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Brain & Nervous System Disorders Message Board

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Wow, thank you Scout and Cindy for all your info. and kind thoughts. I have suffered from lyme in the past and "neurological lyme" so sometimes my symptoms can get confusing regarding what is causing what. Living in the 2nd highest lyme disease state and being a trail lover makes me quite informative on lyme but this Chiari - well I am still digesting it and learning as much as I can about it so your information is so helpful!

The doctor I am seeing is a Neurosurgeon and specializes in Ped.'s Chiari. He stated from the very begining that he is VERY conservative in his treatment. Said he would not do surgery,even with decreased CSF flow and Syrinx if herniation was not over 5mm...

My biggest symptom is the headaches - sometimes in the back of the head but always turning into a feeling of pressure - like my skull is going to crack open. I was a professional duathlete and still try to compete in running races but I had to stop racing because of the horrible headaches and visual disturbances I would get when I would compete at a high level. In addition to the exertional headaches I sometimes get chronic flashing lights. These flashing lights come on only with exertion; coughing, sneezing, exercise, yelling and sometimes even taking a big deep breath (I have seen a Cardiologist and everything A-OK with the heart!). Changes in barometric pressure is the worst. I also have central sleep apnea which my doctor concluded was not accurate(?), I have tingling and numbness in my arm and and fingers, neck pain and fatigue. Now are all these from Chiari? Could be some lyme possibly but I still cannot help to think what is going on inside my head when I am trying to do something healthy for myself like exercise and I get such a pounding headache and a light show. I have other things that I do not even know are related to Chiari and I am hesitant to even mention them for fear of sounding like a hypercondriact(sp)....pain behind eyes, full ears, off and on dizzy spells.

I have the paperwork to make an apppointment at Great Neck -The Chiari Institute. Maybe that is the best thing to do at this point but the bottom line is I do not even know if I would even opt for surgery at this point. I am kinda processing as I am typing but maybe I need a doctor who is more informative and provides the level of explainations that I need - maybe that would make me feel more comfortable...

At any rate, thank you again for your responses!
Hi Trigal~

Conservative Dr's is very common when it comes to Chiari. But going to TCI, if you go that route, will help you better understand whats going on and put the pieces to the puzzle together for you. So even if you go just for the consult, its definately worth the expense to be validated in this condition and to be able to talk to a neurosurgeon who is well versed in Chiari.

So many things you are dealing with sound like myself. Before I was Dx, I was dx with taccicardia with no unknown reason. My Dr said we could use medication to help but that was just putting a bandaid on things and we really needed to find out whats causing it. Then I was dx with sleep apnea as well.

The headaches I can well relate to. Its funny because my whole life, I've taken tylenol on a daily basis and when I had an onset of neurological symptoms, I never even mentioned my headaches. I just lived with them and excepted them as sinus. I then had a lumber puncture and now suffer from dehabilitating headaches so bad that I can no longer work. Any activity, even light housework or walking, will cause the pressure in my head to worsen. So I have adapted to no longer than 10 minutes on my feet and no bending, straining, carrying heavy items and I lay down when I feel the pressure building up. Generally 2 hours upright, I have to lie down for relief. Its definately not fun:D

Exercise is brutal with this condition. But remember, when your hearts working, its pumping the blood and CFS fluid and with the decreased flow, thats most likely why your experiencing worsening of symptoms with exercise. So try to take it slow;)

Barometric pressure has a big impact on me as well. I can feel rain the day before it starts and generally end up taking something strong to get through it, with alot of laying down.

The other symptoms your saying are definately chiari like to me. So you don't sound like a hypocondriac here. Ringing in the ears, full ears, dizziness, pain in the eyes, sensitivity to light, and the list goes on.

Did you get the paperwork from TCI with the symptom list? Its amazing how many things we live with that we think are "normal" then find out its not. You can get the list on their site.

Well, know your not alone in this. We're here battling this craziness every day. But as I said, you learn to adapt your lifestyle for comfort. In the meantime, you have a place to come and talk and be understood while the rest of the world thinks we're nuts:D

Are you in the south east? You mentioned being in a heavy lyme area. I'm in Ma. I'm just curious how long of a trip it will be for you if you go to TCI.

Keep us updated, OK?

Take care

Cindys601....Well your reply prompted me to send out the paperwork to TCI. It has been sitting on my desk for over a month now and I had been going back and forth....decision now made! I live in NJ and they are about an hour away. I have nothing to lose and much to gain.

I actually was scheduled to have a lumbar tap last year to look for lyme (for all the neurological stuff) when it was cancelled because I found out just a few days prior about the Chiari and Syrinx. I am so sorry that you have been in pain ever since yours......When I hear of your struggles I just cannot imagine.....I complain about not being able to be a competitive athlete anymore but at least I can still carry on with normal every day acitivites (most of the time) with some pain related restrictions. Somedays I feel fine other days - like this morning - like I want to chop off my head. Either I was not breathing in my sleep or a storm front is on the horizon when I wake up with a headache like this! Did you have the tap for diagnostic purposes?

