CHIARI MALFORMATION
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What kind of medications can you take for chiari?
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by kricklekrin, Aug 29, 2010
I'm currently not on any medications other than natural supplements.  I was on Keppra, but it changed my personality drastically.  

Has anyone decided to take medications instead of surgery?  What I'm trying to say is to control the symptoms rather than opt for such a drastic measure such as surgery.  

I'm one of those people who do not like to take medications because of the side effects and what the meds may do to my health down the road.  

What kind of medications are available to treat chiari?  Is it better to treat symptoms, or have the surgery and hope this eliminates the symptoms?  

When do you know it's time to have surgery verses controlling symptoms with medicatons?

I hope I'm making sense...
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Member Comments (39)
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by Jennyfoo, Aug 30, 2010
I've not taken anything since my neuro doesn't think my headaches and neurological symptoms are from chiari, but are cluster headaches. Ya, since when do cluster headaches cause dizzyness round the clock, weakness and tingling in hands and arms, etc?

I've heard that Diamox can help. It's a diuretic and will lessen the amount of spinal fluid and therefore pressure for some people.  I've also heard of people using Topamax for HA.
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by kricklekrin, Aug 30, 2010
Is your neuro a specialist in Chiari?  I've learned the hard way.  From now on I take my advice from a specialist who has devoted much of his life to studying Chiari Malformation.  My local neuro also said all of my symptoms are migraine related.  My symptoms at the time were:  Seizures (spikes and waves on EEG, but could not capture seizure on EEG. those who witness these episodes said they looked like seizures),unable to use my arms without extreme pain, pressure and pain in head at base of head, lightning type jolts of pain in my head and eyes with temp. paralysis on one side of body (diagnosed TIA"s in the ER), etc..........

I'm sure you get the picture.  He refused to even discuss my symptoms possibly being related to the Chiari on my MRI.  I will never understand this.  I paid this man a lot of money, ALOT!

I'm going to check into the diuretic, thank you.  I have a lot of pressure in my head.  At this moment, my top front teeth feel like they are about to pop out of my mouth.  

Have you seen a specialist for your Chiari?

My Chiari doctor told me to stay about from Topamax when I mentioned it.  The look on his face told me this medication is too risky.  My cousin has Chiari and her neuro perscribed it for her.  She did say it has helped with dizziness.  I don't want to live on meds all my life.  I would rather correct the problem than mask it.

Thank you for the info and good luck to you.  Be your own advocate.  If your symptoms persist, please see a specialist.  There are many good Chiari Doctors around the globe.

Kristel
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by AJ29349, Aug 30, 2010
Hi!
I too hate to take meds.  However, currently I have no options, other than surgery.  I am taking (while kicking and screaming) Neurontin, Soma, Midrin and an occasional Lortab when pain is so bad I can't sleep.  Can you imagine how I feel not wanting to take any meds.  The Neurontin started out at 100 mg, then 300 mg, then 300 mg 3 times a day, now I am on 1200 mg.  Last week the pain management doctor told me I could take 1200 mg 3 times a day.  I said NO WAY could I ever tolerate that.  So, I am to wondering where to draw the line.  However, my issues are a little more complex.  I don't have any neurosurgeons who agree on a treatment plan.  I have to have 2 to agree, but I don't.  One says I need herniated disc surgery and not the Chiari surgery.  The next says I am a Chiari surgical candidate and would be crazy to let anyone touch my C-spine with my disc.  I have one that says I have one bulging disc and one that says I have three.  I have one that says PT messed up my neck and I have one that says traction would not have messed up my Chiari.  There are 100 more factors that 4 neurosurgeons have disagreed on.  They all agree my Chiari is at 8 mm.  But done of them agree on where to go from here.  I am thinking of going to Duke.  I called and they told me there is a Chiari specialist there, but I can't find him on any list online.  Therefore, I am unsure if I want to make the 4 hour drive or not.  I don't know what another wishy washy answer would do to me.  Therefore, as of today, I am taking all of my meds until I gain the courage to move forward.  There are days when I say I can live with this...then there are days, almost every night, where I say there is no way I can continue this way.  I have to be active with 4 daughters and a busy lifestyle.  That is what makes all of this so hard.  Anyway, I wish you luck on deciding what to do.
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by n40066, Aug 30, 2010
hi there!~
there really isn't an effective means of controlling the symptoms of chiari that i have found.  unless, of course, you want to lock yourself in a cool, dark room with very faint, soothing music, nice smelling candles and a heating pad!  kidding aside, the longer you wait to have the surgery, the worse your symptoms will become.  you will also increase your risk of permenant nerve damage.  but only you can decide when the time is right to have the surgery. and if you need 2 dr.s for insurance purposes, then go to 2 different cm specialist....you might be able to do this from one office.
best of luck!
elizabeth
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by kricklekrin, Aug 30, 2010
If you don't mind me asking, what kind of doctors are the doctors who can't get on the same page.  Are they all Chiari specialist or simply neurosurgeons?    

