post surgery update

[alex fleming]

Hi Guys,

Just a few lines to update you all about my post surgery results.

It's now 6 months after surgery for removal of my macroadenoma and I've had my new MRI.

I went to see my Endo as he arranged the MRI in Glasgow ( my neurosurgeon is in Manchester )and he told me that the tumour is well reduced away from the optic nerves and away from the pituitary gland but a third of it is still over into the left cavernous sinus. Once he writes to the neurosurgeon and after I speak to him myself by phone we will decide the next course of action.

He suggested that as my headaches have gone and the tumour is away from the optic nerves and that the only hormone I'm on is testosterone that we should leave it for another 6 months and have another MRI and see how I get on.

He also suggested trying to come off the testosterone to see if my body is producing enough on it's own as there is a risk of prostate trouble if I stay on the injections, so I will give that a try in three months time as the jag that I'm on at the moment is Nebido ( 3 monthly ).

My next doctor to see is neuro opthalmologist next month to see how my vision is coming along. My right eye is still good (this was never affected) but my left eye is still poor i.e. total blindness in my lower nasal quadrant and blurred vission in the other three quarters of the eye. This has shown slight improvement on their number scale but for me looking through it I don't see any change.

I will keep you all up to date as I hear it.

I hope everyone else is keeping well.

Alex

[JohnwithanhD]

Good to hear you are making progress, Alex.

Hopefully your vision will continue to improve so you have better use of your left eye.

It must be nice to be rid of the headaches.

John

[alex fleming]

Hi everyone,

Sorry It's been so long since I last came on line but between running my own business and taking a long holiday to family in South Africa I just didn't seem to have time.

And before anyone asks, yes I did bring back a Vuvuzela!!. Not for myself though but for a friend. Boy! can those things make a noise, no wonder I heard that UEFA have banned them from European football.

Well, back on to my update. It's now 8 months after surgery and I've been to see the Neuro-opthalmologist about my vision in my left eye. The bad news is that there is no improvement on this vision test to my last vision result (which actually did show a little improvement to the pre surgery test). I was told by the Neurosurgeon that if my vision was to return then he would be expecting it to be back within the six month period after surgery or if not, then the chances of full vision returning would be slim. So it looks as though this is as good as my sight will get, good job we are designed with two eyes as my right eye has perfect vision ( well, for someone who wears glasses ). I have to go back in January for another check anyway just to make sure things are still okay as about a third of the tumour was left behind as it was too near the carotid artery to risk removing but was well de-bulked away from my optic chiasm.

My Endo results were the same as last time i.e. all hormones in the normal range exept the testosterone which is at the lower end with gonadotrophins on the low side so I'm still on testosterone injections. They put me on 3 monthly Nebido rather than monthly Sustanon but I think I will ask to go back on the monthly as I found that to be better for me. Is anyone else on testosterone who could give me feedback on how they are felling on one or the other injections?

My Neurosurgeon consultation is this month (September) so I will keep you all updated with what he says.

On the whole I'm feeling good and still working away and I count myself very very lucky to have come out of this stage of my pituitary tumour journey without too many side effects ( keeping my fingers and toes crossed for the future journey ).

I have noticed my weight has increased but not sure if this is down to hormones or wether I'm just more at ease and just eating and drinking more as there are more important things in life than worrying about your weight.

Will keep you all posted if anything else comes up

Regards

Alex

[pinhey]

Hi
Good to hear your doing well, although sorry to hear your eye hasn't improved,It's always nice to hear updates from members and to hear how they are doing,hope you had a good time in south Africa
Best wishes pinhey

[Paul Clarke]

Hi Alex,

For your information, I lost vision in my left eye completely on three occasions and my sight came back. It has gone again. This time, the loss of vision is total. After a while, you don’t really notice which in itself can be dangerous, especially when driving. With my left eye gone, turning right on a T-Junction needs conscious care. Occasionally, I get a free light show in my right eye which, while looking very pretty, can be a bit of a nuisance when it takes away all your remaining sight.

The chances and extent of your vision recovery is I think a function of the length of time your vision has been compromised. They talk about having to wait 6 weeks to see the end result however, you can continue recovering for about two years.

As regards testosterone, I take the gel which I ind very good. Your own body will tell you how much to take and when.

Talking about your weight gain, steroids will do that to you and my weigh fluctuates regularly by about 6 stone. I would tend to “Abuse” steroids (Hydrocortone and Dexamethasone) a lot. If I know I will need to be able to function for whatever reason in a few days, I will increase my dose, sometimes more than doubling it. After the event, I will come back down to the recommended dose. A spreadsheet showing my steroid intake and my weight show a clear correlation between the two when pulled into a graph so don’t worry too much about the extra weight as you ill lose it easily. The only problem with me is that i put on so fast that I ended up with stretch marks all over my belly.

I hope you find at least some of the above info useful to you. Let us know how you are getting on and don’t forget that everyone in Pit Chat is behind you.

Regards,

Paul