Surgery Success? Recommended Drs in Wash DC area?

[spenceba]

My sister has had epilepsy for the last 5 years. We finally were able to get them under control with medication (depakote) and then my sister became pregnant and had to get off of it. Ever since she got off depakote and was pregnant/gave birth she has had 5 or 6 seizures (in the last year). Her neurologist recommended surgery and gave her a referral to the epilepsy center at VCU. We live in northern virginia so we are not that far from INOVA fairfax, University of MD, and Johns Hopkins. It took 6 months to get the apt at VCU.

I just wanted to know if anyone out there has had surgery for their epilepsy and if randomly you lived in Wash DC metro area and had a Dr. recommendation or know/heard anything about the center at VCU???

Thanks so much!

 

[RobinN]

Welcome Spenceba - I hope you can find some good info here to help your sister. She is dealing with this during a very stressful time of her life. Congratulations on your new niece or nephew.

Wow.... from one drug to surgery.. seems like quite a leap to me.
I am assuming from what you have written, that she lived most of her life without seizures. Meaning her body was in balance. Now for what ever reason her body is giving her a warning sign that something isn't right.

My daughter was fine for 14 yrs. Her hormones kicked in and WHAM she had her first two seizures. We climbed on the pharmaceutical merry go round and went for quite a wild ride. She has been off of meds since February, and has been doing Neurofeedback since March. Her Tonic Clonic seizures have been reduced from 5-6 /mo to less than 1 /mo. She also has made nutritional changes, and takes vitamin and mineral supplements that support brain health.

I suggest that you look into alternatives before surgery. There have been a few here that will tell you their positive stories, but if it can be controlled with other methods that would be my suggestion.

But of course that is my own opinion.

 

[skillefer]

Hi spenceba! Welcome to CWE. I used to have great control when I was on depakote too. I'm not a doctor...but I'd suggest trying other things first. I've regained control over my E and gone about 2 months now without seizures by adding supplements. It might be that your sister's seizures are being triggered by a change in her hormones since being pregnant. I'd suggest getting info on all your options first, before settling with surgery. Just my 2 cents. And again, welcome.

 

[Birdbomb]

Welcome spenceba

There are so many more medications available now than there were 10 years ago, even 5 years ago.

I STRONGLY suggest your sister find an Epileptologist ( a doctor who specialises in epilepsy/seizures) and try several of these other medications. Surgery, any surgey, should be used as a last resort, unless there is a definate tumor or malfomation, scar tissue that is correctable.

Stick around and lurk more...there's a lot of valuable information on this site.

 

[Bernard]

Hi spenceba, welcome to the forum. :hello:

There are several members here who have had the surgery and most report success (though a few have reported a resumption of seizure activity after a couple years have passed).

 

[spenceba]

thanks so much for your responses. i should have included more info in my posting about my sister. After having to get off depakote abruptly she was put on other meds (lipitrol i believe is one with some kepra thrown in) and they just have not been able to regulate her back to no seizures. we just worry so much about her driving and caring for her daughter if a seizure could come any time (even if its just one a month) but on the otherhand are scared of something like surgery when it sounds like it may not even stop her seizures.

 

[Loudmouth]

sstop her drrivign butt she ok with duaghter. no-on should be stooped from lookign after there own children just coos they has seisres.

 

[Cint]

Surgery.....

Hi spenceba and welcome,
Since your sister just had a baby, sounds like she is having hormonal issues, which can bring on seizures. Estrogen can lower the seizure threshold.
I would say it is TOO soon to seek out surgery if she has only tried 1 or 2 medications, there are many other meds available nowadays. Brain surgery is a HUGE step and you can't stop the after effects, once it is done! Plus, is she seeing an epileptologist? onder:
Can you offer to drive her and the baby places? She really shouldn't be driving and placing herself and the child in danger.

Cindy

 

[spenceba]

thanks so much, i have reccommended to my sister and my mom that she sees an epitologist and get a second opinion. she was told by the first surgeon she might have seizures anyway after the surgery so i really want her to be sure before going into this. thank you for the great advice everyone!

if anyone knows of a good epitiologist in the northern VA area please let me know!

 

[Nancy]

Hi - I've had surgery twice in St Louis at a GREAT university hospital and haven't had a seizure for well over a year. I'm a big fan of of the surgeries BUT I still agree with the people who say that surgery is the VERY LAST step. It's a GIANT step.

One thing you - your sister - can do is take all the very, very many tests and steps before deciding yes or no about the surgery. No signatures are necessary for a long time.

So very many people (Maybe most people. Maybe some people -- I don't know) have the surgery and then start having sz again. I haven't.

A fantastic National Hospital is very near you and I've forgotten the name/address. I'll go find it and be back. (I now forget my own phone number - I forget my address)

 

[Nancy]

I don't know if this would be any help but the place I was talking about is the National Institute of Health, HQ in Bethesda, Maryland.
Best wishes.

 

[andi]

HI everyone,
This is my first posting. I live in the northern VA area as well and haven't had much luck finding a neurologist I really like. I've gone through 3 so far and am looking for number four. I actually liked the first one but she was fired for incompetence. Oh well.

