Re: Guidance Needed - Brain Surgery

[Guest guest]

My son has ACC (missing his corpus callosum) which is what your doctor is

suggesting being severed.

He has uncontrolled seizures. Dr. Dobyns said he would probably always have

them. L

We have tried multiple meds.. Vimpat is our latest one along with Lamictal

and Trileptal.

You would think with 3 meds that it could stop the seizures but it doesn't.

We had the VNS put in 2008 but it malfunctioned somehow and stopped working.

I had to make a decision whether I wanted them to put a new one in or just

take it out. (6 months post op and it was not controlling the seizures)

So I had to make an important decision.

When it malfunctioned it also paralyzed one side of vocal cords which caused

his voice to be scratchy and issues with choking.

I was scared and told them to just remove it.

When the VNS worked, we had control and could swipe him with the magnet to

stop them.

Now we don't have that luxury..

Behavior and obsessiveness......boy, does my son have these same issues.

He is 14 now but when he was younger..I thought I was going to lose my mind

several times a day. His rages were so bad. I spent many a nights huddled

down in the shower crying my eyes out.

He definitely still has his moments but now I just leave his sight when he

starts to get worked up about something.

Come back 15 later and he doesn't even remember what he was obsessing about.

This is the only thing that has EVER seemed to work for us.

Behavior meds DID NOT work at all. Actually, probably made matters worse

but I didn't know. I just did what the doctors suggested and hoped it would

be the " magic " one to stop the rages.

Whew, I've gone on and on. Sorry. I just identified so much with you.

O, we did do 2 evaluations for brain surgery to remove the part that was

seizing. He has multiple focal points so he was never a candidate.

Donna

From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of Holman

Sent: Thursday, June 17, 2010 12:51 AM

To: polymicrogyria

Subject: Guidance Needed - Brain Surgery

Hello all,

Well, after 4 doctors, 2 neurosurgeons and a trip to Pittsburgh we have a

surgery proposed to end my daughter, Mysha's seizures. But, now I am

scared.

First a little background: Mysha is now 13, and VERY high functioning. She

has limited use of her right hand, and walks with a limp. Those are the

only signs of her PMG. In fact, she was diagnosed as having an intrauterine

stroke until age 10 when a higher resolution MRI was performed and the PMG

was found. There were no signs of a stroke. Mysha has never had feeding

issues, and never needed speech therapy. There were delays with speech, but

they resolved by age 2. At 18 months she had her first seizure, but by age

3 we took her off meds. She was okay until at age 5 she had a clinical

seizure. The EEG showed she was seizing every 6 seconds - and this

explained her learning issues, as well as behavior difficulties. At age 8

she went into status and Keppra was added. We were good for a LONG time with

only small nocturnal seizures.

Then, at age 10, she was having a conversation with me (Jan, 2008) when she

suddenly stopped speaking, looked scared, and had a grand mal seizures

lasting about 15 minutes. From that moment on we have lived with almost

constant seizures. We got them under control (kind of), and began to be

evaluated for brain resection. They were just going to go in and remove a

small area of her brain where the seizure started. Bam. Seizure free.

Testing didn't go well, and they never caught a clinical seizure on the

video EEG.

So, off we go about our lives. They keep bumping the Keppra, etc. Then in

Dec of 2009 her behavior spirals out of control. Extreme behavior issues.

I insisted on an EEG - just ot rule stuff out. It turned out that she was

in " sub-clinical status " . Status without convulsions. That was a 3 day

admit. They tried 3 drugs, and a brand new one worked (Vimpat). It

completely cleared her EEG from ALL seizure activity. Yay! Then 2 weeks

after, still on the drug, she began to have loss of concentration and

behavior issues. It all went downhilll quickly. I knew what the follow up

EEG would say. She was back in " sub-clinical status " .

So, to make a long story a bit longer, I'll try to be fast. Thank you for

reading this far!

Right now she is on 3 drugs, birth control (which is NOT working to control

her periods), and they are upping them. It is not working. She has

convulsive seizures about once a week, but the ebb and flow of the sub

clinical are clear. She spent 20 minutes argueing with me in a park about

whether it was 11:34 or 11:36 when she asked what time it was. She gets

obsessive about little things: i.e. " Mom, what's for dinner? What time is

dinner going to be? " 5 minutes later " Mom. What time is dinner? What are

we having? Why do I have to keep asking you? Mom. Answer me. " And, I am

answering her. Every time. This can happen 15 times in a row over a 2 hour

period.

