Waiting for surgery

[Itr786]

Hi,
I've had every scan/test done under the book for surgery to be carried out on my temporal lobe epilepsy.
Various mri/various difference eeg scans, memory tests to make afew...

After my last appointment with my epileptologist in mid-september, and confirmation that I would be a candidate for the surgery, I've not heard back from the hospital.
Has anyone from experience know how long I'd be looking for to have surgery?

I believe I'll have a meeting, at some stage with the epileptologist and surgeon carrying out the surgery to dicuss the procedure, but I'm not sure whether that's a meeting that takes place a day/week/month(s) after the surgery would happen.

What would the next step be? I'd been hoping the surgery would have taken place early this year, but as the weeks/months have passed by, it looks like that's unlikely.
My wife's pregnant with out first baby which is due in April, so know our luck, it'll be aroing the same time as the due date!.

 

[BIGMAN131307]

Well when I was getting ready for my surgery it went tests: EEG, MRI, WADA, Video EEG
Then a meeting with my Neurologist to discuss results. The Neurologist discusses results
with Neurosurgeon & board about my case. Then I met with the Neurosurgeon to discuss the surgery. Two months later I had my surgery (RTLS).
19+ mos later I'm still seizure free.

Remember the recovery time will take some time. At least a week in the hospital after surgery. Then at home slowly from there, over a few months. You can't rush it, or you'll run into problems.

 

[Itr786]

So from that, I should in theory have had the surgery.

I've had all the necessary tests, x2 mri, eeg, video telemetry scan, memory test....

obviously it'll vary depending on country/city/hospital, but I'm going to start chasing the hospital up about this.

 

[CQ:)]

As you have said it is different with every hospital/ country/ specialist.

I had surgery on my left temporal lobe in March 2011 at Austin Health in Melbourne Australia. From the time my original neuro suggested surgery to when I had surgery it was appox 16 months.

The longest part of the whole process was getting in to see the epiologist. My neuro suggested surgery in November 2009 & referred me to see a epiologist in the city. I couldn't get in to see the epiologist until June 2010. Once I saw the epiologist we took the next step which was to start pre surgery tests.
I had my 1st lot of tests PET/SPECT scans & MRI in September 2010, a 5 day VEEG, neuropsych assessment & fMRI in November 2010. I also found out in November 2010 that I was a good candidate for surgery.

I had to go to the city a few days before my surgery to meet the surgeon & for a couple of last minute pre surgery tests.

 

[Nakamova]

Your docs shouldn't have left you hanging. This is a big deal, and you need to get your schedule set up. Don't be shy about calling and getting some clear answers.

 

[Itr786]

It just so happens I've literally just got off the phone to my epileptologist's secretary.

According to her records, after my last appointment on 10 September, where we discussed surgery, and I made clear that I would want to go ahead with it, he was scheduled to speak to the surgeon (which apparently took place mid-December), she has nothing on record since regarding the outcome of this meeting....
She has said she'll speak to my specialist, and get back in touch with me.
The sooner the better (rarely would you hear a patient pushing the hospital to get them under the knife and have brain surgery done!).

 

[Nakamova]

It took three months for your neuro to have a conversation with the surgeon?!? The wheels of modern medicine move slowly indeed....

 

[Itr786]

Yup, as much as it's a Great British institution, things seem to move slowly with the NHS.

I'm just going to keep pestering them now. I'm off work at the moment because of my epilepsy, and my employers are also getting on my back (rightly so) on developments.

 

[suebear]

It took three months for your neuro to have a conversation with the surgeon?!? The wheels of modern medicine move slowly indeed....

actually.. if there are a lot of things going on with surgical matters (i.e. internal emergency, critical calls for example) they will and do come first. Surgeons are busy personnel especially when there are not many of them within a hospital facility.

I just went through this when having surgery as of December 2015. They rescheduled it twice and my VNS was dying BUT even though I was underlined as a critical case the in-house patients and emergency patients come first. I fully understood and had no problem in rolling with the hospital policy and procedure.

