Hi everyone... Sorry about the lack of participation but nothing much has changed here.
I've seen several local neurologists and neurosurgeons and I've been rejected by everyone. The neurologists because this is a problem for a neurosurgeon, and the neurosurgeons because of the risk of surgery on an obese patient. (I am appx 300 lbs, 50 of that gained as my symptoms worsened and I slowly became unable to move, walk, or exercise.) I've argued with them, saying it's not only skinny people who get sick, and there must be someone somewhere who has come up with work-arounds for obese patients. No dice: just rejection after rejection.
Has anyone else had this particular struggle? I don't eat a lot since I'm nauseated all day long, and I simply can't stand up without developing a headache, nausea and the shakes. I work with resistance bands and a yoga/birth ball as much as I can without making myself sicker. One NS, after he told me I wasn't a candidate for surgery, told me I should think about having gastric bypass. Er, that's a surgery, right? (Sarcasm.)
My GP is still trying to find a local NS who will take me on, and failing that, she's going to try to refer me to Dr. Ellenbogen's office. Still no paycheck either, as no one is willing to label me as "temporarily disabled" to my work's insurance group, but they're unwilling to give me back my driver's license and work privileges since my symptoms are worsening.
Hope you all are feeling wonderful, healthy and happy, Katrina W.
SO SORRY YOU HAVE TO DEAL WITH ALL OF THIS....HAPPY YOUR GP SEEMS TO BE IN YOUR CORNER, TRYING TO GET YOU INTO DR.E'S OFFICE...ONLY HEARD GREAT THINGS ABOUT HIM.
THIS IS JUST MY OWN OPINION..I THINK THERE ARE SOME SURGEONS OUT THERE THAT IF THERE IS ANY FACTOR AND I MEAN ANY FACTOR THAT MAY MAKE THE SURGERY A BIT MORE RISKY...THEY SAY 'NO'....B/C THEY WANT ALL THEIR OPERATIONS TO BE DONE AND OVER WITH WITH ZERO COMPLICATIONS....TELLING YOU TO GET A BY PASS...NOW THAT IS A HUGE SURGERY...
DO NOT LET THIS STOP YOU FROM GETTING THE HELP YOU DESERVE AND NEED. LET US KNOW HOW YOU ARE MAKING OUT.
I honestly don't eat a lot because I'm so nauseated all the time, and I'm on a gluten free diet so I don't eat pasta or bread. For breakfast I have a protein shake - it's the only thing I can keep down while I take my meds and wait for them to kick in. I might have a snack after - usually a yogurt, or walnuts, or dried pineapple. Lunch is rice + a protein, maybe veggies if we were able to afford them that week. Dinner is whatever I can eat without getting sick: stew, ramen, scrambled eggs, stir fry, whatever. And then I sometimes eat a gluten free cookie for dessert. We don't have the money for ice cream or other splurge foods.
I know I should eat more veggies but we can't afford the fresh ones right now. I drink water for the most part, sometimes I will have one of those 100 calorie Cokes.
I have tried diet after diet, Weight Watchers, Jenny Craig, everything over the course of my life. I spent six months going to the gym five days a week and I lost twenty pounds and then plateaued. I know this new, sudden weight gain is because I went from working full time, going to school full time, building my business, being a doula, walking the dog, etc., etc., to being practically bed-bound. I move as much as I can but it truly makes my head and heart pound. I get dizzy, nauseated, and shaky just walking around the house.
I don't know how I'm supposed to lose weight this way.
Emmaline said:
Hi Katrina, it's so good to hear from you. Sorry tho that you're no closer to a resolution health wise.
It's so difficult to have healthy eating choices when you feel like dirt...sometimes easy seems so much better, but in the end we end up sabotaging our own health even more. Chronic illness of any kind is a wake up call. Something is off. We can manage with meds, but is there more we can do? On those horrible pain filled days it seems like an impossible task. For me it was ice cream. Ice cream was easy, it felt good eating it, and I was full. Especially when I ate the entire pint. Besides putting on weight I set myself up with even more inflammation, which added to my med list. Being on extra meds created more bloat, and wanting more unhealthy foods.
I decided that I had to regroup. No more grains or sugar. It took a couple of weeks but I felt completely different. The inflammation improved, but better yet, the bloat and cravings went away. The higher protein, lower carb way of eating worked for me. Some of the Chiari docs talk up the Paleo diet. It's really great but even more restrictive. I can't seem to eliminate all dairy. I need my cheese and half and half for my coffee! It really can eliminate that inflammation that we all suffer with.
I realize that a new way of eating may be too mind numbing at a time when you feel so awful. But at a time when new opportunities seem to be dwindling for you, it may be worth a shot. Hopeless is not a good place to be in. You've already learned that you need to be your own advocate, go one step further to get your life on track.
I hope you find something to help, we're always here to listen as you work through this. We need for you to feel better!
I hate that you are having such a hard time getting proper care. I do hope your doctor can get your in with Dr. E.
It just seems ridiculous that these doctors won't treat you but refuse to either sign disability papers or grant you the permission to go back to work.
Sorry I'm not a big help, I just wanted you to know that I'm thinking about you and that I hope you get relief soon!
I'm on quite a few meds and I do retain a lot of water... My husband is a pharmacy tech and put me on water pills (with my PCP's blessing) and I dropped 30 pounds in two weeks. My weight fluctuates within that 30 pounds every few weeks. It's gotten better now that the cold weather has set in though!
I understand the risks of having a surgery where I'm on my stomach for several hours... But the alternative is to watch my health slip away until one day I won't be able to get out of bed! Which is worse? The chance of complication during surgery? Or the 100% certainty that I will be sick like this for the rest of my life?
Emmaline said:
It's heartbreaking to hear your frustration. Hang in there while your pcp works this out.
Are you on meds now? That can make a difference as well. Some meds make us retain water like a camel.
You can also look into the Medicaid program in your state. I recently applied to get insurance, and just finished a food stamp application to help you with food costs. It's based on income, so you can check your states website to see if you qualify. I have no income at the moment, so it will be a help.
I had to start getting frozen veggies, since the fresh ones would go bad before I ate them. If my appetite wasn't saying eat spinach...it would go bad. Now I buy all frozen, and the I can have a variety on hand. Once a week I'll splurge on something fresh, and roast it, then I'll freeze the leftovers. That has worked well.
I think this is one of those situations where the surgeon's desire to protect himself is overshadowing his desire to help the patient. I guess doctor's can't see that in some cases a patient can be so miserable they are willing to accept the risks no matter how dire. I hope you find a good doctor soon. I can't imagine how frustrated you must be.