Hi, I just recently went to my doc for real bad headaches that happen in the front and side by temples. Headaches are not new to me but I have noticed a change over the last couple of years. They seem to be more frequent, and i began to gain weight. No matter what I do i can't lose it. I also noticed some weird scary visual things and saw an eye doc but he said everything was fine. I couldn't take it anymore and feared for my health since just recently my mom passed away from brain cancer that was only found out when her headach was so bad she blacked out. I began feeling tired all the time, neuasa, really dizzy to the point wher I have to stop and stay still, when I lay on my stomach my head pounds and my hearing goes in and out like the sound of chopping air. My fingers tips will also get numbed for no reason. My vision would blur and get the spots that cross over your field of vision as well as the twinkle firework type spots out of the side vision. Recently me eyes blurred so bad i couldn't see infront of me. My doc sent me for an MRI. and blood work. They called and said not to be worry but they found a pitiuitary abnormality but most likely its nothing cancerous and my prolactin level is elevated. I went to a specialist and he was a jerk. I got there and he didn't even have my MRI or the report, he was asking me how big it was and that not to worry cause its probably small. That he would send me to get a more exact measure of the prolactin level. The whole thing about letting me walk out the door without a report made me worry about him and what he had to say. He asked if I wanted them to try and get the report and I said yeah of course. A half and hour later he comes in and looks at the report and reads that the person who read the MRI scan thinks it could be emply sella, so now he said oh you just have empty sella and we will wait til Nov to do more bloodwork cause now he says the prolactin is not elevated enough to cuase worry. I explained to him my symptoms and he wrote them off saying they didn't have anything to do with the empty sella? I asked about my thyroid and weight gain and he said it had nothing to do with this.He asked what my neurologist said and I told him I haven't gone to one. I am now more confused on what is wrong. So I went back to my primary doc and got a copy of the report and he is sending me to another endocronologist and a neurologist because he doesn't understand why he didn't put me on anything or wanted to wait for bloodwork in Nov. My MRI report says
The vol of the sella turcia is greater than average. It is largely occupied by CSF like material w/a thin crescent of pituitary substance inferiorly. The pituitary stalk is not thickened or displaced. I do not find abnormalities at the optic chiasm or in the hypothalamic area. I do not identify focal intracranial masses or dominant geographic lesions. Appropiate flow voids are present for major intracranial vessels.
The right cerebellar tonsil does extend further caudally at the foramen magnum than its left sided counterpart. There was not abnormal compression of structures near the cervical medullary junction.
Then it ends with the immpression of what he thought and thinks it is empty sella. I feel like the endocronologist that I saw just came in and looked at the impression and made the his diagnosis based on that. Am I wrong or should I have been treated for the prolactin at least? He didn't seem to care since my cycles were on time every month, he didn't seem to bother him that i was still lactating when its squeezed 11 yrs after my last kid. Something just didn't feel right. I look up online and I get so confused, any help wuld be appreciated. Was I right to go back and get a second opinion, or was he right and nothing needs to be done? Thanks
Hi...ur issue may be more than what this dr is dxing,.....but this dx and chiari do go hand in hand many times and it is significant that u r having the issue u r having. I would suggest u stop by the chiari forum and use the search this community feature to read other threads on empty sella.-http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc
U mentioned u do have a herniation of the cerebral tonsils and they r not the same in length which is normal too.
U may want to get a 3 rd opinion and see a true chiari specialist to see what else u may find out
Anyways I think that you need to get yourself to a neuro-endocrinologist because you are symptomatic and it sounds like your pituitary hormones are probably haywire. And yes that would explain weight gain and many of your symptoms. But you do need to have your hormones checked and assessed, geez.
Unfortunately these types of endos are not everywhere and tend to hang out at larger medical centers that have a pituitary program.
Like Selma said above there may also be a Chiari issue to ruled out given what the radiologist said on the report.
