Surgery Date and Description

I just wanted to give a quick update with the date and details of my upcoming craniocervical revision surgery.

My surgery will be this coming Friday February 17th at 1:15 p.m. It was supposed to be the following week, but it was moved up for logistical reasons on the side of the hospital. The projected hospital stay is 4-5 days but I can almost guarantee that I will not be in the hospital that long! I have never stayed more than two nights in the hospital after a surgery and I have had much more invasive surgeries than this one, so I can't imagine I will be in the hospital any longer than two days this time. My hope would be to come home on Sunday, but they may force me to stay until Monday because they don't like to discharge on weekends.

The surgery is booked to be about 4 hours long, which in the grand scheme of things is relatively short. Both my original decompression surgery and my first craniocervical fusion were about 7 hours long, so this is significantly shorter than those. Obviously this time may increase if the surgery is more difficult for any reason, but 4 hours is their rough estimate.

Now for a brief explanation of the surgery. I will post the same picture that I posted in my last update just to help explain the surgery.

The hardware on the left side of my skull will be disconnected from the hardware that is in my cervical spine. The skull hardware will then be removed from my skull completely.

The ideal place to attach hardware to is the center of the back of your skull. This piece of bone was removed from my skull during my Chiari decompression surgery to make room for the cerebellar tonsils (part of the brain) that was herniating into my spinal column. So since this piece is missing my original fusion was done next to this spot, slightly further over than what is shown in this picture. Well as you move laterally out from the center of your skull it gets thinner and thinner. We have no choice but to move over since the spot that my first fusion was done did not fuse properly. We hope that this will be alright, but it may prove challenging for the surgeon to get the screws solidly into the bone since the bone will be thinner.

Once the new screws and hardware are secured to my skull the rods connecting this new hardware to the cervical hardware already in place will be reattached. After this a substance called bone morphogenetic protein (BMP) will be laid down. This substance helps to induce the formation of new bone over the hardware. Ultimately I need to form bone over the hardware to secure it in place. This new bone formation is what causes the fusion to be solid.

My nerves will be monitored throughout the entire procedure because they will be working so close to my spinal cord and brain stem. This will help them ensure that my fusion holds my head and spine in the correct alignment and that they do not damage any nerves during the procedure.

I have done all of my pre-op appointments over the last couple of weeks including getting blood work done, having a physical, and meeting with anesthesia and everything should be good to go for Friday. I am just working on getting all of my school stuff taken care of before then, but honestly I could not be more ready for this surgery! My energy is extremely low, I have lots of headaches, and my neck is bothering me more and more. My body has been telling me something is wrong neurologically for the past 8 months and just this past month or so I have felt like my body is exhausted. I am so grateful that my surgeon got me in so quickly, but that in itself is worrying. I was scheduled so quickly because he is treating my case as an emergency case. He is worried that the loose screws may come loose and dislodge. My brain stem is also under pressure again because of the instability present in my craniocervical joint. This could cause permanent damage, more than it did prior to my last fusion, so we need to act quickly to avoid any further damage. My surgeon is having to cancel many of his surgeries due to there being no rooms available at the hospital (it is a children's hospital and sadly this flu season has been extremely difficult on very young children in my area), but he refuses to cancel mine because he sees how critical my case is.

All prayers and well wishes are much appreciated and I will be sure to update as soon as I can!

Loose Craniocervical Fusion

So I have failed miserably at updating everyone recently! I had finals for school (which went very well!), family came in town for Thanksgiving, we went out of town for a friend's wedding and Christmas, and I had the stomach flu (TWICE).

So unfortunately I have some not so great news to update with. As I had updated a couple of months ago I have been having headaches since May of last year. They came on out of the blue and we were not sure why they developed or where they came from. Last I had left everyone we thought that my intracranial pressures (ICP) were high and were pursuing testing to determine whether or not venous stenting would be an option for me. This procedure would have been done if there was a venous abnormality present causing my ICP to be high. After having a special type of MRI done, called an MRV, to check my veins the vascular surgeon did not see any reason why my pressures would be high and saw no vascular abnormalities of any kind.

