Hip Surgery

 Wow I am way overdue on an update on my hip! It has been a crazy month, that is for sure! My husband and I moved into our new fixer upper house here in Cincinnati. It is not our first home we have owned, but it is our first fixer upper! It has been so much fun to work on the house, but also extremely time consuming! Then my brother moved in with us! I am so excited to have him with us and get to spend so much time together! We haven’t lived together, or even in the same city, for about 8 years so I am beyond thrilled he is here! I also started my summer semester for grad school. I am taking a 5-week intensive neuroscience class, so that has been tons of work on top of my other two classes! All that to say that I have been incredibly busy since my hip surgery!

The surgery itself went extremely well! It was done at a Children’s hospital and they were just exceptional! It was a relatively quick procedure, about 2.5 hours, and they did not find anything that they did not expect to find. They were so accommodating for my service dog Reilly as well!

The surgeon did not end up needing to remove any bone from my femur or pelvis bone, which is wonderful. He did not expect to need to, but we were not 100% sure until he opened me up. If he would have had to take of bone it would have been a longer and harder recovery. He did have to anchor down the cartilage, but we expected that. The cartilage was torn away from the bone, so he basically pinned it down. In addition to anchoring the cartilage he trimmed off the dead pieces of the cartilage. When a tear happens the edges of the cartilage get ragged and began to die. Overall it was a very straightforward surgery and the doctor was very pleased with how it went!

I woke up in recovery and got to my room with no issues. The pain was very minimal and I was feeling pretty good! My hip was more sore and stiff than painful. I did not take any of the strong pain medications that they offered me. I was instructed to take muscle relaxers for 5 days after the surgery and Tylenol for a week. I did this as instructed, but I did not take anything stronger than that! It was a huge relief to not be in a significant amount of pain.

I, unfortunately, have to be on crutches. Even though there is no pain the surgeon wants to give the joint capsule a chance to heal. He had to open the join capsule, which is a sack that contains all of the cartilage and fluids that make up the hip joint, so there is always a chance that this capsule could become damaged if you do not let it heal for an adequate amount of time. I thought it would be two weeks that I would have to be on crutches, but it turns out it will be almost 6 weeks. There was a slight miscommunication with the surgeon’s office regarding the amount of time I would be on crutches, so I was disappointed by that. I still have another 1.5 weeks left on crutches and I am so ready to be done with them!!!! I am looking forward to the day that I can be rid of them for good! I was on them for about 3 months about 6 years ago, so it was very much like riding a bike in the sense that I got back in the swing of using them very quickly.

I go back to the orthopedic surgeon next Friday, so he will do an evaluation then and hopefully clear me to wean off the crutches and start physical therapy back up. I will let you all know how that appointment goes and will be updating about another surgery I have coming up as well!

I leave you with an adorable photo of my service dog Reilly and I in recovery after the surgery

 

Mobility Service Dog Harness

As most of you know I have a mobility service dog name Reilly. He is a 3-year-old golden retriever that I have had since December of 2014. Service dogs are not required to wear any kind of gear stating that they are service dogs, but many handlers choose to mark their service dogs as such in some way because it causes less questions, fewer accesses issues, and makes life easier. I have always chosen to have Reilly marked in some way for these reasons.

I have always used a vest for Reilly in order to identify him as a service dog, but I chose to get a mobility harness for him so that he can provide more support for me. I got his harness from DD Photo and Design who sells on Facebook. The woman who runs the site and makes the harnesses is named Amanda and she has fantastic customer service! She offers many different options and colors, so there is something to fit everyone’s needs!

I am going to take a quick moment to put a disclaimer out there! These numbers are not concrete and ultimately you and your vet should decide if you dog is large enough, healthy enough, and old enough to do mobility work, but these numbers are a rough estimate to go by. A dog who is expected to do light mobility work, such as counter balance and momentum pulling, needs to be at MINIMUM 30% of you weight and 30% of your height (at the shoulders). For heavy mobility work, such as bracing, your dog should be at MINIMUM 50% of your weight and 40% of your height. This would mean if you weigh 150 pounds and are 5 foot 6 inches tall your dog should be at least 75 pounds and be 26.5 inches tall to the the shoulder. That being said I would not use a small dog for mobility work even if you do weigh only 100 pounds! Additionally, your dog needs to be cleared by a vet to do mobility work and is not normally physically ready for mobility work until around their second birthday.

