We got into the Ronald McDonald house we are staying at early Sunday evening. The flight went really well and we flew out of Milwaukee instead of Chicago, so that saved us a lot of time and stress! It is just over a two hour flight during which, my husband and my mother slept most of the time and I read a really good book! The only part of the flight that was difficult for me was the landing. It still hurts my neck to get jared around that much, so I will need to remember to wear my collar more on airplanes. Once we got our luggage we went and got a taxi to the Ronald McDonald house, which is about 30 minutes away from Laguardia (one of NYC's airports). It took a significant amount of time to check in, but once we did it was so wonderful! The people here are absolutely AMAZING and so kind. We have our own private room with: two double beds, a desk, a TV, a night stand, and a rocking chair, our own personal bathroom that even has a tube, and there is a community kitchen that comes with a fully stocked pantry and a fridge with left over dinners and other various odds and ends. You can also buy food and store it on individually labeled shelves in both a fridge and a dry goods shelf. A company, family, or organization brings in food every night for the residents to share with their families. One night there was sandwiches, another was pasta, and tonight is going to be chicken I believe! Girl scouts were here the other day baking cookies and cupcakes which was extremely sweet of them! We all love it here! It is so quite, clean, and everyone is so very kind! It is the perfect place to stay!
On Monday morning we went to the hospital for my pre-surgical testing. They just ask me a bunch of questions to make sure that I am healthy enough for surgery. I answered all her questions, filled out the paper work that I needed to, signed the consent forms, and had all my vitals checked. This all looked good, so they just need to draw blood. As some of you may know I had some difficulties getting that hospital to draw blood out of port when we were there for my surgery in December. It seems as if they had a meeting to discuss why this was such an issue, which they told me there were going to do, because it went very smoothly! They did the blood draw through my port with zero issues and it was quick, effective, and painless!
All the results of those results from my blood work were normal except for my potassium. We check my potassium every couple of months because one of the medications I am on to raise my blood pressure, Florinef (also called Fludrocortisone), can deplete potassium. Ideal potassium levels should be between about 3.7-5.2. On Monday during my pre-surgical appointment it was 3.2 and on Tuesday when they tested it my potassium level went down to 3.1. They then checked it again on Thursday and it had come up to 3.7 after doing three bags of IV potassium. I emailed my neurologist and he wants me to get my potassium blood work done again when I get home and then start on a prescription for potassium for two weeks then we will check my labs again.
I warned the nurse about my nausea and vomiting so she could take note of that and also asked her to make note to put some squishy pads under my knees, hips, and ribcages so that I did not get gigantic bruises after the surgery. They did end up doing this and it was wonderful!!!
After this we then walked a short ways to my appointment with my surgeon at the Chiari Institute. His nurse came in first and asked a whole bunch of question regarding my symptoms due to tethered cord. These questions regard the lower half of your body including: bowel and bladder function, the pelvic region, legs and feet. Some areas have pain, some do not work efficiently, some are numb or weak, and others still are just fatigued. We waited a little while and then my doctor came in. It was a much shorter appointment than last time because I had already seen him and had a neurological exam with him. He said he is hopeful that this surgery should help me greatly with the lower half of my body. It does not help everyone and there is a chance that I will not improve, but he said for my personal case he is hopeful that it will elevate some, if not all, of my lower body symptoms.
He said that the surgery would be about 3-4 hours long and I would not need to go to the ICU (intensive care unit) after the surgery. We estimated that I would be in the hospital about 3 days. After that I just couldn't have anything to eat or drink after 11 pm and had to wash my body with a surgical scrub.
Friday, June 27, 2014
Thursday, June 26, 2014
New York Preparation
Last week was crazy with everything that needed to be done before we left for New York on Sunday. I had lots of appointments last week and even more phone calls to make!
