Tazz, Not sure clumsy is the right word. lol But you are definitely not alone. I for one find myself to be a lot more “clumsy” if i do things slow sometimes. If I am moving at a steady pace going form point a to point B without interruption I do ok. If I get distracted then I get “clumsy” lol.
Hope you are doing well.
Doing okay if you could call it that. Some days are worse like because of weather change in last couple of days I’ve been really dizzy and light headed. But like you said dekabe if I’m at a steady pace I’m okay. You seem to put right the way you said it. But lately having issues with neck area especially when trying to lift something heavy over head or looking up too long.
Tazz, I can definitely relate to the neck issues. I still can’t look up for more than just a few seconds. Lifting things over my head are pretty hard and trying to carry heavy things is almost impossible. I have enough trouble with my balance, adding weight to it is a nightmare. haha
My best friend had to paint all the ceilings in my house. There was no way I could have.
Went to see a second neurosurgeon last Thursday and she has said everything I have done research on. But she also says based on my MRI results over the last two years that I need to do my surgery asap. So I’ll be be booking it in February hopefully it’ll be soon enough!
Tazz, I hope so too. I am sure everything will be fine. I am glad you found a surgeon that you are comfortable with. In my case I had a neurologist that I saw first and this guy did not have a good bed side manor. But luckily for me he did not do the surgery, he had a surgeon that he worked with that took over my case. The surgeon was the nicest guy you could want if you have to have that surgery.
You need to remember that a neurologist doesn’t do surgeries only neurosurgeons do. Neurologist only deal with the aspects of what you have and pain management.
Yes, I know that. hahaha they were colleagues, I was just referring to the fact that when the neurologist handed my case over to the neurosurgeon, it was huge relief for me as I was only 14 the first time around so I was very nervous about the whole thing.
Did you get your surgery scheduled?
Sorry hehehe some people don’t know the difference. Spoke with the surgeon secretary yesterday. I need to do another MRI with a dye and a swallow test. She had said that there are many of us whose lost their gag reflex because of Chiairi. So I’m in the process of getting this done before I do the Surgery. She also has me on light duty for work. I’m so happy for this because karma is a you know what. The big big boss knows he just lost another good worker. He’s understanding but he also doesn’t like it either. But I don’t care because my health comes first.
Hey Tazz! Glad to hear you are getting the surgery scheduled. I would get it done as soon as possible for several reasons. The sooner you get it done, the less risk you have for permanent nerve damage. Also, you,might want to see if it can be done this year rather than waiting until February for financial reasons. I don’t know what kind of medical insurance you have, but if you have a deductible that has already been met this year, it would make sense to have it done before the end of the year. If you wait until next year (again, this depends on your insurance), you would have to start fresh with a new deductible. For me, my deductable is $1,000 each year. Back in September, I had already met the deductable, so that was one less thing I had to worry about prior to my second surgery on September 16th… With this beast called Chiari that we have, it’s hard enough to deal with alone. Add on the financial burden, and your stress levels go through the roof! Hopefully your insurance is better than mine and this is not something you have to worry about.
In regards to the MRI, it sounds like they are doing it with, and without contrast. I had to do the same thing a couple of different times. In fact, in the last two years, I have had a total of eight MRI’s. I absolutely HATE them!! I can’t stand being stuck in a tube for a minute, much less the hour and forty minutes that most of them take!! It also wouldn’t surprise me if they make you get a Cine MRI right before the surgery as well. That type of MRI is strictly used for detection of the SCF. The good news there is that one only took about eight minutes!! If you are like me and get a bit closterphobic, don’t hesitate to tell your doctor. They will gladly get you some Valium or Ativan (or something similar) to help you out!
Well, hang in there! Having CM is extremely difficult to deal with. The good news is that you are not alone. There are a bunch of us out here to talk to whenever you need it!! I’ve had a pretty rough week, so I’m a bit late jumping in on this particular conversation, but I’m usually pretty good at writing back fairly quickly. Also, just reading a few messages here and there isn’t enough, so if you ever need to actually talk, just let me know and I’ll be glad to give you my number! For now, keep your spirits up and hang in there!!