So. Where does all this leave us? With the doctors now saying that because

the left hemisphere is COVERED in PMG and the deeper regions are involved

the ONLY procedure that might help is a Left Hemispherectomy. Yes. They

want to disconnect the left side of her brain. It is all a blur - except

the part where the doctor said " A lot of children learn to walk again. " .

I'm so lost. I'm so scared. And, I'm so confused. Why do I have to make

this choice? Which option is going to destroy her LESS?

I'm sorry for such a long email. But I am sitting here, unable to sleep,

and desperatly lost in my own rambling thoughts.

[Guest guest]

Hello , 

A little background: My son is 13 with left sided unilateral PMG, right

hemiparesis, and in the past had all the same seizure problems as you described

and has been on about every drug out there. It's almost eerie how similar you

experience sounds even down to the subclinical status and the 3 day hospital

stays trying to clear his EEG. His neuro recommended an evaluation for

hemispherectomy at one point as well. We refused to even have him evaluated for

that radical surgery and I am very glad we didn't even consider it now. 

I think you answered your own question. You said she is very high functioning. I

think that hemispherectomy should only considered when seizures are to the point

that they are so debilitating that the child is not able to function. I think

the removal of half her brain will have more permanent negative effects than

uncontrolled seizures. There are many new drugs out there and many more in the

works. Also, there is a chance that these seizures will subside and her

cognitive function will improve. ESES is common in children with PMG especially

unilateral PMG and it gets better after puberty. My son's seizures are now under

control after a roller coaster of drugs and hospital stays. If we would have

removed half his brain, he would have permanent effects that we could not even

hope to improve with treatment. You can't put the half back in. I am not saying

that hemispherectomy is never appropriate but I do think it should only be

performed on young children

with degenerative disorders as a last resort and only if the disorder is so

debilitating that the child cannot function. 

That's my opinion. I hope that helps. 

Steve

Subject: Guidance Needed - Brain Surgery

To: polymicrogyria

Date: Thursday, June 17, 2010, 12:50 AM

 

Hello all,

Well, after 4 doctors, 2 neurosurgeons and a trip to Pittsburgh we have a

surgery proposed to end my daughter, Mysha's seizures.  But, now I am scared. 

First a little background:  Mysha is now 13, and VERY high functioning.  She

has limited use of her right hand, and walks with a limp.  Those are the only

signs of her PMG.  In fact, she was diagnosed as having an intrauterine stroke

until age 10 when a higher resolution MRI was performed and the PMG was found. 

There were no signs of a stroke.  Mysha has never had feeding issues, and never

needed speech therapy.  There were delays with speech, but they resolved by age

2.  At 18 months she had her first seizure, but by age 3 we took her off

meds.  She was okay until at age 5 she had a clinical seizure.  The EEG showed

she was seizing every 6 seconds - and this explained her learning issues, as

well as behavior difficulties.  At age 8 she went into status and Keppra was

added. We were good for a LONG time with only small nocturnal seizures.

Then, at age 10, she was having a conversation with me (Jan, 2008) when she

suddenly stopped speaking, looked scared, and had a grand mal seizures lasting

about 15 minutes.  From that moment on we have lived with almost constant

seizures.  We got them under control (kind of), and began to be evaluated for

brain resection.  They were just going to go in and remove a small area of her

brain where the seizure started.  Bam.  Seizure free.  Testing didn't go

well, and they never caught a clinical seizure on the video EEG.

So, off we go about our lives.  They keep bumping the Keppra, etc.  Then in

Dec of 2009 her behavior spirals out of control.  Extreme behavior issues.  I

insisted on an EEG - just ot rule stuff out.  It turned out that she was in

" sub-clinical status " .  Status without convulsions.  That was a 3 day admit. 

They tried 3 drugs, and a brand new one worked (Vimpat).  It completely cleared

her EEG from ALL seizure activity.  Yay!  Then 2 weeks after, still on the

drug, she began to have loss of concentration and behavior issues.  It all went

downhilll quickly.  I knew what the follow up EEG would say.  She was back in

" sub-clinical status " .

So, to make a long story a bit longer, I'll try to be fast. Thank you for

reading this far!

Right now she is on 3 drugs, birth control (which is NOT working to control her

periods), and they are upping them.  It is not working.  She has convulsive

seizures about once a week, but the ebb and flow of the sub clinical are clear.

