I am enjoying the extra day off. This week wasn't so bad because school was off and I was just seeing my seniors and vocational program. That is less than half my caseload. However I came in Monday to find out that one of my kids off campus orthopedic appointments had been scheduled while I was at TCI, for Monday, so off I went. I was off campus 8-5:30. We were suppose to be back at 2 so he didn't have food. Luckily it was in the city and right down the road from street vendors who were willing to sell me tuna salad with no bread (he is on a blended diet). Other than that I have been filling the extra time with paper work.
I had my follow up cardio appointment on Tuesday. It went fairly well. I am still having breakthrough issues with POTS so he put me on a beta blocker in addition the the Midodrin which hopefully my blood pressure will tolerate and go to low. The hope is it will prevent my heart rate from skyrocketing with POTS attacks and keep it more consistent.
So, TCI had entirely pissed me off. the only thing that went well with this visit was the actual appointment with Dr. Kula. The nurse practitioner that did my eval this time called on Monday, (3 times while I was at the doctor with the kid) and said that guess what... the MRI's on my disk are crap and now they need the films which she sent home with me to do the measurements. Several times while I was there I stated just that and asked them to check it, I was told they were fine, hum. So now I have to pay to ship them back to TCI instead of just leaving them there when they needed them. I was so mad on the phone. I asked if they could pay for the shipping since it was her fault they needed to be shipped and was told it was not their responsibility. BS it isn't my responsibility to take care of her mistake. The options I was given were ship me imaging and have the measurements done or not and they wont be.
I have had nothing but issues with this appointment. It took a month to schedule, no one would respond to my request to scheduling imaging then they wouldn't schedule them until 2 weeks before the appointment and only got authorization to have them done network (because I only had two weeks I couldn't fight it), and now this. I am seriously thinking about emailing the guy who runs TCI. They are known for good patient care. Maybe they are getting overwhelmed, but quite frankly I don't care when my medical care is involved.
I am done venting I still love the docs.
Friday, July 4, 2008
Saturday, June 28, 2008
TCI Results
I had a fairly unproductive visit to TCI on Friday.
I ended up having to have my imaging done locally so that it would be paid for and then had to fight to get the films to take to TCI because the images on the disk were not very good.
Once I got to TCI things got better. I had the interview with the NP and then didn't even have to wait for my appointment with Dr. Kula despite being early. He spent over two hours examining me. The gist. Not much has improved since surgery and several things have gotten worse, but my imaging doesn't look a ton different. The doctor that does the official measurements wasn't there so I don't know exactly yet but he said it didn't look like my chiari herniation had changed (the hope was it would decrease once it wasn't being pulled on my by tethered cord). Their was slight evidence of SM on a few views but overall it looked like it was shrinking- good news. I have a bad herniated disk at L4L5 and a torn disk at L5S1 these are what their was talk of fixing during surgery but was decided against their is a possibility that they may be causing issues now. My surgery site looks good though.
Dr. B is reviewing my file and calling me to let me know the results of the measurements and if they have any additional thoughts. Dr. Kula recommended follow up in no more than 3 months and said that they would most likely want to redo my ICT if fusion is in my near future.
So that is it. No new news, no real answers. They adjusted some of my meds and requested some new tests that will be reviewed in 3 months.
I ended up having to have my imaging done locally so that it would be paid for and then had to fight to get the films to take to TCI because the images on the disk were not very good.
Once I got to TCI things got better. I had the interview with the NP and then didn't even have to wait for my appointment with Dr. Kula despite being early. He spent over two hours examining me. The gist. Not much has improved since surgery and several things have gotten worse, but my imaging doesn't look a ton different. The doctor that does the official measurements wasn't there so I don't know exactly yet but he said it didn't look like my chiari herniation had changed (the hope was it would decrease once it wasn't being pulled on my by tethered cord). Their was slight evidence of SM on a few views but overall it looked like it was shrinking- good news. I have a bad herniated disk at L4L5 and a torn disk at L5S1 these are what their was talk of fixing during surgery but was decided against their is a possibility that they may be causing issues now. My surgery site looks good though.
Dr. B is reviewing my file and calling me to let me know the results of the measurements and if they have any additional thoughts. Dr. Kula recommended follow up in no more than 3 months and said that they would most likely want to redo my ICT if fusion is in my near future.
