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Enlarged Pituitary and an apathetic Medical System
I have been complaining of severe headaches for over ten year. Almost every doctor told me it was nothing. In 2001 and 2004 I had MRI's done of my brain, they told me they didn't see anything worng. LAst month while driving through Arizona I passed out behind the wheel at over 80 MPH and was lucky enough to coast to a stop alongside the highway. My wife drove the rest of the way. That incident prompted them to do yet another MRI w/Dye. I brought my old MRI's with me. I was told my Pituitary is enlarged quite a lot, but not yet touching the optic nerve. Then they reviewed the older MRI's and said the condition had been there all along. (and this all coincides with my headaches and other problems like emotional problems, lack of libido etc.) Now finally, I am scheduled to get examined by an Endocrinologist and then back the the Neurologist. They do all this in Series instead of parallel, making you wait forever. If THEY were having the headaches, if THEY almost killed their wife while driving, if THEY were having huge mood swings I wonder how they would react to this slow process. It seems everyone wants to see you, then schedule you for next month and on and on. I guess to pay for that Mercedes.
When I ask if it can be treated etc, I just get the same thing, the doctor will speak with you about that. Yeah and the schedule is two months out. I might have to move back to Thailand where the healthcare is better and the doctors don't act like little gods.
I cant tell you how disgusted I am with the horrid lack of concern by most in the medical profession. 10 years of headaches and severe problems because nobody looked close enough to see this problem.
I wont sue, but I can certainly see why people do.
Sign me digusted.
When I ask if it can be treated etc, I just get the same thing, the doctor will speak with you about that. Yeah and the schedule is two months out. I might have to move back to Thailand where the healthcare is better and the doctors don't act like little gods.
I cant tell you how disgusted I am with the horrid lack of concern by most in the medical profession. 10 years of headaches and severe problems because nobody looked close enough to see this problem.
I wont sue, but I can certainly see why people do.
Sign me digusted.
PS, sorry about the typos in my previous posting. I also want to comment on how long it takes to make Dr appointments. YES, it can take months to schedule an appointment with a Endo..then several more months to see a Neuro Surgeon.... then several more months to get a second opinion. It is just rediculous . All of the Endos I have seen have been SMUG and dont want to take time to answer any questions . I hear its even worse in canada but I cant imagine it being worse! If you go to a University pituitary center for treatment as I did ( OHSU ) in Portland oregon, the positive part is you will get 5 minutes with both the Endocrinologist AND the Nuerosurgeon at the same appointment and they will discuss your case together with you ....but you will need to pay for hotel rooms, transportation etc. Also, I had several cortisol , GH , speciality tests there and when the tests were completed I was free to leave, however , the nurse did not have time to remove the IV from my arm so I had to sit there and wait for hours for that one nurse to get around to removing it! I was furious!!! I wanted to rip it out myself but was not sure exactly how to do that!
Good luck to you in your search for good care!!!
Good luck to you in your search for good care!!!
If you can move back to Thailand where you say the medical care is better than in America do so as soon as possible! I have done alot of research to find best Drs in America to treat my pituitary tumor and had had NO LUCK with any of them.
My entire story is too long to type here but I will try to sum it up. 12 years ago, I was very, very healthy but, one day , while driving , my vision suddenly doubled and I had to pull over. This happened on and off several times a week , each time I went to Eye Dr I was told maybe its stress, maybe its dry eye, maybe it from reading too much, maybe from computer screen. I saw several different eye Drs including Nuero Opth. Dr. I also had bad, bad headaches,and loud ringing in both ears, all Drs diagnose's is different, maybe stress, maybe too much work, maybe sinus , maybe getting old , maybe menopause, maybe anything? I also had many other problems, milk was coming from my breasts ( I was 50 yrs old) , suddenly no libido, sudden bad memory, irritability, could not sleep, swollen sinusall night long, heart issues, high blood pressure, acne, hair falling out, stretch marks, swollen face, exhaustion, pain in all joints ,many many symptoms. I saw many endocrinologists and they took lots of blood, results came back with lots of abnormal results but got no answers WHY. Finally a nurse practitioner at my gynocologist saw me and asked why no one had done an MRI of my brain? I had no idea why Dr had not done MRI , So, I had MRI almost 3 yrs ago and it showed abnormally enlarged Pituitary ( looked like a big round walnut!) and microadenoma and enlarged pituitary stalk that deviates to left! So, Dr gave me meds to SHRINK tumor! Meds made me very sick, tumor did not shrink. I then travel to OHSU in Portland to special PITUITARY TUMOR clinic for evaluation , they say , YES, you have tumor! Yes, I will need surgery some day but not yet, the tumor is wrapped all through my pituitary and they cannot remove it so we will leave it alone for now. I get another MRI a year later and it says still enlarged,still have enlarged stalk, not touching optic chaism but very near to it. Neuro Surgeon and Endo Dr says nothing we can do but wait and continue to get MRI every year ( all with and without Dye) Last year I get another MRI at a new place and it says , NO CHANGE , NORMAL pituitary. My endocrinologist says , "oh, good, your pituitary is normal " I said "wait...how can that be? Its says NO CHANGE... if there is no change then it is still enlarged and there is an micro adenoma!."
