Aa
Update
So I had my apt for my follow up after all my testing. He's referring me to another doctor. He said that my MRI's were good, no blockage, spinal cord and brain look healthy, no syrinx tethered cord whatever. As for MS, he said MRI doesn't always show and that he's not saying I don't have MS but thinks it's mostly related to the Chiari or other neurological stuff going on. He's referring me to a neurologist whose main focus is head pain for my migraines and pain I have through my left side body. He said that while I have good flow and look good, that a small faction of patients with Chiari but no blockage do benefit from the surgery. But at this point, he doesn't want to do it until I see this other doctor and am referred back to him with the concensus that surgery would be adviseable. However, if my MRI's are as good as he says, I don't know that I would want surgery anyway. It seems everyone that has it has horrible complications or regretted it. I worry about having something like that done only to end up in worse condition or with a whole new set of issues. I guess at this point, I just need to learn to deal with all the issues I have and move on.
COMMUNITY LEADER
So sorry....it can be a long bumpy ride with this journey.,.....I hope u get to the smoother part soon : )
And by the way, my summary did include my history of migraines. But yet she "diagnoses" me with Migraines as if she's just suddenly found the culprit and I didn't know.
So instead of going to the specialist I was referred too because it's getting way too expensive, I decided to go back to the VA. I saw a Neurologist there yesterday. I had typed up a 2 page thing. 1 page of all my issues and the 2nd page of all my meds, diagnoses and "diagnosis being considered." I go through everything with her and she says, "So I definitely think you have migraines and you say Gabapentin and Topamax does not work for you so I think we need to start you on Topamax again and add Butalbital (I think that's what it is)." I have to admit it took everything I had not to laugh and laugh and laugh. It's not her fault. But I'm like seriously? I summarized my complete medical history, brought records, a disc containing all MRI's since 2006 including my flow study, brain, thoracic and cervical done last month and you tell me I have Migraines as if I hadn't heard it before??????? She then says, "You have a history of Chiari Malformations?" and I said, "Yes." And of course she tells me it has nothing to do with the issues I'm having. I tell her about the pain throughout my body, my joint issues, popping etc, the fact that a doctor thought I had RA before and referred me to a Rhuematologist and asked her if she could refer me to a RA doctor and she told me, "No, let's start here. The Topamax will help with the shooting pain you are having everywhere." And despite wanting to laugh and being upset, I know I have only myself to blame for going back to the VA.
I completly agree with lydelia about all you hear on here is the negative, but we try to stay as positive as possible, and it is very true about the people who have been able to recover quicker have gone on to better thing's. I am feeling a lot better after surgery and have no regets on what I went through, but having chairi is just something some of us find out later in life and for me it hit me with a ton of bricks and it's sometimes hard to except. This forum for me any way's has been a blessing to come to for understanding and encouragement. I now come on in hopes I can repay some people who is just starting their chairi journey and looking for answer's. I know I have found more answer's here and some question's I have asked my dr that I would not of thought of if not finding them on here. I am so thankful for those who are out enjoying there day. I'm here today just letting you know your not alone on your journey for answer's and I'm here to give as much support and encouragement as I can. This forum has saved my life seriously. I'm thankful for all of you to come to for comfort. As lydelia said and I also told my pain dr this the other day. If I only had 1 surgery I wouldn't of been in there to see her I know every thing would be o.k. but life doesn't alway's work out that way for all of us. It's the struggles of getting back what we have lost. I am happy to hear your taking time to decide on surgery. Why make thing's work if there ok to handle. Only you and your body know's what is best for you. Just wanted to let you know we are here for you for loving understand and encouragement. Best of luck
COMMUNITY LEADER
Well u could have call ur local pharmacy and the pharmacist could have suggested a change to u if u didn't feel the Dr was going to be a help.
