Honorably discharged Vet (female), it took about 6-8 months to force diagnoises, once I had the surgery I found out that I had other issues connected to the chari issue ( sist in spinal fluid, spine, pool of fluid in nappe of neck). They thought a stent would be needed, but they didn't put one in.
Good luck the sist disappeared and fluid went away, but I kept and still have pain, numbness on left side(head, arm, leg, back). When questioned constantly I was then told muscle and nerve did not reattach to skull on lt. side. But I could try surgery again( with no reassurance of correction), shots or medication with physical therapy. I chose medication with therapy. I had my surgery Oct 24, 2011 and came home Dec 15, 2011 and got my first physical therpy appt. last month. So here I am medication is not strong enough, because of the situation. But I and my family are glad that I'm alive.
It's so great that some of your issues resolved with the surgery. Unfortunately decompression is a treatment not a cure, so many of us still have quite a few symptoms even after surgery. Most of us are born with Chiari and it does a lot of damage over the years. It puts pressure on our spinal cord, brain and brain stem and causes damage because of it. Lots of us have pain on one side of our bodies and none or less on the other side. I have never heard of the explaination you were given. I had left sided pain down the whole length of my body before and after my decompression. I don't know if the surgeon you saw was a chiari specialist but if you want a second opinion you could try another doctor. Physical Therapy is great but you should be careful not to do anything that would put stress on your neck. If something feels uncomfortable or feels wrong or hurts too much at therapy you have the right to question it and/or not do something.
Wendy I mentioned being a Vet for a reason. I went to get some doc's filled out for in home support services and found out that I now and have been suffering from Syringo Myleia. How do you like that?. And my doctor never even discussed or has mentioned this situation to me directly to this day. If this is the care I'm receiving ( or lack of) through this system just imagine what these kids that are coming back from the war are getting?. I was told when I had my surgery that they do about three a year at that facility( S.F). My income doesn't allow to do multible doctor visits, I'm at the in between age , so medical would latch on to any financial assets I have after I depart( leaving nothing for my children ). I contacted my state/ district rep at medical situation, but the first response was asked, who do I or if I have legal rep. When I answered no I was told there was nothing they could do, the government and military have their own ways and rules that can't be messed with. I lost my 14 yr old daughter 5/10 eight days after my B-day and with my health issues and always battling government agencies I've come to find the system is set-up for shut-up and just except it. But I've alwaysbeen a fighter ( I worry about the young soliders returning, with no support). Thank you for listening and maybe you might have an idea or two ( remember we have these new readjusted brains now) ha, ha. K
OMG. I hope the physical therapy is going well. I wonder why the muscle and nerve did not reattach on the left side. Why did they say that happened? That just doesn't sit well with me. Which surgery did you have? decompression? Thank you for serving and being an honorable military vet!
I just joined this site and I am looking to connect with other people going through the CM insanity. I do so hope that you recover entirely from this awful condition.
Thank you, but there were three direct issues that were in my blog. One the insanity of unknowledgeable doctors with this illness, the other the reasoning or lack of connected with the medical military hospitals/clinics in dealing and informing patients( soliders/vets/dependents). The final issue is with the political aspect of how if one agency is not conducting themselves correctly then the other should monitor for adjustments( but like I was told after I answered the question asked of me" Who is representing you, my answer was myself", I was then told that there was nothing that could be done on their part the military part of our government handles things in their own way which the political part of our government can't and won't get involved with. Talk about a cat chasing it's tail. My symtoms are getting worse, and yet the only way I'm finding out about whats happening is if another government agency request the latest information about me and I read the results that way. Poor, sad soldiers returning home, I'm 53 on my way to the other side of the hill, but these young people are really just getting started with real life and living. Look what we offer in exchange for them risking their lives. Worst than shotty health care/ Political representation. I'm more sad about that. K
Thank you for your service. I a wife and daughter in law of a vet. I am also so sorry to hear about your daughter. I have kids around her age and I can't imagine losing one. My heart goes out to you and I am praying for you.
I know the VA can be a very frustrating agency to work with from my father in law. It's been so overwhelmed from the wounded vets from Iraq and Afghanistan on top of the alreadt burdoned system. You're right my heart breaks for all of those returning from war and getting put into a system not equiped to handle them. I always think of that saying "If you break it you own it" The wars has broken so many with catistrophic inguries and we as a country need to take care of them. Okay, I could talk about this forever. Back to you....
I am so sorry that you are going through this. You have a rare condition and a very small selection of options and then your options are further narrowed by having to go through the VA.
