Tag Archives: advocate

Advocating For My Wounded Warrior (Part 3)

I’m sorry to have been away from my blog for so long. It’s been a very, VERY, busy year. Work has been kicking my butt and by the time I get home I really don’t want to do much. We’ve had some other things kicking our butts too, but that’s another story (click to read more). I’ve also taken on a new hobby that incorporates some “me time” along with my love to share smiles and helping veterans. I joined Pinups For Patriots! YAY! Go me! If you want to check out what I’m doing in the Pinup world, please like my Facebook Page.

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Anyway, what I would like to talk about today is the fact that I haven’t stopped advocating for my husband when it comes to his pain and the VA. In fact that is also another part of my busy life. So, last year in October was his last civilian Botox treatment.  He was due for another one in late December, but you know how the Holidays always throw off everyone’s schedule. So we went to schedule it in January. For the past 3 years he has been having this done, every three months, all we’ve ever had to pay for was the doctor’s visit. The Botox was covered. Well, 2016 rolls around and not any more. We will have to pay $1000 every 3 months in order for him to get his Botox. We just couldn’t afford this.

So I asked him to ask his Primary Care at the VA to refer him to VA Neurology. He had that appointment on the 3rd of February. When we explained the conditions, he said, “No problem. I can refer you to the Pain Center for that.” We also brought up the fact he wanted to try Ketamine Infusions. And the doctor said he would include that in his referral and we could discuss it at the Pain Center.

A month goes by and we never heard anything. We logged into MyHealthEVet every so often to check for an appointment. Called the VA Pain Center and they said they never received a referral. He finally found out that on the 4th of February, a different doctor went through his records and saw that he was getting care outside the VA for Botox and revoked the referral.

Joy.

Ok, two months have gone by since the original Neurology appointment. He had his first visit with the VA Pain Center, his consult, on May 6th. May 6th! And even though he’s been there before he STILL had to go through his history. Oh and it’s all right there in his medical records! But they decided to start from scratch. He had to go through a “test” procedure with steroids and lidacaine, something that he’s gone through so many times before and it didn’t work. It was documented in his VA medical records that it didn’t work. Yet they wanted to do it again since “it’s a new procedure.” Um, no it’s not. TheHubs explained to the doctor the exact procedure he went through the last time he was there. It was the same procedure the doctor was explaining to him. But, let’s try it one more time. That happened on July 5th. And guess what?! It did nothing for him.

Ugh.

So we had to wait even longer to get that Botox injection. His next scheduled appointment was 3 October. This was when he was to have his Botox. Even though we brought his civilian doctor records of the last 3 years worth of injections, the VA only does half the dose at double the time. Oh this is so frustrating. During this appointment we also found out that the VA Pain Center is not trained to do most of the areas he has been getting Botox injected into, which happen to be his worst areas. So they are writing in his notes that he needs a referral to go to Neurology to do that. We also mentioned Ketamine Infusions. They said they have done a few of those in the past but he needs a referral for that as well. The nurse instructed us to contact his PCP to get that referral.

We sent a secured message to his PCP on the 4th. We get a reply on the 11th stating that Neurology is submitting a referral to the Choice Program (where he can see a civilian doctor). Of course we haven’t heard anything. I call up The Choice Progam and they don’t have an authorization letter for me to speak on his behalf, even though we’ve sent it in multiple times over the years. Apparently they are not the VA, but work with the VA. Ok. So I finally get to talk to them and they don’t have the referral yet and it usually takes at most 3 business days to get it.

We sent another secured message to his PCP and the nurse instructed us to contact the VA Neurology. VA Neurology knew nothing about a referral. They said his Primary needed to submit the referral to the Choice Program. Emailed his PCP back, and they said, no, Neurology needs to submit the referral.

Oye ve! Can we please stop this merry-go-round? I want off!

When we emailed the PCP back, the nurse said that she will “forward this to a specialist,” whatever that means.

So, I’m still fighting for my husband for him to get the care he deserves and hopefully some relief from all the pain. It breaks my heart to see him balled up in bed, ripping at his hair, squeezing the crap out of his neck, nearly in tears all because of the pain.

This was taken outside the VA Pain Center when he went in for his procedure…the first time. I just love it!

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LadyJai

Related Articles you may like:
Advocating for My Wounded Warrior (Part 2)
Advocating for My Wounded Warrior (Part 1) 
Our Story

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Advocating For My Wounded Warrior (Part 2)

We recently completed our annual eye exam. (You can read more about that here.)

We had to spend about $600 on TheHub’s glasses. His eyesight is increasingly bad. Every year he needs a new prescription. And glasses aren’t cheap. And since he’s become photosensitive, we decided to get him a pair of prescription sunglasses. So that tacked on to the price tag. Luckily, we used his old frames for that. I was hoping that would help him get out of the house more. But they aren’t as dark as we were hoping, nor are they as strong as he needs.

