Hello, open to opinions: Extensive record /neuro

Welcome @pmracc33186, I saw your comments in the Key's to a Successful Doctor's Appointment (https://connect.mayoclinic.org/comment/1054031/) and think it's great to be a strong advocate for your healthcare. I wouldn't give up on Mayo as it can be difficult to get appointments just due to the availability and number of patients looking to make an appointment. I have no experience with TLE but I think Leonard @jakedduck1 may have some experience or suggestions. Mayo Clinic also has some information on Epilepsy care that may offer some suggestions - https://www.mayoclinic.org/diseases-conditions/epilepsy/care-at-mayo-clinic/mac-20350102.

Another option you might want to investigate is the Mayo Clinic Care Network - https://www.mayoclinic.org/about-mayo-clinic/care-network. The Mayo Clinic Care Network is a network of member hospitals (https://www.mayoclinic.org/about-mayo-clinic/care-network/members)
The Mayo Clinic Care Network helps keep care local by providing guidance and answers to many questions that might otherwise require a referral to a specialist. In many cases, this spares patients the expense and inconvenience of additional appointments and unnecessary travel. If specialty care is needed, patients can be seen by local providers or referred to Mayo Clinic.

Thanks 🙏

Hello,
I have an extensive neuro medical history, including imaging and everything you could imagine for epilepsy. I also have an RNS, which I could grant access to. Do you think that could help? I have a call on Wednesday, which I guess is some sort of intake. I believe I have a step ahead as it relates to starting a case from scratch,

Thanks

Hi @pmracc33186, I merged your 2 discussions about getting an appointment at Mayo Clinic in neurology into one discussion so members could see more of your story.

I'm glad that you now have a call this Wednesday with an intake scheduler/coordinator to discuss options. They will let you know how you can share your medical history, records, imaging securely for Mayo Clinic specialists to review.

@pmracc33186
I’m not one to promote epilepsy surgery but since the seizure focus is known, Have you considered surgery? They say temporal lobe surgery is the most successful. I have frontal lobe couple epilepsy and declined surgery several times. I believe there's always some type of complications related to epilepsy surgery. @santosha has used alternative treatments and reduced her intractable seizures significantly. I'm not very familiar with Chinese medicine treatments like Gastrodia elata but there may be something to it.
Have you tried Epidiolex? Since the Depakote helped to some degree why was it discontinued?
Fingers crossed you get into the monitoring unit.
Best of luck,
Jake

Epidiolex didn’t work at all other than increasing liver enzymes .
I’m left dominant with left Foci , so far I’m in the no.

@piero
I don't blame you.

Is one of those no turn back decisions . I have an RNS I’m cool with getting devices inside 😆no pieces out . At least not yet .

@pmracc33186
Hi Piero
I am sad to hear that Epidiolex did not bring you benefits. I was intractable with AEDs and my doctor has put me on pure CBD (the same as Epidiolex; I am out of the States), controlling about a good part of my seizures, but still having about 13 seizures a month. I do not know if full-spectrum medical cannabis is yet approved in the States. Perhaps a medical cannabis with very low indexes of THC could be helpful to you. I have not taken THC as I am a person very sensitive to medications. Even higher dosages of CBD I could not tolerate, taking my limit which is 0,7 ml of 200 mg of pure CBD every
The rest of the seizures I got were mostly controlled through diets, yoga, exercising and trigger management. By learning well my triggers, I could avoid many of them, being especially careful with certain situations. As I mentioned in another post, I started my change in my diet by taking out gluten (I had 13 seizures a month and went down to 2 or 3 seizures a month), which has reduced my remaining seizures by 60%. I then made other diet changes, little by little, such as taking out my carbohydrates from my diet in my evenings; avoiding eating processed foods; starting my lunch always with a colorful salad and then vegetables, followed by a protein and lastly by a carbohydrate of a long chain (sweet potato, integral rice and others); stopping to drink orange and other juices (those contain a high level of fructose); reducing sweets and eating more fruit after lunch and among other things which should be best when oriented by a doctor. Dr. David Perlmutter ( a respected neurologist and neuroscientist) speaks much about the importance of health. Have a look at this newsletter and many videos. Exercising and yoga have also helped me much to keep well and stay calmer.
I am not against surgery, but this in my opinion should be the last resource to be used.
Wishing you better winds on your side. Keep faith!
All the best
Chris (@santosha)
PS: I have sent you a private message