Neurology :: Pituitary Removed And Visual Field Loss
Sep 25, 2014
I might have had 2 or 3 mild headaches in my life.
6 months ago i had most of my pituitary gland removed due to Cushing's Disease.
3 months ago i had a visual field test that showed possible swelling around the optic nerve.
6 weeks ago i started waking with headaches at about 4.30am ! i would sleep more then wake later with less of a headache but when i stood up i would get a whooshing sound in my ears and a throbbing in the top of my head. i told me GP. She said its normal when you first stand up ( Normal My #$$, if it was normal wouldnt it have been happening all my life, anyway i digress lol ). So i had these headaches, i got blurred vision and my blood pressure went up to 234/127. So off i go to hospital for 4 days.They played around with my blood pressure meds and sent me home. I still had headaches, blurred vision and my BP was 180/105( now on 4 different BP meds ).
2 weeks ago i went and had a repeat of my visual field test. The Opthmalogist wasnt too happy, basically told me one quadrant of my vision in my left eye was gone. Said he would speak to my Endocrinologist !
2 days later i noticed what i can only describe as a smudge in my vision...very annoying, but not painful and yes i can still see. but im not driving, im too scared to. I drove one day and as it got darker i couldnt tell where the other cars on the road were, kind of a distortion thing i guess
My Endocrinologist rang the next day and said i need to go for an urgent MRI...so i did.
That was 1 week ago. i have had no results, no phone calls. But i did get a letter advising me i have a Neurology outpatient appointment on 13th october ! i rang to confirm as i was waiting for an endocrine appointment. Hospital said, yes, the neurosurgeon refered you to neurolgy following your MRI. Hmmm thanks for that.
So now im trying to guess whats going on. Did my MRI show up something, if so what?, if not then why am i being referred to neurology?
I hate being in the dark. Yes i know i only have 2 weeks til i find out, but 2 weeks is hell when your second guessing.
Summary : i still have headaches ( they are for the most part mild, throbbing when i stand followed by whooshing in ears), vision has maybe slightly improved in last 2 days but still not normal. Blood pressure is still sitting around 180/105
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I haven't been diagnosed with MS, but I posted here awhile back about an abnormal result of an MRI after seeing a neuro for loss of field vision. When the results came back the MRI stated that I had "Small focal white matter lesions scattered throughout the supratentorial region". From what I understand, unless I am 70+ years old (i'm 39) a migraine suffer (have never had one) or other brain injury, I should not have these. When I followed up with the neuro he brushed it off as "there is nothing wrong with you" and sent me on my way. I had planned to get a second opinion anyway but now I think I need to do it faster. Monday morning I woke up with the worst pain in the right side of my next. Paracetamol did NOTHING. I thought I slept wrong but the pain didn't subside and actually moved later in the day into the base of my skull, behind my eyes and on the right side of my head. When I tilt my head back it shoots a pain into my shoulder blade and up into my right eye. This has been going on since Monday. I had hoped it would subside to no avail, only to now feel pain in my extreme lower back when I sit, bend or sneeze! I get minimal relief from Naproxen and tonight before bed I have resorted to taking a muscle relaxer to get some relief. Can this be related to MS?
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18 months ago I started getting blurry central vision in both eyes at the same time - it wasn't there all the time but when it was happening I found it very hard to do fine work.
I saw an ophthalmologist who did an OCT and retinal exam and found nothing. He suggested it was neurological so I had an MRI of my brain and orbits but nothing was found to explain the problem.
In the last three months I found that the problem had become permanent in my right eye - I could now see a faint central ring that pulsated with my heartbeat on that side. I went back to the ophthalmologist and he diagnosed a stage one macular hole. He didn't think the previous loss of vision was connected to this. He has advised me to wait and see if it gets worse but I am considering doing the surgery anyway - maybe trying the new drug Jetrea first which is very expensive but which is said to help a small number of patients.
Has anybody had a similar experience - with the visual loss coming and going? Anybody tried or considered trying Jetrea?
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have been prescribed Oxytetracycline for my cystic acne. 250mg thrice a day for 20 days and then 250 mg twice a day.
I have read on internet that it causes vision loss or impairment in some patients and scared to start the treatment.
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Three weeks ago I noticed my daughter (age 38) could not remember anything from 10 or 15 minutes and kept asking the same questions - She seemed confused. I took her to the hospital and they began running test. After 2 days she was having difficulty standing so I had to help her stand and then she could walk - after 4 days she could not stand or walk at all. Her legs and arms both have some numbness, burning sensations, and pain. The MRI scan shows no issues - they have run MRI, CatScan, EEG, EMG, Muscle Biopsy, Spinal Tap, all sorts of blood work and after three weeks have found nothing except some vitamin deficiency. She still cannot walk and has confusion and short term memory - Has anyone heard of anything like this. Is it possible that is vitamin deficiency?
