Wrist and Medication Update

I had my appointment with my orthopedic surgeon this morning. He said he is not 100% sure what is wrong. It is either a ligament tear or a cartilage tear. He gave me a new brace that is MUCH more comfortable than the temporary cast, and also less restrictive! I also need to take an anti-inflamatory (Aleve or ibuprofen) on a regular basis for two weeks and then I have an appointment in 2 weeks (8/13) to check in with him. We will talk about MRI's or other options if I am not in less pain at that point. The issue at this point is that the types of injuries take a very long time to heal, and with EDS (connective tissue disorder) I take even longer to heal. This could be a long recovery!

I heard back from my neurologist on Monday about medications. My blood pressure is getting better, but still too low. He wants me to increase the fludrocortisone to every day, up from 3x a week. Hopefully this will help even more. I will take some more readings and check back in with him in 1 week. I also have an appointment with him to check in on everything on 8/15. My heart rate is still not under control and I still have some other issues that are not being addresses. One thing at a time though, I am just so happy he is so willing to help!!!!

Worse than we thought...

Well my wrist is worse than we had thought. I went to the ER Thursday night after I couldn’t take the pain anymore. They took some x-rays and thankfully it is back in place, but they think there is some ligament damage. They put a temporary cast on to try to keep the bone from popping out of its socket. This has helped, but unfortunately has not stopped it. I have an appointment on Tuesday with my orthopedic surgeon’s assistant. He is the same doctor who set my wrist when I broke it when I was little. He also did my knee surgery a few years ago, both of my mom’s knees, and my dad’s right wrist, elbow, and shoulder. I’m looking forward to that; this temp cast is not overly comfortable!

Medication and Wrist

So I had a fantastic birthday weekend and am feeling pretty good. I am feeling much better with the fludrocortisone and am thinking I am about ready to up the frequency of that again. Currently I am at 3x a week. My dizziness is getting much better and I feel as if my blood pressure is too. I need to start keeping track of that again! My heart rate, however, is still not cooperating so we will see if he wants to add another medication for that.

Onto worse news… With the connective tissue disorder I have, EDS, my joints are weaker. I majorly subluxed (partially dislocated) my right wrist today. This is not unusual for me to sublux joints, but the bad part was that I could not get it back into the socket! It was out of socket for over 2 hours… OUCH! I am going to brace it for a couple weeks and take Aleve for the next few days and we should be fine.

I will email the doctor the end of this week so I will check back in the beginning of next week with an update on medications.

RUSH Neurology

My appointment with the neurologist from RUSH went way better than I could have ever asked for!!!!!!!!!!!! He asked so many questions about how I was feeling, what medical issues I have had, what tests have been done, basically everything and anything about me EVER!!!! He realized how serious this has been for me and was genuinely interested to look at the big picture and help me with not only the dysautonomia, but also with EVERYTHING else. He was surprised that there were a number of tests that had not been run. He speculated on some conditions that I may have, but wanted to run a bunch more tests to check on some things.

At this visit he did diagnose me with a connective tissue disorder called Ehlers-Danlos Syndrome (EDS). EDS is a hereditary disease. In people with EDS a protein called collagen that is essential to the strength of skin, joints, and muscles is not synthesized correctly. This makes these body parts more elastic and causes skin to stretch easily and bruise frequently and badly. Also joints are prone to dislocation, hyperextension, subluxation, and spraining. There is no treatment for this condition besides management and treatment of injuries. So far this has not caused me tremendous problems although my joints do pop frequently. My hips and my left elbow and left knee are the biggest issues for me right now. My right hip frequently gets “stuck” and I have to pop it back into it’s joint, my left elbow also gets “stuck” and I have to snap it back into place, and my left knee bends backwards. All of these are extremely painful, but in the grand scheme of things are not nearly as bad as other issues I have.

He ordered a brain MRI to be done since mine was way outdated and a thoracic spine MRI as well since I had never had one. On top of these scans he ordered autonomic dysfunction to figure out exactly what was going on with my heart rate and blood pressure. He talked about many other tests as well, but he wanted to start with these.

Both of the MRI’s came back completely normal, which was fantastic news! Then on July 5^th I went for the dysautonomia testing. This was not a fun day… First they hooked me up to electrodes to test how much I sweat. After this I had to do a couple of deep breathing exercises while monitoring my heart rate and blood pressure. The last test of the day was to do what is called a tilt table test (TTT). During the TTT I was strapped to a table and a base blood pressure and heart rate were established lying down. Then they tilt you upwards into a standing position. I failed this test MISERABLY!!! We expected I would fail, but not this badly. I lasted less than two minutes before they had to lower the table so I did not faint. My blood pressure dropped dramatically (down to 47/20) and my heart rate went up to 135 bbm. If we would have went even 20 seconds longer i would have passed out. This meant that I absolutely have dysautonomia, but we still do not know why I have this condition. To help find this out he ran multiple blood tests which were sent to Mayo clinic and some were ran at RUSH. I have not gotten these blood tests back yet.

He's still conflicted on how to treat this condition. He wanted me to start the fludrocortisone again. I conveyed my concerns, but he felt like this was still the best route to go. We agreed to start out on a much lower dose than I had been on previously. Last time I had tried this medication I was on 0.1 mg twice a day for 5 days and then once a day after that. This time around I started only taking it twice a week for one week and then three times a week for the next two weeks. That is where I currently am at and so far I have not been feeling great, but nowhere near as badly as I felt last time! We will just wait and see. I check back in with the doctor via email on July 29^th and we will reassess then.