She spent 20 minutes argueing with me in a park about whether it was 11:34 or

11:36 when she asked what time it was.  She gets obsessive about little

things:  i.e.  " Mom, what's for dinner?  What time is dinner going to be? "  

5 minutes later " Mom.  What time is dinner?  What are we having?  Why do I

have to keep asking you?  Mom.  Answer me. "   And, I am answering her.  Every

time.  This can happen 15 times in a row over a 2 hour period. 

So.  Where does all this leave us?  With the doctors now saying that because

the left hemisphere is COVERED in PMG and the deeper regions are involved the

ONLY procedure that might help is a Left Hemispherectomy.  Yes.  They want to

disconnect the left side of her brain.  It is all a blur - except the part

where the doctor said " A lot of children learn to walk again. " . 

I'm so lost.  I'm so scared.  And, I'm so confused.  Why do I have to make

this choice?  Which option is going to destroy her LESS? 

I'm sorry for such a long email.  But I am sitting here, unable to sleep, and

desperatly lost in my own rambling thoughts.

[Guest guest]

:

I totally understand your fear in all this but I do agree with Steve.  This

sounds pretty drastic for such a high functioning kid. I think there is a strong

possibility you would be compremising the skills she has and like Steve said

there is a chance that these seizures will subside in time. I would definitely

get another opinion.  That might ease your mind.  Just take your time, don't

rush into anything and give it some more thought.  Once again, I would

definitely go to another university hospital to get another opinion.  I will

keep you in my prayers.

Blessings,

Bonnie (grandmother to Lindsey 8 years old with bilateral PMG//microsephley/on

Keppra for seizures)

Subject: Guidance Needed - Brain Surgery

To: polymicrogyria

Date: Thursday, June 17, 2010, 12:50 AM

 

Hello all,

Well, after 4 doctors, 2 neurosurgeons and a trip to Pittsburgh we have a

surgery proposed to end my daughter, Mysha's seizures.  But, now I am scared. 

First a little background:  Mysha is now 13, and VERY high functioning.  She

has limited use of her right hand, and walks with a limp.  Those are the only

signs of her PMG.  In fact, she was diagnosed as having an intrauterine stroke

until age 10 when a higher resolution MRI was performed and the PMG was found. 

There were no signs of a stroke.  Mysha has never had feeding issues, and never

needed speech therapy.  There were delays with speech, but they resolved by age

2.  At 18 months she had her first seizure, but by age 3 we took her off

meds.  She was okay until at age 5 she had a clinical seizure.  The EEG showed

she was seizing every 6 seconds - and this explained her learning issues, as

well as behavior difficulties.  At age 8 she went into status and Keppra was

added. We were good for a LONG time with only small nocturnal seizures.

Then, at age 10, she was having a conversation with me (Jan, 2008) when she

suddenly stopped speaking, looked scared, and had a grand mal seizures lasting

about 15 minutes.  From that moment on we have lived with almost constant

seizures.  We got them under control (kind of), and began to be evaluated for

brain resection.  They were just going to go in and remove a small area of her

brain where the seizure started.  Bam.  Seizure free.  Testing didn't go

well, and they never caught a clinical seizure on the video EEG.

So, off we go about our lives.  They keep bumping the Keppra, etc.  Then in

Dec of 2009 her behavior spirals out of control.  Extreme behavior issues.  I

insisted on an EEG - just ot rule stuff out.  It turned out that she was in

" sub-clinical status " .  Status without convulsions.  That was a 3 day admit. 

They tried 3 drugs, and a brand new one worked (Vimpat).  It completely cleared

her EEG from ALL seizure activity.  Yay!  Then 2 weeks after, still on the

drug, she began to have loss of concentration and behavior issues.  It all went

downhilll quickly.  I knew what the follow up EEG would say.  She was back in

" sub-clinical status " .

So, to make a long story a bit longer, I'll try to be fast. Thank you for

reading this far!

Right now she is on 3 drugs, birth control (which is NOT working to control her

periods), and they are upping them.  It is not working.  She has convulsive

seizures about once a week, but the ebb and flow of the sub clinical are clear.

She spent 20 minutes argueing with me in a park about whether it was 11:34 or

11:36 when she asked what time it was.  She gets obsessive about little

things:  i.e.  " Mom, what's for dinner?  What time is dinner going to be? "  

5 minutes later " Mom.  What time is dinner?  What are we having?  Why do I

have to keep asking you?  Mom.  Answer me. "   And, I am answering her.  Every

time.  This can happen 15 times in a row over a 2 hour period. 

