The white large spot in the center is damage caused by meningitis. This is diseased tissue in her memory area and is why she has very little short-term memory. The upper left is where her surgery was performed in 2003.
Tuesday, November 20, 2007
Here's an image of Stacy's brain
The white large spot in the center is damage caused by meningitis. This is diseased tissue in her memory area and is why she has very little short-term memory. The upper left is where her surgery was performed in 2003.
Not much new
Things are going to be slow for awhile until next Febs. appointment. However I am in the process of making an appointment at Chicago for Stacy for a Neuropsych test for epilepsy with Dr. Maureen Lacy. I'm also getting together all of Stacy's CT's and MRI's she's had since having her first surgery in Dec. of 2003. I'm not sure how many there are. I believe she's had 3 MRI's but many more CT's. I think she's had around 10 CT's since then.
Stacy continues to do well and often stays with her mother in Warsaw. For the week of Thanksgiving she's staying home since we have 4 days off of school and work.
She's not had a seizure since the University of Chicago did the testing where she was supposed to have one. Her tremors have slowed also. On 11/19, I don't think I saw her have even one tremor. Of course if she had one during the day, she wouldn't remember.
Stacy continues to do well and often stays with her mother in Warsaw. For the week of Thanksgiving she's staying home since we have 4 days off of school and work.
She's not had a seizure since the University of Chicago did the testing where she was supposed to have one. Her tremors have slowed also. On 11/19, I don't think I saw her have even one tremor. Of course if she had one during the day, she wouldn't remember.
Saturday, November 17, 2007
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Friday, November 16, 2007
Neurosurgeon Appointment
Today was Stacy's appointment with the neurosurgeon at the University of Chicago. We weren't able to get a lot of information yet as Dr. Penn wants to see every MRI and CT scan Stacy has had. He also wants to see all the notes that Stacy neurosurgeon in Elkhart has. So until he gets to see all of that, he has no decision on the surgery as of yet.
The few things we do know is that the area where the surgery would take place is not near the motor control or memory area so there should not be a problem with any of those things. Meningitis continues to be a <1% chance of getting it, just as it was when she got it after her last surgery. However Dr. Penn said because the neurosurgeon had to put an external drain on Stacy after surgery, this increased the chance of infection to 10%. This was something I never knew, but it would have had to be done anyway as Dr. Penn said this is the proper procedure for the surgery Stacy had. Also, they would give Stacy antibiotics to help keep her from getting any infections.
He did say that this surgery will not stop her tremors. This area of her brain does not have anything to do with motor control. He said they would not do surgery for her infrequent tremors as the risk is too high. If it were someone with Parkinsons, then surgery is an option.
While we talked with him, Dr. Penn looked at her MRI that was taken right after her initial surgery, and also a current CT scan. He described to us the different things in the brain he saw on those scans. It was really interesting as I've never seen MRI or CT scans before except on TV. He showed us where the scarred and damaged brain tissue was throughout the brain. There was one large spot and that was in her memory area and that's why she has limited short term memory.
He also showed me the mesh they put on her skull to cover the hole that was made to do the surgery. I didn't even know that was there!
We also then talked to one of Dr. Ebersole's associate doctors and then happened to come upon Dr. Ebersole himself as we were leaving and had a short conversation. Anyway, we made an appointment for Feb. 7, 2008 with Dr. Ebersole again, which he requested, and he'll have more information then because Dr. Penn will have all the data he wants me to get, and then Dr. Penn will talk with Dr. Ebersole. Also, they are going to have Stacy do a Neuropsyc test with a Dr. Lacy up there. I have to call and make the appointment. For some reason up there, one doctor cannot make an appointment for you with another doctor.
Also, they may have Stacy get a PET scan, so our decision on surgery is put off for several months. Even the neuro doctors have to make for sure that surgery will help and be free of major risk.
Overall Stacy is doing well. She has not had a seizure since the EEG test at Chicago when she was stimulated to have a seizure. Her tremors have decreased quite a lot too.
The few things we do know is that the area where the surgery would take place is not near the motor control or memory area so there should not be a problem with any of those things. Meningitis continues to be a <1% chance of getting it, just as it was when she got it after her last surgery. However Dr. Penn said because the neurosurgeon had to put an external drain on Stacy after surgery, this increased the chance of infection to 10%. This was something I never knew, but it would have had to be done anyway as Dr. Penn said this is the proper procedure for the surgery Stacy had. Also, they would give Stacy antibiotics to help keep her from getting any infections.
He did say that this surgery will not stop her tremors. This area of her brain does not have anything to do with motor control. He said they would not do surgery for her infrequent tremors as the risk is too high. If it were someone with Parkinsons, then surgery is an option.
While we talked with him, Dr. Penn looked at her MRI that was taken right after her initial surgery, and also a current CT scan. He described to us the different things in the brain he saw on those scans. It was really interesting as I've never seen MRI or CT scans before except on TV. He showed us where the scarred and damaged brain tissue was throughout the brain. There was one large spot and that was in her memory area and that's why she has limited short term memory.
He also showed me the mesh they put on her skull to cover the hole that was made to do the surgery. I didn't even know that was there!
We also then talked to one of Dr. Ebersole's associate doctors and then happened to come upon Dr. Ebersole himself as we were leaving and had a short conversation. Anyway, we made an appointment for Feb. 7, 2008 with Dr. Ebersole again, which he requested, and he'll have more information then because Dr. Penn will have all the data he wants me to get, and then Dr. Penn will talk with Dr. Ebersole. Also, they are going to have Stacy do a Neuropsyc test with a Dr. Lacy up there. I have to call and make the appointment. For some reason up there, one doctor cannot make an appointment for you with another doctor.
Also, they may have Stacy get a PET scan, so our decision on surgery is put off for several months. Even the neuro doctors have to make for sure that surgery will help and be free of major risk.
Overall Stacy is doing well. She has not had a seizure since the EEG test at Chicago when she was stimulated to have a seizure. Her tremors have decreased quite a lot too.
Friday, November 9, 2007
Future for Stacy
We visited the University of Chicago for the 3rd time and visited with Dr. Ebersole. I was told by an unbiased source that he is one of the top Drs. in the country dealing with Epilepsy. The plan for Stacy at this point, is 2 surgeries. The first surgery would remove a small portion of her skull and place probes into a diseased portion of her brain. Then they would put her into a private room to do a video EEG where they remove her epilepsy medication slowly until she has a seizure. By this test they will be able to isolate good from bad brain tissue. She would then be taken back to surgery to remove the bad tissue. Hopefully this will stop her seizures and we could stop her medication.
They also noticed several other diseased areas of the brain from the MRI but nothing that needed anything done at this time. They noticed that the pineal gland had some calcification which may not be a big deal, but they would like to see any previous MRI's she's had before.
This could change our lives as she could eventually drive again someday.
Obviously we are very scared about the process and at some point will have to make a decision to do this or not.
I will update again after next Friday's visit with the neurosurgeon.
They also noticed several other diseased areas of the brain from the MRI but nothing that needed anything done at this time. They noticed that the pineal gland had some calcification which may not be a big deal, but they would like to see any previous MRI's she's had before.
This could change our lives as she could eventually drive again someday.
Obviously we are very scared about the process and at some point will have to make a decision to do this or not.
I will update again after next Friday's visit with the neurosurgeon.
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