Visual field loss, referred to neurology !

[LucyEvony]

I am pretty much not a headachy person. 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

Any ideas, advice anything at all appreciated :)

sorry for the long post :)

[LucyEvony]

Will update just in the off chance others read this wanting to know answers

I saw the Neurologist today.... He said MRI Is fine, nothing worrying in the results. The above are incidental findings and not associated with my symptoms.

After a short assessment and many questions, he said my vision change is due to two possible issues, 1. Migraines, 2. Idiopathic Intracranial hypertension.

Basically said treat as migraine, gave Topamax for 8 weeks. If this doesnt improve things then we will have to do a Lumbar puncture. he wants to try non invasive first, and i 100% agree :)

Lets hope the Topamax works !

[LucyEvony]

MRI results....showed

There is a Mild Generalized Bilateral Sulcal and anterior interhemispheric CSF prominence.

A Right sided developmental Venus Anomaly coming from the body of the right lateral ventricle through white matter lateral to the right basal Ganglia.

I wonder why this developmental anomaly never showed up before on the several MRI's ive had.

I wonder if the CSF prominence could have something to do with my high blood pressure?

Anyone able to shed some light on these results?

Im seeing Neurologist on monday ( not long to wait now ), but would be nice to have some insight before i see him :)

[LucyEvony]

OMG Finally got a call from the Endocrinologist ( and i told her i had been going insane wondering whats going on !!!.... oh she says, Sorry ! )

Anyway she said the reason im seeing the neurologist is because after a meeting of the heads of specialist clinics, where they discussed my case they came up with a possible reason for my loss of vision and headaches ide been getting. Something called Intracranial Hypertension.

When i had my pituitary surgery i had a CSF leak that was repaired with a fat graft. Immediatly after the surgery my blood pressure dropped to around 90/50, it had been 170/100 pretty constantly with spikes up to 240/130 ( rounded up ). About 4 weeks after the surgery my blood pressure had gone back up to 170/100.

Seems the docs think its possible with the CSF leak it lowered my cranial pressure, hence dropping my BP. So they want the neurologist to do a work up and see where it takes them.

At least now im getting somewhere and have some information :)

I asked my Endo to please if ever i get referred or need testing done, to just give me a quick call and explain to me so i dont go insane :) i told her its torture not knowing things. She promised she would, said she didnt think it was important. I said, its mega important to me :)

[Foggy2]

You're welcome.  It sounds like you have things under control, but at this point need to wait until next week.  It also sounds like the doctors are working on finding out what is wrong, but it's too bad they didn't communicate more with you.  Since it's only next week, talk to them then and try and relax over the weekend.  Keep doing what you have been doing; you are doing a good job considering all that you are going through.  Let me know if you have any additional questions. :-)

[LucyEvony]

Thanks Again :)

I am actually wondering if its a Neuro Ophthalmologist im seeing at the Neurology clinic? Im not sure how it all works.
It was the hospital Ophthalmologist who did the visual field test.

My thyroid has been normal always, pre and post surgery. My prolactin was High pre and is now low post. ADH i dont think they have tested. Not that im aware of. I do know post surgery i was passing 900 ml of urine every 20 minutes for the first 24 hrs. It took about 5 days for them to stabilize that. When they eventually removed my catheter i was going to the toilet every 15 to 20 minutes. I was on 600mcg of desmopressin a day, recently went off it, but will be starting on 200mcg again tonight as the last few nights ive been getting up in the night too many times. I do know they check my sodium and other electrolytes monthly, including osmolality.

I still havnt heard ( as in phone call ) from the endo, but i got a letter in the mail !! lol most unsual. But it was two pathology slips she wants me to get done in the next week. A 24 hr full steroid profile, Basal Cortisol and ACTH ( i dont know if basal is different ), Full lipid profile, UE&C, Hba1c, Spot Urine ACR, FBC, LFT, ESR and C-RP.

So although I'm still concerned about the MRI at least i know they are still working on finding the answer to my high cortisol. I think the steroid profile may be looking at my adrenal glands to see if any issue lies there.

I'm allergic to caffeine :) so no problems keeping that to a minimum. I dont have any at all. My diet is pretty good and i certainly dont add salt to anything.

It helps to just write out stuff here. Makes me put everything in order so i dont stress over things. Ill be fine. Thanks again for responding :)

[Foggy2]

You seem well educated on your medical conditions and are pro-active in your care.  I believe at this point you do need to wait until next week, but I agree it is odd that they didn't inform you were as in the past they did keep you informed.