I know you talked about reaching out to a few representatives. Did you reach out to your Congressman George Miller? Each Congressional office has a staff member that deals with Veterans Affairs. I would call and write till you got someones attention. RepMiller seems like a good man I would hope his office would be able to help you. I don't know if you are on Twitter or Facebook but I would also contact them using social media. Just remember the squeeky wheel gets the grease. I know how hard it is to advocate for yourself only to have doors slammed in your face. It can be heartbreaking and make you want to give up but you deserve to get some answers and to feel better. Praying for you
You are an angel of mercy. Anyway I was speaking at George Millers office ( you know the ones who told me, after finding out if I had legal representation, that ther is nothing they could do or get involved with. That part of the government runs it's system and they run theirs and never the two shall meet). I first called them and then faxed them my statement situation with documentation( showing mishandling/neoglect), but it meant nothing. I will add at the end of my statement I stated that the military system is not set-up for survivors ( look at it, and well ask some Vets). Poor mislead young soliders, who kept their part of the enlistment agreement and the government seems angry when they return a live and damaged needing help/support/guidence). I've hated to discuss this latest information with my children, espeacially with how resent the pain of their youngest sister effected us all. This is a wonderful place for me( this sight), I also climbed in bed vowing not to exit after finding out the latest medical news, but here you guy's are. Thank you so much, you've proven to be more helpful/ supportive than the doctors. I resent got involved with computers, but my eldest started me a face boook page ( by the way look at what George mill booast about helping Vets online. It's all lies, they listen to you , say we'll see, but when you cornor them( analisa, vet rep) you get sent to the sup. that I talked to, who blantingly gave me the answer they will not/ can not do anything. K
My goodness my heart goes out to you. I read the entire list of comments and your situation is a tragic example of government failure. That aside, I can't imagine losing a child and in my opinion that is the worst thing that could happen to anyone. Then when I consider the suffering that you are going through physically, it makes my life seem like a cakewalk. I wish there was some logical explanation or easy solution. It's impossible to make sense of this kind of suffering and I hope that you and your family will come through the other side of this stronger and with profound blessings.
I usually don't talk about the government or politics, but I must say that I see BIG BROTHER as an extension of the high school cliques and bullies that I avoided when I was a teen... I could really go on and on about this but I think you summed it up wonderfully with the experiential proof you expressed in your comments. Did you ever see the film "Jacob's Ladder" or "Dead Presidents"?
It's a pity that the machine keeps churning and burning the way it does. The truth is the machine has become larger and bigger then perhaps us lay people really know. The scary part is if things continue on this destructive path, the vision that the original settlers brought to this country (whatever is left of it, if any) will be completely obliterated, unknown and forgotten by the future generations. The level of deception is inconceivable. It's really scary when I deeply contemplate the meaning behind all of this. I wonder if there will ever be a solution or if we are heading the direction that the road signs are telling us.
I could truly ramble on, but I would rather share with you what little info have. I only know of (at present) one website that is commited to helping people (and VETs) draft petitions and sending them out to subscribers: www.change.org. I signed a couple of petitions on there (per email/their website) that actually did make things happen in Washington. I know it may seem hard to believe, but sometimes these grassroots venues can really make things happen. You would have to tell your personal story most likely and try to get help with that specifically. I really hope it works! I know it has for other people.
I so hope that this letter finds you well and that your family is recovering from the recent loss of your daughter. Don't be discouraged. God sees what you are going through and sometimes the light at the end of the tunnel is brighter than you ever could have imagined.
Hello. I am a Veteran also and feel your pain trying to fight the system. It's almost impossible to try to find answers. My ns did not tell me about the chiari, they saw the 2 disc's and the syrinx in cervical that goes down into thoracic and said it had to be the disc's. I still had issues after they fused C5,6 and 7 then mentioned the chiari LOL They fixed that and now I have disc's in thoracic, more in cervical and the syrinx's (there are 2 now in thoracic!!) now. Some of the damage could be service connected but they dont know which lol it's a huge cluster fk!! Pardon the language ya'll!! The VA system gives us the run around and if you have a claim in for comp it's even worse!!!
Well I guess we both deserve some laughs ( on the military), get this after my surgery I received a questionaire from the military asking me if I had communicating or understanding ( through information/language my nurses or doctors), how insane is that. The next joke is about a doctor ( whom the Patient Advocate bragged on) who refused to release my medication three weeks before surgery( I was in so much pain), then after surgery she said I don't want you to get like Michael Jackson," I don't feel comfortable giving you pain medication". So now lets see, I have Chari surgery, oh shingles on rt temple/ eye/ cornia, syringo myelia. And the only thing they were acknowledging was Arthritis. So we can just imagine what kind of treatment this young soliders will be receiving when they return ( and most of their parents are so praising the military, can't blame them they are just happy to get their child home) but little do they realize, that their child might have survived the war but not the V.A doctors, medical facilities. I recently reapplied to change my DD214 to medical/honorable instead of just honorable after 32 years of fighting and misinformation. I got the honorable in basic due to medical problems which occurred in basic( but no medical/ honorable. Now I'm fighting for compensation which they shouldn't be able to deny( they have given compensation for the last year stating medical occured in basic) now it's taking them 2 years to consider partial time ( 17 yrs ) compensation. And hows your days been??????