It can get crazy at times in the medical world but unfortunately that is at times how things fan out. I can fully attest to that because I was witness to see all the activity taking place.

 

[rock and roll]

Has anyone had a Magnetoencephalography before their surgery? This wasn't done before my first surgery, and I'm just curious how often it is used these days, and what to expect.

 

[suebear]

Has anyone had a Magnetoencephalography before their surgery? This wasn't done before my first surgery, and I'm just curious how often it is used these days, and what to expect.

If not mistaken, this is another type of mapping done prior to specific brain surgery because it is a part of mapping seizure marks. The neurosurgeon must know specific areas to double check and triple check testing that has been done before patient is operated on.

I couldn't tell you how often it is used but if you're THAT curious I would ask the surgeon. The knowledge a neurosurgeon needs to know before performing surgery is quite serious as they need to double check and triple check everything before beginning their specialty on a patient.

The more questions you ask your neurosurgeon the better you are as it shows you do care about your health and it also shows you have interest. I would also ask your surgical case nurse as they can direct those questions to the surgeon and get back to you with the answer within a reasonable time limit.

Best of luck to you!

Regards,
Sue

 

[rock and roll]

Thank you! I will ask. I think it may have to do with the fact that my VEEG showed seizures, but they still could not find the "spark"... So that is probably it.

 

[edepew151]

Are you guys who've had surgery happy with it? I mean, did you have any bad "side effects" or were you able to live happily-seizure-free-ever-after? I'm starting pre-surgery testing this week, but want to know some first-person reviews before I agree to this.

 

[rock and roll]

I'm getting ready for my second surgery, I didn't have any "side effects" from the first, but it did not fully control my seizure. Hoping to be seizure free this time. Actually the nurse I had when my VEEG was done had gone 8 years seizure free after her second surgery. Gives me hope that this one might do the trick.

 

[bdhshakes]

I had the MEG done last year during my pre-surgery testing. From what I understood from my neuro it's pretty common in pre-surgical work ups just not so much outside of it.

 

[txtiger]

Has anyone had a Magnetoencephalography before their surgery? This wasn't done before my first surgery, and I'm just curious how often it is used these days, and what to expect.

I had magentoencephalogram 9MEG) before my surgery 12 years ago. It has been so long that I don't remember it clearly, but I do remember my epileptologist said it is a technology that they hope to use instead of the WADA test someday. As you may know the WADA is used to localize your speech and memory centers. I also remember that it was not covered by my insurance, so my doctor was able to get it done as part of a study, no cost to me.

Are you guys who've had surgery happy with it? I mean, did you have any bad "side effects" or were you able to live happily-seizure-free-ever-after? I'm starting pre-surgery testing this week, but want to know some first-person reviews before I agree to this.

I had my surgery 12 years ago, and I am happy I did it. My surgery allowed me to be seizure-free for a time, but they did gradually return, though they are different than they were before. (I used to have complex partials, now simple partials). I am still taking two medications, but my quality of life is much better now. I do not regret having the surgery. My doctor has even said that a second surgery could be a possibility if the meds do not work, though we are not to that point.

Best of luck in your decision.

 

[suebear]

Are you guys who've had surgery happy with it? I mean, did you have any bad "side effects" or were you able to live happily-seizure-free-ever-after? I'm starting pre-surgery testing this week, but want to know some first-person reviews before I agree to this.

I'm quite happy with the surgery that I've had. The first surgery I had gave me five years seizure free. The second surgery was even better as it had given me more control of the seizures which is what was needed and the final surgery was greater and proven to be the large master control.

Between the Deep Brain Stimulator for Epilepsy and a very minor amount of medication (pediatric dosage) I am not having seizures or I am having one a month. They are at a far improvement from where they were considering I was having 4 to 5 complex partial seizures a day.

