First Day at Mayo Clinic

Today I had my first appointments at Mayo Clinic in Rochester. I woke up at 4am to get here on time so bear with me. I'm exhausted so this'll be a short post. 

12:45- went over my medical records and gave them copies of my MRIs and other images I had on disc. 

1:15 - met with the neurologist. He did some neuro tests and a physical exam. Based on my symptoms and the severity of my herniation, he recommends surgery. He ordered an MRI to see if it has progressed since last October. He also put in a request for me to see an internal doctor because I have some other symptoms that are not related to the Chiari. 

2:40 - blood tests 

5:00 - MRI

Tomorrow at 1:45 I have an appointment with a neurosurgeon. I'm guessing he will have the results of my MRI. He will probably go over the surgery and options. I'm guessing, if the Chiari hasn't progressed, I will be able to go home. I have an appointment to see the internal medicine doctor on October 1st. Hopefully they will find the answer to the rest of my symptoms. Once that is taken care of, I will decide if surgery is the way I will go or not. If I can get rid of some of the symptoms and the distension of my brain into the spinal column has not gotten worse, I will hold off on surgery as long as possible. 

No Thanks!

So, I wanted to make a post to explain what the surgery entails.. 

I found this on csfinfo.org - 

SURGICAL OPTIONS

All surgical interventions for Chiari I involve creating more room in the posterior fossa and foramen magnum to relieve the hindbrain compression. The patient is positioned prone (face down) on the operating table with the head in a fixation device. Incision is made in the midline, and the muscles and soft tissues are separated. Bone is exposed from the occiput to the top of the C2 vertebra.

1. Bony decompression: The simplest option is bony decompression only. After exposing bone, a portion of the occiput and the posterior arch of the C1 vertebra are removed. The dura and underlying brain are not disturbed. This operation is performed by a minority (but a growing number) of surgeons. Most believe that expansion of the dura is also needed.
2. Bony decompression with duraplasty: This technique is probably the most common method of Chiari I decompression. Bone removal is performed as above, after which the dura is opened. Some surgeons take great care not to disturb the underlying arachnoid membrane, while others open this layer as well. Leaving the arachnoid intact may prevent the CSF from leaking out, thus presumably decreasing the incidence of aseptic meningitis and pseudomeningocele. A graft is then sewn to the dura, effectively expanding the posterior fossa. Materials used for grafting include autologous tissue (fascia from patient’s own tissues), bovine pericardium, and a variety of synthetic materials. It is not known what the best material to be used for duraplasty is.
3. Tonsil resection or shrinkage: In addition to opening the bone and dura, some surgeons prefer to address the tonsilar descent directly. This can be done by either applying bipolar electrocautery to the tonsillar tissue, causing it to shrink, or by resecting the tonsils. In either case, the goal is to ensure that there is no obstruction of CSF flow out of the 4th ventricle.
4. Other options: Several other surgical strategies are employed to assist in a Chiari I decompression. Some centers use ultrasound to visualize the movement of the tonsils with the cardiac and respiratory cycles, or to visualize the flow of CSF before and after decompression. This can be used as an aid to determine whether dural opening or tonsillar shrinkage is necessary. In addition, various combinations of the above procedures are sometimes used. For example, some surgeons will open the dura, shrink the tonsils, and close the dura without a graft. Others use endoscopy to shrink the tonsils through a small skin incision.

CONCLUSIONS

When a Chiari I malformation is severely symptomatic, causes neurological deficits, or is associated with syrinx formation, the treatment is surgical. All options for surgery have a common goal of expanding the posterior fossa allowing normalization of CSF through the 4th ventricle and foramen magnum. This goal can be accomplished in many ways, from simple bone removal, to duraplasty and tonsillar resection. So far, no one method has shown superiority over the others

The first doctor I saw, explained to me that I would most likely need option #3 because of how far my brain is herniated into my spinal column. 

Here are a couple of pictures after surgery. 

Yeah, doesn't sound fun at all. No thanks! I'm praying I don't have to go through the surgery. 

Mayo Clinic, here I come!

Sorry for not updating sooner. It's been a rough summer... My nausea seems to be worse in the summer months.  I decided to hold off on the tests that I mentioned in my previous post. I finally got a call from the Mayo Clinic and have an appointment set for August 31st. They expect me to be there for 3 to 7 days. 

