Pictures of Jeremy after Anterior temporal lobectomy

[ccnlmarisol]

My boyfriend was diagnosed with brain tumors and epilepsy in his 20’s. I am the only person he has shared this with. Though his family is aware of the epilepsy, they are not of the tumors. He was recommended this surgery, but is very afraid of the risks and complications. I am very scared too, but his seizures are becoming more and more frequent. How much do you recommend this surgery? And how painful is it?

[mccoyjeremy]

@ccnlmarisol I highly recommend this surgery, because it changed my life 4 the better. 2 this date I'm seizure free coming up on my 3yr anniversary this coming May 30th. I would highly recommend doing ur research b4 committing 2 have the surgery because that helped me a lot. The pain is nothing like the agony of never knowing when that next episode will b. There's ways 2 stop pain, but the fear of never knowing when the next one will hit was mind numbing no pun intended. God Bless

[sfgiants20]

Im happy for you dude I was born with elipesy went through a bunch of doctors and medications hoping eventually seizures would go away and they didnt. When I was 16 I met a doctor who realized nothing was working and told me about brain surgery. Went through a week of tests and they caught what part of my brain caused the seizues so I was a canadite for surgey. Had the surgery and 7 years later Im 22 years old and havnt had any seizures since.

[nsmiley77]

I'm having an Anterior temporal Lobecomy Septh 13 at the Mayo Hospital in Phoenix. I'm pretty nervous, but ready to get it done at the same time. I've been battling complex partial seizures since 1998. I'm glad to hear about your success, and thanks for putting your pictures up here.

[shelby0410]

my little girl is 4 and has been put forward for a right temporial lobe surgery im so scared and dont no wat to do for the better she fits quite regulary but is not bein affected as of yet shes reachin all her milestones and doing well ur story is an insperation but i just dont no wat to do for the best i love my daughter fits and all but wat would she want in yrs to come ?

[mccoyjeremy]

ur daughters neurologist is the best person 2 ask ur concerns and fears to, & I would go 2 multiple doctors b4 making a decision b4 makin a finally decision I went to 6 different neurologist and 3 different neurosurgeons and got their opinions and then I did my own research to find the best doctor 4 the operation. The longer you wait the more damage that can b done to the brain, but also allows the brain to compensate for the damage thats been done. If you have any other questions don't hesiate

[mccoyjeremy]

Just wanted to post an update 4 my followers, I'm now coming upon my 2 yr anniversary this coming May of being seizure free and this January will b my 1st yr with absolutely no medications. I'm feeling great and currently n college obtaining my Prereqs 4 a PA Program @ MCG. Thank u 4 all the comments, and I highly recommend if u r living a life w/ seizures b ur own advocate & speak 2 ur Dr. 2 c if u r a candidate 4 the surgery, it is a life changer.

[MsPhoebe1998]

Good luck with that. It is great to get back in school after this surgery. Decreasing my Keppra now. I am in the Nurse Practitioner program with only 4 more courses and my Master's paper to write left. I hope to work in a good patient oriented Comprehensive Epilesy Center some too as well as do Primary Care. Did Dr smith do your surgery? I wish you well.

[mccoyjeremy]

@MsPhoebe1998 No Dr. Mark Lee did my surgery @ MCG, he was rated the #1 brain surgeon in the nation in 2008, he moved 9 months after my surgery to Dell's Children's Hospital in Austin, TX. Dr S. Macomson took over when Dr. Lee left in late 2008

[MsPhoebe1998]

I had the same surgery at MCG 11 years ago. I still take one med, Keppra, but am decreasing it and have not lost consciousness since 1998. I have made great progress once over the severe depression that occured after surgery. I finished my degree and now am in graduate school. Dr. Smith is an artist of a neurosurgeon. I weill be forever grateful to him and the great staff on the Epilepsy team at MCG.

[hoochis]

i just had a temporal lobectomy on the left temporal lobe in august 09', my scar looks just like yours. you had depression after the surgery?

