Meeting the neurosurgeon

Okay, now that thanksgivings crazy fun is over and we are home settled and relaxing I have some time to comment on our recent appointment with doctor Ojemann. First I have to say he is one amazing and gifted man. He listened to every concern, answered every question and helped me feel confident in my choices and my opinions on the topic of surgery. He asked what I felt should be our next step in Colbey Raye’s care and then expressed his opinion. He agreed with me and said I was very logical in my opinion and was very well prepared for this conversation. I did not feel that prepared, and the first few words he spoke after shaking my hand hit me like a sack of bricks! But I must have held those feelings in well.
So, Wednesday Colbey Raye and I headed up to Seattle to meet with Dr. Ojemann the neurosurgeon. He wanted to asses Colbey Raye and speak to us in person before giving us a few time lines to consider. It was such a quickly scheduled appointment I didn’t have very much time to prepare myself and think about what was going to be said during this meeting. Traffic was bad and we ended up being late, I was feeling rushed and a little flustered but we checked in a were taken back right away! Dr. Ojemann came in soon after and started off by pulling up Colbey Raye’s scans. I was expecting a similar explanation, like the one I had received from Dr. Novotny a few days earlier but was I in for a shock. I knew there were now 2 known areas of Dysplasia on the left side of Colbey Rayes brain, and I knew that our doctors thought it was possible that more could show up between now and age 12months, this I was prepared to hear. I expected him to suggest us wait on surgery until we could see more and be a little more sure about what to do during the surgery, I was not at all prepared for what was said next. Dr. Ojemann Pointed out a few abnormal areas of Colbey’s brain on the MRI and then stated, “there is really hardly anything normal about Colbey’s left hemisphere.” I was shocked, speechless and a little confused. I was told about only 2 small areas of Dysplasia, and now I’m being told her entire left hemisphere is abnormal? Still speechless Dr. Ojemann continued to show me the abnormal findings and how both the MRI and PET showed massive amounts of abnormalities all over. The very front of her left frontal lobe is the only area that so far looks to possibly be fairly normal, but it is still not perfect looking. Now for our options, dr. Ojemann has given us the choice, one we can wait and try to hold her off until she is 12 months and get another MRI to see if the frontal lobe is more affected than we see now and if so she would need a full hemispherectomy of the left side. By doing this we would most likely have to try new medications or put her on a special diet, these options have more negative side affects, in order to keep the seizure count down until then. Or we can go ahead with surgery now (as soon as the FMRI is done) and do a partial hemispherectomy and try to save the area on the frontal lobe that looks to be unaffected my the Dysplasia and wait to see if the seizures return. If they do return we would then have to do a second surgery to remove the rest of the left hemisphere. Dr. Ojemann said that, if doing surgery now, he would try his hardest to stay away from the 2 areas that would cause permanent damage if removed. Cognitively she will be just fine without her left brain, the right side can take over and compensate for most things, but the things Colbey Raye would loose with a full hemispherectomy would be her peripheral vision, and normal use in her right arm/leg. She will be able to see and to read but she would not see you until standing right in front of her. Simple tasks using her right hand such as touching the tips of her fingers with her thumb will be a challenge and she could walk with a stiff leg, and not be able to run very well. But the hope would be that because she is young and would have physical therapy she will be able to use her right arm and leg, just not as easily.
I have wanted surgery for some time now after hearing how much it has helped other children similar to Colbey Raye, but I did not expect her to be needing a hemispherectomy, or even a partial hemispherectomy. I had prepared myself for her to have a resection of a small area or two but a hemispherectomy?! I had some more thinking to do now. I do not want to use other damaging medications while we wait for surgery, so After a few minutes I was able to comprehend all that was being said and concluded that regardless of when, Colbey Raye will be needing surgery fairly soon and very possibly a full hemispherectomy, so why postpone the inevitable? Doctor Ojemann agreed, if we are wanting to try and save her fine motor and vision we might as well do surgery now in hopes it will work and possibly another surgery later if it fails and the seizures continue.
we will most likely not need to do an intracranial EEG because dr Ojemann feels confident that the majority of the left hemisphere is abnormal enough to be causing seizures from all over and pinpointing the area is not useful now that the majority of her left hemisphere will be removed. Josh and I both think surgery now is the best option, we are ready for her to be on the road to seizure freedom and we believe this is the only way. After her psych evaluation and Neuro appointment this week I will be calling to schedule a day for surgery. We will still need to wait for the FMRI results before doing surgery but I want to have it scheduled so there will be less waiting. So much has been happening the last few weeks, it’s a busy time for us and I am trying to rely on Gods love and the support of family through this all, I do feel this is a blessing though! Surgery has been our goal for a while now and I feel even more confident with my decision having the neurosurgeon agree with my choice.


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