I have been having horrible, unbearable headaches since last Thursday. On this day I went out and did things outside of my home, and I think I pushed my self too hard. We went to the ER late Saturday night and the ER doctor decided to admit me with a suspected spinal leak. They did a lumbar MRI to check for a spinal leak, but we didn't get the results back until Monday. Thankfully most of the nurses (except for the last nurse) were absolutely amazing!!! The doctors not so much.... They didn't know what to do with me so I just kind of sat around until Monday. The MRI did show a collection of fluid, but not enough to make them think it was a large enough leak to do an intervention on. At that point we were just doing symptom management and decided to send me home. It was a wonderful hospital room and almost felt like a hotel, so thankfully it was not too bad of a stay.
My neurosurgeon is hopeful it will heal on its own with bed rest and lots of hydration (IV and oral). Although it was frustrating that the hospital wouldn't do anything, looking on the bright side they were able to control my pain and nausea well. I was sent home with two different pain medications and have a prescription for nausea medications already.
My surgeon also suggested I put gauze on my incision and than put an ace bandage around my abdomen/pelvis to provide extra pressure on the wound. One of the pain medications I picked up is called Fioricet, which is specifically for headaches and has been working quite well in combination with my muscle relaxers.
The hospital refused to remove my stitches (long story I don't agree with), so I have an appointment tomorrow morning to get that done. Besides that, I have an appointment with a new endocrinologist next Monday, so I need to get all of my records (lab work, ultrasounds, etc) sent over to her office. Please say a prayer that she is the right fit for me as going to new doctors makes me anxious. I also got one of the two prescriptions that the GI doctor prescribed filled. This medication is meant to be taken twice a day, so please pray that that works!
Tuesday, July 8, 2014
Saturday, July 5, 2014
Gastroenterology Visit
The other day I had an appointment with a new GI doctor. Digestive issues are something that I have struggled with for many years, but we have never been able to find any answers for why. I had a bunch of GI tests ran about four years ago, but that GI doctor just said it was irritable bowel syndrome because he couldn't figure out what else it would be.
I first met with the GI doctor's resident who was very sweet and knowledgeable. He took down all of my symptoms, asked me what I had tried in terms of medications and diet modifications, and what my main concerns were. He then went and spoke with the doctor and they came back in about 10 minutes later.
I had stated that my main concerns at this point are nausea and nutrition/lack of appetite. He knew about my autonomic dysfunction and connective tissue disorder (EDS), so we discussed how those can effect my digestion. He wants to be careful that we don't just assume my digestive issues are from these chronic conditions and miss another potentially harmful issue that is separate from my other conditions. For that reason he is ordering an ultrasound of my pancreas to rule out any issues with it and an upper endoscopy. I still need to schedule the ultrasound, but the upper endoscopy (EGD)is scheduled for July 17th. It is a quick, painless procedure during which they put a camera down your throat to look at your esophagus, stomach and small intestines. While he is examining these structures he will also take biopsies to check for a variety of conditions including celiacs disease and infections. It is done under twilight sedation which means that you are sedated enough to not remember anything, but are still breathing on your own. The test itself will only take about 10 minutes max.
I also got blood work done when I was there to check my nutritional status and a couple of other things. The lab at Rush wouldn't draw through my port, but I went up to the oncolocy and hematology floor and they were nice enough to do my blood draws through my port even though I am not one of their patients. I have not gotten the results back from those tests yet due to the delay caused by the 4th of July.
The doctor ordered me two medications: an IV nausea medication and an under the tongue, dissolving acid reducing medication. Sadly, I am having some problems with insurance for both of these, so I haven't gotten either one yet. Hopefully we will be able to figure out these things this week.
After all of these tests are completed and the results from the biopsies taken during the EGD come back I will have another appointment with the GI doctor and we can discuss what his findings were and what kind of interventions he will do.
This week I so far only have an appointment with a primary care physician on Monday to remove my stitches from my tethered spinal cord release. This should be quick and easy as well.
I first met with the GI doctor's resident who was very sweet and knowledgeable. He took down all of my symptoms, asked me what I had tried in terms of medications and diet modifications, and what my main concerns were. He then went and spoke with the doctor and they came back in about 10 minutes later.
