Need help finding guidance

General
1

I was diagnosed with Chiari in November, and am currently on the "watch and wait" plan with my neurosurgeon. I need some advice as to who I look to for guidance on what medications or holistic options that are available to help alleviate some of my symptoms (i.e. headaches/migraines, neck pain, dizziness/disorientation, fatigue, anxiety, etc.). I have not been very happy with my primary care physician at all since my diagnosis (she does not believe that the Chiari is causing my symptoms and just put me on an antidepressant to help the migraines/tension headaches...which I decided to stop taking because she did not give me any reasons or explanations for why I was on an antidepressant, did not discuss the side-effects, and wasn't looking at the whole picture). I honestly don't even think I've been told by either my primary care doctor or neurosurgeon the severity of the herniation and have never really been given any guidance with this at all. I've had both an MRI and cine MRI done, but yet I don't feel like I have any answers as to whether or not my symptoms are the Chiari or not and what to do about them either way. My neurosurgeon said that I don't need to come back for 3-5 years unless my symptoms worsen so I feel kind of lost at this point.

Who do you go to for help and advice for managing the symptoms? Although I know my symptoms could be a lot worse, they affect my daily life (i.e. miss work and/or time with my kids) and I have no plan what to do about it.

Thanks!

2

Hi Lisa,

I was in the same place as you when I was diagnosed 12 years ago. My surgeon didn't think it was the Chiari that was causing my symptoms(the same as yours) and suggested to find something else that may be causing them. I searched with my Neurologist for 3 years before going back to the surgeon and scheduling the surgery. It wound up being that my headaches did come back some time after surgery. Find a good Neurologist that can help you investigate and see if there is anything else that could be causing your symptoms.

James

3

Are you taking a migraine preventative medication? If you have migraines/headaches often you may want to look into that during this watch and wait period.

4

Hi Lisa. I was on watch and wait after seeing my first neurosurgeon in Dec. 2010. Then in July 2011 my hearing became greatly affected and I sought out a second opinion. In November a friend of mine recommended her neurosurgeon who wanted to do decompression surgery right away. I held off because my daughter was having a baby in July 2012 and I wanted to be there to help her. Meanwhile, my friend had her decompression and it did not go well. So , I started searching for a Chiari specialist and through another Chiari patient was pointed towards Dr. Oro in Colorado. I just had my decompression August 7th and I am very hopeful this will stop the progression of any more symptoms, which is the biggest reason given to go ahead with surgery. Good luck in your research and please seek out a specialist in this field. It best to have only one surgery!

5

Lisa, I can honestly say that you have found 'guidance' in this site. The people that run it and the many members of us here have all gone through at least some of what you have and I know from my own experience that this site is a great starting point. Personally, I found the most comfort from my faith and my family. Doctors and drugs only helped with the symptoms.
This has been the hardest thing I've ever been through in my entire life. I had an extremely rare form of this already rare condition and have been through horrors that I wouldn't wish on anyone's worst enemy. This site has definitely been a great help. Keep praying, and GET a second or even third opinion diagnosis from a surgeon who has done LOTS of these.
Apart from that, I found that losing weight (I'm not saying you have to, but I was a bit on the heavy side) that helped because it reduced strain on my spine, I wore arch supporting insoles to also reduce strain, I stopped driving because of all the neck turning involved, and I had to go on disability leave from my construction job. Just find ways to reduce strain on your spine and neck, test out different pillows and sleeping positions. Treat your neck like a newborn baby. As far as treatment, I tried homeopathic avenues and massage but nothing did much to treat so I had to turn to prescription meds, I was on Dilaudid for pain, Gabapentin as a nerve blocker, and Naproxen for inflamation. They worked to reduce (not eliminate) the pain and let me function. Looking back though I would have avoided the Dilaudid as I went through intense withdrawls when I stopped taking them.
I feel for you, Lisa. You're among friends at this site. Get the other opinions from Chiari experts. Listen to your body. Keep a strong sense of humor and laugh lots, that helped me. Above that though spend as much time with your family around you and draw strength from their love, even when you feel like you can't.
Stay strong, I hope soon you will be able to look back at all of this and know that you have a happier future ahead.

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I feel your pain… Hang in there! I went years undiagnoised with “strange” symptoms! I was told it was stress, depression, tension ect ect! Long story short I’ve had c4-c5 replacement and a skull decompression this past November! I’ve regained some strength but it’s not a head ache cure for sure! My biggest advice for anyone that I’m learning (slowly) don’t over do it! You have to rest and not push too hard and I know with jobs and families you say yeah right… But I’ve learned by pushing it causes me more harm than it does my family good! Topimax is part of my daily life to help fight off migraines. I thank God for my good days and pray for strength on my bad ones! I’m thankful for this group of people to share with! Your not alone although it often feels that way! Remember surgeries fix SOME symptoms but not near all! Good luck and stay strong!

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I understand when you say that your doctors are not providing the information or guidance that you need. My daughter and I live in an area with "wonderful" doctors (Baltimore/Washington area - with Johns Hopkins, Kennedy Kreiger, University of Maryland etc.) But they were not giving us the answers we needed, either.

My advice is to keep seeing doctors until you get some answers. Yes, it is time consuming. You will probably get a reputation as a doctor shopper, a pushy patient, pill popper, drug seeker (even if you don't ask for meds) and a crazy person (making up symptoms for attention). But you need to find a doctor who will help you.

Chiari causes many symptoms that most doctors are not aware of; I would not take "wait and see" as an answer with Chiari. I know some people do, but for me, I am not comfortable with that. The consequences can be too severe, and if you wait, they may not be reversible. My 16 year old daughter has problems urinating, she lost all sensation on her right side, she had trouble walking, sleeping, talking, remembering words. Other people can live with it. You need to make an informed decision, though, so I would keep looking for a doctor who makes you feel he/she understands what is really going on with you.

Depending on your location and ability to travel (and how bad your symptoms get), I recommend Dr. Fraser Henderson in Bethesda, Maryland. He is wonderful. His results are wonderful. His office is busy, and you have to wait, but he sees many out of state (and out of country) patients and will give you the same time and attention when you see him.

I would not have surgery with any surgeon until you have a consult with him. Many people have surgery for Chiari and it does not make the symptoms better (the standard I have found is that most surgeons try to stop the Chiari from getting worse - not make your symptoms better. Which is why "wait and see" makes no sense with Chiari - to me). Dr. Henderson operates his own way and is able to make some patients "better" after surgery.

There is also a Facebook page for Chiari with lots of advice and support.

Good luck, and if I can be of any help to you, feel free to contact me. I hope you have a pain free day today. <Hugs>

Cheryl