So.  Where does all this leave us?  With the doctors now saying that because

the left hemisphere is COVERED in PMG and the deeper regions are involved the

ONLY procedure that might help is a Left Hemispherectomy.  Yes.  They want to

disconnect the left side of her brain.  It is all a blur - except the part

where the doctor said " A lot of children learn to walk again. " . 

I'm so lost.  I'm so scared.  And, I'm so confused.  Why do I have to make

this choice?  Which option is going to destroy her LESS? 

I'm sorry for such a long email.  But I am sitting here, unable to sleep, and

desperatly lost in my own rambling thoughts.

[Guest guest]

I agree this is VERY drastic. But, I think I left out a few things. My daughter

has DRASTICALLY worsened over the last two years. It shows in school,

relationships and nerupsych reports.

Her seizures will not go away, at least according to her last 4 opinions. They

have gotten only worse and natured to the point we are today.

60 percent of most days she is borderline " autistic " either from the drugs or

the seizures. Her current meds are all twice a days as follows: vimpat, 100 mg,

keppra 1500 mg, lamictal, 75 mg (down from 150 because we were weaning her when

this last flurry started).

She is less high functioning today than she was 3 years ago. This is our 3rd

opinion.

This is not to say I'm not reading and taking into account what you are saying,

but to let you know why I'm considering this.

There is also strong indicators that most have her function migrated to the

right side so while there would be loss of motor function it may not be as

drastic. We are doing non invasive tests to determine this.

.

Sent from my iPhone

:

I totally understand your fear in all this but I do agree with Steve. This

sounds pretty drastic for such a high functioning kid. I think there is a strong

possibility you would be compremising the skills she has and like Steve said

there is a chance that these seizures will subside in time. I would definitely

get another opinion. That might ease your mind. Just take your time, don't

rush into anything and give it some more thought. Once again, I would

definitely go to another university hospital to get another opinion. I will

keep you in my prayers.

Blessings,

Bonnie (grandmother to Lindsey 8 years old with bilateral PMG//microsephley/on

Keppra for seizures)

Subject: Guidance Needed - Brain Surgery

To: polymicrogyria

Date: Thursday, June 17, 2010, 12:50 AM

Hello all,

Well, after 4 doctors, 2 neurosurgeons and a trip to Pittsburgh we have a

surgery proposed to end my daughter, Mysha's seizures. But, now I am scared.

First a little background: Mysha is now 13, and VERY high functioning. She has

limited use of her right hand, and walks with a limp. Those are the only signs

of her PMG. In fact, she was diagnosed as having an intrauterine stroke until

age 10 when a higher resolution MRI was performed and the PMG was found. There

were no signs of a stroke. Mysha has never had feeding issues, and never needed

speech therapy. There were delays with speech, but they resolved by age 2. At

18 months she had her first seizure, but by age 3 we took her off meds. She was

okay until at age 5 she had a clinical seizure. The EEG showed she was seizing

every 6 seconds - and this explained her learning issues, as well as behavior

difficulties. At age 8 she went into status and Keppra was added. We were good

for a LONG time with only small nocturnal seizures.

Then, at age 10, she was having a conversation with me (Jan, 2008) when she

suddenly stopped speaking, looked scared, and had a grand mal seizures lasting

about 15 minutes. From that moment on we have lived with almost constant

seizures. We got them under control (kind of), and began to be evaluated for

brain resection. They were just going to go in and remove a small area of her

brain where the seizure started. Bam. Seizure free. Testing didn't go well,

and they never caught a clinical seizure on the video EEG.

So, off we go about our lives. They keep bumping the Keppra, etc. Then in Dec

of 2009 her behavior spirals out of control. Extreme behavior issues. I

insisted on an EEG - just ot rule stuff out. It turned out that she was in

" sub-clinical status " . Status without convulsions. That was a 3 day admit.

They tried 3 drugs, and a brand new one worked (Vimpat). It completely cleared

her EEG from ALL seizure activity. Yay! Then 2 weeks after, still on the drug,

she began to have loss of concentration and behavior issues. It all went

downhilll quickly. I knew what the follow up EEG would say. She was back in

" sub-clinical status " .

So, to make a long story a bit longer, I'll try to be fast. Thank you for

reading this far!

Right now she is on 3 drugs, birth control (which is NOT working to control her

periods), and they are upping them. It is not working. She has convulsive

seizures about once a week, but the ebb and flow of the sub clinical are clear.