It sounds like you have a lot of pain and when this is the case there are not many options other than taking something for the pain.  Can I ask what kind of pain you have?  Is it the headaches, or other?

My pain comes and goes and I'm very stubborn about taking pain pills.  I suffer through the pain and now have a high tolerance for pain.  I to have three kids to take care of and I do a lot of hiding my symptoms for their sake.  I'm not saying this is the thing to do.  It's simply dumb at times on my part.  So my husband says:)  I have to remember my pain affects him as well, even if it's in a different way.

I really pray you will find doctors who can agree on what is best for you.  Have any one of them done a Cine-MRI?  This would check the % of blockage (spinal fluid).  

What kind of symptoms other than pain do you experience?  I would think that a 8mm herniation is significant.  

Good luck








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by LisaM46, Aug 30, 2010
Oh. Elizabeth!  I truly laughed out loud!  Your method sounds really nice!  

I hate pills too.  Currently only taking bp meds & ibuprofen (Neurontin made me much too combative).  I did invest $100 in a new pillow with a rounded side to it (do they call this a lumbar pillow?  I forget.)  Anyway, it definitely helps - I was on vacation for 10 days and didn't bring it because it's kinda heavy - I will never make that mistake again.  By the end of the trip, on top of the "usual" pain, I ended up with stabbing pains in my neck.  A regular pillow does not give enough support, and this one seems to hold my neck in a better position... it seems to distribute the pressure better.  Sounds silly, but I'm sure you know every little piece of relief adds up at the end of the day.

Lisa
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by kricklekrin, Aug 30, 2010
Yes, this pillow is wonderful.  I too left it behind on a recent trip and will never do that again.  

I will tell you another trick that helps.  When I have a lot of pressure and pain in the back of my head and neck I wear a hard neck collar for a few hours around the house.  

A stranger with Chiari stopped at my house when she heard from someone I had Chiari and gave me this neck collar.  My Chiari doctor gave me a soft collar, but it does not do the trick.  Worth a try for some relief...

Yes, every little piece of relief adds up at the end of the day.  Keep the natural alternatives coming!



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by jpurple, Aug 30, 2010
I take Elavil 30 mg at night and that helped with my arm pain but i still get headaches that make me so sick i throw up and have to stay in bed.  To keep them at bay i take ibuprofen and lortab.  My doc rx'd Topamax but i'm not going to take it, too scared.  I think I'm going to try diamox as recommended by tci but may have a contraindication to that too, i'm looking into it.  Good luck to you and don't be afraid to take something as needed if you need it.  They should be giving you something to take for when you just can't take it anymore, i know how draining it can be.  
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by AJ29349, Aug 31, 2010
Hi!
I'm not sure about the neurosurgeons being "Chiari specialist".  I was told that the first one I went to was.(MUSC)   However, I'm not too sure now.  I can't find him or his facility listed on any of the provided list.  Therefore I decided to go to another University Hospital in Georgia and he said he does so many Chiari surgeries he can't count and said that he also promises me he doesn't have to read a book on how to do this the night before.  I believe that he is very familiar with Chiari and decompression surgeries in general.  But, there again, I can't find him on a list anywhere.  These two wonderful NS have totally opposite opinions.  A local NS 30 minutes away who has a great reputation said my Chiari wasn't far enough down to cause any problems (it's an 8).  His nurse told me off the record to go to a University with this diagnosis, that though this NS is a great one, no one local is specialized in Chiari.  Symptoms that I have are Headaches and Migraines...all over.  Though I have them at the back of my head, I also have them all over along with horrific eye pain.  Upper neck pain that is chornic and unbearable at times.  (this started after mechanical traction), Shoulder pain that radiates up into back of neck, left arm pain, numbness and tingling, ears ring 24/7 (this started during mechanical traction), facial numbness, tingling. (left side only), muscle spasms in face and eyes (started during medical traction), shooting nerve pain into head, chronic fatigue, state of fogginess, short term memory, muscle jerks in right leg (approximately 10 a day).  Another symptoms I have is I can be sitting on the couch working on my laptop and the next thing I know an hour has passed and I have fallen over fast asleep.  Almost a passing out type thing.

Treatment that I have had or testing include:  EMG, NVS, lumbar puncture, mechanical traction, massage, and hands on PT, trigger injections into neck times 4 (painful), C-spine injections under fluroscopy, Tens unit, Neurontin, Zanaflex, Soma, Midrin, Treximet, Lortab at night prn.  

I wish you all good luck.  I have very frustrated and don't know what to do from here.  Thinking about Duke University, but it is very frustrating to continue to get the run around.  I called Duke and they claim to have a Chiari specialist.  Dr. Sampson.  However, I'm going to investigate a little further.