So, I’ve been trying to think of something he can do so he’s not stuck in the house all the time, something he can be passionate about again. And I posted the dilemma I have to one of my caregiver groups I’m in. I was blessed to have found it because the lady who runs it, her husband also suffers from migraines. She pointed me to the VA for their VIST program (Visual Impairment Support Team. Her husband goes through them and they have given him two pair of special glasses, one for inside and one for out.

During my research on this, I found that in our location it is called the VICTORS (Visual Impairment Center to Optimize Remaining Sight). I called them yesterday morning and they said they don’t normally see migraine patients, but they put in a referral for TheHubs to be evaluated by this program.

He now has an appointment for the end of September. I do hope this works for him, better than what we can get on the civilian market with our limited pocket-money. And allows him to get out of the house better, and more often.

Wish us luck.

LadyJai

Related Articles you may like:
VA Appeal Update #5
VA Appeal Update #4
VA Appeal Update #3
Our Story

 

Advocating For My Wounded Warrior (Part 1)

So, yesterday was a day of HOPE. Today, not so much. But I’m still advocating!

I’ve been following a the use of magnetic stimulation for migraines since 2008. eNeura, Inc. has the first FDA approved personal magnetic device for use with migraine patients. In 2013, the FDA approved its marketing. I attempted to contact the company then to see about getting my husband into a study or find out any more information. However, no one ever returned my email. Their site was basic and they only had a contact for press relations. I tried anyway.

We know from first hand experience that magnetism WORKS to relieve his migraines. When he was still in the Army, and the migraines weren’t as often, nor as bad, he would keep a neodymium magnet inside his cap and it would help. When they went to the berets, though, there was no place to keep it secured and hidden. So he went without. Every time he’s ever had an MRI he’s had a very bad migraine. This is not unusual, even, since he gets them at least 4 times a week. Every time he’s gone into the MRI machine, he falls asleep almost instantly, and then wakes up with NO MIGRAINE. So we know magnetic therapy works. But there’s no way we could get our own personal MRI machine. Plus, it would be incredibly expensive to run the thing. *shudders*

Yesterday, I went looking at it once again. This time, there was more information about the device and more contacts I could pose more questions to. I again sent a letter explaining my husband’s 15 year migraine history and asking about the device, how much it costs, and how we could get it.  This time, they responded quickly, but with rather disappointing words.

Dear Jamie –
Thank you for your inquiry regarding eNeura’s SpringTMS migraine treatment device. We are pleased to announce ours is the first clinically proven, non-invasive device cleared by the US Food and Drug Administration to relieve pain caused by migraine headaches that are preceded by an aura. The company has also received European CE mark for its SpringTMS device for the treatment of acute migraine and is currently marketing the device in the United Kingdom.
The initial U.S. availability of SpringTMS will be through a post market open-label study with leading headache specialists at a number of headache centers around the U.S. The headache centers participating in the post market open-label study are located in Arizona, California, New York, Ohio and Pennsylvania.
Please email Customer Care to request contact information for the site nearest you, or click on this link for a complete list of the sites currently recruiting for the study: https://clinicaltrials.gov/ct2/show/NCT02357381 . This link will also provide you with the list of inclusion and exclusion criteria for the study. If you husband does not meet the criteria, please still contact the study site nearest you. Some of the sites are also prescribing the device to private-pay patients who do not meet the study criteria but may benefit from sTMS (Cleveland Clinic, Mayo Clinic and Jefferson Headache Center).
The SpringTMS is rented for $750 for a three-month prescription, and we do not have a discount program in place at this time. If your husband is prescribed the device, the prescribing clinician will provide a treatment plan that is appropriate for him.
Best regards,
eNeura Inc.
Sr. Director of Customer Care

Seven hundred fifty dollars EVERY. THREE. MONTHS! Oh man oh man oh man. And this isn’t even something that insurance will probably pay for right away, I’m sure! Let alone the VA.

Speaking of the VA.

This got me thinking and doing a little more research. I found out that the VA has a research and development team within their organization. So I thought I’d contact them. With the eNeura device still in studies, I thought maybe the VA would consider this. I know there are more veterans out their who suffer migraines than just my husband. And I wonder how many of them are in the same situation where nothing has worked for them to relieve the pain and severity and the number of them. TheHubs has exhausted the VA Pain Center’s capability to help him. Last year was his last appointment with them and they pretty much told him that they can no longer help him.

I am hoping beyond hope they will consider getting into the study and offer it up to my husband. But this is the VA we are talking about. I don’t know what else to do, where else to go for help. Their “Contact Us” form is generic and done by a 3rd party (UGH) rather than contacting R&D directly. And now I wait.

Please pray.

LadyJai

Related Articles you may like:
VA Appeal Update #4
VA Appeal Update #3
Our Story