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1998158 tn?1327357114

Pituitary Tumor Surgery in November 2013

I have a tumor on my Pituitary Gland and for the past year and a half, I have been experiencing brain freeze feeling headaches over my left eye. They only last for 60 seconds and I only get them in the morning. My neurosurgeon advised me that the tumor has grown. The dostinex is controlling my prolactin level but it is not responding to stabilizing the growth of the tumor anymore, so I have to have it removed. I was wondering what are the post symptoms that I may experience? Did the removal of your tumor help or added more problems? If your in the DMV what neurosurgeon did you use?
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Avatar universal
What replacements are you taking?

If you have such sharp headaches, if may (or may not) mean a CSF leak which can be a function of anatomy.  So you may want to get checked out.

The stitches should dissolve, not fall out - at least that was how mine did. I did have some scabs fall out.

I was able to drive as soon as the pain meds were not being used and I used very little post-op frankly. I had very little pain from my surgery - my pain was from weaning off the cortef!

Surgical recovery is one part, hormonal is the other - so make sure your endo is covering you too.

As for your brother-in-law, sometimes the entire tumor is not removed as parts are simply inoperable due to location. If the tumor is near the optic nerve, parts in the cavernous sinus or wrapped around blood vessels, then the surgeon cannot remove it all and that is normal. He should however be followed so re-growth can be monitored and depending on the tumor, radiation may be given.
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1998158 tn?1327357114
Hello,

I am so glad that your daughter has weathered the storm. Prayers go up, Blessings come down!

How old is your daughter? Did she a radiation after the surgery? If so, is that because they didn't remove all of the tumor?
Helpful - 0
1998158 tn?1327357114
:-) Hi! I would like to THANK you for your support and the information you gave me.
I had the surgery on 11/7/13. The tumor was removed successfully! Thank you Jesus!! All my levels went back to normal, my MRI showed that all of the tumor was removed. I stayed in the hospital for 4 days, because I was sleeping too much and I was not eating at all. The Doctors wanted to know if I was sleeping because of the medicine or because of spinal leakage. They found the sleeping was from the medicine. I still have not gained my appetite back yet, which I am not concerned because I lost 12 pounds :-). I would love to keep the weight off.
Okay so, now 3 1/2 weeks after surgery the splints are out and I am now waiting for the stitches to fall out. I haven't started driving yet as the Doctors advised me not to drive for 3 months, uggghhh. I find that if I do a lot one day, the next day I am tried and my head feels pressure (not headache feeling though). I have had in the last week the sharp brain freeze headaches that I was having before, which is alarming, however I know I am recovering.
After hearing about my condition I have found that my brother in law had the same surgery two years ago and all of his tumor was not removed. I am referring him to my neurosurgeon.
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Avatar universal
My daughters neurologist was suprised she wasn't having several major headaches and visual loss before surgery. She did have hypothyroid, lack of energy, difficulty w concentration, excessive thirst. This was all due to the tumor pressing on the pituitary. Her surgery was done up the nose through the sinus cavity without any complications *praise God!, in Lexington, KY on a Tuesday and discharged on Saturday. We were very pleased with everyone & everything regarding her surgery and care. The first 7-10 days there were some headaches, nothing real scary where I called the Dr, very mild visual loss in the far periphery, not noticable to her. The tumor was located near/on the optic nerve (where your vision comes from). 4wks post op she was back in school full time. After 3mos & a second opinion for radiation treatment. *We always got a 2nd opinion* 8wks radiation therapy was completed on Thurs & she returned too school on Monday. Radiation therapy was due to her type of tumor poss returning if no treatment was done. Follow up appoint every 3-mos the first year. She's in school and doing well, Praise God!
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Avatar universal
My surgical recovery was like that - but my hormonal recovery - due to underlying undiagnosed conditions - made my recovery difficult. So post-op pit I had a bit of a longer time getting back to work (but I did work from home!).

I went back and then after my adrenals were out, my muscle issues precluded me from going back again - so I am on on disability. I loved my job too so it was a blow.

I was only in the hospital 2 days. Mostly to make sure the hormones post op were stable. What type of tumor do you have? There are many types - so you have to know! Did you get testing before? Is is micro or macro (under or over 10mm)?
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1998158 tn?1327357114
Thanks for the response. Headaches going away after surgery is really good news :-). Although they last a very short time, they are intense. I am so nervous about this surgery. I received my admission instruction papers yesterday and just cried.

The surgeon said that I will have to stay in the hospital for 3 days and I will be off work for 4 to 6 weeks. Was your recovery about the same time? I am sorry I love to work and really like my job. I truly don't want to be off that long, but it's all in the name of getting healthy.

I am so sorry you had to have so many surgeries, are you doing okay now?

Thanks for the information, it's good to talk to someone who is experiencing the same symptoms. I really appreciate it :-).
Helpful - 0
Avatar universal
Sorry about the headaches. The good news is that they do go away after surgery.

There are good surgeons near you at UVA and NIH as well as in Maryland so you have a lot of choice.

I had the surgery myself. You want an experienced surgeon - and you want endoscopic not microscopic (they can see more). I had hardly any symptoms post op. I felt great. I think I took only a tylenol. They only were monitoring for DI (too much pee!) which I was borderline) and so they have to keep taking tests.

I had two tumors, prolactinoma and Cushing's. My prolactinoma resolved completely. My Cush tumor eh... it grew back.

So you always have to monitor!

Surgical recovery is a few weeks, hormonal recovery can vary depending on you and your tumor. At the very least most take thyroid, usually forever, and cortef for a short term. Other hormones may have to be added and you have to watch for infections and DI short term.

I have had a ton of surgeries - the pit was an easy one.
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