Update - looking at possible brain surgery

Cint

Veteran
Supporter
Messages
5,521
Reaction score
10
Points
193
CQ,

Best Wishes to you. Let us know how you're doing.
 

Endless

Even Keel
Messages
4,466
Reaction score
2
Points
0
CQ,

Good luck. I want to hear how it went when you get back. I'm crossing my fingers that you will get results that clear things up.

Two weeks! I wish I would have logged in sooner to recommend isometrics or band exercises while you are in bed. Muscles atrophy pretty quickly during bed rest. Afterwards I wished I had done any exercises allowed while still in bed!

If you manage to log on during your hospital stay, know we are thinking about you, and supporting you from afar.
 

CQ:)

Veteran
Messages
4,033
Reaction score
114
Points
178
Thankyou to everyone for the wishes & thoughts.

I won't have access to a computer while in hospital, so have to wait until i go to my parents before I can go online.

Talk to you all in 2 weeks :)
 

CQ:)

Veteran
Messages
4,033
Reaction score
114
Points
178
Hi All,

Just an update on how things went with my Video EEG.

All up I was only in hospital from last Monday to Saturday.
On the Monday the drs took me of the Neurontin & reduced the Keppra. On the Wednesday they reduced my Tegretol.

On the Tuesday, Wednesday, Thursday nights I only slept a total of 8 hours.

Even though my meds were reduced & I was sleep deprived I only took a couple of auras so they weren't able to do the 2nd SPECT scan.

I had a lady from the neuropsych team come in on Tuesday & Wednesday to do some exercises with me for their research. I had my memory/concentration test on Wednesday & saw the psychiotrist on Friday.

On Friday all the specialists involved in the surgery discussed the cases of teh patients in for video EEG. The Professor came in on Friday afternoon to let me know that even though I didn't take any seizures with the video eeg they had enough information to agree that I was a very good candidate for surgery :woot:.

I just have to wait for the official letter & I may be able to have the surgery as early as March next year which is pretty cool :D.

My Mum & I stayed in Melbourne for a couple of extra days as I had an advanced MRI Yesterday. The epilepsy liason lady at the hospital arranged for Mum & I to stay at a place for patients who live out of town & need somewhere to stay.

While we were staying at this place I met a lady from QLD who just had surgery 2 weeks ago & she gave me heaps of info & tips.

I am now of the neurontin & lower doseage of Keppra. I took a partial seizure on Sunday morning but apart from that all has been going well.
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,698
Reaction score
164
Points
173
Hi CQ, sounds like things are going well. It's great that you met someone else who's had the surgery -- any chance you could stay in touch with her to get updates on how she feels over the next few months? That would be useful info to have...
 

CQ:)

Veteran
Messages
4,033
Reaction score
114
Points
178
Hi CQ, sounds like things are going well. It's great that you met someone else who's had the surgery -- any chance you could stay in touch with her to get updates on how she feels over the next few months? That would be useful info to have...
HI Nakamava

I clicked straight away with this lady & we exchanged contact details so we can keep in contact.

She's already given me so many tips on surgery & what to take with me which has helped.
 

CQ:)

Veteran
Messages
4,033
Reaction score
114
Points
178
Hi all,

Today I found out the date for my surgery. I am having the surgery on Thursday 10 March 2011.

I have to go to Melbourne on Sunday 6 March as I am booked in to have different appts (tests, meet surgeons, see specialists etc) on 7 March, 8 March & 9 March.

I just keep thinking how quickly those months will fly by lol
 

ColmanMac

New
Messages
388
Reaction score
0
Points
0
Hi CQ Surgery is one of the options for me and I must confess, it scares the crap out of me. Mainly because my Doc is so vehemently against it, despite the assertions of consultants - and because I've known my GP for some 20 years + he lives 3 houses off us I tend to have more trust in him.