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my daughter is 18 years old and has lost muscle tissue in her left hand the doctors recommended x-ray and MRI and also EMG all the results came out normal. the problem is she cant put her socks on and hold things with her hand at times. so I guess my question is has this been heard of. also we went to even a centre for reconstructive surgery and he was also confused saying he has never seen a case like this. My daughter is frustrated and we have no answers.
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My hair has been falling out for 4 years and I also have scalp pain. It feels like someone has been pulling my hair.
Out on the occipital area. The pain comes and goes. I have had a biopsy by a dermatologist, which was inconclusive.
I had an MRI, that was normal. Does anyone know who I should see or what to do? All labs normal!
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How long does it take to get full pituitary function recovery after surgery to remove a non-functioning pituitary adenoma that was approximately 3cm in size.
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It was discovered i had an 8mm microadenoma. It raised my prolactin to 175 and lowered testosterone to 70. cabergoline lowered prolactin to normal levels. I had testosterone therapy raising my levels to normal but they went much lower again after the therapy. prolactin remains low. cortisol and insulin growth like factor 1 remain slightly elevated. Can any help as to why my testosterone remains low. I am 45 and active. slightly overweight by about 25 lbs but have always been even before the adenoma and prolactin issues.
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Yesterday a rheumatologist diagnosed me with GCA and, in an attempt to remove any threat to my sight, put me on 60 mg of prednisone immediately. He based this on the PMR symptoms and some visual symptoms.
He advised me to see my eye doctor. She did not see anything at all in my visual symptoms characteristic of GCA. She was surprised and disturbed that he made this significant diagnosis without more blood work and a biopsy.
Now that I have been on the prednisone, though only 2 days on 60 mg, the inflammation will be gone and there is no way, she says, we will ever know whether I really had/have GCA.
She will talk to him today to see if he had any other information she does not know about.
I'll trust my GP to sort out the best thing to do. I certainly am not staying on 60 mg of prednisone a day longer than I have to!
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I was diagnosed 5 years ago as a paranoid schizophrenic. I have allot of auditory hallucinations, but never once a visual one.
A week ago when I was in my room I stared at the ceiling, I have a wood one. Suddenly the marks and patterns on it started to move, then dance. I just thought that I must have been tired and went to sleep.
Since then it got a little worse. Every night the ceiling would dance for me. Then inanimate objects would start to bend and move around. The weird thing is that when my keyboard against the wall moves, the shadow casted on the wall by it, moves with it. I found this a bit odd.
Tonight was the worst case. The blanked on my bed puffed up and moves around, exactly like there was a dog underneath. My closet door handle would move up and down while the closet opens and closes, with no sound.
When my laptop's light went down and I stared at my own reflection, things got weird. My reflection's hands would move while I am sitting still. "He" would blink when I do not. Then my whole face started to change. It puffed up and my hair was longer. When I turned my face one way, he turned a different way and started smiling at me. And our eyes never made contact. When I looked into "his" eyes, he would look to the sides or roll them back.
Because I have had this illness for a long time I didn't go into a panic as I kind of got the jest of what was going on.
Since this was my first visual experience, I just want to know if this is the "norm" of it. I did not see anything that was not there, just things moving and getting distorted.
And does anyone know if the visual part can come for the first time after me having this illness for so long?
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My LH is 5.6 and my FSH is 3.7. One Dr says this is good and shows I'm not going through menopause. Another Dr said they are low for my age (I'm 37). My testosterone was also low. My prolactin is 412. One Dr says its within normal range, another says its slightly high lol So here I am, wondering if anyone else has had similar levels & if so what they mean?
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Just out of interest, I get the following, although somewhat reduced by my current medication (quetiapine)
1. Flashes, peripheral disturbances;
2. Illusions -- shadows morphing into animals / people;
3. Seeing what I call 'black rats / cats';
4. Spiders on your desk...;
5. 'Throbbing' objects such as keyboards;
6. Seeing people on the street who just vanish into thin air;
7. Seeing people morph into skeletons
8. People faces screaming at your window...
9. People walking into your lounge you know but are dead / or miles away
10. Talking to people who aren't there.
Fortunately my medication stops at about number 6.
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Very healthy adult male, with these numbers:
LH: <0.2 (undetectable)
FSH: <0.2 (undetectable)
Vitamins D, 25-hydroxy: 27.4
T: 154
All of these are abnormally low. I feel fine, but I suffer from ED, low libido
Doctors 'note' on the bottom of the test results were:
Needs to see endocrinology specialist AASAP!
Ok, nobody likes to see ASAP! Written by a Physician... How worried should I be?