[mccoyjeremy]

Glad to hear from you, the only side effects from the surgery was Aseptic meningitis from the area of the brain being removed, & the cerebral fluid irritating the lining of brain tissue or meninges, which was 2 weeks after the surgery itself, then once the Cerebral fluid equaled out I was doing great. Then bout my 9th month i ran into a few memory problems but found out it was due to still being on original dosage of meds. I'm now seizure free 4 2yrs this coming May & off meds 4 a yr now

[mccoyjeremy]

Other then that @ right after the surgery and still being on the meds that i was on b4 the surgery, and needing to come off of them, I did great with the whole surgery, didn't loose any motor skills or functions, if its alright do you mind me asking where u had the surgery performed. Look to talk with u again.

[hoochis]

nice. i'm still on some medicine for anxiety i got after the surgery, but my seizure medication is the same. i haven't had any other problems yet though.

[anthonyS10]

can someone please tell me how much their surgery had cost? I've had seizures since september of 2008. doctors can't figure out why, but i have them. I have Simple Partial Epilepsy (i think that's what it's called). I don't shake or contort what so ever. I'm fully conscious, aware and have a clear memory. I'm suppose to wait 2 years to see if my seizures go away from my meds since i have a mild case. I can't afford Keppra so I gotta take the generic kind. My head hurts day in, day out. Hate it!

[mccoyjeremy]

Will it reallly depends on if you have health insurance or Medicaid. I had my surgery at Medical College of GA and Disability Medicaid covered mine 100% including all pre-Op visits, presurgical Evaluations, epitologist visits, and testing. The Surgery itself was billed to Medicaid @ about $30,000.00 but medicaid only paid $25,000.00 for the surgery itself that included Drs Bill and hospital bill.

[mccoyjeremy]

Also if you can't afford UCBs Keppra they have a

Keppra Patient Assistance Program that you and your doctor can apply to, and they will send out a 6month supply @ a time to your doctor if you qualify for the program. Speak to your Dr because all it takes is you and your doctor to fill out a piece of paper send it in with a banking statement of urs and it takes about 2-3 months to hear back.

[pletcgm]

I had the surgery done at Vanderbilt University. It is a life changing surgery to say the least!

[pletcgm]

I have almost the same scar down the left side of my head. I had a left temporal lobectomy in 1994 and have been seizure and drug free!

[mccoyjeremy]

Sweet, it is a life changing surgery for the better. If you don't mind me asking where'd you have the surgery done if you don't mind me asking. Glad to know someone else isn't living the life of seizures anymore, if only everyone was a candidate for the surgery it would be awesome. God Bless you

[skwinkle79]

amazing but kinda brutal surgery.

[guycotten29]

Hey its my people! im due for a second lobectomy this winter its good to hear the postive feed back im scared shtless

[mccoyjeremy]

Hey no need to be scared, have faith in your doctors. Keep us updated on your progress and how you're doing. I'll be checking on you from time to time. I'll be praying for you. God Bless

[szrgirl]

I also had a Right Temporal Lobectomy. Two, actually. I'm glad yours has been so successful! Are you still seizure free?

After my first surgery (May 07-they removed only the Hippocampus and part of the Amygdala.) My seizures returned with a vengence, so we did a second (Full Anterior Temporal Lobe Resection)in Dec 07. Mine were at Emory University Hospital in Atlanta. Surgeries plus 3 drugs and I'm now seizure free!!! :-D I like how your post is just pics no music. Makes it real. Not hokey.

[mccoyjeremy]

I am 7 months & 3 days seizure free since the surgery, which has been a blessing. I was having anywhere from 10-15 seizures daily before the surgery from tonic clonic to complex partial seizures. I'm still on meds now but start taperin in Feb. I wish you the best of luck. I went through Emory, UCLA, NYU, and didn't like any of the Doctors, so I did research on the internet & found the top rated hospital for Epilepsy & brain surgery in the Nation was located at MCG. Happy New Year, God Bless

[szrgirl]

I am very pleased with my surgeon at Emory (Dr. Gross). My only complaint with Emory was the nurse in ICU after my second surgery. I pressed the nurse button for nearly an hour (#10 pain!) and finally SCREAMED for her. She came in, casually said 'oh, that button doesn't work' and handed me a new nurse call button. Then she ignored the button when I pressed it later.