At this point we were left with two options. Go back to our original plan of pursuing more invasive testing of ICP or continue delving a little deeper to see if there was something else going on that we hadn't considered. Now this local neurosurgeon trained under my wonderful neurosurgeon, Dr. Rekate, in New York and is one of the only surgeons to perform both vascular surgeries and more traditional neurosurgeries. After he heard my neurological journey and symptoms through the past several years one point really stuck out to him: I had immense symptom reduction after my craniocervical fusion. Despite needing another neurosurgery (my tethered cord release) I was like a completely new person after my fusion. My symptoms were dramatically reduced and I was able to function again as a "normal" human being. I had no headaches after this surgery and my neurological symptoms like ringing in the ears, pins and needles, weakness in my limbs, and double vision almost completely disappeared too. With all this in mind this neurosurgeon decided that he wanted to run further tests to check on my fusion and ensure that it was still doing well. We thought that since I had such a sudden reemergence of symptoms that it was possible that something was wrong with my fusion.

The problem with this theory is that I have had numerous MRIs recently and they have all showed that my fusion looks great! The first and easiest test to check on my fusion was a flexion and extension x-ray. This is an x-ray taken with my neck bent all the way until my chin touches my chest and then another x-ray is taken with my neck bent backwards as far as it will go. The two images are then compared to determine whether or not there is a shift of the hardware of my fusion. Ideally no movement of the hardware should occur, which is exactly what we saw on the x-rays.
Now after the x-ray we were left with two more tests that we wanted to run. Thankfully we were able to have both of the scans done at the same time which helped to decrease the time we had to wait. The first scan we did was another MRI. The doctor wanted a special series of images on the MRI machine to view my venous structures in more detail. After reviewing this scan, he is even further convinced that I do not have any venous abnormalities and that that is something we can rule out.

Next, he wanted to have a CT scan done of my fusion to view it in greater detail. A CT scan takes a number of different x-rays taken at various angles and combines them together to form a computer generated image of the part of the body you want to see in greater detail. While MRIs are good to view soft tissue structures, like the brain and cartilage, it is not ideal for viewing my fusion because the metallic hardware shows up as bright spots on the images and can obscure the structures around it. The CT scan, on the other hand, is my better at showing us my fusion in detail because it shows the bony structures and the hardware is much clearer on this type of scan.

Thankfully this CT scan did provide us with some answers that we needed!

First, let’s start with a picture of what my hardware looks like:

(You are looking at the back of a skull and the first three cervical vertebrae of your spine)

This is the type of hardware that the new, local neurosurgeon uses, which is similar to, but not exactly the same as, what Dr. Rekate uses. I have screws (the larger purple pieces at the bottom of the piece of hardware) that go into the top cervical vertebrae, C1, as well as the second vertebrae, C2, as is shown in the picture. I also only have two screws (the small purple eyelets on the skull) in each side of the hardware that attaches to my skull instead of the three shown in the picture. Bone is supposed to form around the rods that go down from the skull to the cervical vertebrae, which further stabilizes the fusion and ensures the craniocervical joint is fully stabilized. Also, how fitting is it that my hardware will be purple?!?! For those who don't know purple is my absolute favorite color!

With that visual and explanation you can better understand what the results of the CT scan told us. The CT scan showed that on the right side all of the screws were firmly in place and that bone was formed completely and securely over the entire rod that goes down from my skull to my vertebrae. This side looks perfect and exactly what we would expect to see from a secure, solid fusion. The problem, however, occurs when we look at the left side of my hardware. The screws in my cervical vertebrae are solidly fused and secure, but the screws in my skull, on the other hand, are another story. These screws are fairly short, at only 6 mm long, which is about ¼ of an inch. These screws should be completely through the bone of my skull and the head should be flush with the bone. This is how they are on the right side, but on the left they are only 3mm in the bone. This means that they have loosened and are halfway out of the bone they should be in. In addition to this there is no bone formation on the rod as there should be. This means that the hardware is not solidly fused and the left side of the craniocervical junction is unstable.

We do not know why the fusion has failed on that side and the screws have come loose. I could have bumped my head and loosened the screws or they could have just wiggled loose over time. We believe that there was good bone formation initially, but for any number of reasons the bone has been reabsorbed (the body just breaks it down and metabolizes it) and the screws have wiggled loose and are not holding my skull securely to my spine anymore.

Now my symptoms are not presenting the same as they did when I needed my first fusion. The largest complaint I have had is headaches that are present on the top of my head. They feel like my head is going to burst and the pressure is incredibly intense. I have also had some blurry vision and ringing in the ears. These symptoms all lead us to think that I have pressure issues. The headaches and pain I had prior to my initial fusion were all in the back of my head, not up on the top and involved far more neck pain and discomfort. We are not 100% sure why my symptoms are presenting differently this time. There are a couple of guesses we have 1) my symptoms are not from the fusion becoming unstable and this is a completely separate issue to what is actually causing my symptoms (even if this is the case I still need to address the fusion not being solid because the loose screws in my skull are at risk for dislodging completely from the bone) 2) The nerves on the back of my head never regained function after my last surgery so I have a numb spot on my head. The symptoms that I previously felt on the back of my head may be being referred up towards the top of my head. 3) since the instability is isolated to a higher location, only my skull vs my skull and my vertebrae, and it is only on one side of my head I am feeling it differently than before. I do not have the neck pain and fatigue that I did before because half of my fusion is still solid and my brain stem is not being nearly as compressed as it was previously.

