hankrules2011

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Vanderbilt Neurology Headache Clinic Visit Outcome

Posted by Scott Holstad on November 14, 2015

As I may have mentioned, I have spent several months trying to get into Vandy’s Headache Clinic before finally finding out I was accepted and getting an appointment. It was for this past Thursday. I was both excited and nervous.

Some background. In September 2010, I started getting horrific headaches that I thought were severe migraines, but they didn’t go away and only got worse. My quality of life lessened and they became incapacitating. Eventually, I had massively severe head and facial pain, largely unilateral, which worsened as the day progressed, each day, and I was only functional in the mornings, having to spend the rest of the day in bed. I tried all sorts of pain medications, mostly over the counter and prescription migraine, but the only one that ever helped at all was Percocet. In February 2011, I quit my job. I could no longer function. By that point, I was busy going to all sorts of doctors, dentists, chiropractors, etc., et al, in morning appointments, all over town, trying to find a diagnosis and cure for my condition. The pain was ungodly. Virtually everyone I went to threw their hands up into the air and said they didn’t know, they couldn’t help me. One neurologist I went to had me undergo a lumbar puncture to test me for pseudotumor cerebri. I needed a “score” (spinal fluid pressure) of 20 to have it and I got a 19, right on the cusp, so he concluded I did not and then said he couldn’t help me. So I went to yet another neurologist. He tried a few things and nothing worked, so he sent me to a pain management specialist. In the meantime, my psychiatrist asked if anyone had suggested trigeminal neuralgia. I said no. He said I should look into it. As soon as I left his office, I looked it up and I’ll be damned if it didn’t look exactly like what I had. There are two types and it seemed to me I had the harder one to diagnose, Type 2. When I went to the pain management specialist, he spent an hour and a half with me and listened to me and went over many things with me and then agreed with my assessment and gave me a preliminary diagnosis of TN Type 2 and scheduled me for a diagnostic procedure called a gasserian ganglion block. If I responded to it, I had it. I underwent the procedure, the pain immediately disappeared for the first time in 10 months and it stayed away for 18 days. I had it. I was elated! There was finally a name associated with my problem and that meant there were actual ways to treat it. Nothing great, unfortunately, but ways. Ironically, there’s one medication that is supposed to work really well for people, but I’m allergic to it, so that leaves nerve blocks and five different surgeries, all but one of which are temporary fixes. The other one is a permanent “cure,” but it’s dangerous, sometimes fatal, and some neurosurgeons are reluctant to go that route. And it can kill the nerves in your face and take a year to recover from. So it’s the last resort. So I’ve had a series of nerve blocks over the past few years, some effective, the last three, last year, totally ineffective.

Fast forward to Spring 2014. My TN had been somewhat under control for awhile and I was glad. Then I started getting a new type of head pain, a “standard” type of bilateral headache that was incredibly severe. It’s gotten worse over the past year and a half and this year, it’s been brutal. It’s gotten so bad that I now have a 9 or 10 out of 10 headache pain 24 hours a day, 7 days a week, every month, all year. I don’t get any breaks. Pain medications do little. Combine that with the severe back pain I’m in, which is also a 9 and 10 out of 10, and I’m in constant agony. I’m looking at several possible surgeries there. In the meantime, I’ve been to my primary care physician, my pain management specialist, a new neurosurgeon, and now a new neurologist trying to find the source of this new damn head pain and a way to stop it. That’s what the three gasserian ganglion blocks were for last fall, but I knew they wouldn’t work because I knew it wasn’t TN pain and I couldn’t get my damn doctor to understand that. My doctors don’t believe me when I tell them my pain is bilateral. In fact, my neurologist told me last time I was there that in all the years he’s been practicing, and he’s a headache specialist, I’m the FIRST person who’s ever told him he has a bilateral headache! I find that virtually impossible to believe. Impossible. By the way, he has diagnosed me with a cluster headache, which is supposed to be the most severely painful condition known to mankind, just as trigeminal neuralgia is too, depending on which research you read and believe. Either way I’m screwed. And this neurologist, to his credit, seemed to be trying some things to help me, but not very well. His meds he gave me did nothing. He gave me Botox injections, but they helped some for a couple of weeks and that’s it. And I don’t like him. He’s the most ego maniacal, narcissistic, controlling doctor I’ve ever met and all of my other doctors I’ve ever had have been wrong, wrong, wrong because only HE knows what’s right. Asshole. So I’m going to stop going to him. That’s when I decided to look to for a better facility out of town for help, cause Chattanooga doctors are worthless.

Enter Vandy. Allegedly a good neurology department with a headache clinic and 80 neurologists on staff. I had some preliminary medical records sent to them with a referral and I was eventually accepted, as I said. I was sent a letter instructing me to bring all of my medical records with me, so I spent two weeks and $120 getting them from four doctors. Getting them from my neurologist was pure hell. He didn’t want to give them to me. Kept making excuses. Had to “approve” my request. Had my personal file in his office which his staff didn’t have access to. Demanded to know why I wanted them. I refused to tell him. If I told him I wanted to take them to another neurologist, he would have gone apeshit insane! I don’t think he would have given them to me. Gretchen decided to go with me for two reasons. One is, it’s a six hour drive both ways and because of my pain, I probably wouldn’t be able to drive back on my own. So that was nice of her. Also she wanted to be supportive and supply supplementary information to the doctor in the consultation and learn things in general. So I got a list of all 22 of my prescriptions and got all of my paperwork together and we hit the road at 7 AM Thursday.

