Doctors Reactions to Wanting surgical options.

[Jackson-Lewis17]

Hey all first non intro forum post for me but I felt I needed to ask others.


While I am a person who knows any surgery carries risk and so a degree even more risk with neurosurgery. I also am a person who is hard to find any medication for anything to work for..... I felt like I have been cold shouldered by doctors for even inquiring about finding out If I am a candidate for a temporal lobectamy...... I first asked about surgery a few months after my first seizure, But was immediately told that surgery only becomes an option after two pharmaceuticals have failed to control seizures.... a year passed two pharma drugs failed to control the seizures for what doctors called a "minor" form of epilepsy...... so again I inquired about the potential for at least sending my info from EEG and MRI scans to find out if I am a candidate for surgery. that time the doctor went straight back to trying to push other kinds of even more expensive medication (that i cannot afford as i have no coverage) on me.

so I left the neurologist and went to get the referral to inquire about surgery from my family doctor...... she seemed confused and not wanting to even give me the referral for inquiry..... even acting like I am crazy to want to see surgery as an option...... and they refused to send it even to any other out of province doctors when they did send out the referral......... I just feel like this is odd for doctors to say: well we cant do it till this happens, that thing happens then get treated like I am nuts for wanting to try other potential paths........ that while expensive will potentially cost me less in medications over a lifetime for the cost of one surgery...... so felt I needed to ask if any others were treated like this for simply asking if surgery was an option for them.

 

[Porkette]

Hi Jackson,

Before I could have the right temporal lobectomy my Dr. found out I was drug resistant and I had been on over 10 different seizure meds. and nothing was stopping my seizures. I then saw an Epileptologist and spoke about having surgery done and I had to have a lot of testing done PET and SPECT scan, wada test, e.e.g. angiogram and stress test not to mention neuropsycological testing done to be sure I could handle having surgery especially since I had to be awake for most of the surgery.
It took about a yr. of testing and then the Drs. made the decision if it was safe enough to have the surgery. This is what you will have to go through in order to have surgery. I also got 2 different opinions because I wasn't happy with my first neurosurgeon and I'm glad I did. You may want to get a 2nd opinion also. I wish you the best of luck and May God Bless You!

Sue

 

[Nakamova]

Like meds, surgery is no guarantee of seizure control. It's a big step, and many docs will only consider it as an early option with certain kinds of severe epilepsy. Another possibility is that your docs may not be familiar with surgical options (or other interventions such as VNS). Are they at a hospital center that has neurosurgeons specializing in epilepsy? If not, you may need seek out a specialist.

If you have no insurance coverage, that may be another reason why they are reluctant to go the surgical route, which can be expensive. As Sue notes, there's quite a bit of testing required (EEG and MRI aren't sufficient) to determine if someone is a good candidate. (On a side note, doesn't Canada provide at least minimal coverage for medication?)

 

[CQ:)]

Hi Jackson
I live on a country town with 2 general neurologists, I saw my local neuro for 7 years and he tried me on 5 different epilepsy meds, none of which controlled my partials before he finally said he couldn’t do anything more. So in late 2009 surgery was bought up and I was referred to a epiologist in the city who I saw in mid 2010, when I saw the epiologist he went through my history of epilepsy and agreed I was a good candidate then we took the next step which was the start of pre surgery testing.

MRIs always showed scarring on my left front temporal lobe but I still had to have a pet scan, spect scan, Veeg, another mri and neuropsychologist evalualuation to make sure I was mentally ready to go in for brain surgery and there were no issues with my memory.

I had my surgery in March 2011, had good recovery and was 2 years seizure free but my seizures returned. I was on 2 meds when I had my surgery, I am now on 3 as we are trying to find the right med combination to get the seizures under control again.

 

[Jackson-Lewis17]

Right now I just want info let alone when i am at 18 months with three medications failing. Even if it does not get rid of them more control would be helpful for me.


Sent from my iPhone using Tapatalk

 

[Cint]

Jackson-Lewis17,

You seem a bit anxious to go down the neurosurgery route. Like Nakamova and CQ have stated, there is NO guarantee for brain surgery, just like there is NO guarantee for meds. Like CQ, I was on 4 meds before I had a left temporal lobectomy. I was only seizure-free for 18 months. Then the seizures came back with vengeance. Before surgery, I was having only CP seizures, after surgery I not only had CP but they went into tonic/clonics as well. So for another 7 years we tried another 7 drugs, to no avail. In 1997, I had the VNS (Vagus Nerve Stimulator) and although it has NOT stopped all seizures, I have not had any T/C since. And I still take two AEDs. So my point is, check out ALL avenues before having your brain cut on. There is NO turning back. Plus, depending on where the brain is cut, one could suffer paralysis, memory loss (big time for me), mood swings (another problem for me) and more.
Check out this site for more info:
https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/risks-and-benefits

 

[Lisa36]

Jackson-Lewis17,
I feel it is very legitimate for you to want to find more info about your condition after two or three drugs have failed, and that it would be very ideal for you to attend a more comprehensive epilepsy center, not merely for the option of surgery, but rather to have access to doctors that can do more extensive tests in order to hopefully find the underlying cause of your seizures. That would then allow the epilepsy specialists to let you know of all your options as well as their recommendations, including which procedures are more promising than others, which are riskier, if antiseizure drugs are ever likely to control it, etc. I don’t know too much about the referral process in Canada, but even if it takes that long a wait time to see a specialist, I feel it’s still very much worth it. And by the way, there are some who have very good outcomes from epilepsy surgery, many of whom do not post on these websites.

 

[Jackson-Lewis17]

Cint: right now it is just about the information....... like i'm being looked at like i'm nuts to know more including if anything but drugs are an option...... and at this point given my interests if surgery can help it is potentially worth the risks.


Lisa, yeah trying to my current doctors are not really helping with the referrals (hoping that may change today) but even getting info to doctors or professional epilepsy centers is difficult

 

[RTL]

Jackson,

Here on the opposite side of the country, I had the opposite experience. My neuro actually raised the idea of investigating surgery, an option I had not been aware of.

Of course I would have hopped on the table that day, but we all know that's not how it works. I've detailed many of my thoughts and experiences here:

drive.google.com/file/d/0B4W1q98dcPYKT0hfSTI2N3ZuYjA/view

I hope you can get some answers rather than push-offs.

Kevin

P.S. Still won't let me post links so you'll have to copy/paste.