My New York Neurosurgeon ordered a CT scan of my cervical spine (neck) to check on my fusion. I got the prescription via email from him and scheduled the CT scan right away for a few days later. Unfortunately for some silly reason they would not take that prescription simply because the doctor prescribing it was out of state. I then had to go get a prescription from my neurologist in Chicago in order to get it done in time for New York. Thankfully this ended up working out! I got the scan done and then waited to get a disk to bring with me for my neurosurgeon to look at.
I then went to the podiatrist to get my left AFO (ankle-foot orthotic) casted and to get a checkup done on my other AFO. Like I said in my last time I updated I LOVE my AFO. I can't wait to pick up the second one in 2-3 weeks! I do not even have to make an appointment with him to pick it up; I will just drop by anti me after it comes in to pick it up. I do not need to continue seeing him unless there is an issue that arises or I have any questions.
The final appointment I had was with a new primary care provider (PCP).
My New York Neurosurgeon ordered a CT scan of my cervical spine (neck) to check on my fusion. I got the prescription via email from him and scheduled the CT scan right away for a few days later. Unfortunately for some silly reason they would not take that prescription simply because the doctor prescribing it was out of state. I then had to go get a prescription from my neurologist in Chicago in order to get it done in time for New York. Thankfully this ended up working out! I got the scan done and then waited to get a disk to bring with me for my neurosurgeon to look at.
I then went to the podiatrist to get my left AFO (ankle-foot orthotic) casted and to get a checkup done on my other AFO. Like I said in my last time I updated I LOVE my AFO. I can't wait to pick up the second one in 2-3 weeks! I do not even have to make an appointment with him to pick it up; I will just drop by anti me after it comes in to pick it up. I do not need to continue seeing him unless there is an issue that arises or I have any questions.
The final appointment I had was with a new primary care provider (PCP).
Friday, June 13, 2014
AFO's, Endocrinology Upadate, Sinus Infection, and Autonomic Neurology Follow Up
So I am just a little behind on updating! I have been very busy as my husband and I just moved out of our apartment into our very first house a couple of towns away. We are now much closer to his work and in a bigger city than my college town. Of course the closing to the house did not go as smoothly as we had hoped and there were numerous things we had to do before we could officially close on the house and finally move in. We were able to get into the house a week ago and are still working on unpacking. We also did not have internet until Wednesday, so that made doing an update difficult as well. I have no work today and am having a lazy day at home with no appointments, so I figured I would take the time to do a long update on all of my medical changes and appointments that I have had in the last month or so. I will also try to get to an update on New York and my upcoming tethered cord release surgery shortly.
One of the last updates I posted was about my appointment with a podiatrist. He had casted my right foot for an ankle-foot othotic (AFO). It took about 3.5 weeks for my AFO to come in since they get them custom made in Arizona. I have had it for 3 weeks now and I absolutely LOVE it. At first it was difficult to walk, drive, and use stairs in, but I have gotten used to it and actually prefer wearing it. Driving was particularly difficult because I cannot bend my ankle at all in the AFO. I have to use my thigh muscle to push down my entire leg instead of flexing my ankle and foot. Stairs were the hardest for me though! Going up stairs was ok as long as I used the railing, but I kept getting my toes caught on the edge of a step and trying to fall down the stairs. I have finally figured it out and can now go down the stairs without tripping! The AFO has helped not only my foot and ankle to be in the correct position and prevent injury, but it also has made my knee and hip feel better. When you stabilize a lower joint it helps to take stress off of the upper joints. This is a great benefit and I cannot wait to get my second AFO done on my left foot. Shoes have been a challenge with my AFO though... I normally wear a 8.5 normal width shoe, but with the AFO I need a 10.5-11 double wide shoe! I got some sandals from Kohls, but with the address change from the move they have yet to get here. I would also like to get some gym shoes/athletic shoes, but neither Payless or Shoe Carnival has any wide enough. I think I am going to try ordering some extra wide shoes from Zappos online. It is also difficult right now because I do not have an AFO on my left foot, so I need two different shoes. I have just been shoving my right AFO into my poor size 8.5 gym shoes. I took out the insole that comes in the shoe and unlaced it part of the way, so this has given me just barely enough room. I go next week on Wednesday back to the podiatrist for a follow up on how I am doing with the AFO I have and to get a mold made for the left AFO. It will be about 3-4 weeks after that that I will get the other AFO.