I am so sorry you have to deal with this. We have all had our share of terrible doctors but we have the ability to look for another one. It sounds incredibly frustrating that you are stuck in a broke system. I am a wife and daughter in law of vets. My husband hasn’t needed the VA but my father in law uses it all the time and has been happy with it. I think some of it depends on location and attitudes of specific facilities too. We as women are also often treated like we are emotional and weak. I never understood how people would think that we want to feel this way. I hope that things get better for you soon.
Wendy
Thanks Wendy. I do understand your in-law being satiafied, you're right first he is a man, then there is this thing that if a vet made it back alive that they are usually grateful for any and all given. I've had quite a few discussions with vets(males) and their wifes. Where the men seem satisfied, the wives aren't. They tend to notice the lack of, and constant returns on medical issues that obviously should have been noticed after( lets say the second/ third visit). And say that " well we do get free medical/ lower charges than a regular hospital/ doctors office. But my question still remains what about the great deal ( if you put your life on the line, not get killed we'll provide services in gratuity for risk of life and limb). I guess they didn't brake their ( government) part of the agreement. Just the wild bush type of medical care( look at the doctors/ staff/ facilities). I just think that one's life should have more value( espeacially since it's widely advertised how much vets are loved/ honored/ respected/ and how much we needed and owe them). Just a thought, one and one will always make two. I also guess that's why some years back they ( news crew, not government) televised the horrible conditions/ treatment at V.A hospitals all over the U.S. Won't get better until WE make it better.......
I have posted a document on www.change.org, that if you are interested in change then you will help by signing and getting something done, or at least attempt to. And not just sit back and discuss how hard and horrible things are and as the military says ( hurry up and just wait). Thanks, please, if you all mean what you say about honoring/caring and supporting the vets that have risk their lives for you, now you can show you mean it( not just mouth it). Tell your friends, please sign. Lets start making changes for the young vets returning home....
Well forum I guess my situation rathered disturbed a few of you, and I am truly sorry. No if, ands, or buts, this is just my life and the before, after, during and present effects that I thought I could share and maybe help another vet with my same issues. I do get heated and emotional about these things, This is my life. Best wish's to all, and I really hope that I gave heads up advice to someone. K
I just read your story i had surgery for chiari jan 30 2012. my right side does the same thing you are talking about and i have numbness on the right side of my face then my head feels like there is something squeezing the inside of it bad neck pain and tightness. i am going to have a eeg and a emg thinking i may have some nerve damage or something about the nerves in the neck
I'm so sorry to hear about your situation. But I really know your pain. Did you experience neck,back pain?. From what someone told me Syringo Myelia tends to go along with chari. I don't sleep on my left side your right because it feels numb, strange. It's been really cold where I live ( which is unusual to get this cold) and I have been having a constant pain from the front of my face on the left side to the middle of the back of my neck. I got scared ( this was last night). Since I had the I guess you could say the basic chari surgery it seems like the neuro doctor is just brushing me off.I get the impression he feels like I made it through the surgery I should be happy with that. I wonder does anyone else have to go through what I have to to get information from their doctors, or what I went through to even get them to acknowledge and do a cat/ moi ?. Please tell me how you do, I really hope things work out well for you.....
i have back pain neck pain tight feeling in my neck my shoulder hurts on the right side and my arm feels week i feel like i am just a mess. this is really taking a toll on my life it just has not been the same since the surgery and that has been a year ago. the way i felt about my dr the neurologist is i felt stupid and like you said i feel like they think i am making stuff up i was in the hospital a couple of weeks ago for 3 days and the dr at the hospital said it is all related to the chiari. so i followed up with my neurologist she told me she just can't pin point the problem and in some what she told me she was done with me that maybe i need to get a different dr so i did i am starting all over going to have a eeg and a emg. all of my ct scans and mri they say look fine and i have had a lot.
I'm sorry to hear that, but the story sounds so fimiliar. I also have been dismissed by my dr and been given all sorts of test and been told they look o.k. I really think the dr's are either lazy or really don't know what to do. Our issue in the last couple of years has just become prominet. What I had to do was theraten the dr and staff and who ever would listen that I was going to a more prominent medical facility, and that when they found and acknowledged my issue that I would make it know with documentation how they had dropped the ball and be in line for some sort of repromand. Then low and behold we found that you have chari at a lesser stage(but I couldn't stand without falling, numbness from feet up, migraines so bad I cut my hair off because it hurt, had to call 911 twice one of those times because I almost fell through my glass shower door. First told me to lose weight, which I had gainned just eating and sitting at home cause it became a hazard to move. Sad, but you have to fight to get adaquite care, there seems to be little to no honor in the medical profession anymore. All I can say is "THIS IS YOUR LIFE, YOU ONLY GET ONE. SO RAISE THE HAIR ON YOUR BACK AND FIGHT FOR IT, NOTHING IN LIFE IS EASE, DO WHAT YOU HAVE TO TO GET WHAT YOU NEED' much luck..