Trevor
haha, I was glad he was the neurologist and not the neurosurgeon. hahaha. I am curious about the gag reflex thing. I tend to choke a lot and when it is in a restaurant, it can be kind of embarrassing. lol
I am on the verge of telling my boss the truth about my Chiari and Hydrocephalus. I have kept things a complete secret my whole life, but it is getting harder to hide certain things. A lot of people think the surgery is a cure, but for a lot of us, it is more of a bandage.
Tazz, I pray your tests go well and you get the surgery scheduled soon.
Have talked to surgeon about cine MRI and she says it’s not needed, but a different kind of dye tested MRI is needed for me. Only thing about the MRI that I hate is the noise and the coldness. But I keep forgetting that you are in the state I’m in Canada so I’m able to get sick leave unemployment for up to 15 weeks. I have to get note from doctor but my family doctor will do whatever it takes so that I can be comfortable as long as possible. I just try to keep busy when I can’t take the headaches or dizziness anymore I lie down and play on my iPad. Take out my frustration on the angry bird game😣
Thank goodness that since I was a child that I’m able to go all day without eating anything because that’s when sometimes I really start to gag. But I know sometimes even when I drink something too fast I start to choke. I know I had the hardest time trying to explain Chiairi to my dad because he sees medoing things but doesn’t see the dizziness or headaches. But I have to explain to him that it gets worse or less depending on what’s happening if it’s a good day or bad day. I don’t know how your boss is but I know I got a relationship with my manager and when I told her for the surgery, light duty at work she went right away to research it and she realized how many of the symptoms she saw in Mr in the last three years of working with me. So don’t be afraid try printing out some general information or asking your boss to see if he/she knows anyone who has to deal with any health issues on regular basis. Might be understanding😋
Tazz, I kinda wonder now. I was fist diagnosed so long ago and all three surgeries were so long ago that I don’t recall anyone telling me about the other issues that I might Experience. Sounds so stupid. I knew the obvious, headaches dizzines, balance of course but i never made a connection with the frequent choking as being a possible link to Chiari. I know what you mean though, people see you do things and will never understand the challenges we face everyday just to be able to do things. It is not easy most days.I have been told that I am an extremely noisy sleeper too, like I am in constant pain. I wonder if the headache discomfort gets audible at night? lol Also I am told that if I am not moaning in pain while sleep, I sound like I am gonna choke.
My boss and I have become good friends over the years, but it is still going to be tough. Even my family know very little about it, my boss knows nothing about it. My best friend has figured a lot out just by being around me for years, but I was no help in supplying info. As for my Family, I was a kid and so were all my siblings. My Parents pretty much took care of everything so i just did what I was told. 
So besides me, the only other people (parents) that knew much about it are both gone.
Hope you are feeling well today, I know the good days are decent, the bad not so much.
Trever, Sorry to see that you have had another pretty rough week. I hope things start improving for you soon. Well, I hope that for everyone on here actually. Including myself, ha. You are right that CM is extremely difficult to deal with.No one realizes the strength that it takes just to get through the day somedays! You have a child to take care of on top of it all don’t you?
It is really obvious to me how easy it was for me to sweep this all under the rug for my whole life. I read you and Tazz’s posts, and realize I knew very little about what was happening to me back then. I knew what I was told but most of that was coming form a Chinese doctor that was very hard to understand in the first place. It wasn’t until I got on here and started doing some other research that I started putting things together and helping make the things I remembered make sense. Like putting together and old puzzle and finally found a few hundred of the pieces that have been missing.
I am normally reluctant to even start talking about my condition because I am afraid that a lot of pent up questions, frustration, hurt, and even ignorance will coming through the floodgates.
And I will stop here before that starts to happen now.
One of my biggest fears is telling someone something about all this and having them look at me and say “yeah, I don’t wanna hear this” Then never look at me the same.
Hope your days start getting better!
Dennis
Dekabe, there is nothing you could ever say to me, or anyone else on this forum that would make me think you are silly, stupid or any other negative gesture. If you have questions, please ask! I may have the same question, or had someone answer it for me at some time. This disease is a beast. We have to do everything we can just to try to feel halfway normal…which by the way is a pretty good day for us if we can get to halfway normal!! lol. Look, the only dumb question is the one that is not asked. Period!!
