watchfull waiting approach with regular 6-month MRI appointments and wait until it grows large enough to start causing more serious problems. Taking on the inherent risks associated with that approach. I guess I'm leaning towards having the surgery sooner rather than later and waiting a few months rather than years.

I just wish I could figure out how to convince my family it was a good idea to have my breast reduction surgery first. I already lost the argument with the doctor over having them both around the same time and just taking off work once to recover from both.

[TheGh0st 9]

Oh, I have to tell you an amusing story from the appointment. My DH has been so worried he was not eating or sleeping well in the days running up to the appointment. When we got there he kept complaining he was hot. I'm always cold now so I didn't pay him much attention. Next thing I know in the middle of the doctor outlining the problems and risks with both surgery and waiting while pointing to various parts of a plastic cutaway brain she was holding my DH nearly passed out. He had to lie down on the examining table and the nurse ran to get him some pop and a candy bar while the intern stood there with a fan over him. Poor DH felt so silly, he kept trying to get up but everyone was telling him to lay back down.

I think I was the only one in the room trying to hold back a laughing fit. But lord help me at least it shows he cares.

[Frangipani 1]

Hi Diane,

I cannot believe that I just found this thread, but add me to the list of those sending lots and lots of good vibes your way.

That is a really funny story about DH, he sounds like a wonderful guy. Thank goodness you have him at your side to see you though this.

Best of luck, and I hope you are able to arrive at a decision that gives you peace and comfort very soon.