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!
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