It is NOT normal to be lactating 11 years after. only a male doctor??? Yes get another opinion. Try to go to a neuro endo at a pituitary center, if you can.
Thanks so much for both of your answers. I'm scheduled to go see another endocrinologist not until late Sept and a neurologist next week. I'm hoping these doctors will know a little more than the last one. :) I just knew right off the bat that the first endocrinologist was an idiot. Again thanks so much for giving the time to help me while I was reaching out.
Good luck on your next appointment. Feel free to send me a message if you want any advice about the Pituitary hormones and/or the testing. Problems with the pituitary gland can affect your growth hormone, thyroid, sex hormones, prolactin and cortisol levels. Low thyroid alone can cause your prolactin levels to be slightly elevated. But so can a small adenoma so you want to make sure that they are looking at both scenarios.
Luckily the hormonal probs can be corrected with replacement! Prolactin can be brought down with medication.
I just came back from the neurologist, he had me do a bunch of things and took a look at my MRI scan, then he came back with this huge lobg word starting with cerebral..........? Which for the life of me I can not remember, I basically know he said he is pretty sure what I have is pressure in the brain that is causing my headaches and dizziness, etc... However the only way to know for sure on what ever that long word was, was to have a spinal tap. He then said I have to go get blood drawn to make sure my blood isn't too thin, which I just did. Also something about a Cat scan and possible another MRI since it was done in July. I'm so confused cuz I can't remember what he called it and all I kept repeating in my head was spinal tap. I am so scared of this and he gave me the order but has to clear it with Ins. I'm going to call Mon his office to see if I can find out the name he called it and what happens first the spinal tap or the CT scan. Then he would follow up with me in Dec. which seems so far away. So when I get this all done does the results go to him or the primary? Anyway on Mon, I go to the endocrinologist to find out about the hyperprolactinemia and empty sella. The neuro said he felt that I didn't have that chiari but the thing he said. God I wish I could remember that name, it was just so long and sounded like it had the word tumor in it. I'm just really nervous of this spinal tap and he said to make sure the measure the opening pressure, whatever that means. So nerve wracking, thanks for everything guys, hope all is well. :)
I just came back from the neurologist, he had me do a bunch of things and took a look at my MRI scan, then he came back with this huge long word starting with cerebral..........? Which for the life of me I can not remember, I basically know he said he is pretty sure what I have is pressure in the brain that is causing my headaches and dizziness, etc... However the only way to know for sure on what ever that long word was, was to have a spinal tap. He then said I have to go get blood drawn to make sure my blood isn't too thin, which I just did. Also something about a Cat scan and possible another MRI since it was done in July. I'm so confused cuz I can't remember what he called it and all I kept repeating in my head was spinal tap. I am so scared of this and he gave me the order but has to clear it with Ins. I'm going to call Mon his office to see if I can find out the name he called it and what happens first the spinal tap or the CT scan. Then he would follow up with me in Dec. which seems so far away. So when I get this all done does the results go to him or the primary? Anyway on Mon, I go to the endocrinologist to find out about the hyperprolactinemia and empty sella. The neuro said he felt that I didn't have that chiari but the thing he said. God I wish I could remember that name, it was just so long and sounded like it had the word tumor in it. I'm just really nervous of this spinal tap and he said to make sure the measure the opening pressure, whatever that means. So nerve wracking, thanks for everything guys, hope all is well. :)
pseudo tumor cerebri
I've got this too. Allen1076 I take a med called topamax to address the elevated pressure and so far it seems to be doing the job just fine. I also have the headaches similar to yours. In pain management for that. Another med commonly used is Diamox. I had too many side effects from it. Just make sure that they check all of your pit hormones.
My prolactin levels are a little bit elevated. Selma, what do you know about the connection with the elevated pressure and that? Any research you can guide me to, on this? Since my pit gland is supposedly dead it's a mystery to me as to why I would have any prolactin at all? No tumors that they can find.