Yes, I have an eight year old daughter to take care of. She’s with me ever other week. She’s what keeps me going most days!! I thank God for her every day!! It is hard though, knowing I can’t do a lot of activities with her that other parents can. Like today, she wanted me to jump on the trampoline with her and I can’t. She knows that “Daddy is kinda sick”, so she understands to some extent. I honestly don’t know who it’s harder on really.
Years ago, I had the same fears as you and Tazz in regards to telling people, especially at work. But then I realized how much it was affecting my work, and I thought if they don’t know, they will just think Im a bad worker!! Btw, I’m a Labor Relations / Human Resources Specialist, so I have to deal with tons of people every day!! In fact, I currently do all the training, so I usually have groups of 20-40 employees for days at a time! It’s awful when I’m having bad days. As you know tho, I’m currently off work.
As I’ve told you earlier, before I was diagnosed, nobody believed anything was wrong with me. Not even my father who’s a doctor and my mother (a nurse). Now, I’m seven weeks post op for my second surgery and everyone thinks I should be cured and back to work. Everything is just great for me!! Yeah…I wish right?! I don’t know if I’ll ever get people who don’t have CM to understand, but I have to try!!
My boss did do something really great for me last week, so it’s not all terrible. The short term disability company we use at work (Unum) has been just awful to deal with. My neurosurgeon has me off of work until December 12th, and likely to be extended. Unum has a nurse and a manager (with no medical certificates whatsoever) who states that I was to return to work on November 9th, despite what my surgeon said. It’s just crazy, and they closed my claim out. My boss jumped on top of this and had a meeting with the president of benefits over our entire North American operations. They agreed that I should remain out as directed by my surgeon, which was a massive relief. I thought I had loss my job for a few days. And at minimum, I thought there would be no money coming in. I’m in a massive financial mess right now bc of CM. I have enough debt for an army!! What we have to deal with on a daily basis is hard enough. When things like this happen, it feels like it’s impossible to live with this condition. Anyway, I guess my take away from this situation is that we have to have faith that people will do the right thing for us, but we must tell them everything. Not every body will understand or even care at times. But we can’t find those that we need if we don’t open up in the first place!!
I’m so glad I found this board. Writing to all of you is unbelievably helpful! I hope we can stay in touch! For now, I have a hungry daughter to feed!! Talk to y’all soon and God bless you all!!
Trevor
Trevor, Are you still doing fairly well with your headaches? I know last email from you, you said you at least had not had any of the headaches for a couple weeks. I hope your balance is improving and that you can get it all back. I never got mine back, but I think that may be because of the Hydrocephalus on top of the Chiari. Do you feel sometimes like your legs and your mind don’t communicate too well? Ya know, the thing that really makes me feel bad is that I have been living with this longer than a lot I have seen on the site. And I have so many questions that just seems like I should have known all of this for a long time now. You all seem to be so much more educated on CM. Like Tazz mentioning the Gagging, I have had so much trouble with that my whole life, but had no idea it was possibly related to Chiari. I have had my best friend tell me that I should go to a doctor for it because it is scary and not normal. But I just brush it off, I have had more time in front of doctors than I ever want to do again. Now I am wondering if I should. Also, Has anyone else been told that they are very noisy sleepers? Not actually snoring just like they your in pain. If I am not making that noise, I guess I am choking or sounding like it. I can answer things on how I feel, but not sure how I should feel. My Doctor was great and the nicest most caring guy, but I was never told what to expect or how I should expect to feel and the things I would have to just live with. It was a different time. It does really suck too, that all it takes some time is for me to slip on my kitchen floor to turn a good day into a several bad days. Have you or anyone else had this be the case for them as well? Winter freaks me out anymore. I am so worried about the ice. More so now than I ever have before. As I stated a while back, I have been employed and had good jobs since I was 22 and have worked my way through and up to different employers and have been in project management for the last 15 years. But it is getting difficult to be a manager for groups of people when all you want to do anymore is go home so that you don’t have to put up a front all day. It is tiring! But I can confirm that we can do anything that anyone else does and in a lot of cases, we put forth more effort than most. You are right, half ways decent for us is a great day. I am positive that people who never experienced this kind of thing even temporarily would be laying around complaining. But we do what we have to do, that to me is strength! We go through the day just trying to appear as normal as we can. That is what gets tiring. For instance, I am exhausted by the time I get off work because I put so much energy into walking a straight line etc… through the aisles at work, but I went into Church to clean after work and it was like a weight was lifted. No one was there and I was able to just be me… I could have gone for several hours and been ok. ( I do this a lot, because it is really one of the times that I can always count on feeling good or at least can work through it.)