That being said Reilly is tall enough, old enough, and weighs enough to do heavy mobility work for me. This harness will allow him to do more momentum pulling and be more comfortable while doing his job. 

Here is what Reilly's new harness looks like on him. 

 

And here are a couple of photos of the harness off of him.

 

There are numerous features that you can choose from on these harnesses. First, his harness has a Y-front which provides more stability and greater comfort for him as it distributes the weight better than a straight front harness does. I also chose to get a detachable handle. The handle is fed through a couple of rings and clips onto the harness itself. This allows me to remove the handle if he needs to fit  into a tight space, if he will be laying down for an extended period of time, or if I am using my wheelchair and won't needing the handle for a while. It is just convent to have the option to remove the handle if I want to.  I also chose to get a padded handle. The handle has handle, and all of the harness actually, is lined with teal fleece. This just makes the handle all the more comfortable! The next upgrade I made was to have a double buckle put on. This means that I don't have to try to have him step into one side and pull on the other. It has buckles on either side, which means that I just put the front piece between his legs and buckle it on either side of his belly. The harness does have velcro on these straps as well to adjust them. 

The final upgrade I decided to make was cosmetic. I chose to have SERVICE DOG embroidered on either side of the harness itself. This is just one more way to make sure that people know he is a service dog and hopefully prevent people from coming up and trying to pet him! I also chose the teal color, but Amanda has a bunch of colors to choose from! I thought the teal looked nice on him though!

I chose to get a cape that snaps onto the back of his harness. The cape has zippered pockets which is incredibly useful to store things in! The red patches on either side of the cape say "Mobility Service Dog" and above that it says "DO NOT PET". On the top of the cape There is a large black patch that says "Not all disabilities are visible" along with a small "DO NOT PET" patch. I really wanted the not all disabilities are visible patch because I am constantly questioned as to why I have a service dog since I do not visibly have a disability and people always think that I am training him because, again, I don't look disabled. On the handle of the harness itself I have two patches Velcroed together that have stop signs on them and say "Service Dog Do Not Pet". I wanted to have something on the harness itself that said do not pet so that if I chose not to put the cape on him that message was still clearly displayed. All of his patches came from an Etsy shop called DannyLuannEmbroidery and the woman who made the harness sewed the patches onto the cape for me!

This harness was definitely an investment, but will last Reilly the rest of his working career and I may be able to use it on my next service dog if he/she is of a similar size to Reilly and since it is adjustable there is a degree of flexibility to the sizing of the harness. The harness itself was $90 with all of the upgrades, the cape was $30, and all of the patches were $50. Like I said it was an investment, but one that will be well worth it! If you are looking for a mobility harness I would definitely recommend you check out DD Photo and Design on Facebook!

Botox Injection for Gastroperesis

I was able to get my botox injection done today to see if it helps my gastroparesis. The botox is injected into the pylorus muscle, which is the muscle that acts as a valve to let food out of the stomach into the intestines. The goal is that by injecting the botox into this muscle it relaxes and allows the food to pass faster through my stomach. This will hopefully mean that  I will have less nausea, abdominal pain, and feeling full very quickly. We will not know if this worked for another few days because there is swelling of the muscle from the injections before it ultimately relaxes.

This procedure is done through a scope. The scope is passed through your mouth, down your throat, and into you stomach. The needle is then passed through your stomach into the pylorus muscle. Thankfully this procedure is able to be done under twilight sedation, so you continue breathing on your own and do not need a breathing tube. There are virtually no risk to this procedure, so that was very reassuring!

The procedure went very well and I only had a bit of low blood pressure, which is completely normal for me! I have been able to eat a small meal and am feeling pretty good! My stomach is sore on the left hand side, which is where they did the injection. I am going to take some anti-inflammatory medication (a prescription that is similar to Aleve) to help decrease the swelling a little bit because as the night goes I am becoming more and more sore.

Like I said we will know in a few days if this procedure worked and if it does I will be contacting Cleveland Clinic to hopefully procedure with surgery to permanently open the pylorus muscle up since the botox is only a temporary solution (it last about 6-12 weeks typically). They also took some biopsies from my stomach to test for another condition, so I will get the results back from that by the end of the week and provide more information on that!

My hip surgery is still set for next Tuesday (5/17), so I am excited for that so that I can get my hip feeling better again!

