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Dear PNA,
My brother in-law is a patient at the ABC Health and Sciences center. He has a tumor up against his pituitary gland and was misdiagnosed, were told, because he was diagnosed with AML (leukemia) and treated - but then the tumor was found and assumed to be a secondary tumor from AML and aggressively treated with chemo. Well, after treatments (24hrs after last injection or less) my brother-in-law went into a coma-like state and was rushed to the ER. The doctor said it was possibly chemo toxicity. We waited six weeks and no change, so my sister and the doctor decided on a biopsy and it revealed no cancer!!! But it is too late, since the chemo has caused necrosis that is spreading and as of yesterday the doctor told us that my brother-in-law will die. He will never get better from the chemo poisoning and they want to shift care to keeping him comfortable and medicated so he can pass on. I believe he was suffering from a primary tumor in the pituitary, possibly a craniopharyngioma. That is my opinion because of the insipidus that he developed. Also, my sister, the patient’s wife of 15 years, said he had all the symptoms of craniopharyngioma. Unfortunately we discovered your site too late for my brother-in-law. But the doctors at the facility where he was treated mocked your assumption of one in five and said it is maybe one in five hundred. I believe they need a dose of reality on these facts. Can you help me??
Sincerely,
Patient’s brother-in-law
Dear Patient’s brother-in-law,
Those doctors are un-educated and incompetent. 20 % of the population was found to harbor pituitary tumors in a study done in 1934-35-36 at the Mayo Clinic in Minnesota. We researched all known literature since that time and our scientists/researchers conservatively settled on 16.7%. Some doctors believe it is as high as 30%. Stay away from quacks! Unless they have a scientific study showing about 30 research programs are wrong since 1936 I will stick by my words. They are uneducated, ignorant purveyors of old wives tales! You can read our web site and they can call up the medical literature on the web. Tell the idiots that the PNA was not the one assuming cancer. I only repeat established facts. I am afraid that your brother-in-law was badly mis-treated. I am sorry and I hope you can get qualified help for him.
All the best.
- Robert Knutzen
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Dear PNA,
What is a pituitary adenoma? At least this is what they have on my daughter’s MRI paper for the hospital. My daughter is 11years old. She was visiting her father and was riding her bike with no helmet on. He called me to tell me that she had fallen off and hit her head on asphalt, or a curb. I told him he should take her to the hospital since she had no helmet on and hit her head. They did a CT scan and then sent her home with him because it was his weekend. They called me the following day and said they found an abnormality in her brain. They wanted her to get an MRI. So I made an appointment closer to my hospital. She had an adenoma. The doctor said it was very small and they would watch it so six months later she had another MRI. It revealed the same thing - the thing didn't change in size. They said that they would keep watch on it. Now she goes again in six months. After that, if there is no change, then she’ll have another MRI in 9 months. They are not sure how it got there. They think it was there when she was born. Do you have any other ideas for me? I do fear my child's life.
– Patient’s mother
Dear Patient’s mother –
I don’t think you have to fear for her life, just her health. An adenoma is a tumor. If it is something she was born with it may be something more unusual like a Rathke’s cleft cyst or a craniopharyngioma. You need to take her to a pediatric pituitary endocrinologist for a thorough evaluation. It could seriously affect her health during puberty and adult life. Get the Pituitary Patient Resource Guide, read and learn and understand that this must be watched. Good Luck.
- Robert Knutzen
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From the PNA message boards
Original post:
I was diagnosed with a pituitary tumor mid November. This was after doctoring for TMJ (temporal mandibular joint disorder) for a year and a half. My doctor ordered an MRI because he didn't think my symptoms were indicative of TMJ. After the MRI he called and told me that most likely my headaches, facial pain, depression and fatigue were because I had a pituitary tumor that was sitting on my 5th cranial nerve. I have been to a neurosurgeon after having another MRI and found that I had a mass in my left cheek. The neurosurgeon said the tumor, which is 1 x 2 cm, should be removed within six months but I would need to find out what the mass in my cheek was first. Needless to say, I did that, and the ENT removed the mass 2 weeks ago. Thankfully it was benign, but not the cause of my facial pain. I finally have another appointment with the neurosurgeon on Jan 22nd. He wouldn't see me until 6 weeks after the ENT surgery. I continue to be in a lot of pain! Headaches, fatigue and mood swings. I don't think I have ever felt so low in my life and my friends think it is crazy that I have to wait until the 22nd to even see the neurosurgeon again and then even longer to have the tumor removed. This is all so new to me, even though the pain is not! I would appreciate any thoughts or insights. I have been doing a lot of reading and appreciate the PNA website very much.
Response #1
Sorry my reply is so late. It takes me awhile to read all the posts. I do not know everything that you are going through, but I do know how you feel about being in pain. I live with some kind of headache every day. It can be mild to horrible to migraine headache. I was diagnosed with a pituitary tumor in September 2005 because I had a migraine that lasted 4 weeks and nothing the doctors gave me would get rid of it. That is still true to this day. When I get a real bad horrible headache it can last for weeks. All the doctors want to do is watch and see if the tumor grows and it is now 7x8x11. So hang in there and know you are not alone. Good Luck!!
PNA response:
The size of the tumor is in no way important. Get new doctors ASAP. You deserve better life than this.
Response from another person:
I agree you really need to see a new doctor. Why should you carry on suffering like this?
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Dear PNA
What a blessing the Pituitary Network Association is! Almost three years ago I was diagnosed with acromegaly. Two and a half years ago the tumor was removed. Following the surgery I improved in many ways, including my ability to walk freely with little pain.
Now the knee pain is quite bad. I presume that most of this is due to around 20 to 35 years of living with acromegaly, with a tad bit of arthritis. My question: what type of surgeries, if any, is successful in correcting knees affected by acromegaly? What is the success ratio? Is there any other successful treatment?
I do intend to see an orthopedic doctor in about three weeks, but I would like to have some knowledge from doctors and experts who regularly deal with acromegaly. As I have learned from the whole acromegaly experience: knowledge is self empowering in receiving the best treatment. Please advise me with your suggestions regarding the best treatment for this condition.
Most sincerely,
- Patient
Dear Patient,
It is very common for acromegalic patients to have knees, sometimes elbows and hips replaced. Between bone-spurs and arthritis acromegaly takes its toll.
- Robert Knutzen
Dear Robert,
Thank you Robert, I really appreciate your taking the time to personally answer me. You have been such a help to me in the past as well as now. Thank you!
Most sincerely,
- Patient
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Dear PNA,
My 7 year old daughter’s doctor told her she has a cyst and that's it. What do you know about it? My daughter did start her period but it is like a brown color, and she does get a lot of headaches. She got her period on Dec. 27th 2007 and is still spotting. I don't remember how long I spotted until I got the real thing. What do I do if after this last MRI the doctor wants to wait for any more MRIs for like a year or two? If he thinks that it won't change in size for awhile, my insurance won’t pay for other testing. We have the access card. Thank you so far for all your advice.
– Anxious Mom
Dear Anxious Mom,
She is only 7?? Of course there is a problem. She needs to see a pediatric endocrinologist ASAP. With a cyst and precocious puberty, you do not fool around. Now get her some real help!
- Robert Knutzen
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