Given those thoughts we cannot know which is truly the reason for my new and differing symptoms. At this point we have to address the fusion being loose because like I stated before it is hazardous to leave loose screws in. My brainstem may also begin to be compressed again by the instability, which is not something we want to go through again. This will be addressed by performing a fusion revision. The hardware on my skull on the left will be removed and replaced with a new hardware and reconnected to the vertebral hardware. The vertebral hardware will not be touch and the right side won’t be touched wither.

The question of whether or not there are additional issues going on, specifically issues with my intracranial pressures, is something that we will have to table until after I heal from this fusion. If my symptoms are resolved after I have healed from the surgery we will know that the loose hardware was the cause, but if they do not then we will pursue further testing of my ICP. I will go into that more in another post, but unfortunately we cannot do the ICP test during this surgery and subsequent hospital stay as we are worried that the post-surgical pain I will be in will give us inaccurate numbers and thus cause the test to be invalid.

Well now that I have written you all a novel of an update I will write a subsequent post shortly with the information about the surgery and details pertaining to that for those that did not want to make it through my novel to just get the date and essential details! Thank you as always for all of your prayers and well wishes, they mean the world to my family and I!

Vascular Neurosurgeon and Headache Update

After discussing in depth with my phenomenal neurosurgeon we have decided to go a different route than what I had expected to deal with my headaches! Since the medication to decrease my intracranial pressure (Diamox) has been helping so much we are almost certain that my pressures are high even though my lumbar puncture did not show extremely elevated pressures. We know my headaches are worse at night and the lumbar puncture was done in the morning, so that was one reason that the readings from that test came back borderline and not high. Given all of these factors we now have two options. The traditional treatment would be to place a shunt to drain excess cerebrospinal fluid from my brain/spine into my abdominal cavity where it would be reabsorbed. A shunt is device that will drain this fluid to reduce the pressures in my brain. Prior to this treatment I would need to have more monitoring to ensure that my pressures are as high as we believe they are.

The alternative to this procedure, which is a very new idea that has very little research done on it, is a venous stenting. They are finding that in some EDS patients the veins in our brains are clogged. This clog causes a blood to back up and raise the pressures in your brain. A stent can be placed in these veins to open up the blood flow allowing the pressures to come back down in your brain. This is a  new procedure that there is little research done on it in EDS patients. There is one doctor at the University of Virginia that is doing this procedure on EDS patients and he is having great success. Here is an article about that doctor and his use of stents in patients who have EDS.

http://www.uvaphysicianresource.com/venous-stent-procedure-providing-relief-to-some-ehlers-danlos-patients/

The good news for me is that there is another doctor, a vascular neurosurgeon, who is starting to look into this procedure at Cincinnati Children's Hospital. I am located not even 15 minutes from there, so obviously that is extremely convenient for me! To make things even better this doctor trained with my phenomenal neurosurgeon Dr. Rekate in New York, so he is very familiar with EDS and Chiari. I am not yet sure if I even have venous insufficiency or am a candidate for this procedure. What we need to do first is to get a full brain MRI as well as an MRV. An MRV is a special kind of MRI that looks specifically at the veins. This will show us if there are any clogged veins or not. If there are clogged veins then I will go ahead and set up a consultation with this doctor in order to develop a plan and hopefully schedule a procedure to place the shunts. I will be having the MRI/MRV done tonight and then the results will be sent to the doctor and I should hear back from him in a couple of days. I will also send a copy of the disks up to Dr. Rekate in New York so that he is able to view the scans himself as well. I have had to be off of the Diamox, the medication that lowers my intracranial pressure, for the whole weekend so that we can see what my brain looks like with the high pressures and my headaches have been severe all weekend! This is just one more confirmation that it is my pressures that are high that is causing the headaches. I am looking forward to being able to resume the Diamox tonight after the scan!

