The Chiari Institute

This week has been a really rough one! Yesterday in particular I really struggled to even function. I did not make it to class, and thankfully did not have work yesterday. I worked on a project with my partner for a couple hours and even with prescription pain medication and muscle relaxers I barely made it through! My headaches and neck pain are getting so much worse :( I am also having a return of many neurological symptoms such as aspirating (food or drink going down the air way instead of the esophagus), pin and needles in my feet, and ringing in my ears.

With all of these concerns and issues I am finally ready to admit that I need help again! I am struggling to take care of myself and do simple things like remember to eat, keep up with housework, get homework done, and meet the needs of my pets. I decided that the best route for me right now is to see a true expert. Unfortunately there are very few experts in Chiari, and even fewer that specialize in both Chiari and EDS along with the dysautonomia. There are really only 2 true experts for these conditions when they are as complicated as I have them and only 1 takes my insurance.

I debated whether to share this with all of you yet or not, but I can't wait! I sent in my paper work to a center called The Chairi Institute in Long Island, New York! They called me back and had me send in my MRI scans from after my surgery in December. This does NOT mean that I will get an appointment at this center. The physicians will review my scans and forms that I filled out and then decide collaboratively if they think that they can help me. They cannot take every patient so it is not guaranteed that they will take my case on, but I so hope they will!!!!! It could take about 2 or 3 weeks if not more fore them to get back to me. They only review new cases on Monday's so that is why it takes so long. I am hoping to hear back before the end of October...

I will update more later, but that is the big news of the week!

General Update

Well as promised, here is a general update!

As many of you know I started school a few weeks back. This has been extremely exhausting for me as I am going to school 5 days a week for the first time since high school! This may not sound like a lot to many of you, but I need the 3 day weekend to catch up on my sleep. I don't go out on Friday's or anything like that I really need that extra day to regenerate!  I am also taking much more difficult classes than I have in the past. This has proven to be a lot of work for me and caused much stress! I am an overachiever and have gotten all A's with only 1 B (which I am still bitter about!) in all of my college career. I am taking both neuroscience and anatomy and physiology of the speech and hearing mechanisms. These are extremely involved classes with tons of memorizing! I need to convince myself that for the sake of my health that I need to not stress so much and realize a B is not the end of the world!

Health wise I have not been doing overly fantastically. My headaches and neck pain have been getting worse. These are probably due to the Chiari and related conditions that go with that. The surgery in December helped with my Chiari symptoms, but they are definitely still here! My symptoms tend to cycle, so I am just in a bad cycle right now. Sometimes these cycles can last weeks, sometimes months; only time will tell how long this one will last. My energy levels have been low and I have spent a lot of time in bed reading books and watching movies/ youtube videos. I am hoping this is not a long cycle though!

My wrist is still doing very well and I have next to no pain! I am hardly wearing the brace at all anymore because it doesn't hurt and I just don't remember to put it on! I have a prescription for occupational therapy, but I am scared to go because I don't want them to hurt it more! They will not understand EDS and may cause more harm than good because of their ignorance. This is what happened with my knee a few years back. I haven't decided what I want to do with that! I do still have a gigantic bruise, 2.5 weeks out, on my left forearm where they tried to start on IV and my vein blew. I am prone to blowing veins and bruise very easily due to the EDS. It looks like someone is beating me up, but thankfully it is starting to fade now!

I was riding the recumbent bike daily and doing really well with it! I made it through the first week and got up to 10 minutes and was feeling like it kept getting easier and easier. My heart rate was staying between 140-160 which was a little higher than I wanted it to get, but thankfully it did not set off my symptoms! The sad news is I sprained my ankle taking off my shoes yesterday so now I am not able to ride the bike :( I am taking 600 mg of Ibuprofen three times a day to keep down the inflammation and have it wrapped in an ace bandage for compression for the next few days. On top of the wrap I have my stabilizing brace from last time I sprained my ankle in May. This brace provides support and has bars on either side so I cannot roll my ankle at all. Walking still hurts and I have to be careful so that I don't trip. I will probably have to wear the brace for at least the next 2-3 weeks. I am disappointed that this will make me have to start over with the exercising routine, but what can you do?

As far as medications go there has not been too much change. I had tried to go up on one of medications, Florinef, that helps me retain salt and water, which in turn rises blood pressure, but that was not successful. One of the side effects of that medication is headaches, well we know I am already prone to headaches, so we have to be very careful with that med. I am back down to taking it only once a day and seem to be tolerating that fairly well. I am scared to add in more medications because of the side effects! I am very sensitive to the side effects of medications, which is a result of the dysautonomia, so they can really knock me down if we are not careful about introducing medications very slowly! I did add in a sodium supplement. I need to increase my sodium intake in order for the florinef to work better and also to help raise my blood pressure. I don't eat enough though and was finding it difficult to eat enough salt. I add what are called thermo tabs into my pill routine. They have 180 mg of salt each, which isn't that much but at least it is more than I was getting before! I take at least 4 a day and might go to more if I tolerate these well. 

The nausea and lack of appetite were gone for a short while, but have now come back with a vengeance! This is just part of the cycles of my symptoms, but it seems as if the nausea and lack of appetite are here to stay :(

I will post those pictures from my wrist surgery later on. I have to scan them into the computer and then figure out how to include them here. Sadly though, my computer died so it needs to go to the Apple hospital to get fixed :'(

I'm sure I missed some stuff, but here is the general update that is long overdue!

No more stiches!!!

I got my stiches taken out yesterday :) It hurts a little bit to get them taken out, but it is not too bad at all! He put on two little steri-strips, which are like pieces of tape, to keep the incisions closed. I can take those off in another 2-3 days. I also get to go back to the smaller brace instead of the giant immobilizer I have been wearing since the surgery! This is so nice because I have full use of my hands and fingers! I also do not have to wear any brace when I am at home. Whenever I go out or will be lifting something then I have to wear the brace to prevent reinjury, but it is still nice because I can have a naked arm for at least part of the time!

He prescribed occupational therapy to get my range of motion back in my wrist. I have next to no range of motion bending it forward and very little range of motion bending side-to-side and backwards. I need to find an occupational therapist and get that scheduled soon here! I then need to go back and see my orthopedic surgeon in six weeks to get the all clear!

I am just elated to have my hand back and have NO pain in wrist! It is amazing how small of a tear caused such large issues. I have photos from during the surgery so I will post those as well at some point.

I will post an update on other things shortly!

Wrist Update and Exercise

Hi all! I hope you had a great week! Sorry I didn't update sooner, I had a crazy week at school!

My wrist is doing wonderfully! I never took any prescription pain meds for it AT ALL!!!!! I took a few Tylenol or ibuprofen for a few days, but after that it has been just fine! I have very little pain in it anymore and am just ready to get my arm back! I have to continue wearing the immobilizer until Thursday when I go to get the stiches out. I want my arm back now!!!!! It is just difficult because I am right handed and so it interferes with writing and things like brushing my hair.

 

This is my wrist from a couple of days ago. I only have the two stitches and as you can see there is little to now swelling at all!!!! The lines on my skin are just from the pressure from the brace.

My Neurologist wanted me to start exercising even though I have exercise intolerance. We decided to buy a recumbent exercise bike since this is the recommended exercise for me because it is seated and easiest on your joints. For now I am supposed to start with 5 minutes a day and work up from there. I have to start very slowly for fear of 1) injuring myself due to the hyperextenisve joints and 2) setting off a symptom flare up of my dyautonomia if I do too much too quickly.  So far I have done well with this and am enjoying it greatly!