It really is upsetting that no one believed you. I just can’t even fathom that. But I do believe that everyone thinks you should be cured now. But I know it doesn’t work that way. I am still not cured and never will be. There is no cure, the surgery is a repair in a sense. Nothing more. So believe me when I say that I understand and you can trust me and I am sure everyone else on here.
I was off work for a year after I had my last surgery, and in physical therapy for months to learn to control my balance or lack of balance. I was still living at home (only 18) so the income loss was minimal for me. My parents insurance paid the bills. It is so awesome that your boss stepped up to help you out. I can’t imagine going back to work after just seven weeks. That is just not right. Wow, This is not hernia surgery or something minor. It is major life threatening surgery with lasting affects that you need to learn to live with. I am just speechless.
I worked with my boss at my last employer for @ 9 years and he went out of his way to lure me into my new employer after he left to go there. I was his go to guy, he could always count on me being one step a head of him. I just fear with the changes in my condition, that he now is wondering what is up. So I know should have a chat with him, but I have absolutely no idea on how to start the conversation. Heck I wouldn’t even be honest with myself until just recently. That is awesome that you have a little girl that you can concentrate on and I am sure it helps you get through the day some days just caring for her or thinking of her. I have several nieces and nephews, but a couple of Nieces that I am very close too. I can honestly say that when I would be spending time with them, I didn’t let my issues bring them or me down. They were both from broken homes and were closer to me than their Fathers so we remain close to this day and they are both adults. But I think it is time I am honest with at least one, she wants me to go live in the same state as her. I feel like if I do that she needs to know that I have these things going on. I know what you mean, it is hard to tell them you can’t do something that they take for granted and that everyone is able to do the things they can do. But I am sure that it really doesn’t matter to her. As long as she has a good relationship with you. I bet just being around her can make a bad day good!! J You are fortunate to have her! I am pretty sure it is harder on you than her, so I doubt you need to worry about that. My nieces know nothing of my condition yet, and they think the world of me. Only God knows why. But I will take it. lol
I hate to hear of the debt this has caused you, is it from the surgeries or all from being off work? I wonder if there is anything you can do by talking to the doctors and hospital about reducing your bill or something. Can you get some temporary additional assistance until you get back to work? I have really only chatted with you and Tazz so far, I have read a lot of posts. I have been very conflicted about responding to a lot of posts. In some ways, I feel like this is a support site and I am not feeling so positive sometimes. I do wish that I would have found it years ago. It wasn’t until I did just months ago, that I realized I was not actually alone. It is so good to know that there are so many that do understand.
I look forward to hearing from you anytime! And I am sorry my emails are so long but I just start saying stuff I have never said out loud (so to speak) and I get a little carried away. If you ever want to, don’t feel bad about telling me to shut up!! hahah
Dennis
Thanks for the support. But I gotta tell one thing about the hospital’s up here are somewhat stupid. The neurosurgeon wanted me to do a swallow test and a MRI done with a dye. So last Monday I get a call for the MRI appt. And they turn around and tell me that the radiologist had decided that I didn’t need the MRI with a dye. After explaining that I do because already saw a set of MRI results without the dye, she needs one with the dye. After gaving no patience with the woman I decided to call the neurosurgeon office and explained to the secretary what was said she said you’re right and will callback. The next day Secretary calls back with new MRI appointment WITH dye. So now I have test done and one to go before I book for surgery.
Also in a lighter note the neurosurgeon also says that once I have the surgery done the syrinx in my neck will reduce in size. She says that because there’s a blockage of the CSF flowing properly that’s why the syrinx formed.
Hey Trever, Tazz and everyone else on this post and site, Have a very Happy Thanksgiving!!!
As bad as things might be sometimes, We all have many things to be thankful for.
