Hi Friends, looking for a little advice and guidance. This is a brief description of the last two weeks - can anyone think of something I haven’t or any direction I should take. Really feeling like I an ready for Shepard Pratt. Had surgery 3 months ago. In general I would say almost all chiari stuff was better. I was back to living. Spending days at the pool and ruining my skin. At the beginning of last week the pressure in my head started to build again so I did call and make an appt with ns. By Friday I totally tanked. Spent the weekend in bed and white knuckled it out until my appt. ns did order a head MRI not a cine. I went in to see him yesterday and he said all was fine. Showed me on the picture how there is good fluid around the cerebellum all good news from a chiari stand point. Here is the question - would this have shown a leak in the patch,an infection, or anything else that could be going on? This really feels systemic. Should I have insisted on more or how do you when you are deali g with someone considered the best in the area? My symptoms are: pressure stinging type head ache,heart feeling funny, food is a total struggle to get down and when I do I really don’t feel much better. I don’t want to go running all over again to rule out everything else just to find out it all goes back to my head. Within the year before my surgery I have had an echo for my heart,upper and lower gi for my stomach, endocrinologist for anything else I hadn’t already ruled out. Everything was normal which led me here to confirm what I kept saying since first surgery - this is all from my brain - and I was right. I truly feel something is wrong in my head but what do I do now? I was good and I totally was enjoying life again just to get slammed back to the sofa. What should I do?
I've discovered my mentrual cycle brings about symptoms and I feel my absolute best when i am ovulating. Try and follow your symtpoms with your cycle in your calender. I am 6 weeks post op now so you're a little bit ahead of me. :) I worry about the return of symptoms, but i read that symptoms will come and go in the first year as the brain settles into it's new environment and new space it was given. The brain is a wacky thing, and hormones are even wackier (if that's a word!) so i'd check out the possibility of your headaches cycling with your menses.
I felt really bad yesterday too. Ice Packed it and stayed in the air conditioning. I'm 4 months post-op. Hope you have a better day today.
Hi....
Hoping that you are feeling better today...how are you doing???
Peace,
Lori
Beeba,
If your patch was leaking they could have told by the MRI. You would need a CINE MRI to see the route it was taking. Are you having any fluids coming out of your nose or through your mouth (it tastes like brine...extremely salty)? I don't want to discourage you but what you are experiencing is what a lot of Chiarians live with daily post surgical. Do you have a Neurologist? If your NS said everything was normal, experience tells me me he is done with his portion of care. I would recommend you see a Neurologist & see what they tell you about your pressure headaches. I have had Major & Minor Occipitial Nerve blocks. The Occipitial Nerves run over your head kinda like a helmet. The blocks can help pressure headaches. Maybe a Pain Mgmt doctor might be able to help. I am so sorry you are having post surgical symptoms. Please keep us posted on how you are doing !!
Tracy Z.
You I have to feel better. As I told you earlier I have missed our chats!!!
Beeba, you have been in my thoughts and prayers. Hope you are feeling better.
I know this is what I hate to hear but how is your diet? Dr Oro was very adament with me that I need to watch what I eat and try not to eat so many processed foods. I am just now conceded to the fact that I really need to make a 180 in my diet to feel better.
Hang in there,
Diana
Glad you're feelign better! Just to set the record straight and make you feel better too, Dr. Oro's recommendation for diet on Paleo does include red meat. Read the book, Primal Body, Primal Mind, by Nora Gedgaudas. this is the book Dr. Oro's nurse suggested to me and it's my new bible. In a nutshell, you need to cut out ALL carbs, sugar. Use healthy fats like coconut oil, avocados as your primary source of fuel instead of sugar and your brain will be healthier by far. I don't feel better symptom wise on this diet since it took out all the sugar addiction, but if done right, you are preserving your brain from inflammation and all the things that cause chiari symptoms to flare up. It's also supposed to help with hormone fluctuations especially as you approach menopause. In your healing process, you should be eating lots of dairy (if not sensitive) meat and veggies. Lay low on the fruit since it's still suagr and an inflammatory- only a handful of frozen berries with coconut milk poured over it and a little cinnamon will be your new "ice cream." This new diet is my way of doing what i can do to stay in control of Chiari and make sure that I am doing everything in my power to have the best life I possibly can. I don't want to suffer unnecessarily because of something I was eating or not eating. We should get a support group going on this feed regarding primal diet and chiari symptoms! Best of health to you! I'm just coming off my period and feeling full blown symptoms 6 weeks post-op so i know how you feel. This diet is my only hope right now. :)
Ok Im a little new to this, but not nutrition. Im trying to figure out, why in the world would a diet work for chiari...? Especially the part about fruit. There are actually a lot of fruit that reduces inflammation.... so please clue me in... thanks.
Okay. Probably more for pain symptoms and not so much headaches and dizziness....?
thanks