So that is it. No new news, no real answers. They adjusted some of my meds and requested some new tests that will be reviewed in 3 months.
Thursday, June 19, 2008
Imaging
OK so it has been a little while. I may or may not have forgotten how to sign in to my own blog. Can we say brain fog.... Don't worry it only took two tries.
I have been working crazy hours this week and have been absolutely exhausted. As I mentioned ortho clinic was moved to THIS week so I have been running around like crazing getting things set up for that and making sure I don't sound like an idiot which will inevitably happen anyway. I have also had teams every day this week, yuck. One tomorrow during ortho clinic. Anyone figure out a way to clone themselves yet? If so I need to know how by tomorrow because i would really like to be in both places. I wrote a statement for the team but it is really not good enough in this particular case.
Guess what someone at TCI finally decided to try and schedule/get insurance authorization for my imaging!!! It is scheduled for the 27th at 11:30 so I can go straight from imaging to TCI. Now for the great news. My oh so lovely insurance decided first to send the auth through a review board which luckily all 4 MRI's passed for coverage however only in network. So now I am suppose to try and get appointments for 4 MRI's done in a week hahaha. The hospital I am capitated to has a 3-4 week back up for non emergent MRI's. So now according to my medical secretary I have to pay out of pocket up front for all 4 MRI's. But I have been to this place before and not had to pay a penny so I really don't know what the deal is. Someone doesn't know what they are talking about!
I was given the options of keeping the appointment in NY or scheduling the MRI's locally. Needless to say I kept the appointment in NY. The quality is better and they will be done for this appointment. If I reschedule the appointment I will have to wait until September and I quite honestly can't wait that long to know what is going on.
That is about it. I can't believe the appointment is next week. Hopefully I will get some answers and maybe even some suggestions for pain relief and some more energy!
I really hope next week is not as hectic at work but I kind of doubt it. I have another new kid coming in on Tuesday.
I have been working crazy hours this week and have been absolutely exhausted. As I mentioned ortho clinic was moved to THIS week so I have been running around like crazing getting things set up for that and making sure I don't sound like an idiot which will inevitably happen anyway. I have also had teams every day this week, yuck. One tomorrow during ortho clinic. Anyone figure out a way to clone themselves yet? If so I need to know how by tomorrow because i would really like to be in both places. I wrote a statement for the team but it is really not good enough in this particular case.
Guess what someone at TCI finally decided to try and schedule/get insurance authorization for my imaging!!! It is scheduled for the 27th at 11:30 so I can go straight from imaging to TCI. Now for the great news. My oh so lovely insurance decided first to send the auth through a review board which luckily all 4 MRI's passed for coverage however only in network. So now I am suppose to try and get appointments for 4 MRI's done in a week hahaha. The hospital I am capitated to has a 3-4 week back up for non emergent MRI's. So now according to my medical secretary I have to pay out of pocket up front for all 4 MRI's. But I have been to this place before and not had to pay a penny so I really don't know what the deal is. Someone doesn't know what they are talking about!
I was given the options of keeping the appointment in NY or scheduling the MRI's locally. Needless to say I kept the appointment in NY. The quality is better and they will be done for this appointment. If I reschedule the appointment I will have to wait until September and I quite honestly can't wait that long to know what is going on.
That is about it. I can't believe the appointment is next week. Hopefully I will get some answers and maybe even some suggestions for pain relief and some more energy!
I really hope next week is not as hectic at work but I kind of doubt it. I have another new kid coming in on Tuesday.
Wednesday, June 11, 2008
EMG's
Well the EMG is over and done. I have to say that the test is not as bad when you have worse sensation. Last year it was "alright" during the test and then really bad spasms the days after. This time I could barely feel the needles in most spots on the right leg but boy could I on the left. We shall see about the days to come.
He basically said that it showed the same thing. Central nervous system damage. I did get out of him that some of my muscle show signs of proximal damage and some distal, I don't know if this is a change or not. I also have increased tone in a few muscles to further complicate the situation.
He thought I may be getting some symptoms from the herniated disks that didn't get fixed during surgery, gerrrr. I won't hold that against anyone though until after I get back from TCI.
Ortho clinic got postponed until next week so I don't have quite as much to do but our air conditioner got blown out in the hole power surge fiasco and just got up and running today so work has been nice and sticky in 100+ weather.