I had a follow up appointment with my endocrinologist after I had started my thyroid medication. It takes about 6 weeks for the levels in your blood to even out enough that the blood can be tested to see if the current dose is too high, too low, or just right. It turn out that my current dose is working well, so I will keep on this dose for another 3 months and then go back and get retested. I have had more energy with this medication and have not been quite so cold (which is a sign of underactive thyroid). The only issue I have been having with this medication is changes in my menstrual cycle. This is starting to become problematic as I have multiple symptoms of pre-menstraul syndrome (PMS), but my actual menses is extremely delayed. Hormonal changes make my autonomic dysfunction symptoms worse, so this is the reason this particular symptom is affecting me so much. When we get back from New York for my surgery I will make an appointment with an endocrinologist in my new home town to address this issue. I do not want to have to drive nearly an hour to see the endocrinologist I was seeing since I was not overly impressed with him anyways.
The other large medical issue I have had since I last updated is that I had a sinus infection. This is the first sinus infection that I have had since my sinus surgery two years ago. I got some sort a virus (flu, cold, or something) and I recovered from that some fine with the help of a couple extra liters of IV saline so that I did not get overly dehydrated, but then about 9 days after I had first gotten sick I was still blowing green/brown mucous out of my nose and still had a shallow wet cough. I also had sinus pressure and pain, particularly on the right side of my face. I went to the immediate care since my ENT is about an hour from our old apartment. I wish I would have gone to the ENT, because it was difficult to get the urgent care doctor to listen to me! I have had so many sinus infections in my life that I know exactly when I have one and how to treat it. She agreed that I had a sinus infection, but did not want to give me the antibiotic that works for me. Most doctors us an antibiotic called Amoxicillin to treat sinus infections. This antibiotic does not, and never has, worked for me. It does not get rid of the infection and is useless for me to take. Well, she had difficulty believing this, but after a significant debate I convinced her to give me an antibiotic called Augmentin. This antibiotic is stronger, and therefore has a higher risk to cause serious GI side effects, but it is the antibiotic that works best for me. In the end she got tired of listening to me, so she wrote a prescription for a 10 day course of Augmentin twice a day. I started to feel better about 2.5 days into the course of the medication and by about 5 days on Augmentin I felt back to normal, though you always have to finish a course of antibiotics when they are given to you so that the bacteria does not grow back and become resistant to antibiotics. I am hoping that switching my allergy shots to every 3 weeks instead of every 2 weeks did not allow my sinuses to get irritated again. I don't think this is the case because I have not had an increase in allergy symptoms, but we will see. If I get another infection I will make sure to get an appointment with my ENT so we can get a CT of my sinuses and see what is going on, but for now we are going to just hope it was a fluke and I go another two years without an infection.
I called the geneticist that I am on the wait list for that is an EDS expert out of Chicago (well Park Ridge technically for those of you in Chicagoland) as I have been on the wait list for 6 months and have not heard about scheduling an appointment yet. The woman I spoke with said that they are no where near being close to scheduling an appointment for me and that it will probably be next summer before I get an appointment. From everything I have heard this doctor is worth the year and a half wait, but I am not a very patient person so waiting is not my favorite thing to do! I will call back in December when I will have been on the wait list for a year and see where we are at then.
I ended up cancelling my follow-up appointment with my orthopedic surgeon for my wrist. He is over an hour away from my old apartment and it was during finals week. My wrist is back to being absolutely pain free. I now how exercises and tools from the occupational therapist that I can use if my wrist starts acting up again. I also have a prescription anti-inflammatory medication from my orthopedic surgeon that I can take when any of my joints get injured or are acting up.
