Considering brain surgery...any feedback?

[Singout]

I've had epilepsy all my life, which has been very mild--not really interfering with anything except not being able to get a driver's license and needing to be on meds. However, the seizures have been increasing in frequency (not really severity) for the last few years.

I've had mild-to-moderate ME for five years, after having a much milder condition for the previous five years: I'm unable to work, walk more than a few blocks, and am often housebound.

Last year my new neurologist sent me to the hospital for 11 days for monitoring to confirm that I actually have epilepsy. What the hospital does is assess people to determine if they are candidates for brain surgery. I was told in Sept that I can have my left temporal lobe removed, which will probably decrease my seizures--the doc says they will increase as time goes on, affecting my memory, etc. I was briefly very enthusiastic about this, but then got cold feet. I have no ideas what kind of crash brain surgery would induce, or if I would ever recover from it. (11 days of lying in the hospital having my food brought to me--but being taken off my meds for over 24 hours--crashed me for a week when I got home.) The doc and surgeon know nothing about ME.

Any thoughts? Thank you!

 

[gbells]

https://mayfieldclinic.com/pe-epilepsysurg.htm

• Temporal lobectomy is the most common type of surgery for people with temporal lobe epilepsy. It removes a part of the anterior temporal lobe along with the amygdala and hippocampus. A temporal lobectomy leads to a significant reduction or complete seizure control about 70% to 80% of the time [4, 5]. However, memory and language can be affected if this procedure is performed on the dominant hemisphere.

According to this article it is a real procedure but you should make sure it isn't done on your dominant hemisphere.

You may want to get a second opinion.

 

[Shoshana]

@Singout That sounds like a rough situation.

2nd and 3rd opinions from experts, sound good to me. That is a big and serious decision. I would seek additional medical expert input .
On both, the doctors assessment that your seizures will increase without it, AND, on the outcomes of that type of surgery.

 

[iwillwin1day]

I am totally against brain surgery for epilepsy. You will lose more then what you will gain. And what you will loose will be permanent. Success rate of brain surgery of epilepsy is very low.
So do your research before you go ahead.

 

[andyguitar]

It's a huge decision to have to make. If was me @Singout I would not have surgery. There might be an alternative to it in a few years. A treatment that is safer and more effective than surgery.

 

[Wishful]

There might be an alternative to it in a few years. A treatment that is safer and more effective than surgery.

Yes, it's not just a decision between surgery or not surgery, it's a balance between 'how quickly will my quality of life decrease if I don't get surgery now?' and 'how quickly will better options become available'. I don't know much about epilepsy, but you should ask if there are any treatments for holding off worsening of symptoms or permanent deterioration a bit longer.

I'm pretty sure that reversal of the surgery isn't going to become available in your lifetime. It sounds like you still have time to do proper research into options and get multiple opinions.

 

[Sidny]

@Singout Removing such a large part of the brain to stop seizures seems like too primitive of a solution for me to even consider it a solution.

Have you given CBD any thought? Theres a high CBD strain called charlottes web that was named after the young girl it helped cure epilepsy in. It cured her apparently “intractable” seizures after she failed to respond to any pharmaceutical approaches.

 

[sb4]

Perhaps you have already tried this but I will ask anyway, have you tried a ketogenic diet. It is used in kids with epilepsy with apparently good success.

 

[gbells]

Actually this procedure looks like it is the first surgical step in treating epilepsy. If I were a patient with severe, uncontrolled seizures and it was done on the nondominant side, with a 80% success rate I would do it. There are more procedures that could be tried later if it failed. Best of luck.

 

[Shoshana]

To me personally, it seems like a last resort.
I would try everything else first. Including waiting to see how things go. I would myself prefer to wait and see how things go with my condition severity and with additional options that might be available, that I hadn't tried yet, or that I hadn't yet learned about, or that might be discovered in future. And with any additional info I could gather and obtain.