She spent 20 minutes argueing with me in a park about whether it was 11:34 or

11:36 when she asked what time it was. She gets obsessive about little things:

i.e. " Mom, what's for dinner? What time is dinner going to be? " 5 minutes

later " Mom. What time is dinner? What are we having? Why do I have to keep

asking you? Mom. Answer me. " And, I am answering her. Every time. This can

happen 15 times in a row over a 2 hour period.

So. Where does all this leave us? With the doctors now saying that because the

left hemisphere is COVERED in PMG and the deeper regions are involved the ONLY

procedure that might help is a Left Hemispherectomy. Yes. They want to

disconnect the left side of her brain. It is all a blur - except the part where

the doctor said " A lot of children learn to walk again. " .

I'm so lost. I'm so scared. And, I'm so confused. Why do I have to make this

choice? Which option is going to destroy her LESS?

I'm sorry for such a long email. But I am sitting here, unable to sleep, and

desperatly lost in my own rambling thoughts.

[Guest guest]

Just curious ....Were all the opinions the same?

Bonnie

Subject: Guidance Needed - Brain Surgery

To: polymicrogyria

Date: Thursday, June 17, 2010, 12:50 AM

Hello all,

Well, after 4 doctors, 2 neurosurgeons and a trip to Pittsburgh we have a

surgery proposed to end my daughter, Mysha's seizures. But, now I am scared.

First a little background: Mysha is now 13, and VERY high functioning. She has

limited use of her right hand, and walks with a limp. Those are the only signs

of her PMG. In fact, she was diagnosed as having an intrauterine stroke until

age 10 when a higher resolution MRI was performed and the PMG was found. There

were no signs of a stroke. Mysha has never had feeding issues, and never needed

speech therapy. There were delays with speech, but they resolved by age 2. At

18 months she had her first seizure, but by age 3 we took her off meds. She was

okay until at age 5 she had a clinical seizure. The EEG showed she was seizing

every 6 seconds - and this explained her learning issues, as well as behavior

difficulties. At age 8 she went into status and Keppra was added. We were good

for a LONG time with only small nocturnal seizures.

Then, at age 10, she was having a conversation with me (Jan, 2008) when she

suddenly stopped speaking, looked scared, and had a grand mal seizures lasting

about 15 minutes. From that moment on we have lived with almost constant

seizures. We got them under control (kind of), and began to be evaluated for

brain resection. They were just going to go in and remove a small area of her

brain where the seizure started. Bam. Seizure free. Testing didn't go well,

and they never caught a clinical seizure on the video EEG.

So, off we go about our lives. They keep bumping the Keppra, etc. Then in Dec

of 2009 her behavior spirals out of control. Extreme behavior issues. I

insisted on an EEG - just ot rule stuff out. It turned out that she was in

" sub-clinical status " . Status without convulsions. That was a 3 day admit.

They tried 3 drugs, and a brand new one worked (Vimpat). It completely cleared

her EEG from ALL seizure activity. Yay! Then 2 weeks after, still on the drug,

she began to have loss of concentration and behavior issues. It all went

downhilll quickly. I knew what the follow up EEG would say. She was back in

" sub-clinical status " .

So, to make a long story a bit longer, I'll try to be fast. Thank you for

reading this far!

Right now she is on 3 drugs, birth control (which is NOT working to control her

periods), and they are upping them. It is not working. She has convulsive

seizures about once a week, but the ebb and flow of the sub clinical are clear.

She spent 20 minutes argueing with me in a park about whether it was 11:34 or

11:36 when she asked what time it was. She gets obsessive about little things:

i.e. " Mom, what's for dinner? What time is dinner going to be? " 5 minutes

later " Mom. What time is dinner? What are we having? Why do I have to keep

asking you? Mom. Answer me. " And, I am answering her. Every time. This can

happen 15 times in a row over a 2 hour period.

So. Where does all this leave us? With the doctors now saying that because the

left hemisphere is COVERED in PMG and the deeper regions are involved the ONLY

procedure that might help is a Left Hemispherectomy. Yes. They want to

disconnect the left side of her brain. It is all a blur - except the part where

the doctor said " A lot of children learn to walk again. " .

I'm so lost. I'm so scared. And, I'm so confused. Why do I have to make this

choice? Which option is going to destroy her LESS?

I'm sorry for such a long email. But I am sitting here, unable to sleep, and

desperatly lost in my own rambling thoughts.

[Guest guest]

Bonnie

2 were. The other was a lobectomy first and " see how it goes " . They estimated a

less than 20% success rate. And a strong possibility of having to do this for

tge second surgery. There was also a 50% chance that tge lobectomy would worsen

the seizure.