The stent procedure is a much less invasive surgery than a shunt surgery and is much less risky. Shunts can become infected and often need to be revised, meaning surgery is done again to replace or fix parts of the shunt. They are not an ideal solution, but if that is the route we have to go then I will pursue that option as well. The stent procedure carries many fewer risks and complications, so please pray that this is the solution we are able to pursue.

I have some other updates coming up as well, but I wanted to update on this as we now have more information. I will update again after I hear from the vascular neurosurgeon following my scan tonight and we are able to begin to develop a plan.

Headaches after Fusion and Decompression

As I mentioned in my last post I have been having terrible headaches the past several months. They are different than the headaches I had before my brain and neck/spine surgeries. They are on the top and feel like the top of my head is going to pop off! I did not have any headaches for about 2.5 years after my decompression revision and fusion, where they made more room for the back of my brain and fused my skull to the top two vertebrae in my neck. I am extremely luck and feel very blessed that I did not have any headaches because this is simply not the experience of many patients! That being said, these headaches kind of blindsided me because I had gone for so long without them that I was caught off guard by them!

After a visit with my primary care physician (PCP) we decided to order the CINE MRI, as I discussed previously, which is different than a traditional MRI because it looks at the flow of the fluid that surrounds your brain and spinal cord (cerebral spinal fluid-csf). My PCP thought that it appeared that my CSF flow was blocked by what appeared to be scar tissue from my previous surgeries. We sent the disk off to my neurosurgeon in New York so that he could take a look at it. He does not think that scar tissue build up is the issue and feels that there is something else going on.

In order to find out what more is going on he wanted to do a lumbar puncture. A lumbar puncture is exactly what it sounds like: a needle is used to puncture your lumbar (lower back) spine. They are able to do lots of labs with  test, but for me they wanted to see what the pressures of my CSF were. Your CSF pressure is the same throughout your brain and spinal cord, so they can measure the pressures through this lumbar puncture. My pressure was 16, which is borderline high. It not super elevated, but it is higher than you would expect to see.

Since my pressures were elevated somewhat we decided to start a medication to reduce the intracranial pressure. This medication is called Diamox and must be started very slowly. After building up to the full dosage of this medication (250 mg 3x a day) it has been helping significantly with my headaches! This is great news.... but there is a side effect that has come with this medication (of course it couldn't be that easy!).  I have been having horrible pins and needles in my hands and feet that have been occurring since I have gotten on this medication.  This is an extremely painful sensation and I say it feels like little elves are shoving tiny needles into my hands and feet. The good news is that we do not think this symptom will continue after I discontinue the medication, but the bad news is that we think this side effect will continue for as long as I take the Diamox. Of course we must now decide what to do about this since this side effect is becoming intolerable.

It is looking like I am going to have to discontinue the medication, which of course is not ideal because it is helping my headaches so much! I have a Skype appointment with my neurosurgeon in New York tomorrow afternoon so hopefully we will get more information from him then! Please pray for us to get guidance and peace for whatever the next step may be.

Primary Care Appointment and Other Updates

I had a primary care visit a couple weeks ago (yes I know I am behind on updates again!)  and had many things to discuss with him!

First off, when I had a chest x-ray before one of my surgeries they noted a “sudden change in course of the port tubing possibly as it enters the right internal jugular vein, raising the possibility of kinking". Now my port is still working just fine, but since the port leads directly into my heart any irregularities or concerns need to be treated with urgency. We don't think anything is wrong and it probably just a benign cyst, but we will still check it out. I met with a new general surgeon here in Cincinnati since the doctor that put it in is back in Illinois where we used to live. She again indicated that since the port was working well that she did not see any reason to replace the port, which would be the only course of action to remedy the kinking.  If it stops working because the kinking gets worse only then would we need to replace the port. She did take some x-rays because she wanted a different view than the ones that were done before my surgery, but unfortunately my collar bone was in the way of the cyst and kinking in the tube   that she wanted to see, so we were not able to get the view that she wanted to see. For now we are just going to leave everything be and hope and pray that my port continues to keep working!  

