My Story

General
1

Hi fellow Chiarians. My name is Shannon and I am fairly new to this site but wanted to get some insight to my story and see if anyone could help me. So here it goes...........

Last year about April I started noticing headaches daily that I couldn't seem to get rid of. I just continued to take tylenol or ibuprofen and continued on with my daily activities. They didn't seem to ever get any better so I went to see my regular family doctor and I think at that time she just sort of chalked it up to life and we went on with tylenol and I still had the headaches. Months past and the headaches kept getting worse so I went back to my family doctor who gave me some antiinflammatorys and some vicodin and had me get a ct scan as a precautionary measure, just knowing that there was nothing wrong and I left hoping that things would get better and the headaches would go away. Well no such luck!!! The headaches continued and the doctor called me personally and told me she was sending me to a neurologist because my ct scan showed something that looked like I had pressure building on my brain and she didn't want to waste any time she wanted me to have the best doctors and to hurry and find out what was wrong. So I got an appontment with the neurologist fairly quickly (thank the Lord) I'm sure that most of you can relate to the wait of the visit to the neurologist. It is so very scary to not know what is going on inside your on head. I saw him and he told me that he didn't think that there was any swelling on my brain from the looks of the ct and that he was sure I had nothing to worry about but he was going to order a MRI just to be on the safe side. So he sent me home to still deal with the headaches (by now I am only taking anti inflammatory meds bc no one wants to give me anything stronger). Shortly after I get a call from the neuro saying that I indeed have Chiari. To be honest it was a little bit of a relief to have a diagnosis of any kind at this point. Anyhow his treatment was to start me on Topamax and to have 2 more MRI's one of my neck and one of my back to make sure there is no damage done to my spine. He gives me a call about a week later and reassures me that I do not have any damage and that he doesn't recommend decompression surgery for my Chiari. I follow up with him a couple of weeks later in the office and inform him that I am pretty much headache free but I am still experiencing pain in my back. He tells me then that my MRI has shown that I have 4 bulging discs, 2 in my neck and 2 in my back. I ask if this has anything to do with my Chiari and he tells me no that the two conditions have nothing to do with eachother and that he is only treating me for my "HEADACHES". (I find that statement bothersome) So after going through all of the red tape I now go to an orthopedic doctor who tells me that the MRI shows that the 2 discs in my neck don't seem to be giving me any trouble (which pain wise seems to be true) but the 2 in my back are the worst ones you can damage (8 & 9) and that there is really nothing that he can do for me. He said that those discs are not operable. They are too close to the heart and lungs and it is too dangerous. He is trying physical therapy and later he may try shots but that can be risky too. He said that I will eventually be addicted to narcotics. (thats just what I wanted to hear).

Now let me tell you guys a little about myself before this all happened. I am 37 years old and until all of this came about I was very active in the gym. Probably a little too active. I used to go sometimes 7 days a week. I had a very good eating habits. I took very good care of myself. After having my last child I needed to lose some weight and even though it was hard I did so all by myself with diet and exercise.I I don't mean diet fads. I'm talking lifestyle changes. So I'm well aware of what it takes. I have always struggled with womanly issues. Be it my menstrual cycles(bleeding continuously), mood sswings, temperature issues, retaining water, fatigue, the list goes on and on. I have had the doctor test my levels and they always come back normal. But I have also had a partial hysterectomy and been diagnosed with diabetes recently and had to get reading glasses due to the vision problems. I have tried to start ack to the gym slowly but have found that I come home and cry because 10 minutes of cardio alone kills me. I just don't know how to handle all of this. I have also gained 20 pounds and even though I have went back down to a 1200 calorie daily diet I have not lost an ounce of weight. I am on sooooo many pills but still have no relief from my back. I fight through it every day because I will not quit. I still work, I am enrolled in college courses, I am a single mom of 2 boys still in school and I volunteer. I just need more answers. I feel like something else is going on and someone is missing something. Thanks for taking the time to read my story!

Shannon

2

I am so sorry you are undergoing such a hard time. It is hard when you have other neck and back issues to tell what is chiari related and what is not. Also pressure on the brain stem from chiari can cause a lot of random issues that seem unrelated.

I know Emmaline on the boards has found success with an anti-inflammatory diet and I'm wondering if that is something that could help relieve some pain from the inoperable discs.

If you symptoms continue to worsen don't hesitate to seek a second opinion!

3

I have thought about seeking a second opinion but I didn't want to jump the gun. I just feel defeated in some ways because the neurologist seems so detached from what is going on with me. I have seen him 2 times briefly and he has never even touched me or anything. It has been very odd. I don't even go back to see him for a year. It is actually very similar for the orthopedic doctor too. He has never examined me either.

4

Sadly most people on this board have found themselves disappointed with their neurologist. The majority seem grossly under informed about chiari and seem to dismiss our symptoms. I would seek out a neurosurgeon. Seeing a neurosurgeon does not mean that they will recommend surgery so don't panic! They have a much greater awareness of chiari and they can tell you more about whether it is the cause of your symptoms!

5

Hi Shannon! I'm so glad you found this group and us. I was only diagnosed in November, and already everyone here has been very welcoming, enlightening, supportive and understanding. So that alone will be a big help. I'm sorry you are struggling so much right now. I was fortunate enough to have a pretty smart family doc that totally bypassed a neurologist and sent me straight to an neurosurgeon. I cannot speak for your back issues, but I would seek a second opinion, and have witnessed a co worker undergo 2 surgeries for herniated disks, and he can still barely function and is addicted to narcotics, so I would advise finding ANY alternative treatment that you can. As for the Chiari, after reviewing my case, my NS did not advise surgery yet. I only have a 6mm herniation (no syrinx) and he said that the success rate is lower at relieving any symptoms. So we are going to monitor it, and hold off surgery until the symptoms are completely unbearable. So that isn't such a surprise. My NS said that there really isn't any medication that provides relief of headaches without going to heavy narcotics. Which I did not want to do because I have a rather addictive personality, and I've watched my coworker get hooked on them. So I started researching, and went to Vitamin World and met the most helpful associate. He told me that for most narcotics there is a natural supplement that will work in a similar manner. So I found butterbur. I have been taking it for 3 weeks now, and have only had 3 days of headaches that I needed a little extra kick from Ibuprofen. I don't want to take that every day and kill my stomach and my liver.

As for the gym and diet. Be patient with yourself. Chiari can cause major muscle weakness. I am a health/gym nut and I'm actually going to school for a BS in Exercise Science. Here are a couple tips. 1. Increase your daily calories to 1400. For a busy woman such as yourself, 1200 isn't quite enough. 2. Work yourself slowly into getting back into the gym. I used to run 20 miles a week, but now am limited to 2. But that's one more than last week. I used to be able to lift a significant amount of weight. Last week I couldn't even pick up a 12 pound dumb bell. So I used the 7 pounders, and tomorrow I will use the 10 pounders and keep going up. If it is your back that is holding you back, try some yoga or pilates. The stretching will help relieve some of the pressure on the discs.

Here is the most important tip...listen to your body. If it is telling you that you are pushing to hard, you probably are.

Hang in there, keep your head up, and we are all here for you!