I had stated that my main concerns at this point are nausea and nutrition/lack of appetite. He knew about my autonomic dysfunction and connective tissue disorder (EDS), so we discussed how those can effect my digestion. He wants to be careful that we don't just assume my digestive issues are from these chronic conditions and miss another potentially harmful issue that is separate from my other conditions. For that reason he is ordering an ultrasound of my pancreas to rule out any issues with it and an upper endoscopy. I still need to schedule the ultrasound, but the upper endoscopy (EGD)is scheduled for July 17th. It is a quick, painless procedure during which they put a camera down your throat to look at your esophagus, stomach and small intestines. While he is examining these structures he will also take biopsies to check for a variety of conditions including celiacs disease and infections. It is done under twilight sedation which means that you are sedated enough to not remember anything, but are still breathing on your own. The test itself will only take about 10 minutes max.
I also got blood work done when I was there to check my nutritional status and a couple of other things. The lab at Rush wouldn't draw through my port, but I went up to the oncolocy and hematology floor and they were nice enough to do my blood draws through my port even though I am not one of their patients. I have not gotten the results back from those tests yet due to the delay caused by the 4th of July.
The doctor ordered me two medications: an IV nausea medication and an under the tongue, dissolving acid reducing medication. Sadly, I am having some problems with insurance for both of these, so I haven't gotten either one yet. Hopefully we will be able to figure out these things this week.
After all of these tests are completed and the results from the biopsies taken during the EGD come back I will have another appointment with the GI doctor and we can discuss what his findings were and what kind of interventions he will do.
This week I so far only have an appointment with a primary care physician on Monday to remove my stitches from my tethered spinal cord release. This should be quick and easy as well.
Thursday, July 3, 2014
Tethered Cord Release Update
I am doing really well since my tethered cord release last Tuesday. I have no pain at all from it! I only took prescription pain meds for about four days and haven't needed any since then. I still occasionally take muscle relaxers for the muscle spasms, but not very frequently. The only post op issue I have is that I can't bend over yet. It is still too tight to bend and I am not allowed to lift anything over 5 pounds for a couple of weeks yet. I also need to lay flat as often as possible to prevent a spinal leak. Since the covering of the spinal cord was opened there is a high chance of developing a leak.
Post op I did very well in general. I started the prescription potassium pills because my potassium is low. I haven't noticed a difference symptomatically since starting that medication, but low potassium can be extremely dangerous (causes cardiac complications), which is why we monitor my electrolyte levels frequently. I just got my electrolytes checked via a blood draw today (not for my autonomic doctor, but for GI which I will write a separate post about), but I haven't gotten the results from that back yet. I will need to get my electrolytes checked again next Friday to see how I am responding to the prescription medication.
One issue that I have had before with anesthesia is that my close up vision gets blurry. I always have problems with distance, which is why I wear glasses, but reading is never an issue. For some reason anesthesia makes my vision blurry for reading. Thankfully it only lasts a couple of weeks and then goes back to normal. It is nearly gone now and is really just more of an inconvenience than anything.
An issue I had this surgery that I never had with my other surgeries is a dislocated jaw. From the moment I woke up I said that the inside of my left ear was really hurting. No one new why as there was no obvious marks or redness and the way I was positioned during surgery should not have caused that discomfort. Once I started trying to eat and realized it was painful to chew is when we realized that it was my jaw that was in pain, not my middle ear. I went back to my surgeons office after I had been discharged and he checked on it and said that it will just heal on its own. Thankfully it is only a little bit sore now and it seems like it should heal up just fine.
I go on Monday to a primary care physician to get my stitches removed. We opted for non-dissolvable stitches this time because my body does not dissolve them the way most people's do.
This is my incision right now. It is on the very bottom of spinal column and appears to be sunken in a little bit. This was taken right after surgery, so I will get another picture after the stitches come out. It does look less red and irritated now than it does in the picture.
I will write another update very soon on the GI appointment that I had today. Thank you all for your continued prayers and support!