She has cortal dysplasia. That was just found, and it is in the deep centre of

tge brain. Her physical self does NOT match her brain at alll. The MRI surprised

the doctors.

Sent from my iPhone

Just curious ....Were all the opinions the same?

Bonnie

Subject: Guidance Needed - Brain Surgery

To: polymicrogyria

Date: Thursday, June 17, 2010, 12:50 AM

Hello all,

Well, after 4 doctors, 2 neurosurgeons and a trip to Pittsburgh we have a

surgery proposed to end my daughter, Mysha's seizures. But, now I am scared.

First a little background: Mysha is now 13, and VERY high functioning. She has

limited use of her right hand, and walks with a limp. Those are the only signs

of her PMG. In fact, she was diagnosed as having an intrauterine stroke until

age 10 when a higher resolution MRI was performed and the PMG was found. There

were no signs of a stroke. Mysha has never had feeding issues, and never needed

speech therapy. There were delays with speech, but they resolved by age 2. At 18

months she had her first seizure, but by age 3 we took her off meds. She was

okay until at age 5 she had a clinical seizure. The EEG showed she was seizing

every 6 seconds - and this explained her learning issues, as well as behavior

difficulties. At age 8 she went into status and Keppra was added. We were good

for a LONG time with only small nocturnal seizures.

Then, at age 10, she was having a conversation with me (Jan, 2008) when she

suddenly stopped speaking, looked scared, and had a grand mal seizures lasting

about 15 minutes. From that moment on we have lived with almost constant

seizures. We got them under control (kind of), and began to be evaluated for

brain resection. They were just going to go in and remove a small area of her

brain where the seizure started. Bam. Seizure free. Testing didn't go well, and

they never caught a clinical seizure on the video EEG.

So, off we go about our lives. They keep bumping the Keppra, etc. Then in Dec of

2009 her behavior spirals out of control. Extreme behavior issues. I insisted on

an EEG - just ot rule stuff out. It turned out that she was in " sub-clinical

status " . Status without convulsions. That was a 3 day admit. They tried 3 drugs,

and a brand new one worked (Vimpat). It completely cleared her EEG from ALL

seizure activity. Yay! Then 2 weeks after, still on the drug, she began to have

loss of concentration and behavior issues. It all went downhilll quickly. I knew

what the follow up EEG would say. She was back in " sub-clinical status " .

So, to make a long story a bit longer, I'll try to be fast. Thank you for

reading this far!

Right now she is on 3 drugs, birth control (which is NOT working to control her

periods), and they are upping them. It is not working. She has convulsive

seizures about once a week, but the ebb and flow of the sub clinical are clear.

She spent 20 minutes argueing with me in a park about whether it was 11:34 or

11:36 when she asked what time it was. She gets obsessive about little things:

i.e. " Mom, what's for dinner? What time is dinner going to be? " 5 minutes later

" Mom. What time is dinner? What are we having? Why do I have to keep asking you?

Mom. Answer me. " And, I am answering her. Every time. This can happen 15 times

in a row over a 2 hour period.

So. Where does all this leave us? With the doctors now saying that because the

left hemisphere is COVERED in PMG and the deeper regions are involved the ONLY

procedure that might help is a Left Hemispherectomy. Yes. They want to

disconnect the left side of her brain. It is all a blur - except the part where

the doctor said " A lot of children learn to walk again. " .

I'm so lost. I'm so scared. And, I'm so confused. Why do I have to make this

choice? Which option is going to destroy her LESS?

I'm sorry for such a long email. But I am sitting here, unable to sleep, and

desperatly lost in my own rambling thoughts.

[Guest guest]

, 

You are certainly right to consider it. You must consider all options. I

complete understand how hard it is to watch your child regress like that.

If things have worsened over the last 2 years, I would look at the meds. Three

meds are almost always too many. My experience is that when my son was on 3 or

more meds, he got worse. I think you are going in the right direction in weaning

the Lamictal. Doctors always want to add more drugs or up the dosages. This ends

up with an endless cycle of adding drug on top of drug to counteract the

previous drug's side effects. Eventually it becomes toxic and increases

seizures. The reason why I say this is because overmedication can mask what's

really going on. Her seizures might not be as bad as they seem. I know it is

hard to do, but be optimistic and don't accept the neuros poor prognosis. Our

neuro said my son would always have seizures and they would only get worse not

better and he would continue his cognitive spiral downwards. He can't believe

how well he is doing now. Every doctor we ever saw told us the same except for

Dr. Guerini in Italy. It would be

worthwhile to go to Pub Med and read his articles. It might give you some hope.

