Surgery-Where to go

I am the mother of a 23 year old son.  He has complex partial seizures with secondary generalized tonic clonic which originate in left temporal lobe.  He has had them since encephalitis at age 2.  They have never been controlled and he wants to have surgery.  I AM SCARED probably more than he is.  Please share your experiences with surgery, where is the best place to go, what centers should be avoid, anyone know anything about Rush(Chicago) or Mayo(MN)

What will he lose with left temporal lobe surgery?  I am afraid he won't be able to communicate as well and may get frustrated over memory loss.  I am also afraid he will be sorry he had the surgery and once that section is removed, there is no turning back.  Please share your good and bad experiences.  I want the facts and want to go into this with information that reflects reality, not just what the doctors want us the believe.

Thanks so much...my son's name is Ron; my name is Cathy.

Meds:  Topamax 400 mg., Lamictal 300mg., Keppra ?mg. Zoloft 100mg.

Usually one seizure every other week unless stressed over something.  He then has more.  He has gone 3 months with out a seizure but this has only happened a few times.

Glenda and Jen,

Thanks for answering back.  Glenda...Your personal experience means a lot.  I'm glad you are recovering.  How often are the headaches and how severe?  Is that common as well? 

I've been online researching and researching and the more I search the more confused I get as to where to go.  We are located in Illinois but willing to travel to get the best care.  I may sound untrusting of doctors and don't mean to be but I would rather consult with a doctor who has a lot of experience with left temporal lobe surgery than one who does only a few.  Our neurosurgeon only does 6 or so brain surgeries a year and this is why we are wanting to go elsewhere.  He may be very good but I would feel more comfortable with this if we went to someone who does 50-100 a year.

I did notice the website for the place that Jen mentioned in Minn.  Is that facility better known for these surgeries than Mayo?  Also, is there any type of website to get information on the ratings of the epilepsy centers?  I know type IV is better and I found the 2005 ratings of neurosurgery hospitals but that still doesn't help as far as "left" temporal lobe surgeries.  I've called around to a couple hospitals to get stats but they don't have them.  What are some good questions to ask the doctor?

Glenda,  can you give me some ideas on the type of research you did before surgery and tell me why you went to Boston.  Do you live there or did your research take you there? 

Thanks.

Cathy

Hi Cathy-

about my headaches- I had them before the surgery, and I continue to have them after the surgery, but they are probably due to two different things.  I have headaches like I used to have before the surgery - I blame my meds.  I wake up every day with a pounding headache in the back of my head ...  The other kind of headache is from the surgery - the left side of my head hurts around the incision - I think in the areas where the titanium screws and little plates are holding the bone together.  It sounds worse than what it is... mostly it's annoying compared to the other headache.

I went to Boston and wouldn't hesitate to go to the same neurosurgeon again in a heartbeat.  He does 1-2 surgeries/week like mine, so I was sure he was the "right" doctor.   Although I live in Colorado now, I used to live close to the Boston area, and I called my old neurologist for the referral, as I wanted to return to Boston.  I did a lot of research as you are doing, and you really do have to go to an Epilepsy Center that has a lot of experience.  Some important questions to ask the surgeon - how many surgeries/year, complications (and what kind), length of hospital stay, kind of incision, what is the follow-up care once released from hospital, how long to stay on meds after the surgery. 

I talked to several people that had the same surgery I did before I had it done, and that really, really helped a lot.

Feel free to email me!  [email protected] 

Glenda