The consultants always give me the impression that I'm dragging them off the golf course to see me - which is a mistake as I can be quite a beligerant little sod when need be (I couldn't do this job if I wasn't!).

Re: Keppra: Have you spoken to your Doc about another variant of the drug. I was first prescribed Keppra & the effects were horrendous. I had a hell of a time. Then my Doc tracked down Orlept for me and I've had no problems at all with that variant of the drug.

I've also been told that, at times, bad side effects can be down to something so idiosyncratic as the coating on the tablet. Go to your Pharmacist & put them through the third degree; check the clinical trials via. internet; check the 'BNF' (an invaluable clinical resource here. It's for Drs reference but as it's published every year, they just throw out the previous one and generally nothing changes in it, so grab yourself a copy if you can. If not e-mail British National Formulary. I'm sure they'll stick a copy in the post to you.

Col.
 

CQ:)

Veteran
Messages
4,033
Reaction score
114
Points
178
Hi CQ Surgery is one of the options for me and I must confess, it scares the crap out of me. Mainly because my Doc is so vehemently against it, despite the assertions of consultants - and because I've known my GP for some 20 years + he lives 3 houses off us I tend to have more trust in him.

The consultants always give me the impression that I'm dragging them off the golf course to see me - which is a mistake as I can be quite a beligerant little sod when need be (I couldn't do this job if I wasn't!).

Re: Keppra: Have you spoken to your Doc about another variant of the drug. I was first prescribed Keppra & the effects were horrendous. I had a hell of a time. Then my Doc tracked down Orlept for me and I've had no problems at all with that variant of the drug.

I've also been told that, at times, bad side effects can be down to something so idiosyncratic as the coating on the tablet. Go to your Pharmacist & put them through the third degree; check the clinical trials via. internet; check the 'BNF' (an invaluable clinical resource here. It's for Drs reference but as it's published every year, they just throw out the previous one and generally nothing changes in it, so grab yourself a copy if you can. If not e-mail British National Formulary. I'm sure they'll stick a copy in the post to you.

Col.
Hi Col,

As soon as my regular neuro suggested having surgery & seeing an epitiologist I started my research. I wasn't going to see the epitiologist not knowing what was going on so I researched him, the hospital I was going through, the testing I'd have done & of course the surgery.
The epitiologist I am seeing now is one of the best in Australia & the neurosurgeons who do the surgery are also the best.

I am aware of the risks involved with this surgery & the fact that there isn't a 100% chance it will work or the seizures will come back. I am still willing to try though as at the moment the medications aren't helping control the seizures. I am lucky as I have great support from my whole family & great friends.

I haven't had any side effects or problems with the Keppra. I had worse problems being on the Neurontin. The Neurontin made me extremely tired & I had terrible mood swings. I would either snap at the slightest thing (my poor Mum was the one who I snapped at) or cry over silly things. I hated being on the Neurontin as even I realised how it was affecting me & I didn't like being moody.

When I went & had the video EEG earlier this month I spoke to the drs & told them how I didn't like being on the Neurontin so they took me of it straight away. I am now only on Tegretol & Keppra & I have noticed the change. I don't get so moody now & I have been able to go days without having to have a nap.
 
Last edited:

ColmanMac

New
Messages
388
Reaction score
0
Points
0
Hi CQ. Good to hear from you & for your comradeship. I suppose my attitude towards surgery can best be summed up by selfishness - in that I look at the things most important to me (wife & kids) & then have to balance not waking in the morning to see them against any other risks.

Job wise, nothing matters & I think I'm one of the few in my industry who is desperately trying to vacate his position rather than hang on to it. However my Director & I have plans to go together, which will have to be planned plus I'm contracted to a 6 month notice period, working in tandem with my successor & who's recruitment I am obliged to be involved with!

Meds wise, the worst experience I had recently was with Phenitoin which made me so dizzy/disorientated that I couldn't even get down stairs unless it was on my bum!

Take Care
Col.
 
Top