Hip MRI Results and Surgery Date

I saw the hip specialist here in Cincinnati about a week ago in order to get the results of my MRI. It shows that I have a complete acetabular labral tear with detachment in my left hip. The acetabular labrum is the ring of cartilage that is between the head of the femur (thigh bone) and the pelvis. This is what we thought was the issue with my left hip and the MRI confirmed this.

I will have to have surgery to fix the labral tear and detachment. He will go into the hip arthroscopically, meaning through multiple small incisions, and fix the tear. The surgeon will remove any of the tissue that is dead or beyond repair and repair any of the tears that are able to be stitched back together. This is a relatively minor surgery and is the same type of procedure I have had done on my wrist and knee. I have done very well with both of those procedures, so I am not too concerned about this one!

The one other concern that he did note on my MRI is that I have a moderate degree of anteversion. Anteversion is another way to say that my hip is turning inward toward my other leg. This is perfectly normal in young children, but disappears in 99% of children by adolescence. While I am not that old (22) I am past adolescence, so it is not considered normal for me at my age! This is a condition that is not uncommon in people with EDS and I only seem to have it on the left leg. Since the degree of anteversion is moderate and the surgery to correct the anteversion is very involved (it involves shaving down bone in the femur and pelvis) we have decided to not treat the anteversion at this point. If after the labral tear repair I am still having hip pain then we will discuss if we need to address the anteversion at that point, but the surgeon is fairly confident that once we fix the labral tear I will have relief!

I have already been to see my primary care doctor and have been declared “medically optimized” for surgery. This just means that he does not see any reason why my health should cause complications during or following the surgery. I have had a number of surgeries in the past (six under general anesthesia and multiple under twilight sedation) and have always done really well. I need medication to prevent vomiting after surgery because that is one negative reaction I have to anesthesia, but we know this ahead of time so we can medicate for it before the vomiting starts (about 4 hours after surgery)! There are a few other minor things that we need to watch out for like making sure I stay well hydrated, ensuring the anesthesiologist des not dislocate my jaw when they put the breathing tube in, and making sure that my neck does not get bent too far backwards because of my cranial cervical fusion, but in general I do really well with surgeries!

This surgery will be in about 3 weeks on Tuesday May 17 at 11:45 a.m. Of course this date and time may change, but as of right now that is the big day. I will let you guys know if anything changes, but prayers that everything goes smoothly would be greatly appreciated!

Primary Care Appointment

I had an appointment last week with my primary care physician (PCP). I had a wonderful PCP when we lived in the most recent town we were in in Illinois, so I was extremely sad to leave him! Thankfully my geneticist used to live in Cincinnati (where we recently moved to) and still has connections here! He was able to give me a recommendation for a PCP who is knowledgeable about Ehler's-Danlos Syndrome (my connective tissue disorder). This doctor was not taking new patients, but since my geneticist referred me to him he was willing to take me on!

I had a few questions for him, so the appointment was timed perfectly. Firstly, I have been taking a muscle relaxer for about 8 months now for the extreme tightness in my neck down into my shoulders.  The muscles that run down from my neck into the top of my shoulders get as hard as rocks (literally, not an exaggeration). This can be caused by many of my conditions (chiari, EDS, and instability) and is extremely uncomfortable for me. When I saw my genetesict last fall he recommended that I start a muscle relaxer called Flexiril to attempt to alleviate some of this tension. This helped a little bit, but every time I saw a new doctor or therapist they still were amazed at the amount of muscle tension that I held in my neck and shoulders. I asked my PCP if I could increase the dosage of the Flexeril, but he said he was not comfortable increasing my dosage. Flexeril can cause electrical changes in your heart and that risk increases as the dosage increases. Instead he recommended that I change to a different muscle relaxer called Baclofen. He started me out on 10 mg once a day and I will increase that dosage to twice a day and then finally three times a day over the course of three weeks. I am currently on 10 mg twice a day and it has helped so much!!! My muscles are not constantly tight and do not feel like rocks! It is so nice to have some of that tension reduced! One note of caution is that my doctor did say that if I had not had my cranial cervical fusion (screws from my skull down to my second cervical vertebrae) that he would absolutely not recommend a muscle relaxer since I am an EDSer. This is because the tightened muscles are actually helping to hold your cranial cervical joint stable and when you relax those muscles the instability that many of us with EDS have gets worse.