So sorry for the late response! I hope everyone had a fantastic Thanksgiving! Mine was actually pretty good! I usually go to my oldest brother’s home, but I didn’t this year. I just couldn’t go through with it this year. Too many people who don’t understand and sort of look at me like I’m a bum or something!! So, I cooked for my daughter and myself and had a relaxing day!
Dennis, so much to respond to! First of all, don’t ever think you are writing too much. Man, this is mandatory reading for me. I learn something just about every time I read a post from you or Tazz, and that is invaluable to me. When you first started going through this Dennis, it’s not like you had the Internet (and Google!!) to help you find information. These days, it’s much easier, so I do a lot of reading! Yes, I feel like my brain and my legs are not on the same page quite often. I also have a tremendous amount of weakness in my lower half as well. In fact, the weakness bothers me about as much as the pain does. It’s what keeps me from doing a lot of things these days, and scares the crap out of me when thinking about returning to work. My really bad headaches are basically gone, which is a miracle in itself. However, I still get a lot of low grade headaches, but they are much more manageable than the bad ones I use to get.
In regards to my debt, it’s a combination of lots of things. I got divorced about 8.5 years ago, and it’s an endless process. My ex wife is hell bent and determined to take my daughter away from me. She takes me to court at least twice a year. The first one is to seek full custody. She loses every time. So, after she doesn’t get full custody, she takes me back to court to try to bleed me dry of money, and she usually wins there. It’s really sickening. She doesn’t understand that she is only hurting our daughter because it becomes harder and harder for me to provide for her when she takes so much away from me. And the court system doesn’t really seem to care. I make a very modest salary. About 70 a year. I’m very greatful for that as well. However, with the money I have to spend on lawyers, and then to pay her each year, it bumps my salary down to about 45 a year. It’s very difficult to provide on that amount. I know it’s more than what a lot of people make, but after paying my mortgage, student loans and car payment each month, there really isn’t much left over for anything else, considering all the other bills I have. And it’s not like I live in a mansion either. I have a very small 1100 square foot house. Again tho, I’m very greatful to have it because I know it’s way more than a lot of people have. This is crazy, but I have spent just over 70 grand in attorney bills since the divorce. Money issues causes me a tremendous amount of stress, which as you know, doesn’t lend itself very nicely to helping with CM.
Anyway, As bad as it may be at times, I try to remind myself that I’m still very fortunate that things aren’t worse, like it is for so many other good people. I mean, I’m not blind, def, confined to a wheelchair, etc… I’m not a veteran who lost his/ her legs fighting for our country. I’m actually truly blessed that things aren’t worse. And I have a beautiful and loving 8 year old daughter that is simply everything to me. I have God and I have my daughter! It’s more than enough!!
Tazz, having CM is bad enough as it is, much less having to go through the craziness of the med appointments, MRI’s, surgeries, etc… Hang in there! It will all come together for you. However, if you are not comfortable with your doctors, surgeons or the hospital that you are going to, then please find a new doctor. This isn’t like having s broken arm or something of that nature. This is brain surgery, and is a very serious matter. The last thing you need to worry about is the competence of your doctors or the process as a whole. They should be doing everything they can to make this process as comfortable as it can be.
Well, I think I’ve written a book this time Dennis!! lol. Hey look, if you’d like, send me an email at the address listed below. Sometimes, an email or message just isn’t enough. So, I’d be glad to give you both my phone number so that we could all talk! One on one, or even a group phone call! I’m sure glad I found both of you to message with, but actually having a conversation with y’all…well, I can only imagine how much good that could do for me, and maybe even yourselves. Oh, before I forget (which I do a lot these days!! lol), I will try to talk about the gagging issue in my next message. For me, this is something I’ve never talked to anyone about, and I truly mean anyone. I think I’m ready to talk about it…with you at least. It’s a very serious matter for me, and I’ve kept this secret of mine for 27 years now. Alright, now that’s the end!! lol
Love y’all. God bless.
Cole
■■■■■■■■■■■■■■■■■
Ps… Again, please send me an email if you think you might want to actually talk one day!! And if not, that is perfectly fine too. Tazz, maybe Dennis and myself could tell you a few things over a phone call that might help ease your mind before the surgery!! I’m not sure what the policy of this site is regarding giving out email addresses in messages, so I thought I d start with the address and see if that goes through!