I am very scared. Optic Field Test results show my peripheral vision is 95% gone on the left eye and 30% gone on the right eye. This has slowly happened but only really bad vision loss in the last 3 months. I am going for a CT scan in a few days so the doctor can put me on Dostinex or operate.
My question is if the operation is 100% sucessfull or the tumor will shrink with medication, will I regain at least some of my peripheral vision. The eye doctor from where he could see, saw that the nerve is not swollen or anything and says it can even be decompressed if needed. I just need some hope.
If the eye doc said the nerve is not swollen, then hopefully your chances are ok - but why oh why has treatment been left so long that your eyes have been impacted like this?
You should have been treated the moment or BEFORE your eyes got bad!
You will probably have to have some surgery as well - to debulk the tumor. A couple of us here have had the surgery - just make sure you have it in the hands of a super super experienced surgeon given your situation. You need an MRI, not a CT. Make sure your surgeon has done 500 surgeries or more lifetime, 50 in a year and has a lot of experience with macroadenomas. He must use an endoscope not a microscope (more view) and you may or may not lose other hormones in the process so you need a very skilled surgeon.
My tumor was a meningioma and presented itself as optic neuritis. When the optic neuritis was at its worse, I had significant visual field deficits. However, I regained most of this vision.
It is very hard to predict what will happen with surgery. Depending on the tumor type and specific location, you may need an open craniotomy which is what I had. My tumor had compressed and displaced the optic nerve. Before surgery, I was given a 1 in 10 chance of the procedure leaving me completely blind in both eyes, and an even greater chance of losing vision in the affected eye (wouldn't give me a number). Their goal was to go in and decrompress the optic nerve, and debulk the tumor enough to make room for radiation. When they went in, they saw that they could do more than they thought and they removed almost all of the tumor. My vision is much better than it had been earlier with only minor visual field deficits (which may not even exist according to my neuro opthamologist).
The success of the procedure depends on many factors that are hard to predict. It depends on if there are any vascular connections btw the tumor and the optic nerve. My NS (all 3 I consulted) said that sometimes tiny blood vessels develop, and if they do you don't want to touch it because removing it would premanently damage the nerve. It also depends on the adhesiveness of the tumor as well as the consistency. Their willingness to remove it may also depend on how close it is to the optic chiasm. Unfortunately, they do not know many of these factors until they are actually in your head.
Even if you like your doctor, get at least 1 or 2 other opinions, especially when involving this area. You want an experienced skull base neurosurgeon.
Also, like rumpled I am surprised that you not getting an MRI. What type of doctor are you seeing?
I could figure out is is a prolactinoma by the meds used to treat it... so it is a large pituitary tumor. I hope - hope hope hope - the person is at a pituitary center with a neuro endo! But it sounds like not...
Please note that my husbands eye is only 50 % affected in the left and not 95%,He is now so hopeless due to the comments made that we are having trouble to have him focus on recovery and not the fact that he thinks he is now going blind please could you just give him some hope seeing as you have gone through this yourself. He needs it desperately.
Is there hope? Must he start dostinex / cabergoline while waiting for a mri (2 weeks time). The right eye is still fine looks like the top right quadrant of the right eye in the picture. He can read decently.
I am so sorry that you are in this situation. Cabergoline/Dostinex is shown to reduce prolactinomas in about 70-75% of the cases. So yes there is hope, if your growth is a prolactinoma.
I am glad that you are getting an MRI vs a CT scan. It will show more detail as to how the adenoma is situated.
Were all of your hormones checked? Prolactin? Thyroid panel? Cortisol? IGF-1? Testosterone? If the growth is large enough to press on the optic nerves it might also be causing hormonal shortages that can be corrected. This might help you to feel better too.
@horselip thank you so much for giving me some hope. Now can someone give me a more or less percent on whether my vision can improve. It got worse in a short amount of time. Only started bugging me 2 months ago. Prolactin is only high but very high. It is pressing on my optic Chiasm says the doctor.