I actually went to a medical library and looked up his articles and made copies

and sent them to our neuro. Believe it or not, the neuro actually read them and

began treatment based on the information. Thank God we have a humble Neuro. Most

think they are God.

Steve

Subject: Guidance Needed - Brain Surgery

To: polymicrogyria

Date: Thursday, June 17, 2010, 12:50 AM

Hello all,

Well, after 4 doctors, 2 neurosurgeons and a trip to Pittsburgh we have a

surgery proposed to end my daughter, Mysha's seizures. But, now I am scared.

First a little background: Mysha is now 13, and VERY high functioning. She has

limited use of her right hand, and walks with a limp. Those are the only signs

of her PMG. In fact, she was diagnosed as having an intrauterine stroke until

age 10 when a higher resolution MRI was performed and the PMG was found. There

were no signs of a stroke. Mysha has never had feeding issues, and never needed

speech therapy. There were delays with speech, but they resolved by age 2. At

18 months she had her first seizure, but by age 3 we took her off meds. She was

okay until at age 5 she had a clinical seizure. The EEG showed she was seizing

every 6 seconds - and this explained her learning issues, as well as behavior

difficulties. At age 8 she went into status and Keppra was added. We were good

for a LONG time with only small nocturnal seizures.

Then, at age 10, she was having a conversation with me (Jan, 2008) when she

suddenly stopped speaking, looked scared, and had a grand mal seizures lasting

about 15 minutes. From that moment on we have lived with almost constant

seizures. We got them under control (kind of), and began to be evaluated for

brain resection. They were just going to go in and remove a small area of her

brain where the seizure started. Bam. Seizure free. Testing didn't go well,

and they never caught a clinical seizure on the video EEG.

So, off we go about our lives. They keep bumping the Keppra, etc. Then in Dec

of 2009 her behavior spirals out of control. Extreme behavior issues. I

insisted on an EEG - just ot rule stuff out. It turned out that she was in

" sub-clinical status " . Status without convulsions. That was a 3 day admit.

They tried 3 drugs, and a brand new one worked (Vimpat). It completely cleared

her EEG from ALL seizure activity. Yay! Then 2 weeks after, still on the drug,

she began to have loss of concentration and behavior issues. It all went

downhilll quickly. I knew what the follow up EEG would say. She was back in

" sub-clinical status " .

So, to make a long story a bit longer, I'll try to be fast. Thank you for

reading this far!

Right now she is on 3 drugs, birth control (which is NOT working to control her

periods), and they are upping them. It is not working. She has convulsive

seizures about once a week, but the ebb and flow of the sub clinical are clear.

She spent 20 minutes argueing with me in a park about whether it was 11:34 or

11:36 when she asked what time it was. She gets obsessive about little things:

i.e. " Mom, what's for dinner? What time is dinner going to be? " 5 minutes

later " Mom. What time is dinner? What are we having? Why do I have to keep

asking you? Mom. Answer me. " And, I am answering her. Every time. This can

happen 15 times in a row over a 2 hour period.

So. Where does all this leave us? With the doctors now saying that because the

left hemisphere is COVERED in PMG and the deeper regions are involved the ONLY

procedure that might help is a Left Hemispherectomy. Yes. They want to

disconnect the left side of her brain. It is all a blur - except the part where

the doctor said " A lot of children learn to walk again. " .

I'm so lost. I'm so scared. And, I'm so confused. Why do I have to make this

choice? Which option is going to destroy her LESS?

I'm sorry for such a long email. But I am sitting here, unable to sleep, and

desperatly lost in my own rambling thoughts.

[Guest guest]

Steve

Our neuro is also humble. He sent her for the other 2 opinions. We have dropped

all her meds at one time or another. I hate pumping then in. We drop a little

and suddenly find ourselves in status. Tge plan was NEVER to be on 3 drugs. Once

we got vimpat up we were ending lamictal. Then we got to the halfway point, and

suddenly her seizures spiked. So, we are holding until she stabilizes again. I

hate these drugs. I've actually had crazy moments where I thought tge drugs were

the cause of her seizures. But, like I said, a small drop and she's seizing.

Bump it back up and it stops for a little while.

All the drugs start off working, then just stop.

What are you doing for your son now??

Sent from my iPhone

,

You are certainly right to consider it. You must consider all options. I

complete understand how hard it is to watch your child regress like that.