Too many uncertainties for me, and high risk, that surgery seems to me, in my own personal view, for myself,
but I do support that each person should make their own decision based on all of their own individual factors.
And I accept fully, that it might be the right decision/option for someone else, or even for me, at some different time.

 

[Rebeccare]

One question I would ask is: has the increased frequency of your seizures significantly impacted your quality of life? If not, then it seems like there would be little benefit to surgery. Just because you're a candidate for the surgery doesn't mean that you should get it--the benefits should outweigh any possible risks.

There might be an alternative to it in a few years. A treatment that is safer and more effective than surgery.

I very strongly agree with this. There has been some promising recent research involving compounds in marijuana--this is something that doctors haven't been able to explore thoroughly due to the drug's legal status, but I think that more research will emerge in this area soon.

2nd and 3rd opinions from experts, sound good to me.

Always wise advice!

have you tried a ketogenic diet

In most cases I dismiss the ketogenic diet as a fad. But it actually was developed for people with epilepsy, so this is one case where it's not a bad idea to try! However, in order for it to be effective for people with epilepsy it must be followed extremely strictly (it's a good idea to work with a nutritionist). It's also worth noting that if the diet does help (it doesn't help in all cases) you wouldn't necessarily see results right away.

 

[raghav]

@Singout I have been suffering from TLE for the past 40 years. The MRI shows I have left hippocampal sclerosis. There is a 20% shrinkage in left hippocampal volume compared to the right one. I am on Levetiracetam ( 500 mg x 2) and Clonazepam ( 0.5 mg x 2) What epilepsy medication are you on. If you are on some other medication then you must try levetiracetam as this is the recommended AED for temporal lobe epilepsy.

I am left brain dominant so surgery is ruled out unless the epilepsy becomes uncontrollable. My neurologist says if the surgery is done then I will need external support to live (Like a personal attendant for life).

I would recommend that you try Bacopa Monnieri 250 mg once at night and see how it helps.

 

[raghav]

@Singout Please go through this research paper and contact Dr. Avinash Shankar whose email id is at the bottom. He responds promptly. This research was conducted combining Sodium Valproate and an ayurvedic formulation specifically for refractory epilepsy. Dr. Shankar is a neurologist (FRCP). Talk to him and send him your EEG and MRI and other reports.

https://www.omicsonline.org/open-ac...or-epileptics-2167-1206.1000134.php?aid=18975
To evaluate the clinical efficacy of an indigenous composite as an adjuvant with widely prescribed antiepileptic monotherapy and study the status of old epileptic cases, a mass propaganda to create awareness for epilepsy patient in a multi centre epilepsy treatment camp was organized and 4568 cases of grand mal epilepsy were selected, duly interrogated (both patient and their parent), evaluated, investigated ,treated and follow-up observation was given by Centre For Indigenous Medicine & Research, RA. Hospital & Research Centre and Indian epilepsy forum.Patients of convulsive disorder with associated other systemic diseases, patients of status epileptics and patients unable to follow the therapeutic and follow up schedule were excluded from the study.Patient’s non responsive to major therapeutics are termed resistant epileptics.All the selected patients were investigated for CT scan, EEG, Hematological index and biochemical parameters to evaluate safety profile of the prescribed drug.Irrespective of the disease duration, age of the patient, status of illness and previous therapeutics, all patients were given:• Sodium valproate in recommended dose at 8 hourly schedule, strictly. (We practiced/administered doses at 6 AM, 2 PM and 10 PM)• Indigenous composite containing (equal portions of )- Acorus calamus (rhizome)- Nardostachys jatamanshi (root)- Convolvulus pluricaulis- Herpestis monneiri (leaf)- Crotalaria verrucosa (seed)