Overall, I have not been feeling overly fantastically recently. I saw my autonomic neurologist yesterday just for a follow up. I see him about 3 times a year just to make sure that he can do a neurological examination and other physical examinations to make sure nothing changed. We are going to leave all of my medications the same for now since they are keeping my vitals stable. He said a probable reason for not feeling well, aside from the stress of the move, the upcoming surgery, and my wedding in just over a week of course, is the weather. If you live in Chicagoland, or any part of the Midwest for that matter, you know that the weather is extremely variable right now! It keeps going from hot to cold, from rainy to sunny, and then back again! This messes with my autonomic dysfunction as well as my pain levels. My head in particular and my blood pressure just have not been cooperating. I hope that the weather will start to settle down soon so that I start feeling better!
I have an appointment with a gastroenterologist on July 3rd right after we get back from New York. I am hoping that he will be able to help me sort out my nausea, reflux, constipation, and stomach pain. He was recommended to me by another POTS patient, so I hope he is as good as she thinks he is!
Sorry for such a long gap in updates! I will try to update more frequently and I will absolutely make sure to make frequent detailed posts about my appointments and surgery in New York. I will make a separate post shortly to update on the preparation for New York.
One of the last updates I posted was about my appointment with a podiatrist. He had casted my right foot for an ankle-foot othotic (AFO). It took about 3.5 weeks for my AFO to come in since they get them custom made in Arizona. I have had it for 3 weeks now and I absolutely LOVE it. At first it was difficult to walk, drive, and use stairs in, but I have gotten used to it and actually prefer wearing it. Driving was particularly difficult because I cannot bend my ankle at all in the AFO. I have to use my thigh muscle to push down my entire leg instead of flexing my ankle and foot. Stairs were the hardest for me though! Going up stairs was ok as long as I used the railing, but I kept getting my toes caught on the edge of a step and trying to fall down the stairs. I have finally figured it out and can now go down the stairs without tripping! The AFO has helped not only my foot and ankle to be in the correct position and prevent injury, but it also has made my knee and hip feel better. When you stabilize a lower joint it helps to take stress off of the upper joints. This is a great benefit and I cannot wait to get my second AFO done on my left foot. Shoes have been a challenge with my AFO though... I normally wear a 8.5 normal width shoe, but with the AFO I need a 10.5-11 double wide shoe! I got some sandals from Kohls, but with the address change from the move they have yet to get here. I would also like to get some gym shoes/athletic shoes, but neither Payless or Shoe Carnival has any wide enough. I think I am going to try ordering some extra wide shoes from Zappos online. It is also difficult right now because I do not have an AFO on my left foot, so I need two different shoes. I have just been shoving my right AFO into my poor size 8.5 gym shoes. I took out the insole that comes in the shoe and unlaced it part of the way, so this has given me just barely enough room. I go next week on Wednesday back to the podiatrist for a follow up on how I am doing with the AFO I have and to get a mold made for the left AFO. It will be about 3-4 weeks after that that I will get the other AFO.
I had a follow up appointment with my endocrinologist after I had started my thyroid medication. It takes about 6 weeks for the levels in your blood to even out enough that the blood can be tested to see if the current dose is too high, too low, or just right. It turn out that my current dose is working well, so I will keep on this dose for another 3 months and then go back and get retested. I have had more energy with this medication and have not been quite so cold (which is a sign of underactive thyroid). The only issue I have been having with this medication is changes in my menstrual cycle. This is starting to become problematic as I have multiple symptoms of pre-menstraul syndrome (PMS), but my actual menses is extremely delayed. Hormonal changes make my autonomic dysfunction symptoms worse, so this is the reason this particular symptom is affecting me so much. When we get back from New York for my surgery I will make an appointment with an endocrinologist in my new home town to address this issue. I do not want to have to drive nearly an hour to see the endocrinologist I was seeing since I was not overly impressed with him anyways.