If things have worsened over the last 2 years, I would look at the meds. Three

meds are almost always too many. My experience is that when my son was on 3 or

more meds, he got worse. I think you are going in the right direction in weaning

the Lamictal. Doctors always want to add more drugs or up the dosages. This ends

up with an endless cycle of adding drug on top of drug to counteract the

previous drug's side effects. Eventually it becomes toxic and increases

seizures. The reason why I say this is because overmedication can mask what's

really going on. Her seizures might not be as bad as they seem. I know it is

hard to do, but be optimistic and don't accept the neuros poor prognosis. Our

neuro said my son would always have seizures and they would only get worse not

better and he would continue his cognitive spiral downwards. He can't believe

how well he is doing now. Every doctor we ever saw told us the same except for

Dr. Guerini in Italy. It would be

worthwhile to go to Pub Med and read his articles. It might give you some hope.

I actually went to a medical library and looked up his articles and made copies

and sent them to our neuro. Believe it or not, the neuro actually read them and

began treatment based on the information. Thank God we have a humble Neuro. Most

think they are God.

Steve

Subject: Guidance Needed - Brain Surgery

To: polymicrogyria

Date: Thursday, June 17, 2010, 12:50 AM

Hello all,

Well, after 4 doctors, 2 neurosurgeons and a trip to Pittsburgh we have a

surgery proposed to end my daughter, Mysha's seizures. But, now I am scared.

First a little background: Mysha is now 13, and VERY high functioning. She has

limited use of her right hand, and walks with a limp. Those are the only signs

of her PMG. In fact, she was diagnosed as having an intrauterine stroke until

age 10 when a higher resolution MRI was performed and the PMG was found. There

were no signs of a stroke. Mysha has never had feeding issues, and never needed

speech therapy. There were delays with speech, but they resolved by age 2. At 18

months she had her first seizure, but by age 3 we took her off meds. She was

okay until at age 5 she had a clinical seizure. The EEG showed she was seizing

every 6 seconds - and this explained her learning issues, as well as behavior

difficulties. At age 8 she went into status and Keppra was added. We were good

for a LONG time with only small nocturnal seizures.

Then, at age 10, she was having a conversation with me (Jan, 2008) when she

suddenly stopped speaking, looked scared, and had a grand mal seizures lasting

about 15 minutes. From that moment on we have lived with almost constant

seizures. We got them under control (kind of), and began to be evaluated for

brain resection. They were just going to go in and remove a small area of her

brain where the seizure started. Bam. Seizure free. Testing didn't go well, and

they never caught a clinical seizure on the video EEG.

So, off we go about our lives. They keep bumping the Keppra, etc. Then in Dec of

2009 her behavior spirals out of control. Extreme behavior issues. I insisted on

an EEG - just ot rule stuff out. It turned out that she was in " sub-clinical

status " . Status without convulsions. That was a 3 day admit. They tried 3 drugs,

and a brand new one worked (Vimpat). It completely cleared her EEG from ALL

seizure activity. Yay! Then 2 weeks after, still on the drug, she began to have

loss of concentration and behavior issues. It all went downhilll quickly. I knew

what the follow up EEG would say. She was back in " sub-clinical status " .

So, to make a long story a bit longer, I'll try to be fast. Thank you for

reading this far!

Right now she is on 3 drugs, birth control (which is NOT working to control her

periods), and they are upping them. It is not working. She has convulsive

seizures about once a week, but the ebb and flow of the sub clinical are clear.

She spent 20 minutes argueing with me in a park about whether it was 11:34 or

11:36 when she asked what time it was. She gets obsessive about little things:

i.e. " Mom, what's for dinner? What time is dinner going to be? " 5 minutes later

" Mom. What time is dinner? What are we having? Why do I have to keep asking you?

Mom. Answer me. " And, I am answering her. Every time. This can happen 15 times

in a row over a 2 hour period.

So. Where does all this leave us? With the doctors now saying that because the

left hemisphere is COVERED in PMG and the deeper regions are involved the ONLY

procedure that might help is a Left Hemispherectomy. Yes. They want to

disconnect the left side of her brain. It is all a blur - except the part where

the doctor said " A lot of children learn to walk again. " .

I'm so lost. I'm so scared. And, I'm so confused. Why do I have to make this

choice? Which option is going to destroy her LESS?

I'm sorry for such a long email. But I am sitting here, unable to sleep, and

desperatly lost in my own rambling thoughts.