Chiari Online Support Group

Newly diagnosed and have yet to meet with a Neurologist/Neurosurgeon

I was just diagnosed with Chiari 1 Malformation last week and I just received the written results of my MRI but haven't met with a Neurosurgon or Neurologist yet, please help (if you can) interpret what it means. My general doctor didn't seem to know much about Chiari 1 malformtion let alone any of the questions I asked her before I saw the report of the MRI results. This is a portion of what is in the report...

"The right cerebellar tonsils extend approximately 10mm below the foramen magnum on sagittal series 2 image 12. A mild degree of ventriculomegaly demonstrated."

I understand one of my tonsils extend further than the other but what is the ventriculomegaly? When I google it all I can find is about fetus', I'm obviously not a fetus, I'm 34 years old and curious what this means. I am already scared about the Chiari 1 and having it be 10 mm (which seems to be much further than anyone else's I am seeing online) but now there is this thing I can't find anything about online. And my next appointment isn't until late next month.

Any help would be great thank you.

Thank you so much for your reply! Your first link has helped me relax a little more about it, at least until I can find out a little bit more from my doctor. Unfortunately I have to get ready for work right now but I will definately will be checking out the other two links you sent me tonight when I get home. Thank you again! It really does help a lot knowing someone that is my age that is going through similar things I have been going through. It is really hard to get my husband or anyone else my age to understand how I can be so tired all the time and have headaches all day almost everyday.

I think those were the most informative links I have seen yet on Chiari. Thank you! I was actually able to get my husband to look at the links for him to get a better understanding of what I have been trying to learn about and what I have been going through. He is the type of person if someone he loves is going through something tough he will be in denial about it as long as he can and try not to face it as long as he can. I tried to explain to him that is not what I needed right now, I needed him to understand what I was going through so he could help me get through it, so I wasn't alone. So last night he read those slide shows. I think that really helped him and myself a lot. It didn't have all kinds of crazy medical jargon that we couldn't understand. The surgery does look very scary but hopefully it won't come to that. But we will see, at least now I feel I can relax a bit more until I can speak with a doctor that actually knows about it. I can't thank you enough for your help!

Sorry it has taken me so long to respond, I have been busy with the holidays/work/family. I hope you have been well?

It is touch and go with my husband. He is the type he likes to put his head in the sand about things that worries him but he also knows I need him so he does what he can and I know that. That is all I can ask of him.

I included 2 images of my MRI, both are within a slide or two of each other to show the length of my herniation... So what is this "next round of info"?? lol

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Unfortunately since I am going through the VA (Veterans Affairs) and they are paying for everything I don't have a say of who I see and don't see. So my first appointment is on the 20th of this month is with a neurologist (I know backwards) and on January 22nd with a neurosurgeon at Duke VA in Durham to see if I need surgery. The way I look at it is the Duke Veterans Affairs doctors are the same doctors from Duke University (they are on a rotation) so I should be in pretty good hands. I will look at the list of doctors though and see if any of them are listed through the VA here as well too though. I am trying through the VA because I won't have to worry about paying through health insurance because I am a disabled veteran and the VA covers all of my health care otherwise.

Update:

Sorry I haven't posted an update in a while. I saw my neurosurgeon on Jan 22. When I initally spoke to him he said he would only suggest surgery about 50/50 until my husband reminded me to give him what my eye doctor asked me to give him. A week prior I had gone to the eye doctor for my normal annual exam and he had noticed slight increased pressure on my eyes so he put it in my records and told me to bring it to my surgeon when I went. So I showed it to Dr. Adamson (my surgeon). When he read that he wanted to do a spinal tap to see how much pressure I had on my brain since he said he also saw some increased pressure in the MRI but it was hard to tell how much through the imagry. So after he did the spinal tap he explained to me that normal people have about 10-20 pressure on their brain and I had 30. With this he was very concerned, especially with it putting pressure on my eyes the way it was. So after the spinal tap he was highly recommending me for a suboccipital craniectomy (I think I spelled that right).

I am not sure what to expect after the surgery. How soon can I take a shower, walk normal, sleep normal, etc.. I honestly don't know what to expect with any of it. I am mentally prepared for the surgery, it is after the surgery I am concerned about. Thank you in advance!

New update: Apparently they triple booked my NS on March 3rd so my new surgery date is April 11th. So can anyone help me with what to expect after surgery? I plan on trying to go back to work after 2 weeks or so but only working half days. I work on a computer 90% of the time so I don’t think it should be a problem and my NS said as long as I felt up to it he was fine with my trying. My family thinks I’m crazy, am I? Any input would help. Thank you.

Update Post-op: I'm doing pretty good after surgery. The only complication from surgery was apparently my eyes weren't taped completely and they got Betadine in them, especially my right. They chemically burned my cornia but good thing is it isn't in my line of sight but it is still healing and red a week and a half later. They did have to remove a little more of my skull than they expected and they had to file down my C1 vertibrae some for more room, they said they were surprised on how tight everything was once they were in. I was in ICU overnight and came home the next day. Since I have a high tolerance to pain I have been doing pretty well over all. My worst day was yesterday when I got another one of my headaches that I would get prior to surgery. My incision seems to be healing well, I will find out for sure this afternoon when I go in to get my stitches removed. The one thing I noticed right away that has not come back is the tingling in my hands and feet. I hope the headaches go away completely once I heal completely but we will see on that. I have been driving my husband crazy because I am constantly trying to do things around the house, only because I am going stir crazy, lol. Thank you everyone for the advise prior to my surgery!

I've never had the surgery and was just reading through this discussion. So did you have your surgery? How did it go? How are you doing?

If you look at the reply just above yours I tried to explain everything. I’m still doing pretty well I do have some days where I get my headaches but I guess that is normal while I am healing to an extent. My NS wants me to come back in a couple of months to see if they went away and if I am still getting them we may have to look at my having to have a shunt put in. I hope it doesn’t come to that but we will see.

Here is a picture of my scar just over 3 weeks post op. I am still getting really bad headaches but I’m hoping they go away as I heal. I started back to work on half days today. I think I have been extremely lucky but I’m not complaining. thank you again for all of your support. I would have been really lost if it wasn’t for this support page!
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