The other large medical issue I have had since I last updated is that I had a sinus infection. This is the first sinus infection that I have had since my sinus surgery two years ago. I got some sort a virus (flu, cold, or something) and I recovered from that some fine with the help of a couple extra liters of IV saline so that I did not get overly dehydrated, but then about 9 days after I had first gotten sick I was still blowing green/brown mucous out of my nose and still had a shallow wet cough. I also had sinus pressure and pain, particularly on the right side of my face. I went to the immediate care since my ENT is about an hour from our old apartment. I wish I would have gone to the ENT, because it was difficult to get the urgent care doctor to listen to me! I have had so many sinus infections in my life that I know exactly when I have one and how to treat it. She agreed that I had a sinus infection, but did not want to give me the antibiotic that works for me. Most doctors us an antibiotic called Amoxicillin to treat sinus infections. This antibiotic does not, and never has, worked for me. It does not get rid of the infection and is useless for me to take. Well, she had difficulty believing this, but after a significant debate I convinced her to give me an antibiotic called Augmentin. This antibiotic is stronger, and therefore has a higher risk to cause serious GI side effects, but it is the antibiotic that works best for me. In the end she got tired of listening to me, so she wrote a prescription for a 10 day course of Augmentin twice a day. I started to feel better about 2.5 days into the course of the medication and by about 5 days on Augmentin I felt back to normal, though you always have to finish a course of antibiotics when they are given to you so that the bacteria does not grow back and become resistant to antibiotics. I am hoping that switching my allergy shots to every 3 weeks instead of every 2 weeks did not allow my sinuses to get irritated again. I don't think this is the case because I have not had an increase in allergy symptoms, but we will see. If I get another infection I will make sure to get an appointment with my ENT so we can get a CT of my sinuses and see what is going on, but for now we are going to just hope it was a fluke and I go another two years without an infection.
I called the geneticist that I am on the wait list for that is an EDS expert out of Chicago (well Park Ridge technically for those of you in Chicagoland) as I have been on the wait list for 6 months and have not heard about scheduling an appointment yet. The woman I spoke with said that they are no where near being close to scheduling an appointment for me and that it will probably be next summer before I get an appointment. From everything I have heard this doctor is worth the year and a half wait, but I am not a very patient person so waiting is not my favorite thing to do! I will call back in December when I will have been on the wait list for a year and see where we are at then.
I ended up cancelling my follow-up appointment with my orthopedic surgeon for my wrist. He is over an hour away from my old apartment and it was during finals week. My wrist is back to being absolutely pain free. I now how exercises and tools from the occupational therapist that I can use if my wrist starts acting up again. I also have a prescription anti-inflammatory medication from my orthopedic surgeon that I can take when any of my joints get injured or are acting up.
Overall, I have not been feeling overly fantastically recently. I saw my autonomic neurologist yesterday just for a follow up. I see him about 3 times a year just to make sure that he can do a neurological examination and other physical examinations to make sure nothing changed. We are going to leave all of my medications the same for now since they are keeping my vitals stable. He said a probable reason for not feeling well, aside from the stress of the move, the upcoming surgery, and my wedding in just over a week of course, is the weather. If you live in Chicagoland, or any part of the Midwest for that matter, you know that the weather is extremely variable right now! It keeps going from hot to cold, from rainy to sunny, and then back again! This messes with my autonomic dysfunction as well as my pain levels. My head in particular and my blood pressure just have not been cooperating. I hope that the weather will start to settle down soon so that I start feeling better!
I have an appointment with a gastroenterologist on July 3rd right after we get back from New York. I am hoping that he will be able to help me sort out my nausea, reflux, constipation, and stomach pain. He was recommended to me by another POTS patient, so I hope he is as good as she thinks he is!
Sorry for such a long gap in updates! I will try to update more frequently and I will absolutely make sure to make frequent detailed posts about my appointments and surgery in New York. I will make a separate post shortly to update on the preparation for New York.
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