Need help!

Is there any way to slow down the progress of Chiari? Any way to stop the slippage? Does laying down more help? I met with a neurosurgeon last week and he was very nice but not very helpful with anything that can help me right now. He did not tell me how deep my slippage was but he said my case of Chiari is severe. However, I am not a good candidate for surgery due to my complicated medical history and because I have soft bone. So, he doesn't want to rush into surgery. Which I'm grateful for but I'm worried with how bad my symptoms can or will get. Any ideas or suggestions? Or stories? I just needed to share with people who understand. Thank you!

Melissa

I see. How do any of you treat your headaches? Neck aches? I guess that's the biggest question. My neurosurgeon is a chiari specialist I believe. I am going to be calling his office to see if I can ask him some questions but I know doctors don't always get in touch personally. Thank you for any information you can share. If you have any questions, please ask.

Melissa,

A lot of surgeons don't have very good bedside manner. They like dealing with the unconscious. LOL You should bring a notebook with you during appointments or if you call ofice to write down the questions you need answered and write down what they say. If you talk to someone on the phone write down their name so you know who you talked to.

In the Resources Section there is a list of questions under "Preparing for your appointment"

The surgery is a treatment to stop the progression of the herniation not a cure.

Some of the things that can make the herniation "worse" is trama (car accident, whipplash, hitting your head ect..) You can cause trama by going on a roller coaster. The G forces put too much strain on your neck. Contact sports because it can lead to head or neck injury. Gravity. Those are the ones I can think of right now.

What causes "soft bone"?

I hope this helps answer some of your questions......Hang in there Melissa. We are all here for you.

Wendy

Hi there, there is no way you can slow down Chiari, it goes at its own speed. Basically if it's very severe its a death sentence. I was in hospital with someone who had Chiari her doctor said if she did not have the surgery she would be dead within 12 months, she had no fluid going to her brain, so she had the surgery. What are your other medical problems if you don't mind telling me.

Elisac

Dear Melissa:

I just happened to see your message. I am new to this support group, so I might be a little slow in navigating around here. My heart goes out to you. I can always share what I have been through with you too. The one thing that I can share first is that lying down did help me alot, before I had my Chiari surgeries. It was like decompressing my spine. Because standing up or increasing activities, can sometimes, trigger more pain or symptoms. This is what I experienced. It would be more helpful to know maybe how long you have been diagnosed, etc. Keep sharing your concerns to help you receive support. I can always share more, but don't want to overwhelm you with too much information.

Melissa, Did some specific activity or incident start up your Chiari symptoms ? I have read ( WACMA site) that whiplash caused more herniation. With time, the herniation improved. Also, I consistently find that when my sacrum and pelvis is 'out' I have more tension and symptoms from the neck and skull base. This makes sense, since the dura lines the whole central nervous system and is anchored in the sacrum and attached to the tailbone. My tailbone is twisted to the side. I have found that the safest way to adjust is in a warm therapy pool - gently, carefully, with doctor's prescription/advice.

Dear Melissa:

I can see what people have suggested and it is very good advice. I had been very ill for many years, and last year I did have to finally contact Wisconsin Chiari center last fall. It is because I was a little more complicated too, and this was not picked up with the previous neurosurgeon that I had. Dr. Heffez is very good and through, because he has dedicated the last 16 years of his knowledge to helping people like me and many others. You may want to give them a call too. Just google Wisconsin Chiari center. They did not charge me for when I sent the requested

records. Keep in touch, Mary Lou

Melissa, the one thing I want to suggest is going to the place you had your MRI at and getting the radioligists transcript. That will tell you what the herniation is. Also, have you had a CINE MRI? If so, get that transcript also, because it will tell you how bad the CSF flow blockage is. Now, the herniation isn't really that important, but the blockage is VERY important because, as you may already know, it is the fluid around your brain and spine and if it isn't flowing like it should it will cause even more problems. Another thing that they go on is your symptoms. The one thing that was stressed to me is, the chances of helping your symptoms go away get smaller and smaller the longer you have them and don't get treatment. Please consider what the others have told you, and get a second opinion from an actual chiari specialist. They have dedicated their work to this and know how to treat people who have other medical complications. Best of luck to you.

Well Melissa the first thing I am going to do is pray for you! Dear heavenly father, I lift Melissa up to you and ask you to heal her completely, she is a child in need of help, and through Christ all things are possible, by your stripes she is healed! In the name of Jesus, I pray...Amen!!

Now, I am not a surgeon, nor am I a doctor, I went through the surgery 2 months ago and am now in Physical Therapy...much worse than the surgery in my book! I know, nor have I heard of anyway to slow it down, except for surgery. I was told by my surgeon that if it continued to move that I could face being paralized or...well let's not talk about that! Let us talk about how the power of God has already healed you, and let all your words be positive even though it looks bad, be strong, and confess in your heart and with your mouth you are healed, and God will send the right people into your life to help you! I know this to be true, I am living proof! My story is one of a kind, I am a walking miracle, and I give all the glory to God. Some people disagree or think I'm a nut, but I don't care, because I am healed when they said I couldnt be! You're in my prayers! God bless you! Until then, just find positions of comfort and use ice when it hurts. If I hear anything else i will let you know! Peace and grace to you and your family!

Sincerely,

Shay

Good ideas, and wonderful prayers. I agree with Mary Lou - nothing can replace the advice and consultation of an experienced, Chiari expert neurosurgeon. Try to get 2 opinions. Read, read, read. Ask questions.

Melissa, its all good advice. Really, there is nothing except the surgery to relieve the symptoms, but you can aggravate it. I worked in construction on heavy machinery that had a lot of jarring motion and vibration (bobcats and ground packers) and I'm told that this probably caused my rapid and heinously aggressive symptom progression. So definitely avoid anything jarring to your body, even pot holes or jerky driving. I had to lose weight to keep strain off my spine too. And definitely don't drive a bobcat! lol. And while some of my fellow chiarians may not agree, I'm a firm believer in the comfort of prescription pain killers. :)

My chiari has been causing me neck pain, shoulder pain, jaw pain, and headaches since I was 18. It has progressed over time (42 now) and on some days it is excruciating. I have taken pharmaceuticals for the pain (Soma, Valium, Klonopin, Neurontin, Norco, Vicodin, Codeine, Percocet, darvon, fentanyl patches, oxycontin, kadian (morphine sulfate) etc etc etc. None of them ever really take the pain away on those super super bad days. I am sure you know those... I have found that regular exercise, relaxation techniques, massage, accupressure and accupuncture, lots and lots of stretching, swimming, hot tubs, and ice are the best things. I also think a diet that reduces inflammation is key. It can be a lifestyle change. But you are what you eat and if you carry any extra weight, which many of us are prone to, getting it off is imperative to quality of life. I have found, for myself, that using cannabis in a cream that I produce and then rub on my neck and shoulders after a good stretch, is something that has SAVED MY LIFE. I am not advocating to anyone that they should do anything illegal, but I refuse to keep a secret like this quiet. If you email me, I can tell you how to make it if you are in a prop 215 state and have your recc. If you are not, and just want more info about how it works etc, I will answer any of your questions. This is my truth tho. and I know without the lotion made up of several herbs, I may not even be able to sit here and type this. ■■■■■■■■■■■■■■■■ for questions or support. I hope this helps.

Absoultely!

Emmaline said:

I can tell you that I've had really good luck calling the staff at my NS office to leave questions that I have. Either way they will call me back with answers or he will. You have a right to get all the information you need to navigate through this.