I stayed on my meds through both my pregnancies - the doctors said the harm to the babies from a seizure would be worse than any side effect from the medication. I take Tegretol. Both kids seem fine but who knows if the Tegretol had some effect that we won't see until later?

Anyway, I am going to check out Georgetown Medical Center and Johns Hopkins to see if they have any first rate Seizure specialists. I will post if I find anyone. I don't know if what I have can be considered epilepsy since I have seizures due to a traumatic brain injury. Anyone know if I qualify?

 

[Nancy]

andi - my seizures are/were due to the brain tumor I had and it's epilepsy. "Epilepsy" is simply a word that describes a seizure disorder. Even if I never (please God, make it never) have another seizure I'll still have epilepsy. My surgeon and my epi told me that and I already knew it .... I sure as heck didn't like it, but I knew it.

 

[andi]

To Spenceba and everyone else -
I did a little internet research regarding seizure surgery on the DC area. This web site won't let me post a link - I'm too new. But you can google Georgetown University Hospital and click until you find the Neurology unit that specializes in Epilepsy and seizures. They claim to have a new, very successful surgery for epileptics with seizures not controlled by medication. They also look like a good place to get an outpatient neurologist. I will be looking into them for myself and also for my husband who suffers from migraines.

Andi

 

[andi]

HI - Yeah it's me again. I am very interested in Skillefer's mention of supplements. Are they natural supplements? I am always looking for natural solutions to medical issues. Please let me know what you are taking and how you found out about it/them.
Thanks,
Andi

 

[Mandy]

Hi. I haven't had surgery yet, but i'm scheduled to have it on Oct 2 at Thomas Jefferson hospital in Pa. I feel very comfortable with my neurologist and surgeon. They had me stay at the hospital for 1 week a couple months ago, to study and research to see if i was a candidate. I was hooked up to an EEG monitor the whole week,had a MRI, Pet-scan,and was on camara. That was the first time i learned i was having more than i realized. I had about 5-6 a day. Then what they do is all the neurologists and surgeons from that hospital and other top hospitals in pa meet and make a decision. During the surgery,they have 2 surgeons in the room,because one may see something the other doesn't. They do about 50-60 surgeries a year and have a very high success rate. If you go on the Thomas Jefferson Hospital website, you can learn alot about the hospital,dr's etc. It is the first hospital that i was at that i wasn't in a bad mood about being there. The care is good,the food is good. Take care and Good luck! Mandy

 

[Nancy]

Hi Mandy -- Giant step!! A Great Big Giant Step. I have had such a fantastic blessing with that step. I hope and pray that you get an even better one.

Can I ask what section of your brain they will be operating on? They worked on the "easy" section of my left temporal lobe. You can search around this site and even see a photo of me - lol - YUK.
Because it was that section my hospital insisted on the neuropsych testing too.

I am happy for you and hope you feel secure and ready to go.

 

[BuckeyeFan]

:cheers:

Welcome to CWE for both Andi and Spenceba.

Spenceba - Please continue to research here (or elsewhere) for your sister. She will need all your support in the future. Take a good look around here before she makes that big leap to surgery. Her sz rate does not seem to indicate that yet. I hope she tries all other options first.

Also, please make sure she is extremely careful driving or better yet, not driving. Once seizures are well controlled, driving can be OK. However, it not controlled, it is VERY dangerous.


Andi - With your seizure rate and all the tests you have had, I can understand your choice. You will have all of our support here and please keep us updated.

I guess I consider myself one of the lucky ones. Though I have had E for 27 years (since age 20), I am pretty well controlled now. I still have mild auras/partial seizures, they have not progressed into a tonic/clonic for almost 5 years.

God Bless you both!

:rock:

BuckeyeFan

 

[PhylisFeinerJohnson]

Mandy, could you please tell me the names of your neurologist and neurosurgeon and where they are located?

 

[CQ:)]

Hi spenceba.

You will find that there are some great people on this forum who are always happy to answer questions, help you with information or even just be there for when you want to vent.

I think everyone's epilepsy is different & we all have our own story to tell.

From what I can understand you can be a candidate for surgery if you have tried more then 3 anti epilepsy meds & you still take seizures.

I have left side temperol lobe epilepsy & scarring on the left side of my brain. I mainly take partial seizures but the anti epilepsy meds haven't helped control the seizures (in the last 8 years I have tried 5 meds & currently take 3 different meds to try to control the seizures).

Because the meds aren't controlling my seizures & of the scarring on my brain I have been considered to be a good candidate for surgery. I saw an epitiologist in June who after going through my MRIs & my complete history of epilepsy confirmed that I am a good candidate for surgery.

I am due to go & have the 1st set of tests (PET scan, SPECT scan, MRI) in September. In November I am going to be in hospital for 2 weeks for video EEG monitoring.

The tests that are done will help them determine where in the brain the seizures start & if it is safe to do the surgery.

I was told that there is about an 80% chance that the surgery will work but there is also that chance that the seizures will come back or the surgery won't stop the seizures at all.