That is a mystery unfortunately. It will depend on how you respond to the medication, how "stuck" your adenoma is to the other structures, where exactly the adenoma has decided to place itself, whether you pursue surgery, if you do have surgery how good the surgeon is.
These are the questions that we all ask in some form or another.
I'm sorry that I cannot help you more than that. I hope that you will experience good results and find good doctors who can be straight with you.
If dostinex does not work, there are also other medications to try as well - parlodel is one of them (bromocriptine - it may have another name as names vary in other countries) and in other countries other medications may be available.
It all depends on your body, your reactions and your tolerance to the medications as well.
thank you rumpled will it be dangerous to start with dostinex if my tumor is big. Will it make it worse or must I wait for the doctor? I do not want to waste time so am considering starting 0.5mg dostinex on Monday and Friday. I was told to take Vitamin B6 250MG a day to help shrink tumor and am taking Chaste Tree extract. I don't want to go blind. I just want 20% improvement maybe 30% would be awesome.
No it is not dangerous at all - those drugs have been well used by a lot of people. There are side effects but they generally make you feel lousy. They have to monitor you - but there is really no downside.
As far as I know - the meds work in 75 to 80% of people but it may not work enough to shrink the tumor a lot. But then you can try a different medication.
My vision in the last 8 days after taking Dostinex has improved on both eyes especially on the left eye which was worse off. I have taken a combination of nutritional supplements as well to boost the response of the medication.
Vitamin B6 - 100mg per day
Spirulina - Marcus Rohrer 12 tablets per day
Chlorela (Read how it can help with regeneration of Optic nerves will start taking soon)
Eye Care formula usual vitamins for eyes
Flax Seed Oil
50mg Dostinex every 3-4 days
Praise to the Lord every night as he controls the effects of the medicine / supplements.
I hope with all my heart this is going to stay this way and only get's better.
I am so glad to hear that the meds are working for you!!!! That is actually quite fast - and so it bodes well for continued improvement. Please keep us posted!
With the hurricane, may have delays getting back to you!
Doing much better vision almost 100%. Only problem is I keep getting a stuffy nose. Saline does not help much and now I am scared and need to know of alternative ways to remove this! Thank you everybody for your help.
I use a large bowl of lightly salted water and a biggish towel - nuke the bowl so that it is steamy and hang your head over it with the towel over your head so all the steam is trapped - it is a facial and sinus cleaner. Stay in as long as you can - peak out if you need to - and repeat as often as you want!
I also like chicken soup and if you can tolerate anything spicy - that can clear the sinuses too... If you really run into issues, go to the ENT. I was asked to use a water pik to irrigate my nose but that was only under doc orders and it was oh so horrible so don't do that unless you have to - they also did debridement (they numb you). So talk to the doc but try steam!
I can' find flonase and fluconase in south africa. Any alternatives that work or very similar? Thanks rumpled the steam helped for a while. I also went to gym and it goes away while I am gyming probably because the blood vessels / arteries open up / better circulation / higher heart rate.
You might ask your pharmacist? Maybe it is called something else there? The official name is Fluicasone Propionate. It is a nasal spray that has a small amount of steroids in it to reduce swelling in the nasal cavity, They do not really get absorbed into the bloodstream unless you use a very high dose. Flonase is a brand name..of the medicaation.
Thank you!!! My mom says they all prayed for me and big religious guys gave me their blessings. They say that my tumor will disappear completely. Is this possible or not really? It was 1.5x1cm in length when it was diagnosed. Otherwise I can wait until it is small enough and remove it with focused radiation therapy!
I know it can be controlled as long as you are on medication and will shrink - but you have to stay ON the meds. Some things like pregnancy (sorry I cannot tell if you are male or female) or illness, or thyroid issues, can make the prolactin rise. So disappear - maybe??? Shrink, that is more probable but the extent can vary!
I would be uh... thoughtful when it comes to radiation.
Thank you. Radiation... In the past they had to focus on entire areas. Now they can direct the radiation simply on the tumor so it is alot safer than the past. I am just scared because I heard Dostinex causes Fibrosis and Heart Valve problems!
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