He basically said that it showed the same thing. Central nervous system damage. I did get out of him that some of my muscle show signs of proximal damage and some distal, I don't know if this is a change or not. I also have increased tone in a few muscles to further complicate the situation.
He thought I may be getting some symptoms from the herniated disks that didn't get fixed during surgery, gerrrr. I won't hold that against anyone though until after I get back from TCI.
Ortho clinic got postponed until next week so I don't have quite as much to do but our air conditioner got blown out in the hole power surge fiasco and just got up and running today so work has been nice and sticky in 100+ weather.
Sunday, June 8, 2008
Crazy
I really can't think of any other way to describe this week other than crazy!
Friday afternoon while loading buses the lights went out. We were all thinking ok a kid flipped the switch again no big deal and went on like normal. Once most of the buses were loaded and we were headed back in the fire alarm started going off. Turns out the electric company was sending us bursts which were blowing fuses all over campus and caused a big issue in the electrical room at the school. Their was smoke apparently but no fire. Fire trucks came and we were stuck out in 95 degree sun for a good hour because all of our stuff was in the building. I have really bad luck with schools caching on fire. I am beginning to think it is a taboo.
This weekend I have felt like crap. My head hurts really bad and so do my shoulders. I switched pain meds attempting to prevent drowsiness but the new one is making me really dizzy, my head about to explode, and my vision is flashing with my heart beat. Then again it could just be me so I may give it a few more days.
Next week I have my annually physical for work and my EMG's. Plus all of my end of the month paper word due. Added to ortho clinic on Friday. I may just go insane, or spend a few nights at work, haha.
Friday afternoon while loading buses the lights went out. We were all thinking ok a kid flipped the switch again no big deal and went on like normal. Once most of the buses were loaded and we were headed back in the fire alarm started going off. Turns out the electric company was sending us bursts which were blowing fuses all over campus and caused a big issue in the electrical room at the school. Their was smoke apparently but no fire. Fire trucks came and we were stuck out in 95 degree sun for a good hour because all of our stuff was in the building. I have really bad luck with schools caching on fire. I am beginning to think it is a taboo.
This weekend I have felt like crap. My head hurts really bad and so do my shoulders. I switched pain meds attempting to prevent drowsiness but the new one is making me really dizzy, my head about to explode, and my vision is flashing with my heart beat. Then again it could just be me so I may give it a few more days.
Next week I have my annually physical for work and my EMG's. Plus all of my end of the month paper word due. Added to ortho clinic on Friday. I may just go insane, or spend a few nights at work, haha.
Thursday, June 5, 2008
Stormy Weather
This pic is what our crappy weather did to the gas station next to my work. Can you even imagine what it has done to my head! I have not been too happy the past few days. It has been humid, windy, rainy, and stormy, not to mention the lovely pressure changes. Oh yeah. But tomorrow is Friday so I should get some rest this weekend.
I got my KAFO back, again yesterday. Also made the appointment for my EMG's (ouch) they are on the 11th.
Nothing else is new, hoping the storms end soon.
Wednesday, May 28, 2008
Sleepless in Philly
Well I am back to not sleeping again. I didn't sleep great over the weekend but it wasn't horrid then last night I went to bed at 10:30 and woke up at 1 I have been up since. Work was fun. My head is nicely irritated by coffee but lets face it I was not getting though the day without it.
I have had more pain in my neck the past few weeks, and no it wasn't the new kid at work he is adorable. It is in one spot and I can feel it like the bone is popping out, not good. More instability.
I heard from TCI this week. I have to have MRI's of my head, neck, and back for my follow up so that should show pretty much everything. I also have to get EMG's done again due to the weakness and sensory loss in my legs. What fun, that has to be the worst test I have been through, because it doesn't hurt bad while I am there it kills for days when I try to use the muscles they stick the darn electrified needles into. The testing still isn't scheduled.
That is about it. Nothing is really happening here.
I have had more pain in my neck the past few weeks, and no it wasn't the new kid at work he is adorable. It is in one spot and I can feel it like the bone is popping out, not good. More instability.
I heard from TCI this week. I have to have MRI's of my head, neck, and back for my follow up so that should show pretty much everything. I also have to get EMG's done again due to the weakness and sensory loss in my legs. What fun, that has to be the worst test I have been through, because it doesn't hurt bad while I am there it kills for days when I try to use the muscles they stick the darn electrified needles into. The testing still isn't scheduled.
That is about it. Nothing is really happening here.
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