Dr says, "no, radiologist says NORMAL.... NO CHANGE ! " Again, I say , if there is NO CHANGE it must still be enlarged.... round and round we go! Anyway, I am still suffering, have seen 4 Endocrinologists, 4 eye drs, 2 Nuero Surgeons and 1 Nuero Optho. Dr for my eyes. NOTHING has been done for me except that I pay them all a lot of money for all the blood work and MRI's! ! I still have severe headaches, nausea, double vision, and very abnormal blood test results. I barely function day to day and am about to get fired from my job for missing too many days from being sick .
I wish you best of luck in finding good gare for your problems!!
My entire story is too long to type here but I will try to sum it up. 12 years ago, I was very, very healthy but, one day , while driving , my vision suddenly doubled and I had to pull over. This happened on and off several times a week , each time I went to Eye Dr I was told maybe its stress, maybe its dry eye, maybe it from reading too much, maybe from computer screen. I saw several different eye Drs including Nuero Opth. Dr. I also had bad, bad headaches,and loud ringing in both ears, all Drs diagnose's is different, maybe stress, maybe too much work, maybe sinus , maybe getting old , maybe menopause, maybe anything? I also had many other problems, milk was coming from my breasts ( I was 50 yrs old) , suddenly no libido, sudden bad memory, irritability, could not sleep, swollen sinusall night long, heart issues, high blood pressure, acne, hair falling out, stretch marks, swollen face, exhaustion, pain in all joints ,many many symptoms. I saw many endocrinologists and they took lots of blood, results came back with lots of abnormal results but got no answers WHY. Finally a nurse practitioner at my gynocologist saw me and asked why no one had done an MRI of my brain? I had no idea why Dr had not done MRI , So, I had MRI almost 3 yrs ago and it showed abnormally enlarged Pituitary ( looked like a big round walnut!) and microadenoma and enlarged pituitary stalk that deviates to left! So, Dr gave me meds to SHRINK tumor! Meds made me very sick, tumor did not shrink. I then travel to OHSU in Portland to special PITUITARY TUMOR clinic for evaluation , they say , YES, you have tumor! Yes, I will need surgery some day but not yet, the tumor is wrapped all through my pituitary and they cannot remove it so we will leave it alone for now. I get another MRI a year later and it says still enlarged,still have enlarged stalk, not touching optic chaism but very near to it. Neuro Surgeon and Endo Dr says nothing we can do but wait and continue to get MRI every year ( all with and without Dye) Last year I get another MRI at a new place and it says , NO CHANGE , NORMAL pituitary. My endocrinologist says , "oh, good, your pituitary is normal " I said "wait...how can that be? Its says NO CHANGE... if there is no change then it is still enlarged and there is an micro adenoma!."
Dr says, "no, radiologist says NORMAL.... NO CHANGE ! " Again, I say , if there is NO CHANGE it must still be enlarged.... round and round we go! Anyway, I am still suffering, have seen 4 Endocrinologists, 4 eye drs, 2 Nuero Surgeons and 1 Nuero Optho. Dr for my eyes. NOTHING has been done for me except that I pay them all a lot of money for all the blood work and MRI's! ! I still have severe headaches, nausea, double vision, and very abnormal blood test results. I barely function day to day and am about to get fired from my job for missing too many days from being sick .
I wish you best of luck in finding good gare for your problems!!
Hi
I have headaches that began after I had pituitary surgery in Jan 2006.
LSS, there is nerve damage from the surgery or cyst that I had. Get he to a pain clinic ASAP. There are meds that can help, although they all come at a price.
I work with the Pain clinic in conjunction with my endo and neuro at the medical center where I get my care.
We've finally got the head pain under wraps. The downside is that I do have to take opiates, but that's the only class of meds that work on my brand of head pain. We've tried everything. But I finally have some joy in my life again as I am not doubled over in the fetal position screaming any more because my head hurts.
I have headaches that began after I had pituitary surgery in Jan 2006.
LSS, there is nerve damage from the surgery or cyst that I had. Get he to a pain clinic ASAP. There are meds that can help, although they all come at a price.
I work with the Pain clinic in conjunction with my endo and neuro at the medical center where I get my care.
We've finally got the head pain under wraps. The downside is that I do have to take opiates, but that's the only class of meds that work on my brand of head pain. We've tried everything. But I finally have some joy in my life again as I am not doubled over in the fetal position screaming any more because my head hurts.
I feel for you.
My tumor was seen, but I still could not get treatment for 12 years.
I hope you find a good neuro endo - you may have to travel ( I went from NJ to LA but recently a friend of mine went from NV to FRANCE!) to get the right one.
Get copies of everything and never trust.
My tumor was seen, but I still could not get treatment for 12 years.
I hope you find a good neuro endo - you may have to travel ( I went from NJ to LA but recently a friend of mine went from NV to FRANCE!) to get the right one.
Get copies of everything and never trust.
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