I am hoping that they run all the tests they need to find out what the next step for me is. It gets exhausting going to the doctor every 2 weeks and waiting another week for the results just to have another test ordered 2 weeks later. Hopefully, Mayo can just do a slew of tests for the few days that I will be there and we will get this all over with. Please pray that I get answers and solutions... Hopefully anything but surgery. That terrifies me. 

We've got a first timer here!

I am a complete blogger virgin. Grammar has never been my strong suit, so bear with me.

I decided to start this blog for three reasons. First, so I can keep family and friends updated on doctor visits, results, etc. It'll probably work better than telling each person individually. Second, it'll help me track symptoms, progress and other things. Lastly, for other people that have Chiari that might have input, or that can benefit from what I post.


I have a rare, congenital brain defect called Chiari Malformation. This means that the bottom part of my brain is protruding into my spinal canal, which causes pressure and messes with the flow of cerebrospinal fluid. This can cause a syrinx to develop in your spine (build up of spinal fluid in one spot). Once the damage is done to your spinal cord, you can relieve the syrinx (with the surgery) but the damage is usually irreversible. Thankfully, I do not have a syrinx. But I could develop one eventually.  They say if your brain is protruding 5mm you are considered to have Chiari Malformation. Mine is 26mm into my spinal canal. Yowsa!

Here is my MRI and an example of a normal brain and a brain with chiari... 

Chiari can cause all sorts of symptoms that are different with every person. Mine include daily headaches, tons of pressure in my head when I exert myself (laughing too much, coughing, getting up too quickly, or just moving the wrong way), dizziness and vertigo, I deal with nausea on a daily basis (worst feeling ever), fatigue, tingling, numbness in legs and feet, constant ringing and pressure in my ears, shooting pains in my head and face, feeling like I am going to pass out, difficulty swallowing, digestive issues, feeling like I am going to fall over, problems with my vision... I'm sure there are many that I'm forgetting to list. 

I do have good days and bad days. Some days I only have a few symptoms that only last a short period of  time. Some days I feel like I've been hit by a truck and I'm just so exhausted and sick that I can't wait for the day to end.  Unfortunately, I've had more bad days than good days lately. You may not always see it on the outside but I try my best to fight through the symptoms and enjoy the day. 

I was referred to a neurosurgeon who insisted I needed surgery. The most common treatment for Chiari is a decompression surgery, where they remove part of your skull and sometimes the first vertebrae, and sometimes even remove part of the tonsils to allow for more room... Of course, anyone facing brain surgery would get a second opinion. Which is exactly what I did. The second neurosurgeon said that I could just monitor it and treat the symptoms if I really didn't want to get surgery. He would also like me to get some other tests done to make sure some of my symptoms aren't being caused by anything else. 

It is quite confusing getting 2 different answers when you are dealing with your brain. It's not a very easy decision to make. And of course, Chiari Malformation isn't a common thing with definite answers. No one is really sure about anything; there is no universal diagnostic criteria and no universal treatment. You could see 4 doctors and probably get 4 different opinions. You can talk to other people who have Chiari and each story is completely different. Some people are so glad they went through with surgery because the feel 100 times better, some people wish they never did because their symptoms got worse, some people don't even have a choice because they have developed a syrinx,  some people have had to get the surgery 3, 4 even 5+ times (because it wasn't done correctly or continued to get worse), some people recover from the surgery in 8 weeks, some people are miserable and take 9 months to recover. 

So, what's a girl to do? Take the chance and go for the surgery in hopes that I will feel good again on a daily basis, only to possibly become worse for the rest of my life. Or, not take the chance and just deal with the symptoms that have become a part of my daily life and risk the possibility of developing a syrinx.  Neither option sounds great to me. So for now, I will go get the extra tests to rule out any other causes of certain symptoms. 

I'll be getting an abdominal CT scan next week... I get to drink that yummy barium mixture... ick...They are doing this to make sure that my digestive issues may not be caused by anything else. 

That's it for now, I might do a few short posts to keep track of symptoms, but I'll be sure to update after I get the results of the CT scan sometime in the next week or so.