Dose: For adult: 1 cap of 500mg daily, while in children a 1/8th decoction 5 ml in >5 yrs; <5 yrs 2.5 ml; <1 year 1.25 ml every 12 hours.Patients were examined and data were recorded in a follow up card.Initially, weekly for 1st month, every 15th day for next 6 months and monthly for rest of the period during the therapy and every 3 month for 2 yrs post therapy follow up during the follow up, patients were evaluated for-• incidence of attack of seizure• frequency of seizure• duration of seizure• severity of seizure• any untoward effect• physical and mental statusTo ensure 100% follow up with an instruction to the parent of the patient to enter the requisite information and observation in the follow up card.To assess safety profile, patients were re-examined for hemato, hepato and renal status.Therapeutic response was adjudged, analyzed and graded as per following index (Table 1).Observations• 4658 Patients of age range 5-40 years were selected for the present study. Among them 58% (2680) were male and rest female; 40.57% of all patients were of age group 10-20 years (Figure 1 and Table 2).• Whereas disease status wise, 55.38% were recently detected, 38% were old cases of epilepsy without treatment, among them 21.9% patients were suffering from the past 1 year and others were 1-5 years old. Remaining 6.62% of patients were suffering from recurrent episodes of epilepsy in spite of a therapeutic regime (Figure 2 and Tables 3 and 4).• As per clinical presentation 13% patients were presenting with convulsion, unconsciousness, frothing and autonomic dysfunction while old resistant cases (21%) were presenting with associated physical and mental debility (Table 5).• Among selected patients 42.01% were with hemoglobin less or equal to 10gm%, 1.05% with altered hepatic and 1.24% with altered renal functions (Table 6).• All newly detected cases, 96.2% of old cases and 67% of chronic resistant cases had complete cessation of epileptic attack from beginning of therapy while 23% of old cases failed to respond within 48 hours but slowly severity, frequency and duration of convulsion regressed markedly. No patient exhibited autonomic dysfunction.• Overall 99.76% patients revealed improved mental status in terms of psychosocial behavior and intelligence (mental ability) while 0.23% (11 cases) or 3.53% of resistant cases showed no change in their mental status but all had improved physical status.• No post therapy recurrence of seizure was reported during 2 years follow-up observation• All newly detected cases, 96.20% of old patients and 67.52% of resistant cases had grade I clinical response while 3.8% of old and 21.8% of resistant cases had grade II response and 4.18% of resistant cases failed to respond.• The abnormal hemato, hepato and renal parameters of some old patients with refractory epilepsy were sustained or improved but not worsened (Table 7).





Dr. AvinashShankar
Chairman, National Institute of Health & Research
(RA. Hospital & Research Centre)
Warisaliganj (Nawada), Bihar, 805130 India
E-mail: dravinashshankar@gmail.com

 

[taniaaust1]

New research takes years to come out and if you issue is going to get worst without the surgery, I'd be certainly thinking about it.

The mother of a friend of mine had a seizure which has left her completely unable to look after herself at all as the seizure damaged her brain.. it actually turned her overnight into like an Alzheimer person and hence then she had to be put into full time care and they have said she is not going to recover from that seizure. So dont let fear of surgery stop you from very carefully trying to weigh the pros of it and the possible cons of not having it.

 

[PatJ]

seizures

There are many options to consider before something as serious as surgery. Here is some information I've collected:

Lithium orotate: https://selfhacked.com/2014/02/09/the-benefits-of-lithium/

*Taurine*
Lowering seizure potential, excitotoxicity, from: https://www.lifeextension.com/magazine/2013/6/the-forgotten-longevity-benefits-of-taurine/page-01
While there are many types and many causes of epilepsy (seizures), a disruption in the function of excitable brain tissue underlies all of them. One of taurine’s major roles in mammalian biology is the regulation of such excitable tissues, making taurine of natural interest to scientists and clinicians who study epilepsy.

Animal studies reveal that taurine depletion makes seizures more likely, while supplementation with taurine is capable of preventing seizures induced by a number of drugs and chemical toxins. Taurine appears to work by increasing the levels of glutamic acid decarboxylase (GAD), the enzyme responsible for the production of the neurotransmitter GABA, as well as by binding to so-called GABA receptors in brain cells, calming them and reducing their likelihood of participating in the random, uncoordinated electrical firing that produces an epileptic seizure.