Next, I had had a biopsy of my stomach taken when I had a Botox injection done at the beginning of May. This biopsy was to check for something called mast cells. Mast cells are the cells in your body that respond to allergens. Newer research is showing that mast cells play a role in wound healing and regulating the immune system, but these functions are still not well understood. There is a disorder that is a common comorbid condition with EDS called Mast Cell Activation Syndrome (MCAS). The mast cells in people who have this disorder are not too numerous, rather they are overactive. They respond to things they shouldn’t and respond too severely to things that they should respond too.  It is a very complicated disorder that is not well understood. MCAS can cause GI symptoms, flushing, headaches, rashes, unexplained anaphylaxis (severe, life threatening allergic reaction), and breathing related issues, among other symptoms.  I also had a blood test and did a 24-hour urine connection to check for markers of MCAS. The blood test almost always comes back normal unless a person is having an MCAS reaction at that exact moment the blood is drawn, so we were not surprised that this came back normal for me as well! The 24-hour urine collection also came back as normal, which was a surprise! The biopsies came back with mild-moderate mast cell reaction in my stomach and small intestine. At this point we are not treating the mast cells in any way and they think I have a very mild case of MCAS. The reactions could worsen and I get older and I have had some clinical signs of MCAS in the past such as unexplained anaphylaxis and unexplained rashes/reactions, but for now I am just happy that I do not have one more thing to add to my list!

Now both of those things were very positive updates, but unfortunate I also have a few not so good updates. I have been doing physical therapy for my hip after my hip surgery back in May. My physical therapist is quite pleased with the strength of my muscles and the range of motion of the joint, but unfortunately I am still having pain within the joint. I have pain walking and doing stairs. The physical therapist has tested some different exercises and movements to see if she can pinpoint why the hip is hurting and based on those results she really believes that it is coming from deep within the joint. The surgery I had was very minor and was to repair the torn cartilage in the joint. We did not address the anteversion (turning inward of the hip) because that is a much more invasive surgery and we were not sure if it was necessary, so I am really hoping that is not the problem now :( I was not set to see the orthopedic surgeon until August 24^th, but my physical therapist wanted me to try to get in with him sooner. I called today and was able to get an appointment with him next Wednesday, August 3^rd. I hope he is able to give some insight into why my hip is still hurting and help us to figure out what we can do about it!

The other issue I have been having is severe headaches for a few months now.  I have not had any headaches since my craniocervical fusion 2.5 years ago. The headaches from my Chiari and craniocervical instability were always in the back of my head and down into my neck, but these headaches are on the top of my head. It feels like a ton of pressure and my head is just going to explode! I brought this up to my primary care doctor who also happens to be a headaches specialist. He was concerned that my intracranial pressures are high. Since these headaches are a new occurrence he thinks that my increased pressures are due to scar tissue build up. I have quite a bit of scar tissue in that area from two spinal/brain surgeries that went through the same incision. He ordered a MRI that looks specifically at the CSF (Cerebrospinal fluid), which is the fluid that flows constantly around your brain and spinal cord. When its flow is blocked, for any reason, it can raise the pressure within your skull called the intracranial pressure. The MRI was called a CINE MRI. The results came back and it shows that my CSF flow is blocked in both the front and back of my craniocervical junction (where the head and neck meet). I sent the disk to my neurosurgeon in New York and he is having some technical issues trying to view the disk, but hopefully he will be able to get back to me soon with his thoughts on the images and how he thinks we should proceed.

I think that is all for now! Please pray for my hip and my headaches and that the doctors know how best to help me! Sorry for the long delay between updates! I am almost done with my summer classes and I get about 2 weeks off, so I am looking forward to a much needed break!!!

Gastroparesis Surgery- Pyloromyotomy

I had a surgery done on my stomach last week (6/22) to hopefully help my gastroparesis. Gastroparesis is a condition that causes the stomach to not empty fast enough. For me my stomach empties at 50% the speed of someone with "normal" digestion. Now it is important to note that some have better or worse gastric emptying scans and those numbers do not necessarily coordinate with symptoms.

I had had a botox injection into the pylorus muscle, which is the muscle that forms the sphincter between your stomach and intestines, back at the beginning of may. This test allowed us to see if I had symptom reduction by relaxing the pylorus. The botox injection helped me greatly, but it is only a temporary solution (normally 8-12 weeks, but can last up to 6 months). I had a greater appetite, decreased pain and bloating, less nausea, and could eat larger meals without as many symptoms after the injection.

Since the botox injection went so well I contacted my team up at Cleveland Clinic. The two doctors I see there, a GI specialist and a general surgeon, recommended that I undergo a surgery called a pyloromyotomy. This surgery permanently opened the pyloric sphincter. It is essentially a permanent version of the botox injection. Cleveland Clinic is one of the only places in the world to do this surgery endoscopically. This means that I do not have any incisions on the outside of my abdomen because they did the entire surgery through a tube and cameras down my throat into my stomach.