"selma"
Also, don't let this forum or any other discourage you about surgery. There are just as many people who don't post here any more, that didn't have any complications, and that is the reason that they are not on this board. They've moved on with things, and while they needed this support for awhile, they don't for the time being.
I got discouraged researching too before I had surgery, and it seemed like all I found were negative outcomes. Just know that the reason you see so many posts about negative outcomes is because all of the people with positive ones are out doing what they want :D
Myself, I am 6 weeks post-op, with no major complications, and starting physical therapy/work reconditioning, tomorrow. :D
I got discouraged researching too before I had surgery, and it seemed like all I found were negative outcomes. Just know that the reason you see so many posts about negative outcomes is because all of the people with positive ones are out doing what they want :D
Myself, I am 6 weeks post-op, with no major complications, and starting physical therapy/work reconditioning, tomorrow. :D
I didn't. He was one of those doctors that came in the room, looked at a piece of paper, didn't even look at me or shake my hand and left in like 90 secs. I said, "why bother." But I'll take a smaller dose starting tomorrow and see if it helps.
COMMUNITY LEADER
Oh ok, but still....seems high to me too.....
Did u let him know that u got diarrhea from it, he may have adjusted the dosage.
"selma"
It was 800mg once per day. I do remember looking online and thinking it was way too high but figured he was the doctor and knew what he was talking about.
COMMUNITY LEADER
Is that one dose...and if u had to take 2 that would be 1600 in one day....I take 250mg every other day and it has helped me with out the runs.....
It sounds high to me.
Yes, with 600 mg of Gabapentin/Neurontin, he had me take 800 mg of Magnesium Oxide. So that's pretty high then?
COMMUNITY LEADER
2 a day...OMG no wonder!! What was the mg?
Have u considered u might have a yeast issue?
I take the magnesium every other day, and the off day take a probiotic.
WIth the probiotic there is some bloating at first but it wears off.
I should start taking the magnesium again. When the dr put me on gabapentin and/or topomax he told me to take 2 magnesium tablets a day and it made my stomach so upset and I had diahhrea so I quit. I stopped taking the meds too. Maybe if I take 1 magnesium instead, it would be much better.
I'm just a picky eater. Every single thing I eat makes me nauseous to some degree except the Ensure drink that I drink for breakfast. So I try to avoid stuff like meat that seems to lay in my belly forever.
I do need to eat better. I never had junk food growing up or into my 20's but in the last few years, I think I was using it as comfort food and eat too much sugar now. I'm sure that doesn't help. I eat suckers and milk duds a lot. Horrible I know.
I have discovered almond milk lately though and it does not make me nauseous. So maybe I should look into stuff like that.
I'm just a picky eater. Every single thing I eat makes me nauseous to some degree except the Ensure drink that I drink for breakfast. So I try to avoid stuff like meat that seems to lay in my belly forever.
I do need to eat better. I never had junk food growing up or into my 20's but in the last few years, I think I was using it as comfort food and eat too much sugar now. I'm sure that doesn't help. I eat suckers and milk duds a lot. Horrible I know.
I have discovered almond milk lately though and it does not make me nauseous. So maybe I should look into stuff like that.
COMMUNITY LEADER
I also was extremely fatigued and since I started the magnesium I am sleeping better and am not as tired....I had a hard time keeping my eyes open...I am good to go now, but I do not have a 40 hr a week job, that might do me in......
The magnesium and probiotics I am taking r helping my GI issues too.
Do u keep a journal of what u eat and how u feel ....see if u have a pattern....I know u said beef, and dairy....both are something I shy away from as well....can u explain what they meant by eating issue?
"selma"
I work normal. 40 hours a week. Desk job. Yes, I get my levels up but pretty much have to keep taking them or they go down. They think it's an eating issue and not an absorption issue. I can't handle meat and dairy or most things actually. My digestive system is another victim of whatever has happened in the last 3 years. I can't eat breakfast anymore for the gastroparesis so I drink and ensure. Since I don't eat much meat or dairy, I don't get nutrients that I would get from that. I get nauseous a lot and milk and meat (especially beef etc) makes me want to vomit. I don't really notice any difference taking the supplements to be honest with you. I think the sleep disorder replaced the vitamin issue so I still feel tired all the time.
