Chiari Online Support Group

Moving forward

Hi everyone!

It's taken months. The VA has finally approved me to see a Chiari specialist in Tulsa, Dr. Clifton Baird. Though, it was a battle. They seem to think that I should continue with occipital injections that do not work and trying different doses of meds that don't work. I've been having injections for two years. I'm so tired of fighting with people who are supposed to help me

I feel like I have been through a war with the medical system. My memory has been compromised. My dignity, my quality of life, I feel like an old woman now. I'm 44.

I can't remember anything. My fingers tingle and my hands go numb when I drive or do anything like cut veggies or something like that. My head hurts all the time. I walk into walls and stumble. Even my hair. The back of my head is really tight and feels like it's on fire and ready to explode. For two years.

My only saving grace is my TENS machine and don't laugh my Tom Hiddleston movie collection lol. I write. I have a book available on Amazon (A Second Look by Danielle Williams if you're curious). It's the only way to get my feelings out is to write. I go to therapy where I am told that pain isn't always physical. It makes me want to crawl across the desk and choke her sometimes lol. I know they mean well, but sometimes it gets old.

Anyway, will keep you posted. I'm scared he won't be able to help me. And I'm scared he will. Is that weird?

Take care,

Dani

I’m a vet too. I feel your pain about the VA. I have been battling with them for 5 years now. I’m not a big fan considering my experiences with them. If you live more then 40 miles away you can opt for civilian care and get away from the VA. The rest of us have to stay and take whatever treatment they dish out and it’s such a broken system in a lot of ways. It’s a shame cause it overrides the good that is there. You’ve got to stay strong and hang in there. We just lost a sister here and I’m I’m not willing to see the VA take another one without a fight. I think knowing how the VA can be that it is natural to have hesitations about the care or treatment you are going to receive, but you are going to have to take a leap of faith here and see what the specialist has to say. He may surprise you. At least you are getting that chance. And if what he has to say still isn’t sitting well with you then get a second opinion yourself. I know the BS the VA puts us through and how badly they sweep things under the rug and cling to thier misdiagnosis. And if they end up with two of us who it turns out to have been the problem for all along then it’s time some major education and training needs to be done at the VA to increase awareness and prevent this from being overlooked in the future. They already have been failing us as females, they need to start making things right. If you feel in your heart this is a physical issue when you know yourself and your body better then anyone else then see it through. You are not the only one. As a sister you have my support anytime you need it! Us veterans have to look out for one another! Let yourself be relieved in the fact that you are finally getting to see the specialist that you need to see and take it as a step forward and cross the other bridges once you get there. The VA has a way of trying to make you crazy by insisting it must be your mental health and blowing everything else off including the physical evidence in black and white in front of them. Although there may be other contributing factors due to exposures over the course of our careers, I think the enquiry you are making and the course you are pursuing is valid no matter what the outcome at least you should be able to persue it now till it gets sorted out one way or the other. They also have a War Injury and Illness Center for unexplained symptoms that you can ask to be referred to out in Washington and New Jersey. I know how hard it is. But hangin there and don’t give up. Big Hugs and Prayers!!! Kris

Hi Dani, though I am not a vet, my husband served in Nam/Cambodia and has been going to the VA for about a decade, before that every time he tried to receive care from them, he was told to go home and not come back, so I am very familiar with exactly what you are talking about. Most of his problems can be directly related to his exposure to the endless list of defoliants, agent orange was only one of them. He was primarily in the Iron Triangle, so he was exposed to everything you could possibly imagine, and then some.

One of the things that would help you to wade through some of this is to apply to the purple heart club, if you received one during your enlistment. In some cases it will really speed things up, and open doors.

There should be a patient advocate in every VA who is should have good advice and resources to share with you. I see you are in an area with 7 different hospitals, so if one doesn't seem too helpful, there is always one of the others, do all you can to get their names and phone extensions.

The local VA rep is also a great source of resources and good advice for making your way through 'the system' and explaining things like being declared disabled through them, if this is a goal, is much more complicated than you may think. For instance like being declared 100% is more like you have to qualify at 1,000%, as being disabled in one medical instance, will maybe only give you 5% total.

Yes, I am familiar with the idea of 'talking your pain away' idea, and to some extent a good counselor can help you with coping with the stress of being ill or injured, they can teach you new ways of doing things, have hellpful coping skills, but as one who suffers intractable chronic pain from repeated car accident injury and genetic degenerative autoimmune diseases, there is really no talking away the pain. That is just my opinion though. They are sometimes helpful with the resources too, so take advantage of that whenever you can. Keep a notebook with you at all times, and keep track of those who can help you in any way. Ask, ask, ask and ask everyone! If you have to wait in lines, strike up conversations and ask patients.

Read (and keep) the brochures they will have lying about, you would be amazed at what you can learn through them that will help you at different times.

Keep records, and get the doctors and PA's who see you to document what each appointment is used for, and hand carry a list of problems and questions, give them a copy and keep one for yourself. Keep track of the names of all tests, and physicians, don't forget the dates either.

They will have records, believe me, but only if you do! They may tell you they have no record of something specific, until you offer a date, then you will discover that they most certainly do have them!

There should be a University hospital of some type that is affiliated with some of your larger city VA centers. For instance the Baltimore, MD VA is affiliated with the University of Maryland, and in these cases you will actually see the physicians of the teaching hospitals. These are generally where you will find the best care, and certainly the most advanced care, so referrals to those facilities are a must.

You simply MUST be your own advocate, and you can never give up on this, and you have to forever keep an eye out to make sure someone is not dropping the ball. This is my biggest complaint with their care. Much of this happens through the constant change of physican staff.

Some of these things may sound like common sense, or you may already know all of this, but reminders are good. Chronic pain can sometimes rob us of our best ability to think and remember.

My husband has a couple of Army buddies in OK, one in Ponka City, and one in Sparks. He also has another buddy who is an actual VA rep in TN, so If you have a specific question or 10, let me know, and we will call them, and do our best to get you the right answers.

Kris is exactly right when she tells you NOT to give up, or give in!

I sincerely thank you both for your service to our country, and hope that you can get to a better place very soon!

Wishing you well,

SK

BTW, I had to google this guy, so here he is for any other who was stumped!

http://en.wikipedia.org/wiki/Tom_Hiddleston