My husband jokes with me that I should be a meterologist:). Like you, I can tell ya when a storm front is close by. It could be clear sky and sunny but I will begin getting flashing lights in my peripherial vision (same ones I get with exertion) and I know right away it is going to storm. Very sensitive to changes in barometric pressure-I understand why.... but storms are something I use to enjoy - now I dread them.....It seems like everything I use to enjoy know just brings pain and visiual dusturbances...That is my frustrated voice speaking but I know that there are still things I can do to stay healthy in mind/body and spirit and try to touch those things every day. If I am having a bad head day:) then I don't run on the trail I walk.....and am grateful for my still stong legs and lungs.....But sometimes I get so fatigued I cannot even get through the day and I don't know if that is Chairi and lack of CSF flow -which would make sense to me - or some old unresoved lyme issues. Sometimes the not knowing what is causing what is most difficult. Yes, I agree with you..adaptability and flexability is the lesson in all of this for me and I think for most anyone struggling with a chronic medical condition. I do know one thing for sure, while I do have chiari and I strive to become well informed regarding this condition and to understand all that I can about it, I do not want to become defined by it- I need to continue to do things that keep me inspired and connected to my healthy self.

Are you going to do the decompression surgery? How did you recover from your first surgery for the tethered cord? Did that provide any relief for you? How was your experience at TCI in general? Do you remember how long it took to get an appointment? Sorry...lots of questions!

I am so very grateful that you shared your experience and it is very helpful to be validated - sometimes I feel even well meaning friends and family do not truly understand what is it like. Thanks again! TG
Hi Trigal~

I am very glad you found my post helpful and with that decided to go to TCI for a consult. The most important thing in my opinion, with chiari, is understanding it and how it can affect us. Seeing Dr's who don't have much understanding in chiari, gives us a false perception of what truly is going on. You will learn alot just going there for a consult. And the validation you will feel will be worth all the efforts.

Once you send in your paperwork, they will contact you that they have recieved it. They then look at all you have provided and decide what tests they will need in addition. If MRI's aren't clear, they'll have them redone. Then they call you with the appointment date and testing dates. From what I hear, its 3-4 months now:confused: People are desperate and now have a place to go for care so they are buisy.

If testing is needed, it generally is done the day before. We stayed the night at Floral Park lodge which gives TCI patients a discount. I believe it was $85. It was worth staying over night because its a very buisy 2 days. We stayed a 2nd night because I wipe out from too much activity. But we had a 4 hour commute. Your much closer so the travel isn't so bad.

The day of your appointment is litterally an all day affair. In the morning, you meet with the nurse, then the neurologist and lastly the neurosurgeon. We were there from 9:30 am to 8:00 pm. But, I have no regrets at all. If you have any more questions, I'd be more than happy to answer them if i can.

Lucky for you, you never got the LP. I can't stress enough to stay clear of them. Things could be alot differant for you if that had been done. I had mine to rule out MS, lyme and so on. I had issues before the LP but it really took my quality of life away and I struggle so. But dont feel like your issues aren't something of importance because mine are more severe. But know that you can do things to prevent yourself from getting worse. You really just have to treat your body well. No heavy lifting, pushing, straining. No contact sports, amusement rides and that sort of thing. Jerking of the neck can cause more damage. So prevention is important;)

I was just in a store last week and it was storming outside and I was the only one in there. The clerk was loving the rain and I didn't want to burst her bubble by saying how much I dread storms. To think when I was a kid, we playing in the rain and the rain puddles. Now when I hear rain, I cringe. Isn't it neat though, that we can actually feel it coming? So much for the weather man. Don't need them any more:D

Some days you will feel the frustration and I think its healthy and normal. But on the good days that we have, we really need to be focused on what we DO have in our lives. I believe that when your dealing with a cronic illness, it definately puts your life in check and you see things with a much brighter light than you did before. People that aren't sick get upset over the small things in life. If they only knew...

You have a great attitude and this will help you so much. Chiari definately doesn't define you. There is so much that makes us who we are. We just may have to do things a little differant than we did before:)

My tethered cord surgery was really not as bad as I anticipated. I recovered very quickly. I had alot of lowere extremity issues. My legs fealt like rubber bands were wrapped around them. I had alot of pain in my legs as well. Bowel and bladder issues, all this has been resolved. I still struggle walking but not from my legs but if I walk fast, my head pressure builds up and I have burning stinging pain all over my body. So I'm forced to take it slow.

I have to have a fusion, then decompression. Long road ahead but I'm going forward. I feel like because this has greatly affected my life, I only have 1 option and that is to go forward with the surgeries. I also am dealing with this by telling myself that even if I don't get the improvement I would hope for, stopping the progression is very important to me.

I'm really glad that we have these boards to share. As you said, even well meaning friends just dont understand. They can't. This is an invisable illness and we appear perfect on the outside. But inside we suffer. so here, we truly understand;)

Keep me updated on your progress and I'm here if I can help!!


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