I went through a full day of testing and appointment at Cleveland Clinic the day before my surgery. I had blood work, EKGs, a chest x-ray, and appointments with anesthesia and my surgeon's nurse.  This was an all day project, but we were able to get it all done and were ready for surgery the next day!

They were very delayed on the day of my surgery, which was not much fun so I did not go back into surgery until about 4:30 in the afternoon. The procedure itself was only about 90 minutes, which is pretty short! They were able to intubate me without dislocating my jaw, so I was super happy about that! I did have some issues waking up from the anesthesia though, which I unfortunately remember! I was shaking uncontrollably; Not small shivers, but violent shaking. They were able to give me some medicine in my IV to control the shaking, but it took a short while to kick and that felt like an eternity. I also was coughing fiercely when I came out of anesthesia. This was probably because they had a breathing tube down my throat as well as the endoscopic equipment to do the surgery, so my throat was irritated form having all of the tubes in it. I was coughing so hard that they were concerned that I was going to throw up. Obviously they did not want me throwing up right after stomach surgery! They were able to get that calmed down after a while as well.

I got to my room that evening and was sadly placed on an NPO diet (stands for Nil per os in latin). which means that I could not have nothing by mouth. I was feeling pretty crummy because I was not even allowed to take my medications. The next morning I was taken down for something called an upper GI series. During this test I had to drink two different kinds of contrast and then they took x-rays in a number of different positions. This test was to ensure that there were no leaks in my stomach or intestines from where he made the incision to cut the pylorus muscle. It was not a painful test, but it was uncomfortable because I was not allowed to take my blood pressure and heart rate medications, so I was dizzy and feeling weak.  We made it through the test and I got to go back up to my room and rest for a little while.

Finally the nurse came in and said that my upper GI series looked good, so I was able to start on a clear liquid diet. A clear liquid diet is exactly what it sounds like: a diet that consists of only liquids you can see through. Jello, juice, frozen ices, broth, water, and popsicles are the staples of a clear liquid diet. It may not sound exciting, but after over 36 hours with NOTHING to eat or drink I was quite excited for a glass of water and popsicle!

I was discharged later that afternoon to go home since I was doing so well. I did not have any pain, but did have a fair amount nausea. When I was discharged I was able to start on a full liquid diet. This diet includes any liquids and any solid that is liquid at room temperature. I can have: pudding,  ice-cream (with no chunks or pieces), yogurt with no fruit in it, sherbet, creamy soups blended to have absolutely no chunks in them, and everything I could have on the clear liquid diet as well. I have since added in applesauce and smoothies with no chunks in them to help me have a little bit more variety. I have been using a lot of protein powder in my smoothies and milkshakes to help get some more protein into me. Needless to say after my popsicle and jell-o lunch the first thing we did when I was discharged was go get a milk shake! I will have to be on the full liquid diet for two weeks, but honestly I am so nauseated right now that I have no desire for solid food.

The nausea has been really intense for me. I have a nausea medication called phenegran, which has been taking the edge off a little bit. It is not working that well and the other typical medication used to treat nausea, zofran, does not help me at all. I spoke with my surgeon's nurse today and she is going to call in a prescription for something called a scopolamine patch. This is a small patch that is put behind your ear to help with nausea and vomiting.  I use this patch when I have surgery to help prevent the nausea and vomiting I have after anesthesia, so we know they work well for me. I am waiting on a call from the pharmacy to tell me they are ready, so I am hoping I can get those on and start getting some relief from the nausea. The nurse also recommended I do an IV infusion of fluids every day instead of the every other day that I typically do. Due to the nausea and not eating and drinking enough they are very concerned I will become dehydrated. We are doing our best to prevent that and I am extremely grateful that I have my port to help me stay hydrated!

I will go back in about 6 weeks to see both my gastroenterologist and my general surgeon to check up on how things are doing. We will not know if the surgery worked until I can begin eating solid food again. I would appreciate prayers for this nausea to stop soon!

Surgery Day

So with the crazy schedule I have had recently I have been behind on updating! We are actually up at Cleveland Clinic right now and I am waiting to go back for surgery! I am having a procedure called a pyloroplasty on my stomach. This procedure permanently opens the valve at the bottom of your stomach to help allow food to pass through easier. I will post a more full update later, but I wanted to let everyone know I am headed back into surgery. This is number 8 under general anesthesia and I always do remarkably well, so we are not concerned. My two requests are that they control nausea and vomiting and that they do not dislocate my jaw! As long as they do those two things I will be happy!  I will be in the hospital for at least one night and we are hoping to go home tomorrow.

I will update as soon as I can! As always prayers are appreciated!