The Chiari Institute!

I heard back from The Chiari Institute (TCI) earlier last week!!!!!! It was not the news we expected, but not at all in a bad way! They do want to see me for a consultation, but what we did not anticipate was that they offered me a surgery date before they have even seen me! This is not something that TCI normally does, so they must have seen something significant on my MRIs that I sent in!

I have a consultation with the nurse for a neurological exam on December 16th at 9:30 and then a consult with the neurosurgeon at 10:30 that same morning. At this consultation I will be able to discuss all of my concerns relating to my health. These are some of the leading experts on Chiari in the world so they will be able to understand all of my complicated medical issues and hopefully have suggestions to help some of them. I then go for pre-surgical testing and paperwork the next morning at 10 a.m. and surgery is scheduled for December 19th at 7:30 in the morning.

The surgery they are doing is called a craniocervical fusion. I do not know all of the details, but the neurosurgeons are going to put in titanium rods and screws to fuse my skull onto my first two or three vertebrae. This will be done because the joint between my skull and top vertebrae is unstable. My skull wobbles on top of my spine. This is a diagnosis that I have been expecting for a while, so it does not come as a surprise at all. I will then have to wear a hard neck brace for at least a couple of months until my bones fuse around the hardware they put in. I will loose some amount of range of motion in my neck, but at this point we are not sure how much since I do not have full range of motion as it is.

The hope is that this surgery will greatly help to reduce my symptoms. This surgery should reduce headaches, neck pain, ringing in the ears, swallowing difficulties, difficult holding up my head, and hopefully general fatigue.

The surgery will be another big one. It will be a six hour surgery, which is about the same as the brain surgery (decompression with duraplasty) I had last year. I will then be in the hospital for an estimated 5-7 days, although I am hoping it will be shorter! This surgery is slightly less risky because they are not opening the covering of my brain, but is still considered a major surgery!

I am overwhelmed by everything coming up with my health so prayers for peace and acceptance for my family and I would be greatly appreciated! I am not sure what this means for school for next semester because last year I had great difficulty going back to school full time after my surgery.

Dehydration and hypovalemia plus surgery number 5 (or 6 if you count wisdom teeth out)

Hi all, so I have been emailing with my neurologist all week working some things out. We switched around the times I take a few of my medications which led to a rough week because my body was so confused getting off of the normal medication system. I am doing better now, but I haven't noticed a great difference from before. My resting heart rate is a little higher which is nice because it causes less fatigue, but other than that we will just have to wait and see if it makes a difference.

I am not sure yet if the Strattera is helping my brain fog. He said it will probably be a week to notice and it has been about a week plus a couple of days now, but I haven't noticed a huge difference. Hopefully I will start to notice a difference shortly!

The biggest thing that has happened this week is that my neurologist and I decided to go ahead and administer IV saline fluids on a semi-regular basis. Patients with dysautonomia benefit greatly from IV fluids because even though we drink so much, I drink 1 liter of electrolyte fluids a day and at least 2 liters of water, we are still dehydrated. For some reason my body just simply is in a state of chronic dehydration. The other issue with this is that many dysautonomia patients have low blood volume, or hypovalemia. This is very hard to test for because the ratios of platelets in the blood to red blood cells is normal, but the over all blood volume is often very low. Multiple studies at Vanderbilt University, which is one of the leading research hospitals for POTS, have found that POTS patients have an average of  betwee a 12-20% deficiency in total blood volume.

We are looking into me administering the fluids myself at home. This would give me the convenience of doing them when I needed and wherever I needed. I would be able to take them on vacations or to my parents house whenever I needed. This may sound scary to some of you, but honestly I am hoping that it will help to increase the amount of time I am able to go out and do things: give me a better quality of life.

In order to administer the fluids easier and safer my family and I decided that I am going to get a port installed. This is a line that will go into a vein near my heart and have a small rubber and metal device sitting bellow my collar bone underneath the skin. This will allow me to access it at home with far less pain and difficulties. I have small veins that like to roll, blow, and hide. This means it is difficult to start an IV in me and I get bruises that last for weeks with a significant amount of pain. It will look something like this after it is installed:

And this is what it looks like from the inside:

I have an appointment with the general surgeon on November 5 to discuss the procedure and get all of the details that go along with the port and the procedure. I requested to have it done at Rush even though it can be done closer to my home because we felt more comfortable having a surgeon who has done this procedure literally hundreds or more times perform the operation. This doctor will also be able to communicate with my neurologist so they can decide on the best model to be used. It will take a very short surgery to install the port and we should be able to access it shortly after it is put in. Surgery right now is scheduled for November 21, but it can be moved up if a sooner date arises. I doubt this, however, because I wanted to do it on a Thursday because that is the best day with my school schedule and my fiance's work schedule.

