Chiari Malformation Community
Update on me at the request of selmaS. :)
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Update on me at the request of selmaS. :)

Hi, all! I posted in this forum several months ago but haven't really been around since. I tend to quit posting in medical forums after a while because it begins to feel like I'm just annoying people after a while. However, selmaS posted on my new journal entry and asked that I update you all on what has been going on with me, so here you go for anybody you may be interested :)

I'm going to try and keep this as short as possible, but for those of you who may not be familiar with my story, I'm 23 years old and have been experiencing a wide array of neurological issues every since I was 14 years old. They didn't all start at once but, rather, have appeared over the years. Just as it seems as though I couldn't possibly develop more issues, a new symptom pops up. Super frustrating! I also avoided doctors for several years because I was stupid and afraid of finding out I had to have brain surgery or something. Somehow, I thought that living with all of these problems was preferable to having my skull sawed open, plus I was clinging onto hope that the problems would just go away themselves if I just ignored them them long enough. Dumb, I know. Someone mentioned chiari to me as a possibility once, so I posted on this forum asking if you all thought my symptoms sounded reminiscent of it. I don't know if I have chiari, though; it's just one of about a gazillion possibilities.


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I will continue below since MedHelp is telling me my full message is too long. :)
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So, back in I think April, I reached an all-time low and decided to go to my GP. I presented her with a long list of my symptoms, and she told me they were all due to anxiety and prescribed me Xanax. I tried to explain that I was pretty dang sure that anxiety was not my only issue, but she wouldn't listen to me. A few weeks later, I had a really scary episode and called my dad in tears saying I didn't know what to do because I knew there was something really wrong with me, but my doctor wouldn't listen to me. He called his internist and asked him if he would see me, and we scheduled an appointment for three weeks later. His internist ordered an MRI and gave me a referral to a neurologist, but he said he didn't want to keep seeing me as a patient because he's in the same medical group as my GP and it would "create bad blood" to take one of her patients.
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I left the office very frustrated and emailed a local acupuncturist asking if he thought his services could help me since apparently my neurologist just wanted me to sit around and continue to suffer for 5 months anyway. He seemed confident he could help, so I gave him a try. I went to his acupuncture sessions and took the Chinese herbal medicine he gave me for about 3 months, but I didn't feel like I was seeing any benefit and stopped going to see him. He said I didn't really give Chinese medicine a fair shot and can't expect to be cured of a 9-year problem in 3 months, but his services are expensive, and I can't afford to continue to toss money at something I don't feel is helping me at all. One thing he did mention to me, however, is that a lot of my symptomology is consistent with chronic Lyme disease, so I began looking into that as an option after reading several people's stories and realizing that they DO sound a lot like me.
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I put off scheduling the MRI for a very long time because I was still petrified of finding out I had a tumor or something and needed to have brain surgery. I finally went to the imaging center to have it done one day, but I freaked out when they opened the door and I saw the machine, and I told them I couldn't do it and wanted to go home. Stupid, I know. The whole situation was a mess complete with my dad telling me that he was kicking me out of the house, and if someone abducted me and murdered me, there would be no funeral because nobody in this world gives a sh** about me. So yeah. Then several weeks later, I went to see the neurologist. He wanted to order an MRI again. I told him about what happened the last time I went to get one, and he said we can try a CT scan since they're over quicker. I got that done, and he said it looked normal except there was some cerebral atrophy. He just shrugged it off as insignificant, though. Then he said, "Well, I don't want to put you on any medications at your age, so let's just wait 5 months, and then we'll see how you feel." I told him I've been having issues for almost a decade, so I didn't see the point in sitting around for 5 months waiting for a miracle cure, and he just said, "I understand that, but I don't want to put you on a bunch of medications."
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Dangit, MedHelp. Now the posts are showing up out order. I'm really sorry. I'm just going to post everything in my journal to prevent any further confusion.


I really wish they would let us edit and delete posts on here!!
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Okay, journal entry is up. Anyone interested can read my update in one piece there. Apologies for the mess I've created here. If a mod can delete my posts, that would be very helpful and very much appreciated!

Thanks for the invitation to vent, selmaS :)

http://www.medhelp.org/user_journals/show/607522/Update-for-the-Chiari-forum-at-the-request-of-selmaS-?personal_page_id=2553953
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Avatar_f_tn
Wow, so sorry for your ordeal!