The other area of the brain that controls vision (motion, depth perception) is a small area in the parietal region, but this is away from your pit.  You could also get an opinion from a Neuro Ophthalmologist regarding this if needed.

As for having the high Cortiol, remember that the pit is kind of like the control center for many of the hormones and send them out to all areas of the body.  So when one is off, it throws all the others off.  The fact that your BP is high, has your Endo looked into your ADH, prolactin, and thyroid levels recently?  

While you are waiting for the results, keep caffeine to a minimum, keep stress down, and eat a healthy low salt diet,  I'm sure given your history and knowledge that you have been through this before, but I am here if you have any additional questions.

[LucyEvony]

Thanks for responding :)

I have called the hospital and left a message for the Endo. I have no idea how long it will take her to get back to me. Its the weekend now, so i guess ill be waiting til next week.

Im not on steroids, despite having 95% of my pituitary gland removed my cortisol levels are still way too high. Ive never taken steroids except for 1 week immediatly after surgery. they stopped them when they realised the surgery had not been successful. I had hyperplasia and over abundance of ACTH cells in my pituitary gland.

The high cortisol has caused high unstable blood pressure and high unstable blood glucose levels. Ive had that issue for over 2 years.
The Endo is aware my BP is still high. I dont think there is much they can do til they find a way to lower my cortisol. I am on 4 different blood pressure medications at the highest dose. Im also on insulin for the unstable Blood Glucose.

Ive been told not to check my Blood pressure more than once a week. So thats what i do, unless im feeling really off ( not well ) i will check it then as i do have episodes where it goes a lot higher. The endo checks my BP at every visit and so does my GP ( i only see the GP now for medical certificates and prescriptions ).

I have diabetes Insipidus post Pit surgery. Was on Desmopressin...but i recently went off it as i seem to be coping Urine/ thirst wise. I do know i have low sodium, low chloride,low Urea,low eGFR,  slightly high potassium and high anion gap.

I do normally get all my results, i have all my blood, urine, saliva results. I have previous MRI's ( 4 of them ), CT scans etc. I have them all. I just dont know why this one is different and no one is giving me information. Thats probably why its so much more concerning for me !!

And i know the whole Endo team had a meeting last friday to discuss my case ( 1 week ago ) and ive still heard nothing ! It just seems really weird :(

I know the abnormal vision can occur with tumors of the Pituitary.... but i didnt have an actual tumor as such, just Big abnormal cells. Do you think that could also cause the vision troubles. Or possibly the surgery itself? Although it was 5 months post op the Vision trouble started, so im tending to think not?

I guess i just have to stop thinking about it and have patience and just wait !
Its easier said than done though lol

Thanks for your detailed response.

Now im wondering if there is anything neuro wise that could be causing the high cortisol, hence high blood pressure !!! Hmmmm

I need to stop thinking LOL

thanks again

[Foggy2]

I'm sorry to hear of your problems and the run around you have gotten.  Perhaps if you contact your Endo. MD and ask him/her why you were referred to Neuro and send you a copy of the report you will understand better.

Are you taking steroids now (perhaps HC)?  If so, what and how are you dosing?  Are you taking Florinef?  If so, that will raise your BP.  What was the original cause of your Cushings in taking steroids (why did you need them)?  What other medical problems do you have and other medications do you take?

The sound you have in your head could be due to your BP being high.  Have you noticed any difference with it starting to come down?  Are you watching your salt intake to be on a low salt diet?  Steroids will retain fluids in your body and salt does the same.

As for your abnormal visual field, this can also happen with pit. problems as well as brain injuries.  Sometimes you can go for cognitive training and/or driver's re-education to learn to compensate for the visual loss.  I'm sure you will learn why you have this when you learn more about your MRI and see the Neurologist.

Your BP is still high.  This may be related to what is going on (Neuro) or it could be something else where you may need to see a cardiologist.  Until you have more information (that is why I suggested you contact you Endo and tell her your BP is high as well as getting more info out of him/her), there isn't much more you can do other than do home BP monitoring and keep a log.  Bring the log in with you to the doctor to show that your BP is high.

In the future, I would suggest that you get copies (tell the doctors you want a copy for your records) of your diagnostic tests (like MRI), and labs.  Your doctors should also be communicating with each other as well as with you to include you in the plan of care and not leave you out in the dark.  If they don't, speak up and be pro-active.  You know your body, but you also need to be informed about these tests.  Let me know if you have questions or if I can assist you more.