I can live with where I am now and function much better. I am far much happier than I was. Patients have to be willing to take a risk on matters for improving his or her life, there is nothing guaranteed but there are high improvements in statistics with specific types of surgery that has shown it does work for certain persons. Every person is different and each patient must do his or her research along with ask questions to the primary doctor and the neurosurgeon that has suggested a surgery take place.

Neurosurgeons are quite skilled and there are many who do know how to perform and care for patients. As I said it is also up to the patient that must be his or her own medical advocate and stand up for themselves by doing their own research on the matter to ensure they have the backing of the information and ask questions to the neurologist to obtain the best opinions and medical research from doctors that this choice of surgery is going to benefit his or her health in the long-term.

I was a patient with serious epilepsy issues and at the end road of medication usage still having high rate of seizures. I ran out of options and did not have many more choices so I was willing to take the chance and the final surgery worked for my benefit. I went through much discussion and many questions with the neurosurgeon at the time who suggested this would be the best for my situation showing statistical benefits. That is what helped me make the final choice.

Here I am six years in from the original surgery in 2011 and I'm doing quite well and still improving; very happy to have made the choice I did. I chose to have a life that gave me as little seizures as possible and that is what I achieved.

 

[Itr786]

Hi everyone,

Update time...

I've just come home after having surgery. It was right temporal lobectomy surgery I had done hoping to stop my simple/complex partial seizures. It was carried out about 4 weeks ago now.

I was in hospital for 2 week, though originally I was told my stay would be only 4-6 days, but due to complications during my surgery, (apparently I'd had excessive swelling of the brain) meant my stay was far longer than first anticipated. It's been the hardest time of my life would be an understatement.
My memory has been pretty bad since the surgery, but it's all slowly coming back to me, it feels similar to a puzzle, it's a confusing period for me.

Due to the swelling, it caused quite afew issues. The main effects have been as follows...

I lost control of both of my legs whilst in hospital, whilst lying down I'd randomly start kicking out uncontrollably side by side, I'd only stop and regain control after being held down by a number of nurses, and slowly manage to calm myself down. I had literally no control of the behaviour of my legs. It all settled down about the day later.

My hearing through one ear had blocked pretty much completely (temporarily I hope), it feels like it's slowly improving.

My eyesight has been affected, the term written is... 'upper homonymous quadrantanopia'.
This is something I was also warned was a possible side effect from having this type of surgery.
I've been told by the surgeon it will slowly improve as time goes by, though I've not noticed any improvement just yet...

I'm now at home, I'm finding sleep difficult at the moment, I dread nightime. I'm finding it hard to get into a deep sleep. I'm getting afew hours each night, leaving me in a zombie like state for some of the day until I get a naps through the day to catch-up on the lack of sleep from the night before.
This sleep is really what is holding back my mental state at the moment so I'm hoping it goes back to normal as quick as possible.

I've also been feeling very emotional. Almost depressed about life, I'm hoping this is just a build up of everything that I've been through over the past month, I'm finding it hard to get up and do anything because I've been pretty much permanently in bed for over a month, and that has a big effect on muscle/fitness that takes time to get back to normal (or so I've been told).

Even with how difficult my time over the past 6 weeks has been, I can't say I regret having surgery done, I definitely wasn't prepared for what I am/did go through, but I'm slowly managing at the moment, and it would all be worth it if my seizures stopped. I'm not sure how I'd end up coping if my seizures did return in the future. I was explained its not a 100% certainty of the surgery stopping my seizures, but to think I went through what I have over the past 6-8 weeks for nothing would be unthinkable. (I'm just being negative now).

Just wondering if anyone who has had surgery carried out ever dealt with similar effects post surgery?

 

[suebear]

Hi everyone,

Update time...

I've just come home after having surgery. It was right temporal lobectomy surgery I had done hoping to stop my simple/complex partial seizures. It was carried out about 4 weeks ago now.

