Mayo Clinic Connect
has anyone ever had a sezuire where it can be a number of different sezuires?
Hello. I am new to this. I recently had an appointment with the Mayo Clinic in Rochester for the Epilepsy I have experience for the last 15 years. I will say that everyone was wonderful and professional. I will say that over the last several years I have been on many different medications and can not tolerate the side effects. The medications I am currently taking – Low dose of Topiramate, Vimpat, and was tried on Briviact – really has me sick. I am dizzy, off balanced, blurred vision and just feel bad. Unfortunately, when my neurologist try to “wean” me off any of the medications, I will have auras or an absent seizure. I feel stuck at this point.
At the Mayo Clinic, they are thinking I may be a candidate for laser ablation. There is a 50-50 chance that it may not work and I will need full surgery. Great odds right???? There is also the chance of memory loss etc. It is scary. I need to work since I am single with a limited support system.
At this point, I feel I have no choice and I am willing to go for it.
Has anyone had the surgery and can share more about it?
Liked by Colleen Young, Connect Director, Dawn, Alumna Mentor
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Welcome to Connect, @stayfree. While it is scary, you sound encouraged that you have an option.
You might wish to watch this webinar on Adult Epilepsy: Common Clinical Issues and New Therapies http://mayocl.in/29ci8kL featuring Mayo Clinic neurologists Jeffrey Britton, MD, Gregory Cascino, MD, Jerry Shih, MD, and Joseph Sirven, MD. Dr. Cascino speaks last about new surgical therapies such as laser thermoablation.
When will you find out if you are a candidate for the surgery? How is it decided?
You might also wish to listen to this talk by Nicholas Wetjen, M.D., a Mayo Clinic pediatric neurosurgeon https://connect.mayoclinic.org/discussion/what-is-epilepsy-surgery/ He talks about adult and pediatric surgical options.
@dawn_giacabazi and @matermiracle will you join me in welcoming Stayfree?
Liked by Dawn, Alumna Mentor
Welcome @stayfree. I to have epilepsy. I am blessed to have great seizure control accept a minor hiccup couple weeks ago.
I absolutely love Dr Jeffrey Britton!!! We finally reach a great control after alittle over a week stay in the epilepsy clinic. They took me off all the current meds, at that time and tried to re create a seizure which helped us get on the right medication for my types of seizures. I now only take 1 medication for control.
Have they been able to diagnose the cause of your seizures?
Prayers for control
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
Personally there have been unbelievably so many different forms of Seizures experienced maybe some could be Grand Mal or Pettie Mal whilst presently there are others which are called Non-Epileptic Seizures along and surrounding unbelievable amounts regularly throughout life.
I have been told by several doctors that my seizures are “complex Petti Mal”.
One doctor even told me the classification of seizures often changes.
I wrote on a different sites,Mayo clinic seems like a great place,with me i have had grand mals since i was 5 or 6 now 63,most of my life time my memory about my seizure is gone,like my mind doesnt want the memory..Had a good run ondilantin and penytoin,about 30 years.didnt stop them but cut down amount so i could keep job get a home and have 3 children,plus was able to hold onto job ,went 4 years free of seizures but in meantime i had a case of copd that went seriousand had lung cancer,in august my dilantin started to go toxic 3 times in a year had to change meds,first keppra 6 grand mals in6 weeks.even at max amount,now on vimpat..After each seizure my breathing condition gets worse.need oxyjen 24/7 last 6 wweeks now.Read where respitory along with grand mals may be tied to other troubles.Right now going to a neurologist in Deleware to try to find a new med for grand mals,Seems like its hard getting much solid info about what i should exspect withmy copd getting extreme severe 4 times on abreathing macchine at a hospital ,on oxyjen 24/7,had cancer,lung, in 2014 now in remission,also sleep apnea.Last copd exasperation in febuary was for 24 days,3days on a ventilator.last grand mal in sept.5 days,most hospitals limited what they can do with a patient with epilepsy.Thing i noticeis after a seizure my lungs always seem weaker and dont return to what they were,since there bad to start with ,next time i awake copds that much worse,starting to worry about waking up..
Liked by Colleen Young, Connect Director
Hello @matermiracle, welcome to Connect!!
I have a few types of seizures, Partial Complex – Frontal lobe , General Tonic Clonic which have always start with an aura.
Is there a particular kind you or a loved one has that poses this question?
I would like to suggest getting an EEG test done. Doctors didn’t discover anything with me until doing this test.
My son has had EEGs and the results came back that his brain waves on the left frontal lobe are much slower than the right side. He has an mri scheduled in January. Tonight he complained of body pain and he was on the floor with his eyes closed and had Saliva coming out of his mouth. He was able to be moved to the couch but he still had his eyes closed, arms reaching out for me calling my name. When the nurse came back in the house he was standing in the living room as if nothing happened. She gave him Benadryl and put him back to bed. This lasted about 1 hour 15 mins. Could that of been a seizure? ( he’s in a residential facility for behavioral issues)
How frightening for you and your son. From my experience there are so many different types of seizures and auras that it is impossible to try to pin point without a collaboration approach. I would definitely talk with his doctor. You mentioned he had some testing done. Has he been diagnosed with seizures or did they mention it’s possible?
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