I also asked him to check my thyroid and my electrolytes. My thyroid is considered to be borderline hypothyroid, so I like to monitor my levels and make sure they do not tip into the range where I would need to be medicated. My levels were still borderline, so for right now we are good to go! I get my electrolytes checked because a medication I take (florinef) depletes my potassium and thus I need to take prescription potassium. Low or high potassium can cause serious issues with your heart, so it is essential to monitor my levels to make sure we are not over or under supplementing my potassium. Thankfully my electrolyte levels all look good! I was able to take my orders for the blood work down to the cancer center and have the labs drawn through my port. It is incredibly convenient that the cancer center is located in the same office as my PCP because then I do not have to drive to a separate office just to get my labs down.

As I mentioned in my last post that I also was able to get a recommendation for for a doctor who will do the botox injection into a muscle in my stomach (see this blog post for more info on that), so I was incredibly thankful for that! I will see that doctor next week, but I am excited to try the botox inject and see if I get a symptom relief from my gastroparesis. I also got a prescription from the PCP for a brace that my physical therapist recommended that will hopefully help support my spine and improve my neck pain and discomfort. I will write a blog post more on that when I receive the brace and have a chance to try it out!

I believe that those are all of the major this that we discussed at my primary care appointment. I will go back and see my PCP in 3 months. In the mean time I have a few appointments coming up in the next week or so, so I will update on those as they happen. I also had an appointment for my hip so I will write an update on that ASAP. Thanks as always for following along on my journey!

Cleveland Clinic Gastroparesis Appointment

Last week we went back to the Cleveland Clinic to meet with their gastroparesis specialists for the second time. We had been waiting on insurance to cover a test that they had ordered (a smart pill which measures time, pH, and pressure of your entire GI tract), but insurance would not cover this test and deemed it experimental. Since they wouldn't cover this test we had to go back up to Cleveland to come up with a new care plan without those results.

It is a four hour drive each way to Cleveland, which makes it quite a long day!!! My service dog Reilly DESPISES the car, so he was left at home with my sister-in-law. We live next door to my brother-in-law and sister-in-law right now, so to Reilly they are family and he is very comfortable with them. It is still hard on the both of us to be separated since we are together at ALL other times. I feel like I am without my shadow when I don't have Reilly because I do not go anywhere without him  (even the bathroom normally!!!).

We were able to meet with both the gastroenterologist and a general surgeon who works with the GI doctor. The gastroenterologist raised the dosage of a medication (Remeron) that is supposed to help my stomach empty. It is not a "traditional" medication used to treat gastroparesis, but he uses it with many of his patients who have gastroparesis in conjunction with autonomic nervous system dysfunction. The idea is that this medication will help the nervous system to effectively tell the stomach to empty. We doubled the dose and so far I have not noticed much of a difference in my symptoms since increasing the dose, but it has only been a few days so I will give it some more time!

After having a conversation with the GI doctor we decided that the gastric neurostimulator is not the route for me right now. This device is what we had discussed as the next step previously, but we decided at this appointment that this is actually not a good next step right now. One main issue with the gastric neurostimulator is that it is not MRI comparable. This means that I would never be able to have an MRI. Having EDS and needing MRI on joints and my brain and spine on a fairly regular basis this is not ideal. The alternative to an MRI is a CAT scan. Now CAT scans themselves are not a bad thing, but they do expose patients to radiation. Having a few CAT scans is no big deal, but if I had to have multiple CAT scans a year the radiation would definitely add up over the years and this is a huge concern.

Another issue we have with the gastric neurostimulator is that the success rate is only 50-60%. That is not very good odds in my book! The surgeon also said that since I have chronic constipation he thinks my intestines may be slowed down as well as my stomach so the success rate drops even further. It is a major abdominal operation to place the device and then an even more complicated operation to remove the device if it does not work. The surgery to take it out includes the surgeon removing a piece of your stomach because the nodes on the stimulator become embedded in your stomach. Obviously this is not an ideal situation!

Now all this aside, this does not mean that someday this device will be a good next step for me. Right now I am actually gaining weight and eating much more than I have in the past. I still have symptoms and discomfort, but in general my GI status has greatly improved. For all of those reasons the benefits  do not outweigh the risks at this time.