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I had a pituitary tumor removed several years ago. I had a follow up MRI last month and an appointment with my neurosurgeon. All is well. I did inform the Doctor I have been tired lately so he ordered blood work to check hormone levels. Turns out my testosterone level is low. Actually looked at my bloodwork records just prior to tumor removal and all hormone levels were WAY OFF - They have all seemed to come back to normal levels with the exception of my testosterone. My surgeon is referring me to a endocrinologist. Working on making an appointment now. Has anyone else experienced a low testosterone level after this tumor removal and if so what course of action did you have to take? I am 46 now and I understand testosterone levels do begin to drop a bit in males once reaching the age of 40.
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Recently I have been diagnosed with a daily type of migraine which causes imbalance, dizziness and visual blurring although I don't always have a headache. The doctor put me on nortriptyline 10mg once a day at night. I'm on my second day and my dizziness and visual symptoms have gotten far worse? Is this normal and does it go away after a while? Feeling rather panicky as I struggle to even go to the shop. Nothing feels real. Any advice out there?
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I have been on Oxytetracycline for the past 3 months to treat acne on my back. It seems to be beginning to work now but I have a problem in that my sight has degraded quite rapidly in the past 4 months. My optician did say there is a chance this could be linked. I have done a bit of research and sight variation is a rare side effect of this medication. Does anyone know if this would be a temporary variation on a permanent deterioration?
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I found out about 6 months ago that I have high prolactin levels. They have put me on 2 different medications to reduce the levels. The first one made me sick so they lowered the dose. I am still experiencing abdominal cramps when I take them and my doctor doesn't seem to be concerned about it.
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I'm a 30 year old active female with a history of prolactin/pituitary problems.
- When I was 17 I was diagnosed with a pituitary macro adenoma. I responded well to cabergoline so no surgery was carried out to shrink the tumour.
- When I was 19 my MRI showed a small bleed to the tumour which caused it to shrink completely.
- when I was 21 I was taken off cabergoline and my prolactin levels remained normal for a few years.
- when I was 25 I noticed familiar symptoms, breast discharge and fatigue so went back to my consultant. My prolactin levels creeped back into the abnormal range and I was put back on cabergoline. MRI showed no tumour.
- 3 months back into treatment I found that cabergoline was making me incredibly tired and low so my consultant switched me to Quinagolide (norprolac) which worked and gave me no nasty side effects.
- I'm now 30years old and last year my consultant and I thought it was time to stop medication as my prolactin levels remained in the normal 300 mark. 2 weeks after coming off my medication I noticed my moods changed significantly and my sex drive vanished. I went back for immediate blood tests and my prolactin levels had raised up to 700! I went back on Quinagolide to reduce the levels and once again felt OK.
- I recently had another MRI to see if there had been any changes. My MRI was once again clear.
I'm incredibly frustrated and gutted to still be taking medication for something that I simply don't understand. Why are my prolactin levels continuing to rise yet I no longer have a pituitary tumour!? I go back to see my consultant in a couple of weeks but I fear that nothing will change and I will continue to treat a problem rather than get to the bottom of the cause.
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I've had migraines throughout my life. Mine really peeked in my early 40s going through peri menopause they would be 3 days long. Now the painful migraines have gotten so much better and shorter. I also use Imitrex as needed.
I would also get an Ocular Migraine (visual disturbances such a bright zig zag lines, vibrating bright lines in vision) about every 4-5 years. They were checked out the first time and the doc said they were not harmful.
Recently my dog decided to put me on Atenolol to prevent migraines. After 3 days of being on them I started to have the Ocular Migraines every single day now! I've never had that happen. The Atenolol has stopped the painful migraines completely but I don't think I can handle something like an LSD trip every single day. This doesn't seem right. My doc doesn't think it's causing it but suggested I go off of it to see.
Anyone else with Ocular migraines?
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This is all very new to me so I hope I'm doing this right but I'm just looking for some reassurance. I'm 26 years old and was diagnosed with a parapharyngeal space tumour in late 2012. 2013 my surgeon attempted to remove the tumor by cutting my jaw and going through the back of my throat into the pps, unfortunately he was unsuccessful and didn't remove any of the tumor. We decided to monitor it over two years and see if a change in growth was noted. I should mention that for the last 4 years I've had pain in my left ear and face which has been gradually worsening, and around 10 months ago I lost hearing in the same ear which is now joined by a high pitched ringing. A mri in early December 2015 showed a growth in tumor so my surgeon decided to remove it, however he would need to take a wider approach to ensure he would get the tumor this time, he is concerned that it's involved with my lower cranial nerves so we may need to remove or damage them which would greatly alter my quality of life. Currently I'm looking at other options or other ENT over the world for more opinions.im desperate to find someone else who has been through something similar or if anyone has a suggestion of surgeon or alternative treatments. They are unsure the nature of my tumor so time is of the essence for me. Any help would be greatly appreciated. I have a 1 year old baby who I need to be around for to watch grow up.
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