I will update with more details after I meet with the surgeon on November 5.

Oh and I still haven't heard from The Chiari Institute yet :( I am hoping and praying it will be very soon that I hear from them!!!

Brain Fog Medication

Hey all, just a quick update. I finally got a hold of my neurologist yesterday. I need to email him directly instead of going through his nurse because I am confused on many of the things that he suggested. We have already tried many of his suggestions and either did not like them or the way I am currently doing is better.

Anyways, he has prescribed a non-stimulant ADHD medication to be used as an alertness aid. For people who do not have ADHD the medications used to treat it can help to wake you up, keep you more alert, and work through the brain fog. I am going to start on a low dose of a medication called Strattera. I am starting at 10 mg, and can go up from there if necessary. Hopefully this will help me have more energy and be able to concentrate better!!!

I will update again later this week after I talk to my neurologist and hopefully hear back from The Chiari Institute in New York!!!!

Sara is a... penguin?

Hi all! I had a very fun weekend two weekends ago! After a couple bad weeks, which were not good at all health wise, I decided I needed to go have a fun weekend! I went horse back riding with one of my best friends, Jessie. I have not ridden for at least a year and it felt FANTASTIC to be back on a horse. I have ridden horses since I was 8 and it is the one sport that I love! I went for a nice long ride on a wonderful little horse named Tucker. I have ridden him a number of times previously and he is incredibly sweet! He did great, I didn't fall off (which would have been VERY bad), and I had a blast. I even jumped him a tiny little bit which was great! I did really well that day and didn't hurt too badly. It hurt my lower back a little bit along with my neck and my ankle, but nothing too badly. I got dehydrated because I rode for a couple hours without fluids, which was a really poor decision! I did alright though and drank tons of my electrolyte enhanced water after the fact.

The next day my hips felt AWFUL! I could barely walk and my sprained ankle really hurt, but it was SO worth it. I waddled around like a penguin for two days, which was fun for the people around me to watch :) My neck muscles were also killing me! This is not a good sign, but also not unexpected. I am so glad that I got to go riding!

It is the small victories in life that count and this was a very exciting victory for me and I hope to be able to go riding again before winter sets in!!!

Fun Weekend... NOT!!!!

This weekend started out bad and just got worse, but thankfully it got better on Sunday!

I started on Thursday complaining that my heart rate was jumping up way too much upon standing up. The "normal range" is an increase of less than 30 beats per minute going from a laying position to an upright position. This is the goal we try to keep my heart rate in, with medications of course. I normally do pretty well with that goal and only increase between 10-20 beats which is really good for me and even considered normal! On no medications this increase can be up to a 60+ beat increase just from standing up. This weekend it was going up at least 35 and up to 51 beats simply from changing position and this was with my medication to lower/regulate my heart rate.

As the weekend progressed my blood pressure also plummeted! I have no idea why and I was extraordinarily close to going into the ER. I felt truly awful and no matter what I do I couldn't get the numbers to come up. Generally I push the fluids and salt and I can get the BP to come back up. Now keep in mind a lot of people have low pressure with no issues, but for me I get extremely symptomatic. Also, I take 2 medications and 2 supplements specifically to raise my BP, so when I have low pressure that is on top of all these efforts to raise it! My numbers were down to numbers like 91/53 or 85/60. Both of which are much too low for me! I felt extremely fatigued, nauseated, shaky, and generally icky! I don't know how to describe it, but it truly is an awful feeling!

Anyways, I have no idea why it happened or what I did to make it better, but it is gone now! I just took my blood pressure sitting down and it was 107/75 with a heart rate of 66 :) these are perfect numbers for me and I am feeling much better now!

I will keep track of my blood pressure numbers for a while and email my neurologist to see what his thoughts are. He has offered me another medication to add to my cocktail if I need it to raise my BP, but I am not sure I want to add in another medication! He has also offered me a stimulant to take to help to decrease the brain fog. I am thinking I need to take this one because school is becoming increasingly more difficult to concentrate because I can't seem to get through the mental fog to focus.

I will let you all know when I hear back from him. Still waiting and praying to hear back from The Chiari Institute! They review cases on Monday's so hopefully I will hear back tomorrow, but I am not hopeful. I would guess it would be another couple of weeks before I hear back from them, so please keep praying for me and my appointment!