Since we decided we are not pursuing the gastric neurostimulator at the moment we discussed alternative options with the surgeon. After discussing a few different things we decided that the next thing we will try is injecting botox into the pyloric sphincter. The pyloric sphincter is the valve that allows food to pass from your stomach into your intestines. By injecting botox into the muscle that forms this sphincter the muscle relaxes. Once the muscle relaxes the hope is that food will pass easier from the stomach into the intestines since it does not have to work to get past the sphincter. If the botox does work I may notice results immediately or it might take a few days before I notice any results. Even if the botox does work, however, the results are only temporary. The general surgeon says that most of his patients only see results for about 6-8 weeks at the maximum. For this reason the botox injection is not considered a long term solution, rather it is used as a diagnostic tool. If I respond well to the botox injection then that tells the surgeon that I would be a good candidate for a surgery called a pyloroplasty (more on that in a moment). The botox injection is done via a scope, so there are no incision in the abdomen. There are very few risks of the botox injection itself, besides the risks of the anesthesia of course! For this reason we decided that there is no harm in trying the injection and seeing if it helps.

Since Cleveland Clinic is so far away for us to drive to the doctors and I decided that I would try to find a doctor to do the botox injection in Cincinnati. I had an appointment with my primary care doctor at the beginning of this week, so I asked him if he knew of anyone. He sent me the name of a doctor that will do it, so I set up an appointment with this GI doctor for Monday the 25. We will schedule the procedure to do the botox at this appointment.

If the botox injection provides relief from symptoms then we will most likely preceded with a surgery called a pyloroplasty. A pyloroplasty essentially does the same thing as the botox injection, but it is permanent. During the pyloroplasty the pyloric sphincter is cut so that the valve is widened. This provides a permanently opened pyloric sphincter. The Cleveland Clinic is one of the only places in the world that can do this surgery endoscopically. This means the surgery can be done through a scope down the throat rather than through incision made on the abdomen. The recovery is faster, the risks are lower, and there is no scarring if the surgery is done this way. For this reason we will travel up to Cleveland if we decide that this surgery is the best next step for me. The risks are very low and there are no long term complications with this surgery. We will not know whether or not I am a good candidate for this surgery until after we do the botox injection.

That was a very long update I know, but it was an extremely informative appointment! I will update as to when the date for the botox injection will be after the appointment I have schedule on the 25th.

Hip Appointment and Arthrogram

Since working with a new physical therapist in Cincinnati her and I both realized that there is something wrong with my left hip. We are not sure when or how I injured it, but with EDS that is quite common. My joints all pop out of place regularly and sometimes they do not go back into place correctly and can catch and tear.  Activity really seems to aggravate the hip (walking, stairs, etc.) and the pain is deep in the hip joint. We started trying to treat the pain conservatively and tried doing different exercises to see if it would improve, but it has not improved. After a few weeks of this treatment the PT recommended that I see an orthopedic surgeon in order to get my hip assessed.

I was able to get an appointment with an orthopedic surgeon at Cincinnati Children's hospital (they accept patients into their thirties, which is fantastic for me!). At that appointment he took some x-rays and did a full assessment of both hips. The x-rays looked great, which we expected them too, but based off of the amount of time I have had pain in the hip, the fact that the pain has not gotten any better, and the specific positions I have pain in the hip he recommended that we do further testing to see what is going on.

The test that he wanted done is called an arthrogram. An arthrogram is done when contrast is injected directly into the joint and then an MRI is done. I have never had one of these, so it was new experience! I was taken into an operating room (a sterile environment), my hip was numbed, and a needle was injected directly into the hip using x-ray guidance. This allowed them to put IV contrast directly into my joint so the soft tissue structures of the hip would show up much clearer on the MRI than they would if IV contrast was used.. While he had the needle in my hip they also injected steroids into the hip. The steroids can be used as a treatment for joint pain because they reduce the inflammation in the joint and can decrease pain. Sadly the steroid injection did not seem to help much at all.

The arthrogram itself was not painful necessarily because of all the local anesthesia that they used, but it was definitely uncomfortable! I could feel pressure and tugging as the needle was in the joint and when the procedure was completed my hip was VERY stiff. The doctor inserted so much fluid into the hip that it was extremely stiff and sore. I was on low activity for 48 hours, so we just used my wheelchair since we had family in town and were going out to a museum. Part of my connective tissue disorder means that I bruise severely and easily, so the point that the needle was inserted into the hip is definitely bruised and still sore a week later.

I will go back to the orthopedic surgeon next Wednesday (4/13) to get the results from the arthrogram. If it is a tear in the cartilage like we think it is we will then schedule surgery to repair the tear, but we will not know that until after I get the results from the arthrogram.