Small update

Stacy had a problem with tremors starting July 2009. She now lives full time with her Mom. She needs someone 24 hours and it's the only way right now. However she's not had 1 seizure since then so that's great.

One new siezure

About a month ago, she had another seizure, which is unusual for this time of year, but it was not full blown and she remained conscious throughout. She lost some movement on her left side and slurred her words and wouldn't look directly at me unless I told her to. She joked around during the seizure, and mentally she was fine. After it was over, like 15 mins., she was completely back to normal.

The aides are doing great but I had to tell one not to come back as she was inciting Stacy to get angry at the kids. After I told her it was my way or the highway, she reported us to the Child Protective Services, who came out, talked to us and then the kids privately, and found nothing wrong. It was a very positive experience. The CPS agents were very kind and thorough.

Back to somewhat normal

After dealing with the sudden death of my Mother, and posting everything on her blog, now I'm back to dealing with Stacy. However there's nothing new to report for her, which is a good thing. Winter time seems to stop her seizures. I wish we knew why.

New stuff

Stacy now has an aide coming to the house every weekday for 2 hours to help her do stuff around the house. She has made an amazing transformation and even cleans and does laundry now without me directing her. She and the aides have really done a great job cleaning. I am so pleased with what is happening. We could never get this kind of help before because we couldn't qualify for Medicaid. Now Indiana has a program for those that have TBI's but don't qualify. I'm not much for social programs but obviously, this one works.

Only 2 seizures yet this year, and over a full year so things are good.

No news is good news

7 months and no seizures. Nothing else to say.

newest update

I finally felt like updating here. Stacy started a new medicine for controlling tremors. It is helping a lot. She has not had a seizure since October also. However she did the same think last year during this time. That's all I have for now.

New info

OK. So for now, the neurologist is not suggesting surgery as Stacy has not had a seizure since the hospital induce one in October for her test. They have lots of data and it is always an option if needed.

On Feb. 26th we are seeing a movement-disorder neurologist about her tremors. While they are not as bad as they were 2 weeks ago, they are still slightly worse than before that.

Update

Today at the University of Chicago, the Dr. conducted 40 minutes more testing. Then the pyschiatrist threw me loop and told me Stacy is clinically depressed. She told me that Stacy needs more time with her kids and also needs to see a Cognitive Behaviour Therapy Psychiatrist and may have a chemical imbalance in her brain.

For the actual reason we were there, it was not really conclusive. Normally when a person has right brain seizures the left brain is more active but they found the opposite.

The next appointment is with her neurologist on Feb. 7th. We do not know if this pneurosych-test will have any affect on possible future surgery.

Busy Time

This is a very busy time for me right now. We went to Anderson which is 3 hours for Cameron's state chess tournament. He placed 4th out of 64! His best ever for a state competition. Then we drove to Warsaw to pick up Stacy. Cameron had won a special race at a local go-kart track and so we had to go over there to pick up his prize, which was more races. Both Cam and Dyl raced a couple of times and played lazer tag. Then we went home and got there at 10:15. Sunday was a rest day. Brittany made spaghetti for supper and did a great job.

Today, Dylan came home from school early for possible strep throat. I took him to the Dr. and it was negative.

Tomorrow we go to Chicago for Stacy's psychiatry appointment follow-up. Next week Stacy is to get a new crown on her tooth, and then we go to so her Neurologist in Chicago.

All of this and having Stacy home is very stressful for me so please pray for all of us. Her mom is such a great help in watching her during the week. I feel so secure with them together as her mom was a nursing assistant for many years.

Both Stacy and I have made up our minds at this point to have the surgery to help stop her seizures if the percentages show a positive outcome. That surgery is still far off and though so we have some time before having to make the decision final. Unfortunately they do not think it will stop her tremors.

19th Anniversary

Well, it's been 19 years of marriage. Hard to believe. It certainly hasn't been the trouble-free time we always wish for. It was around 9 years ago this month that Anthony was diagnosed with brain cancer and 8 years ago when he contracted pnuemonia during chemo and almost died on us. Then 4 years ago with Stacy and her brain injury.

Stacy and I are not together this year which may be the first time but it's just another day like any other in reality. At least this anniversary was much better than the 15th when she was in the hospital. I sent her flowers and she called me. She told me she has not had any more bad tremors and that made me feel much better as I've been worrying about her almost constantly. About the only time I can think of other things is at work and that's not for long. My mind always comes back to what she is doing at that time and how much I miss her. However I know that being with her mom and doing housework is much better for her than her just laying in bed at home until I get home from work.

Ryan

A good day

I just talked to Stacy and she had a good day without any tremors. While the increase in medicine may have helped, she didn't have any bad tremors yesterday either, and that was before the increase in the medicine.

Increase in Tremors

Stacy has been staying at her mother's in Warsaw for the last few days. Last night they called and told me she was having more tremors than usual. Some were lasting 15 minutes and they also involved her legs and arms. A reminder for those that don't know, these are not seizures in any form and do not indicate an oncoming seizure. This is unfortunately just another problem she has due to her brain damage. Today I took off work and took her to her local neurologist and he increased her Enderol to a double dose for her morning set of pills. Hopefully this will help. A good thing is that she had no problem today. It seems impossible to pinpoint as to what triggers these.

One thing they did tell us in Chicago is that if we have the surgery to help her epilepsy, it will not help the tremors since again, they are not in any way related to a seizure.

Very Long Day

This was a very long appointment. We got there an hour early and we had to wait that full hour before they started. The total time was 5 and a half hours with 1 hour of lunch not included. We go back for results on Jan. 29th.

The drive home was terrible. Because of the weather a portion of I-90 was full of large potholes. They were so bad that they were patching it at that time. Therefore there was a large traffic jam because it went to one lane at that point. At times we would completely stop. At one point before the patching it was so bad that we saw around 10 cars right together, along the side of the road, changing tires. We saw several more over the next couple of miles.

New Psyc appt.

Stacy has a Neuropsych appointment for Jan. 8th. She will have a Neuropsych test for epilipsy.

Nothing much new

Stacy's been staying at her mom's a lot and keeps busy there. This way she gets up earlier, around 9-10 instead of staying in bed until I get home. She's home right now for 2 appointments this week with the dentist and a blood test for her thyroid.

She has not had a seizure since the one the University of Chicago made her have during her week-long test. She still continues to have tremors but not as bad as she was having them in August. We found out that loud music triggers them besides just relaxing her neck muscles. She has had problems with them in our church and also her mom's church and since they are different buildings the only thing is the music. At church yesterday she started tremoring within seconds of the music starting. We went to the cafe to watch from there but still she tremored so we went to the children's area until the louder music was over and then to the sanctuary to watch Dylan sing with his class. She was fine from then on.

We need to go to Elkhart General this week to pick up her CT's and MRI's and her Neurosurgeon's notes to send to the University of Chicago. Also I'm waiting on them to call me for an appointment for her neuropsych test. Everytime I call there I'm put on hold for more than 5 mins. and so I go to phone mail and leave all the info, and they never call back. I guess I'll have to find time to stay on the phone for longer periods.

Ryan

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.

To leave a comment

To leave a comment to any of my posts, just click under the posting where it says 'comments'.

Enter your comment and you can click the 'anonymous' button and then click on 'publish your comments."

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.

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.