I don't understand why Lyme is so difficult to Dx.  Several of my pets have had complete tick panels, including Lyme.  One turned out to have Rocky Mtn Spotted fever & was sick for a month (I even suspect that it did some lasting damage).

May I suggest that you use your Xanax (or get valium) for MRIs; ask the NL for the proper dose, which may be different (as in more) than your previous dose.
Good luck!
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620923_tn?1416285879

  Hi....I am so glad u posted an update...and that u put it all in ur journal too.....

Many of the tests u r having done like Lymes, is typical for those of us with Chiari as the symptoms r so similar.....and that is y we also rule out lupus and MS too.

I know having surgery for Chiari is not something we all would choose to do it there was another choice, but when u get the testing, and know what can happen if u leave it untreated, u will opt for the treatment with the most experienced dr u can find.

Regardless of what ur dx is, u r always welcome here, to vent  or to share where u r in ur journey.

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Well, the thing about Lyme is it's unfortunately a very controversial, politicized disease. Most doctors don't even believe there's such a thing as chronic Lyme. So even if my tests come back positive, it'd still be a huge struggle to find a doctor open-minded enough to try treating me for Lyme to see if my symptoms get better. I mean, I have my doubts about it as well due to the controversy. It'd be a little difficult to just accept that I found my answer, the end if that comes back positive because there'll still be a voice in the back of my head wondering, "But what if those who say chronic Lyme is a BS diagnosis are right?"

I think I'll be okay with getting the MRI done now. I hope so, anyway; that could change once I get to the imaging center. But back then, I was hoping that maybe doctors would be able to do something for me to help ease the symptoms even if they didn't know what was causing them because I wouldn't get the test. Now that I've realized they can't do anything for me without them, I think I'm to a point where I'm more afraid of never getting better than I am of test results. Maybe. I still get really nervous when I have medical tests done. I thought I was going to pass out when I was getting the lab work done for the Lyme test yesterday, and I was internally panicking when I got my CT scan. However, it's not as strong a fear reaction as it used to be.

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Avatar_f_tn
Also, I have a question for you all. Last time, I emailed what I thought was a naturopathic doctor asking if he thought there was anything he could do to help me. It turns out that he's a chiropractor who does some nutritional stuff as well. He called me and ordered x-rays to see if he sees anything going on with my spine or whatever, and he said there was a good chance he could help alleviate some of my issues. However, I've heard that chiropractics are dangerous for people with chiari. I don't know if I even have it, though, so I don't want to call him up and be like, "Changed my mind!! I might have chiari malformation, and you might kill me!!" Does anybody know if he'll be able to see if I have it by looking at the x-rays he ordered?
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Last NIGHT, not last "time."

Sorry. One of my symptoms is that I often say the wrong word when I'm speaking or writing. Super frustrating since I can't edit my posts on here to fix those errors.
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620923_tn?1416285879

  Hi...x-rays will not show Chiari in that it only shows bone, and may show ur skull is smaller if that is what he does the x ray of, but it will not show ur herniation...as it is soft tissue and that is y we have a MRI to see what is going on with soft tissue and veins and arteries...etc...


The biggest issue is with ur odontoid if ur chiro turns that into ur brain stem u will have major problems...I understand ur not wanting to call and cancel the visit, but u may want to call and ask if he knows what Chiari is as it is possible u may have it....he should understand ur concerns and be able to suggest how to proceed or not until u have further testing.....

  Don't worry about the errors we all make them...as we all have Chiari.....
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Avatar_f_tn
Well, my MRI is actually scheduled for next Wednesday, so I think I'm just going to let him know I've had other people tell me I may have Chiari, so I want to hold off on chiropractic treatments until I have an MRI confirm that I either do or don't have it. I don't think asking him to wait a week (or maybe four weeks until I meet with the neurologist to review the results) is too much to ask. I will also ask him if he is familiar with Chiari and how to work with patients who have it without causing any harm. :)
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620923_tn?1416285879

  That sounds like a good plan...remember to request copies of the MRI and the report when u sign in for the test....
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Will do! Throughout all of this, I've learned that I have to request copies of EVERYTHING because I can't trust anybody to be responsible enough to fully review my results of any test with me. It's beginning to feel like I have to do the doctors' jobs for them; argh.
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