*Frankincense*
from 'Lyme Brain': Causes and Solutions by Nicola McFadzean Ducharme, ND:
I have been utilizing essential oils more and more with my patients, and seeing great results. Essential oils, being lipid-soluble, can cross the blood–brain barrier easily and have good penetration into cells overall.

There are a number of constituents that make particular oils good for neurological symptoms. Some of the key ones are sesquiterpenes, because of how easily they cross the blood–brain barrier. These help to oxygenate the tissues, reduce inflammation, and calm the nervous system. They can support the endocrine system and have analgesic effects. Some oils that are high in sesquiterpenes are cedarwood, frankincense, patchouli, vetiver, ginger, ylang-ylang, myrrh, Helichrysum, Melissa, and black pepper.

Frankincense in my view is the very best essential oil for Lyme brain. So long as the highest-quality oils are used, frankincense can safely be taken internally. I have patients either put it directly under the tongue, or swallow it as a capsule or in some cases on the roof of the mouth (preferably toward the back of the mouth at the soft palate). Frankincense can also be put on the soles of the feet; the soles are a good entry point for essential oils, as the skin is quite thin, and yet the pores are the largest there of anywhere on the body, so systemic absorption is rapid and effective. Yet others apply it on the temples or the base of the skull.

Patients love frankincense – it helps with brain fog, focus/concentration, and emotional balance. I have a handful of patients who have seizurelike activity that is now controlled with daily use of frankincense. I have many more who report that their brains are so much clearer since using frankincense.

*Magnesium deficiency*
Info on seizures being related to magnesium deficiency:
http://www.doctoryourself.com/epilepsy.html

*Magnesium and iodine*
From: http://www.curezone.org/faq/q.asp?a=13,281,2962&q=1235
Try transdermal [magnesium] through the skin using 5% lugols and also use organic coconut oil both orally and topically for the seizures, that is how i control mine!
...

I had seizures for 49 years. I had Petite Mal seizures begining as a young child which were poorly controlled, and at 16 years also started having Grand Mal and temporal lobe convulsions. I have not had any drugs since Oct 3, 2007 and have not has any seizures either.

Magnesium is very difficult to absorb and digestive issues cause even less to be absorbed. What kind of magnesium is used is of great importance if one is trying to increase magnesium levels.

*Dr. Christopher's methods*
https://www.herballegacy.com/Epilepsy.html
https://www.herballegacy.com/Ear_Nerve.html
https://www.vitacost.com/christophers-ear-and-nerve-formula-2-fl-oz

*Earthclinic*
https://earthclinic.com/ailments/epilepsy-home-remedies/
https://ted.earthclinic.com/cures/epilepsy.html

 

[MonkeyMan]

I would recommend that you try Bacopa Monnieri 250 mg once at night and see how it helps.

@raghav I'm considering Bacopa for my ME/CFS. What effect(s) have you noticed from it?
Thanks.

 

[raghav]

@MonkeyMan I have been using Bacopa (Himalaya brand) for the past 7 years. It has helped in reducing mental fatigue and also increased ability to multitask. It also reduced anxiety. It also helps in deep sleep.

 

[MonkeyMan]

@MonkeyMan I have been using Bacopa (Himalaya brand) for the past 7 years. It has helped in reducing mental fatigue and also increased ability to multitask. It also reduced anxiety. It also helps in deep sleep.

Thanks Raghav! I will try it.

 

[raghav]

I have ordered the ayurvedic formula (syrup form) from the above institute. They say it can be combined with any AED and it will work. They say it stops seizures from the first day itself. (Keeping fingers crossed). I will post my review once the medicine arrives.

 

[Singout]

Thanks, everyone. There's lots of good info and insight here for me to process. I'll look into some of the links and suggestions.