I was in hospital for 2 week, though originally I was told my stay would be only 4-6 days, but due to complications during my surgery, (apparently I'd had excessive swelling of the brain) meant my stay was far longer than first anticipated. It's been the hardest time of my life would be an understatement.
My memory has been pretty bad since the surgery, but it's all slowly coming back to me, it feels similar to a puzzle, it's a confusing period for me.

Due to the swelling, it caused quite afew issues. The main effects have been as follows...

I lost control of both of my legs whilst in hospital, whilst lying down I'd randomly start kicking out uncontrollably side by side, I'd only stop and regain control after being held down by a number of nurses, and slowly manage to calm myself down. I had literally no control of the behaviour of my legs. It all settled down about the day later.

My hearing through one ear had blocked pretty much completely (temporarily I hope), it feels like it's slowly improving.

My eyesight has been affected, the term written is... 'upper homonymous quadrantanopia'.
This is something I was also warned was a possible side effect from having this type of surgery.
I've been told by the surgeon it will slowly improve as time goes by, though I've not noticed any improvement just yet...

I'm now at home, I'm finding sleep difficult at the moment, I dread nightime. I'm finding it hard to get into a deep sleep. I'm getting afew hours each night, leaving me in a zombie like state for some of the day until I get a naps through the day to catch-up on the lack of sleep from the night before.
This sleep is really what is holding back my mental state at the moment so I'm hoping it goes back to normal as quick as possible.

I've also been feeling very emotional. Almost depressed about life, I'm hoping this is just a build up of everything that I've been through over the past month, I'm finding it hard to get up and do anything because I've been pretty much permanently in bed for over a month, and that has a big effect on muscle/fitness that takes time to get back to normal (or so I've been told).

Even with how difficult my time over the past 6 weeks has been, I can't say I regret having surgery done, I definitely wasn't prepared for what I am/did go through, but I'm slowly managing at the moment, and it would all be worth it if my seizures stopped. I'm not sure how I'd end up coping if my seizures did return in the future. I was explained its not a 100% certainty of the surgery stopping my seizures, but to think I went through what I have over the past 6-8 weeks for nothing would be unthinkable. (I'm just being negative now).

Just wondering if anyone who has had surgery carried out ever dealt with similar effects post surgery?

were you told it takes the brain 6 months minimum to heal? Secondly, everyone is different when it comes to the healing process for the temporal lobe surgery itself. I can only speak on my behalf.

I had the left temporal lobe done and personally I can tell you I was in the hospital for 3 days but it took me five days while at home to get it together and actually be willing to deal with people. The surgery took place in 1995. FAR back before the technology they do now.

I had emotions sure but I didn't let them get the better of me; I also had determination to get moving forward because I was not going to let things stop me from improving. I was told about how the memory was going to react and what could possibly happen with the long-term memory because of this type surgery. I was willing to live with it.

The short-term memory is just fine; I was tested before leaving the hospital and tested again and again during doctor's visits. The long-term memory finally began coming back about three or four years after the surgery. The real flooding of memory started to come back 2 years ago and it was amazing. I still have moments of that time but it isn't as frequent.

I don't get emotional like I used to as the brain is healed. As I mentioned it takes your brain six months minimum to heal from surgery itself. In some cases it will take a longer time depending upon how things are done and what takes place.

If you are having trouble it is best to speak with your neurosurgeon and your specialist because they are the best persons who can provide you the information and best care for your case. Every person with epilepsy is different and only your doctor and neurosurgeon can provide you the best care on how to manage it.

I wish you the best of luck for a smooth recovery.

Regards,
Sue

 

[Itr786]

Hi,
Thanks for your reply.

I don't remember anyone telling me just how long recovery will take, but I realise this sort of surgery won't heal up overnight, so I'm mentally prepared (or think I am) for a long struggle to get back to full recovery.

With regards to my sleep, with how I'm feeling in particularly in the evening/nights, I fear I'm starting to suffer from some form of anxiety?