Post op I did very well in general. I started the prescription potassium pills because my potassium is low. I haven't noticed a difference symptomatically since starting that medication, but low potassium can be extremely dangerous (causes cardiac complications), which is why we monitor my electrolyte levels frequently. I just got my electrolytes checked via a blood draw today (not for my autonomic doctor, but for GI which I will write a separate post about), but I haven't gotten the results from that back yet. I will need to get my electrolytes checked again next Friday to see how I am responding to the prescription medication.
One issue that I have had before with anesthesia is that my close up vision gets blurry. I always have problems with distance, which is why I wear glasses, but reading is never an issue. For some reason anesthesia makes my vision blurry for reading. Thankfully it only lasts a couple of weeks and then goes back to normal. It is nearly gone now and is really just more of an inconvenience than anything.
An issue I had this surgery that I never had with my other surgeries is a dislocated jaw. From the moment I woke up I said that the inside of my left ear was really hurting. No one new why as there was no obvious marks or redness and the way I was positioned during surgery should not have caused that discomfort. Once I started trying to eat and realized it was painful to chew is when we realized that it was my jaw that was in pain, not my middle ear. I went back to my surgeons office after I had been discharged and he checked on it and said that it will just heal on its own. Thankfully it is only a little bit sore now and it seems like it should heal up just fine.
I go on Monday to a primary care physician to get my stitches removed. We opted for non-dissolvable stitches this time because my body does not dissolve them the way most people's do.
This is my incision right now. It is on the very bottom of spinal column and appears to be sunken in a little bit. This was taken right after surgery, so I will get another picture after the stitches come out. It does look less red and irritated now than it does in the picture.
I will write another update very soon on the GI appointment that I had today. Thank you all for your continued prayers and support!
Tuesday, July 1, 2014
Tethered Cord Release Surgery and Recovery
Surgery was scheduled for 8:30 on Tuesday morning, so we had to arrive at about 6:30 in the morning. I was only allowed to take my most important medications (fludrocortisone, Midodrine, and synthroid) that morning, which of course made me nauseated because I can't take medications on an empty stomach. We got there and checked in very quickly I got changed and then went through all of the questions that the nurse asks you. Sadly, I had a very rude nurse! They always get mad at me for not starting an IV because I would rather use my port. I told her that I was not going to let her start an IV until after I spoke with the anesthesiologist, who said he would use my port and would only need to start on peripheral IV since they need two access points. The nurse got very rude then and told me that my doctors were wrong and that I needed to let her start it. I still refused and I am glad I did because then I only had to get stuck once, I was already under anesthesia when they put in the peripheral IV, and they took my peripheral IV out as soon as I got out of the recovery room because they still had my port that they could use for fluids and medications. It was nice to get it out for two reasons: one it was causing discomfort and pulling every time I moved and two I sleep on my side curled up in the fetal position which tends to set off the alarm because my IV gets kinked.
After the debate about my port all that we had left to do was wait. I signed a couple of release forms and talked to my anesthesiologist and my neurosurgeon briefly. At almost exact 8:30 they took me back into the OR. For some people this is intimidating, but I like it. Everyone is always so friendly and kind! They explained to me how I would be positioned and and what would happen during the surgery. After the resident gave the all clear they gave me a sedative (not even the anesthesia yet) and it took about 15 seconds to kick in and I don't remember anything after that!
From the point that I received the sedation until I woke up in the recovery room was a total of just under 4 hours. During this surgery they made a four inch long (approximately) incision in my lower back. The surgeon then removed part of my lower vertebrae (called a laminectomy) in order to gain access to my spinal cord. He then found the fatty pieces of connective tissue (called filum terminale) that were pulling my spinal cord down and attaching it to the spinal column. After he separated these fibers from the nerves he then carefully cut each one in order to relieve the tension on my spinal cord. After this he closed up my incision and I was sent to recovery!
Recovery was pretty smooth. The pain was well controlled through IV medications as well as IV nausea medications. I am prone to vomiting from anesthesia, so I was very happy that they were able to control my nausea. The recovery room nurse was extremely nice and helpful! We were there for a few hours until a room opened up for me on the neurological floor. Thankfully I did not need to go to the neurological intensive care unit for this surgery. My pain was well managed and it was a big difference to not have had surgery on my skull/brain! It is much more intense pain when my upper spine was involved than my lower spine. I as getting an IV pain medication, IV antibiotics, IV potassium, and IV phenegran (nausea med) for the first night until I switched over to oral medications.
