Introduction - My name is Jeff and I have Chiari

General
21

Hi Robin,

I am going to start with the "normal" question. First off, after surgery I have a new "normal." Prior to surgery, I was a ball of energy, yet constantly tired. I never slept - big time insomniac. My brain was super fast, which in turn created tons of errors. If you think of a computer, I was constantly running super fast. I couldn't slow down to save my life. Although this made me highly productive, it also caused a tremendous amount of stress and errors in my life. I just couldn't calm down. I was in constantly pain; pain that was debilitating. After surgery, everything slowed down. I am still running at a faster speed than most people, but I am much slower than I was prior to surgery. It took me over a year to get used to this "new" me; this new normal so to speak. I also am lucky, because I found a DO as my primary care physician and she is amazing.

Besides surgery, the biggest positive impact in my life was when I meet Dr. Guillory (http://www.thecaregrouppc.net/#). With Dr. Guillory, I learned about wheat/gluten and how it causes inflammation; which is really problematic for Chiarians. At first, I didn't buy into it but my wife wanted to try it and so we pretty much went gluten free (meaning we eat about 90% gluten free). He also tested my Vitamin D (which was low) and recommend fish oil, probiotics, melatonin, and digestive enzymes. After about 3-4 weeks it made a huge difference. I was finally able to sleep, I lost five pounds in the first two weeks, and overall I felt much better.

The next best thing I did besides surgery was become a member of Life Extension and goggling health topics like Leaky Gut Syndrome, Thyroid, Adrenal Fatigue, and hormone balance. I am fortunate to have great insurance coverage. I can get pretty much any test I want done for a very affordable co-pay. I am so sorry if your situation is not as fortunate as mine. With that said, if you are a member of Life Extension, you can get help from a Nurse and/or a doctor. I have used it twice in the 12 months I have been a member (not sure how many times you get). It has been a great help for me. I have been taking supplements for my adrenals, amino acids, etc. and I have more energy now than ever. I been doing this for a year now and it has been the best money I have ever spent. Sadly, it is expensive to buy supplements and it takes time to know what is and what is not working. It also costs money to keep doing tests (for example: I get tested for Vit D three times a year). I do not recommend taking supplements without having a doctor skilled in supplements to help you. For example, people tent to think that "all natural" means healthy. This is not the case. With that said, I can tell you that for me, life has gotten much better after I changed to a more Paleo Diet (mainly only eating meat, veggies, fruits, and nuts) and taking supplements. I am drug free, pain free, and have my energy back.

Here are the supplements I take (again, please do your own research and work with a doctor who is well versed in supplements - please don't just copy mine - it could lead to serious problems):

(part 2 coming - hate how I only get 4,000 keyboard strokes - long winded sorry)

·

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Part 2

Ubiquinol CoQ10, 100 mg

· L-Glutamine, 1 gram (AM on an empty stomach)

· Arginine Ornithine Powder 2.25G/750MG (AM on an empty stomach)

· Acetyl-L-Carnitine, 500 mg (AM on an empty stomach)

· N-Acetyl, L-Cysteine 600mg

· Fish Oil EPA 370x6, DHA 230mg x6, Other 150mg x6, total = 1,000mg x6

· GLA - Borage seed oil (Borago officinalis) supplying 299 mg gamma-linolenic acid - 1300 mg – once daily

· Adrenal Formula by Apex Energetics called Adaptocrine (K-2), Panax Ginseng 200mg, Ashwagandha 200mg, Holiy Basil 100mg, Rhodiola 75mg, Eleuthero Extract 50mg, Pantethine 50 mg, Blend 78mg of Boerhavia, Betaine HCI, Cellulase, Peptidase

· New Chapater Zyflamend (Rosemary, Turmeric, Ginger, Holy Basil, Green Tea, Hu Zhang, Chinese Goldthread, Barberry, Organic Oregano, Chinese Skullcap) 2 per day

· DHEA 25-50mg

· Probiotics (AM and PM on an empty stomach)

· Source Naturals Digestive Enzymes 500mgs 2 caps with 2 meals

· Psyllium Husk with Acidophilus, Oat Bran, Apple Pectin

· Vitamin D 2,000iu – 4,0000iu each night

· Melatonin 1-3mg each night

· Opti Zinc 30mg with Cooper 300mcg 1-2 times daily

· Magneisum (Chelated) 250mg

· Life Extension Complete B-Complex (Thiamine 100mg, Riboflavin 100mg, Niacin 100mg, B6 100mg, Folate 800mcg, B12 100mcg, B12 100mcg, Biotin 1000mcg, Pantothenic acid 200mg, Choline bitartrate 100mg, Inositol 100mg, PABA 100mg)

· Benfotiamine 100mg w/ Thiamine 25mg

· Vitamin B3 Niacin (the kind that does the “Flush”) 500 mg

· Vitamin C 500mg

· Super K (K1 1,000mcg, K2-4 1000mcg , K2-7 200mcg) twice daily

· Boron 3mg

· Chromium 500mcg

· Pituitary Support Night Formula (Life Extension) = Niacin 20mg, L-Glutamine 1,000mg, Glycine 1,000mg (PM on an empty stomach)

Also, has your husband had a MRI post surgery? With my first surgery, I made my surgeon put it on the books for 2 months after surgery. I am glad I did, because I had a leak. If he has not had one, or if he has had one but symptoms came back after having the MRI, I highly suggest getting either a post surgery MRI, or a second post surgery MRI. Also, another piece of advice I give everyone is to get a copy of all your medical notes (surgeon, hospital, MRI/CT scans, radiologist reports, etc.) and look them over as diligently as you can. Google every term and/or ask us for help with anything you don't understand. You might be surprised with what you find. I have had surgeons tell me all is good even though I have a leak and had no energy, headaches, etc.