[MsPhoebe1998]

I too started at Emory as I am from Atlanta. I had such a horrible VEEG there!! EMU staff let me go into and stay in status for a "working day" per my doc. The staff did not recognize complex partial status according to him. That is the main seizure type they should see in an EMU! There is no telling the damage that did as it only takes 30 min of sz activity to cause irreversible brain damage. We are lab rats at Emory! Thank God I got a 2nd opinion at MCG! I have my chart.

[mccoyjeremy]

I 2 am from the north side of Atlanta, I spent what seemed like my whole life dealing w/ the Doctors of atlanta, going from Emory, Wellstar, Children's HC, & others that i decided to do my research & find the # 1 Neuro-Surgeon, being Dr Mark Lee @ MCG and was glad that I did that. After being told mulitple times that I was faking my seizures, I decided to prove them wrong, went n2 the EMU @ MCG w/ Dr Murro & was told that I was the greatest candidate 4 the full lobectomy. Felt great knowin.

[FreebirdVA]

WoW....I am so happy for you. You have been through alot! I too have had my temporal lobe, Amigdala, and hypochampus removed all at once...If I had it to do again, I would had requested a bullet instead of a surgeon. It's a life changer...especially if you had a life before! God's Best....

[KoNP69]

They removed your amygdala and your hippocampus all at once, completely? I've gotta ask you: how's your memory, emotional range and spatiotemporal recognition, considering they removed the two things that govern those.

[mccoyjeremy]

They did a Full Anterior Temporal Lobe Lobectomy (temporal lobe, followed by the amygdala and hippocampus) I haven't had any side effects from the surgery itself, reporting no seizures nor auras to date. Only thing I ran into was memory problems from still being on my Regular dose of Anticonvulsant Drugs from before the surgery, so we started to tapper my meds slowly, and my memory problems subsided.

[mccoyjeremy]

My emotional Range has been Excellent, before the surgery I was on a regular schedule of Anti-depressants & now have been brought off all anti-depressants, which they told me would most likely happen because Epilepsy & depression have striking similarities, & that they wouldn't be surprised if depression wasn't my epilepsy in disguise. My Spatiotemporal recognition, speech & learning are 3x higher since the sugery & are rapidly increasing due to not having meds blocking the brains normal ciruits

[MsPhoebe1998]

I had an amygdolo-hippocamopectomy on the right when I had surgery. I feel sure they removed only epileptogenic tissue in the hippocampus. It was a long surgery. My IQ has shot up 15 points since then. Had testing last summer to check on things. All is well. Finishd my degree and in grad school now. Intractible seizures would have caused a decline in cognition and I didn't want that. Was depressed after but have found a way to live this new life after 35 years of seizures. Lots of discovery.

[mccoyjeremy]

The reason they removed so much brain was due to the right side of my brain being dead and causing spiking. I'm currently finishing up my prereqs 4 a PA Program and have applied to the PA program @ Medical College of Georgia. After living with Epilepsy 4 9yrs i have finally been able to live a great life, with no medications and no side effects from the surgery.

[morahtrish]

Thank you so much for sharing your pictures!! Our daughter (9 years old) is due to have the exact same surgery...mesial temporal schlerosis due to a complications from a rare genetic disorder on the Q arm of chromosome 26...We have the pre-op meeting with the surgeon on Monday. It really helps to see what to expect...watched a podcast of the surgery itself earlier today too. Again, thanks for sharing and glad to hear you are doing so well!!

[mccoyjeremy]

Sorry it took so long to respond, I pray that the surgery went well, and that the road to recovery is doing good. I know it can be rough, but believe me it gets better, just give it time, and allow the brain to heal and the pressure to equal out. It takes about 3-4 months depending on the body. During my healing process I came down with Aseptic Meningitis which is when the lining of the brain gets irritated by the Cerebral spinal fluid. God Bless and a quick road to recovery.