Empty Sella Syndrome
pituitaryadenomas.com/emptysella.htm - Cached - pituitaryadenomas.com results
Hyperprolactinemia and intermittent increases in prolactin (PRL) levels have both been ... Benign increased intracranial pressure (pseudotumor cerebri) also
The above r links to where u can find more info on this topic.
Just came home from seeing the endocrinologist and she said my blood showed my prolactin at a slight elevate at 37, that she is ordering another more precise blood test to get more detail on it. Now I thought thats high considering the range of what normal is but I guess I'm wrong. she also said since I have my tubes tied and no hope of anymore kids there isn't a rush and the lactating issue is min, which I thought was wierd that she asked me to squeeze my nipple to show her the discharge? Anyway, I have to make an appointment for this fancier blood test since she said I have to have it done no later than 8am,and fasting isn't nec. She is also going to recheck the TSH, T-4 levels since I'm always tired and have weight gain, but I believe this was done before and the first endo said my thyroid was fine which I was surprised. As for the neuro, Selma you were right it was that pseudotumor cerebri that he thinks is going on. I'm just waiting for the CT scan and spinal tap to be approved, even though I'm afraid of the spinal tap. Never heard anything plesant about those. But you guys have been great and thanks for all your support. I just want to get on whatever I need to get on and get everything regulated, it seems like a long time from when I first went into the doc back at the end of July that I'm still waiting on everything. Will keep posted. Does anyone know if the prolactin comes back at 37 again if any med will be prescribed? or it that too low for any med's? thx
RE the prolactin a med will be prescribed only if the side effects from the elevated prolactin levels are bothering you. (IE lactating, libido, irregular cycles) You will have a say here. You might be given the option to try the medication and see if it helps. Hint: it might stop the minor lactation issue just with a few doses and then you can stop it.
Thyroid is often overlooked. So it might do you well to look at the labs yourself and also read up on the symptoms of hypothyroidism and see if you do fit into that box. It is such an easy and inexpensive thing to treat, yet it is so under diagnosed!
I've now had oh...10 lumbar punctures. And no they are not fun. But they are not as bad as many think either. For me (because of lower back probs) a trick that makes it so much easier is for me to take a sedative and for the anesthesiologist to go in a little bit higher than they usually do.
OMG, it took this lobg to get results, I have been hounding my neuro since a week afer my Spinal and CT back on Oct 20th. I just recalled since they said the results where in and never got a call back. The lady answered the phone and said the doc talked to me??? I said no, no one ever called thats why I am calling. She then said well they both were negative but he wants to see you at first available appointment, which is now sched for Nov 28th.I'm so fustrated that they can be so laid back and without a care. I was laid up in bed for 4 days after the spinal tap due to the bad throbbing. I still have bad throbbing headaches, dizziness and tired all the time. The only thing that I guess showed up on the CT scan was the empty sella. Since the radiologist that was doing my spinal said he looked at the CT and asked how long I had empty sella.. So with the tests coming back negative does that mean I don't have anything wrong???? My bloodwork still showed high prolactin but my endo said its still no concern unless I don''t get my monthly. These headaches kill my and are so constant. I'm at a loss. I feel its weird for the doc (neuro) to not personally call me but rather the person who answered the phone tell me its negative. Any advice?? Thanks
BEFORE you say YES to taking the medication commonly prescribed for Pituitary Adinoma or Hyper Prolactonemia, please read and educate yourself regarding the side effects, financial cost and risks involved. The headaches from Empty Sella Syndrome are definitely terrible but not close to the debilitating effects I suffered from Bromocriptene and Cabergoline. I decided to take the Endocrinologist's advice and after 7 years of doing it by the book, I'm on 5 additional medications to treat the medication's side effects, weigh more than ever (even though I swim 3 km per day), is at higher risk for stroke and heart valve disease and the bonus of messing with your Dopamine levels which is depression. PLEASE read EVERYTHING you can find before you make a decision.
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