If I can be of any more help, please let me know.

Jeff

Links to Life Extension:

http://www.lef.org/Vitamins-Supplements/Item00925/Mega-Benfotiamine.html?source=search&key=Benfotiamine

http://www.lef.org/Vitamins-Supplements/Item00920/Benfotiamine-with-Thiamine.html?source=search&key=Benfotiamine

23

Hi Rosebud,

How did your meeting with Dr. Ciricillo go?

Jeff



rosebud836 said:

Since you've already met with Dr. Ciricillo, do you have any suggestions for me how I can make my appointment a little smoother? Seems like most NS just look through the paperwork and send you on your way. Since I've had to wait so long to see him I'd really like to be as prepared as possible. Thanks!!

24

Hi Charlene,

My situation was that I had an HMO (Kaiser) who wouldn't even allow me to see a NS until we filed a grievance against them and once I was able to see one (who was stated as a Chiari expert in the grievance response), he was two years out of medical school and had not done a decompression since he was in school.

What kind of problems are you having?

Jeff

charsay3 said:

Hi Jeff,

Thanks for being here for all of us!! I am fairly new to this. My 17yr old son was just diagnosed in May after years of headaches, In the past 6-8 months he has developed abdominal issues and anxiety. We have seen one NS that is a family friend and recommends surgery, he is fairly new NS so we asked around and have been referred to Barrows Neurological institute in Phoenix. We have heard from many people that this is the place to be treated. We had to send all his test/imaging and medical records for them to review before they would set an appointment. We have an appointment with a NS on the 24.

You and other people have mentioned that you have had battles with insurance companies. What kind of issues have you had and is there anything I should be proactive with if we do surgery.

Again I thank you for being here for all of us!

Charlene

25

Hi Jeff, curious about how the tetherings were found. Could they be seen on an MRI? Did the tethering bring about an increase of symptoms for you?

26

Yes, they were noticed on the MRI each time. Matter of fact, after my first surgery my surgeon didn't really even talk about the tethering other than to say he did the best he could do. I didn't understand it at the time. Then, my 2nd decompression, Dr. Oro told me that for a while he didn't think he would be able to untether, but slowly he was able to do so. At my 2 month post-op MRI, the radiologist report stated that there is "possible" tethering at C2. At the time, I had no symptoms, so we just monitored the situation. 6 weeks later I started having symptoms and we had another MRI. This time it definitively showed that there was tethering at C2. My symptoms each time got worse with each passing week. Please let me know if there are any more questions.

27

Thanks, it really blows My mind how I keep learning about new things/ “Chiari gifts.” I need to follow up again with my surge cause my headache has settled back in 5 mos post op. I have been kind of focused on a possible cranio cervical instability (which is a definite possibility) but this tethering problem will give me some more questions to ask my surgeon about. It’s nice hear that there is another Chiari person doing well post op, thanks!
Jenn

28

They were concerned with instability issues with me, but after a flexion x-ray all seems good. I would definitely ask for another MRI and it probably wouldn't hurt to get a flexion x-ray too!

29

Hi Jeff,

I am not having any issues..YET. My son sees a NS on this Wednesday and if he suggest surgery I want to be proactive with any insurance issues that may come up or any issues I should try and prevent.

thanks

Charlene

MrTeach said:

Hi Charlene,

My situation was that I had an HMO (Kaiser) who wouldn't even allow me to see a NS until we filed a grievance against them and once I was able to see one (who was stated as a Chiari expert in the grievance response), he was two years out of medical school and had not done a decompression since he was in school.

What kind of problems are you having?

Jeff

charsay3 said:

Hi Jeff,

Thanks for being here for all of us!! I am fairly new to this. My 17yr old son was just diagnosed in May after years of headaches, In the past 6-8 months he has developed abdominal issues and anxiety. We have seen one NS that is a family friend and recommends surgery, he is fairly new NS so we asked around and have been referred to Barrows Neurological institute in Phoenix. We have heard from many people that this is the place to be treated. We had to send all his test/imaging and medical records for them to review before they would set an appointment. We have an appointment with a NS on the 24.

You and other people have mentioned that you have had battles with insurance companies. What kind of issues have you had and is there anything I should be proactive with if we do surgery.

Again I thank you for being here for all of us!

Charlene

30

Hi Charlene,

If you have any problems, please let me know. If the NS says your son needs or the NS recommends surgery for your son, you should have no problems with your insurance (as long as the NS is in network - make sure that the NS is in network). If the NS doesn't believe surgery is a good idea, I would seek a 2nd opinion just to make sure. Also, find out how many Chiari surgeries in total and how many Chiari surgeries in the past year has the NS done. If you look at my blog section, I have a blog about seeing an NS. Hope it helps.

Again, let me know if you have any issues or questions.

Wishing you and your son all the best,

Jeff