My next appointment with Dr. Barboi is the 15^th of August. We will see what he wants to do next at that time. He is hoping that if we get my dysautonomia under control that my other symptoms will get better as well.

I will try to update this blog regularly now that I am up to date! This will be the place to get updates on me. I have fallen way behind on emailing you all and I apologize! 

Emergency Room

Well after my neurosurgery follow up appointment I sadly started to reject more of those internal stiches! I went in for an emergency appointment on that Friday feeling AWFUL!!!! The resident doctor lanced the abscess and started me on antibiotics. He debated whether or not to admit me, but decided to send me home to rest and if anything got worse to go straight to the emergency room at Loyola. I made it until Sunday and then was in so much pain, was lethargic and shaky, and just overall feeling crappy that we went to the ER. Well that took forever and the resident there ran some blood tests and did an exam. He did not know what was wrong and sent me home with some nausea medication (that did NOT work). I then went back to see my neurosurgeon later that week (Wednesday I think it was). He did not know what was wrong either. He said to stop the new medication that I was taking (the Fludrocortisone) just to see if that was causing my symptoms. Other than that he suggested I see the headache specialist at Loyola since he didn’t know what else to do for me. Well after a week or so I started to feel better, but was extremely discouraged that I was still feeling crummy and another doctor had given up on me.

I decided just to hold off for a couple of months and not see any doctors. I tried the fludrocortisone again at some point and again had an AWFUL experience with it. This made me think that the medication may have been a bigger part of my problem than the stitches rejecting.

At this point I knew I needed more help. I tried to contact a neurosurgeon in the area who is well known for Chiari, but he would not see me since I had already had the surgery. I then found a neurologist at RUSH University who specializes in autonomic dysfunction. I made an appointment with him for May 14^th, 2013. I will start with that appointment in the next post because there is a lot to talk about!

Surgery Follow Up and Dysautonomia

After I went home from my Chiari decompression surgery I spent A LOT of time just sleeping and healing. I was in a significant amount of pain and needed to take pain medication and muscle relaxers on a regular basis to maintain any level of comfort. I had my two-week follow up just after the New Year and at this point everything looked great. My stitches were dissolvable so he just checked the incision and made did a general check up. Obviously at this point we had no idea what symptoms had gotten better from the surgery and what had not. I scheduled an appointment to check up in mid-March. On this date in March I also had 2 MRI’s scheduled. One was to check the surgical site and one was of my lower back. The lower back MRI was looking for a tethered spinal cord. This is a condition in which the bottom of the spinal cord adheres to the spinal column. This condition can occur with Chiari and due to my lower back pain and intestinal issues we wanted to make sure that I did not have this.

            During early February I went to see what is called an electro-physiology cardiologist. This is a doctor that specializes in the rhythm of the heart. I had been having symptoms that include fast heart rate upon standing, low blood pressure, dizziness upon standing, and even occasionally fainting upon standing for a number of years. These symptoms were always just attributed to the Chiari, but as I researched it more these were a new set of symptoms associated with a different condition. This doctor was not very helpful and I did not care for him very much, but at least he provided me with the validity that this was a serious condition. He started me on a medication and said no testing was necessary. He diagnosed me has having a condition called autonomic dysfunction (also called dysautonmia). This is when the autonomic nervous system does not function properly for some reason. This means that all functions that the autonomic nervous system controls, functions that you are not even aware of, such as heart rate, digestion, respiratory rate, salivation, perspiration, and pupillary dilation are all affected. With dysautonomia all of these things are not monitored the way that they should be. Multiple things can cause this condition, but as of now we are still trying to figure out why I have this. We are not certain which type of dysautonomia I have as I am still undergoing testing for this condition (more on that later). So at this point I started the medication and decided we would just see how it went.

            Well that medication turned out to help a little bit, but not significantly. It was a medication called Midodrine that constricts the blood vessels in your legs so that when you stand up your blood pressure doesn’t drop so much. I started on 2.5 mg every four hours and then went up to 5 mg every four hours and finally I went up to 10 mg every four hours which is what I am currently. At this dose (which is the highest I can go on this medication) I am less likely to get dizzy standing up, but it does not help in the mornings and does nothing to address my racing heart rate. It was agreed at this point that we needed to add another medication to the mix. We decided to add Fludrocortisone (also called Florinef). This medication increases sodium levels and thus blood volume. This helps to maintain blood pressure upon standing up. I started this medication on 0.1 mg twice a day for five days and then went down to once a day after that.

            Right after I began the Fludrocortisone I went to the follow up appointment with my neurosurgeon. All was going well so far. I had weaned myself off of almost all pain medications and was using muscle relaxers only infrequently. I had the two MRI’s in the morning and then the appointment in the afternoon. The MRI’s went fine and we ended up getting into the appointment early. First we looked at the two MRI films and the surgery site looked great! There were no worries there and the surgeon felt as if he had created plenty of room for the fluid to begin flow better around my cerebral tonsils. The lower back MRI also came back clear. This was great, but now we had no answer for as to why I had the lower back pain! I now have doubts as to the tethered spinal cord, but I will get to that later as well! The only issue we could see was that I had an abscess on my incision and we were not sure why. The surgeon decided it was probably that I was rejecting an internal stich (I had three layers of stiches: one in the skin, one in the muscles, and one in the covering over the brain called the dura). Well we left that visit on a positive note and he said I did not have to see him at all any more! He said I would continue healing and that he felt he had done all he could do for me.

            Sadly this was not the end of my journey. I will write more in a separate post though since this is already long!