The first nurse and the night nurse on the neuro floor were both very nice and sweet! The only issue we had is that my neurosurgeon specifically told me that I did NOT have to lay flat on my back after the surgery. Some surgeons require this, but my surgeon does not. I was fine until about 9 or 10 at night when the nurse told me I needed to be flat on my back for complete bed rest. At first I refused and they called a whole bunch of people and they all said I needed to be flat. Unfortunately I lost that battle and they put my bed flat. Up until that point I was doing ok, but I was in tears after they did that because the pain was awful! They felt so badly for me that they at least let me sleep on my side. When we spoke to my surgeon the next day he was really mad that they put me through that when he specifically said it was not needed. Other than that the night went well, except for the fact that you don't get a lot of sleep. My room was right outside the nurses station and they were LOUD and very disrespectful to those of us trying to sleep. I did not like the day nurse that I had Wednesday. She was rude and not helpful at all! Thankfully I was released that day, so I only had to deal with her until lunch timeish :)
Sorry for the delay in posting an update! I will post another update with my progress since being discharged. I have a very important appointment with a new GI doctor on Thursday, so please pray that that goes well and he is able to figure out why I have been having so many gastrointestinal issues!
After the debate about my port all that we had left to do was wait. I signed a couple of release forms and talked to my anesthesiologist and my neurosurgeon briefly. At almost exact 8:30 they took me back into the OR. For some people this is intimidating, but I like it. Everyone is always so friendly and kind! They explained to me how I would be positioned and and what would happen during the surgery. After the resident gave the all clear they gave me a sedative (not even the anesthesia yet) and it took about 15 seconds to kick in and I don't remember anything after that!
From the point that I received the sedation until I woke up in the recovery room was a total of just under 4 hours. During this surgery they made a four inch long (approximately) incision in my lower back. The surgeon then removed part of my lower vertebrae (called a laminectomy) in order to gain access to my spinal cord. He then found the fatty pieces of connective tissue (called filum terminale) that were pulling my spinal cord down and attaching it to the spinal column. After he separated these fibers from the nerves he then carefully cut each one in order to relieve the tension on my spinal cord. After this he closed up my incision and I was sent to recovery!
Recovery was pretty smooth. The pain was well controlled through IV medications as well as IV nausea medications. I am prone to vomiting from anesthesia, so I was very happy that they were able to control my nausea. The recovery room nurse was extremely nice and helpful! We were there for a few hours until a room opened up for me on the neurological floor. Thankfully I did not need to go to the neurological intensive care unit for this surgery. My pain was well managed and it was a big difference to not have had surgery on my skull/brain! It is much more intense pain when my upper spine was involved than my lower spine. I as getting an IV pain medication, IV antibiotics, IV potassium, and IV phenegran (nausea med) for the first night until I switched over to oral medications.
The first nurse and the night nurse on the neuro floor were both very nice and sweet! The only issue we had is that my neurosurgeon specifically told me that I did NOT have to lay flat on my back after the surgery. Some surgeons require this, but my surgeon does not. I was fine until about 9 or 10 at night when the nurse told me I needed to be flat on my back for complete bed rest. At first I refused and they called a whole bunch of people and they all said I needed to be flat. Unfortunately I lost that battle and they put my bed flat. Up until that point I was doing ok, but I was in tears after they did that because the pain was awful! They felt so badly for me that they at least let me sleep on my side. When we spoke to my surgeon the next day he was really mad that they put me through that when he specifically said it was not needed. Other than that the night went well, except for the fact that you don't get a lot of sleep. My room was right outside the nurses station and they were LOUD and very disrespectful to those of us trying to sleep. I did not like the day nurse that I had Wednesday. She was rude and not helpful at all! Thankfully I was released that day, so I only had to deal with her until lunch timeish :)
Sorry for the delay in posting an update! I will post another update with my progress since being discharged. I have a very important appointment with a new GI doctor on Thursday, so please pray that that goes well and he is able to figure out why I have been having so many gastrointestinal issues!
Friday, June 27, 2014
Ronald McDonald House and Pre-surgical Appointments
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.
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.
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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