COMMUNITY LEADER
Oh ok....
But u still are working, how many hrs a week?...what type of duties do u perform at work?
U r on supplements for 3 yrs?...u never got ur levels up?...did they say u have an absorption issue?
How do u feel taking the supplements?
"selma"
I've never had the surgery. That was what he was saying is I have no blockage and wants to rule everything out before doing any surgery and to get a second opinion before he does the surgery basically. Yes, I'm chronically anemic and vitamin d deficient so I've been on prescription supplements for the last 3 years and that has kept my levels good. I never had a sleep problem until about 3 years ago. Then I couldn't keep my head up at all and was literally passing out as soon as I walked in the door or would go to bathroom at work and lay against the stall. They thought I had narcolepsy only but discovered I had sleep apnea too. I'm the one too who posted that I seriously wonder if all the vaccines the military gave us has something to do with everything because I never had any problems before the summer of 2008. My life has drastically changed since then.
COMMUNITY LEADER
The list we have is not all chiari specialists and y I always say to research the dr as u did...and the thing is there is no way to know how ur body is going to respond to the surgery or meds...
Have u tried B12, magnesium, potassium, vit D?....these all will help u with fatigue, and sleeping....
How soon post op did u go back to work?
"selma"
Forgot my biggest issue is the memory. So 4 things I could change would be great.
I actually got the doctor off one of the lists the people posted on this site for chiari people by state. After researching and getting a couple other opinions, I thought he would be a good choice.
Yes, I would like to try to go as long as I can without surgery. I can even deal with the headaches. My problem is the breathing issues, generalized pain throughout my body, and fatigue. If I could get rid of those 3 things, I'd feel amazing.
I don't want to sound like I'm drug dependent but I learned quickly that I do not know what I would do if I couldn't take Provigil or Nuvigil. Developing sleep disorders as quickly as I seemed to have, I can't go more than 3-5 hours without falling asleep unless something is forcing me to stay awake like the medication or being at work. And as I'm sure all of you know, being tired at work is MISERABLE.
Yes, I would like to try to go as long as I can without surgery. I can even deal with the headaches. My problem is the breathing issues, generalized pain throughout my body, and fatigue. If I could get rid of those 3 things, I'd feel amazing.
I don't want to sound like I'm drug dependent but I learned quickly that I do not know what I would do if I couldn't take Provigil or Nuvigil. Developing sleep disorders as quickly as I seemed to have, I can't go more than 3-5 hours without falling asleep unless something is forcing me to stay awake like the medication or being at work. And as I'm sure all of you know, being tired at work is MISERABLE.
COMMUNITY LEADER
May I ask are ne of these NS's Chiari specialists?...knowing chiari and being well experienced makes a huge difference....
And if u can function with out surgery, I would go as long as u can......
"selma"
He went over every detail with me on the MRI and showed me section by section how much room I had but as I said before he also said for some unknown reason some patients have some benefit with surgery even if they have room and good flow. So who knows. I'll wait and see what the new doctor says. The doctor I saw is a good doctor but is a neurosurgeon so he's referring me to this other specialist for whatever neurological treatment I need until/if I need surgery. Then the doctor I saw today would do it. At least he's knowledgeable and recognizes the need for surgery in some cases as opposed to all the brush offs I got from other doctors. I'm glad in that respect anyway.
COMMUNITY LEADER
Hi....I understand ur hesitation, and agree until u know what is causing the issue since they say u have no blockage of CSF, I would want to know if ur odontoid was retroflexed.This can cause overcrowding and a lot of pain.
Too many Drs do not take note of this bone and how it is positioned.
I pray u get answers soon
"selma"
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