Post steriotatic symptoms: Hello all... - Acoustic Neuroma ...

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Post steriotatic symptoms

Leodo profile image

Hello all, my wife had steriotatic radiotherapy 6 months ago and is now having serious co-ordination issues. A second mri scan has shown a slight increase in size and some fluid, anything similar? Any advice? Doc says he will review in 4 weeks.

21 Replies

Why did you go to thailand for surgery ? its essential that she recieve post op care from a neurosurgeon and ent for at least 5 years after

Welshie74 profile image
Welshie74 in reply to

Where does it say she went to Thailand for surgery?

in reply to Welshie74

Your original post (which is in my email), mentions Thailand as the place of surgery. Why did you edit?

colbe profile image
colbe in reply to

It was vmcnorton12 who posted about surgery in Thailand.

Hi Leodo I had the same surgery 3 weeks ago. I am in the same situation as your wife I've got an increase in fluid. I'm having more problems with my left arm than my right (tumour is on my left) my concentration is also affected and dizziness is a major issue for me at the moment. X

Leodo profile image
Leodo in reply to Welshie74

Hi, thanks for the reply, do you have any idea if this is normal? How long will it last? Etc etc. I am struggling to understand how to get co- ordinated answers. GP does not know anything about the condition, surgeon is 80 miles away and has not seen my wife, all discussions have been on the phone

Surgery was done in Leeds. Where did you get Thailand from?


If by co-ordination you mean balance problems, click on this link for brain exercises that will help.

Leodo profile image
Leodo in reply to drdeanbellavia

Hi, thank you, we will try, balance is certainly part of the issue but also walking is getting more difficult I think due to what feels like poor connections to the leg muscles, quite alarming really

Your balance is a function of your inner ear, sight and somatosensory system. By concentrating on your walking as you do these exercises you will not only reset your cerebellum, you will retrain your legs and feet. Basically, you need to learn to walk again.

Leodo profile image
Leodo in reply to drdeanbellavia

Thanks again she will now have a go at these exercises but is a bit tricky when you are struggling just to walk

Hi I only had my treatment in jan, so fat no effects altho I met with my oncologist yday and she said there may be (referring to me) slight increase in size around 6-8 months which is normal, hopefully things for your wife will settle. I'm currently on avastin infusions which could act as an anti inflammatory. I've had steroids when I had treatment, did your wife.

Leodo profile image
Leodo in reply to sadie2009

Hi Sadie, thanks for the reply, yes she had steroids with the gamma knife op, consultant has said he may use steroids again in 4 weeks. we did understand the 6 month getting worse issue, just did not think it would be this bad for so long, (now about 3 months) just wondered if anybody could give us an idea how long it will last, she is now trying the exercises from dr dean. Nobody has told us any of this so appreciate all your help

I'm sorry to hear this. I had mine surgically removed at Mayo-Rochester. My ENT and Neuro surgeon were awesome! Not sure if this is a possibility for you or not. I had regular conversations with my team of doctors for the first 3 months. If you want names, let me know.

I had GK after surgery on a cystic 3cm AN 7 years ago. I remember the consultant telling me there may well be swelling of the tumour after GK before then shrinking - mine did just that. I think the swelling lasted for c. a few months? I also got fluid (it sounded as if my ear was underwater!) - the surgeon suspected CSF leak. Went back in, couldn't find the leak, suspected it had healed itself. Got back to "normal" after a couple of months. The tinnitus has never gone; balance in general great although I still get wobbly when tired/excited/stressed, so I try to avoid tiredness, excitement and stress!

Leodo profile image
Leodo in reply to anan88

Hi thanks for this, when you say surgeon went back in? Do you mean another operation? Also what is Csf leak?

anan88 profile image
anan88 in reply to Leodo

Forgot to say - the dizziness etc. were pronounced after the Gamma Knife until things settled down again. Everybody heals at a different pace so it's difficult to generalize, but I think some wobbling/buzzing/headaches/swelling etc. are fairly normal afterwards. At least it's working on the tumour though, so that's a comfort!

Hello - CSF is Cerebro-spinal fluid (the fluid that baths the brain and spinal chord). So he opened up the same flap he's used for the AN de-bulking and poked around a bit. Although it meant another head shave (sigh!), at least he was being thorough. This probably explains why the indentations, lumps and bumps around the op. site are more pronounced and change quite a lot - scar tissue etc., but no bad effects since.

I'm not a Doctor but I did have very successful radiosurgery 20 years ago. At the time I, along with other patients was warned not to take any action if the AN appeared to be larger at any time up to about 24 months post treatment as this would normally be post treatment swelling. In my case, the AN was slightly shrunk at 12 months and had shrunk to a quarter its pre-treatment volume by 5 years. Keep an eye on it but give it time. Make sure that your MRIs are reviewed by an experienced radiosurgeon NOT just a neurosurgeon. Good luck.

Leodo profile image
Leodo in reply to bypass

Hello, thanks for this, we have been back to the consultant who pretty much said the same. He has put the wife on a low dose of steroids so we are monitoring this at the moment. The daily sickness and co-ordination issues are the most difficult to cope with. if the steroids have no effect on the increased fluids in the brain, he discussed putting a drain in but does not want to rush into this.

bypass profile image
bypass in reply to Leodo

Yes, do keep a close eye on the hydrocephalus possibility. Two friends of mine (one a surgery patient and the other a radiosurgery patient) ended up in mental institutions for a few weeks when their Docs failed to look at that possibility. As soon as someone realised what was going on they were each very easily and quickly fixed (shunt fitted) and more or less back to normal. I should say that this is unusual as most Docs are well aware of this.

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