We finally got to Nashville and got there early enough to have a cup of coffee. I then checked in. I was registered and a nurse took my vitals and recorded all of my medications and asked some various questions and then we had to go wait out in the hallway lobby, where there were virtually no seats anywhere. Now understand, we had high expectations. I viewed this as my last resort. My last hope. We expected to spend serious time here. We expected to meet a doctor, spend a great deal of time going over my head pain history, maybe pointing out some things in my various medical records, being given a thorough exam, asked a ton of questions, being given a preliminary diagnosis, and hopefully a new “miracle” prescription that no one in Chattanooga was smart enough to think of. We thought we’d spend some two or more hours there easily. When I went to my consultation and diagnosis at my pain management specialist, he spent over an hour and a half with me.

So, we were taken back to a room and eventually, a very young, very tiny black woman came in and introduced herself as Dr. Williams. She was energetic and extremely assertive. She hadn’t read any of the massive amounts of paperwork I had filled out at home and brought with me or filled out while I was there waiting. I showed her my huge pile of medical records their letter instructed me to bring and was going to hand it over when she surprised us be telling us she didn’t want it. It wasn’t relevant. It didn’t matter. She didn’t care about it. That seriously pissed me off because I spent money and a lot of time and effort getting those records and she blew that off in 30 seconds. In terms of discussing my head pain background, she spent less than five minutes, if that. If that. She seemed more interested in my ADHD and my Adderall. She wanted to know if I’d ever had Botox treatments. That was a question I had just answered on the paperwork I had filled out in the lobby. If she had looked at my paperwork she would have known the answer to that. I told her once. She told me it takes three full treatments of 31 facial injections each before they work. So, she decided to prescribe two migraine medications that I don’t need and won’t work, one of which my rheumatologist has forbidden me from taking, and to double my dose of Topamax, even though I’ve been on the higher dose and found the side effects so horrible, I begged to be taken off it. I was also stunned she would do that without even consulting my doctor who prescribes my Topamax for me now to see if he was okay with that. That’s not professional. She then said I needed Botox treatment “right away.” I thought that would mean next week. Gretchen asked if I needed to drive all the way back up here for that, if someone in Chattanooga could do it. She didn’t seem very thrilled with that, so I volunteered to drive back up to Nashville, which seemed to mollify her. She said the scheduler would set up the Botox treatment. For right away. And she gave me their first available appointment. For mid-February. Mid-fucking-February. Assholes. And this Dr. Williams spent a grand total of perhaps, at the most, 20 minutes with us. We drove six hours for that. Six fucking hours. As Gretchen pointed out to me on the drive home, she didn’t do ANYTHING that any doctor in Chattanooga couldn’t do himself. Nothing. Where was the Vandy magic? Where was the Vandy reputation? And this woman was so sure of herself, so cocky. She KNEW she would cure my pain immediately. And I’m totally unconvinced. Everyone else has tried and failed, why would she succeed? So I gave the visit a generous C-. Gretchen gave it an F. Gretchen was lived. She thought the doctor had an attitude and a serious chip on her shoulder for some reason. She thought she didn’t like Gretchen questioning her. Maybe she’s right, I don’t know.

I had an appointment with my primary care physician here in town yesterday. I told he and his nurse about my experience. They were horrified. They’re going to refer me to yet another local neurologist in the hope that I can find one decent enough to think — apparently they all suck in this town; it’s well known — and maybe, if he agrees with the Botox assessment, he can do it on his own well before I would have to go back up to Nashville again. And then I could just dump Vandy and strike it up as a stupid effort on my part. And there’s always Emory in Atlanta. They’re supposed to have a good pain clinic. Although I’m somewhat leery now. Some of my friends are suggesting the Cleveland Clinic or Mayo, but I’m not made of money. I can’t afford to do that. Geez! It’s got to be within driving distance. That limits my options tremendously. All I can say is Gretchen and I feel really disillusioned with our experience with Vandy and don’t think they really know what they’re doing, no matter how good their reputation. Maybe all Tennessee neurologists are inept? It’s possible. I expected a minimum of two hours and a thorough consultation. I got 20 minutes and a treatment plan I’m not convinced will work and which any doctor in Chattanooga could do next week, not three months from now. I can’t believe I waited for this, hoped for this, put all of this time, money, and effort into this. What a bust.

4 Responses to “Vanderbilt Neurology Headache Clinic Visit Outcome”

  1. punkysleek said

    I am so disappointed for you. What happened to doctors that really care? Who are really curious? I would have been all over your records and creating a flow chart before even seeing you, so I would have some idea of where to go before talking to you. The doctor is not the one experiencing what you are experiencing! I know a lot of the the times they have to weed out the hypochondriacs and drug addicts, but when someone comes in with a library building full of records, it’s time to stop and seriously study this! I hope you and Gretchen can find some peace (meaning solution) to all of this soon. I like the Mayo idea but I truly understand about being able to afford it. I will pray the money for this happens soon for you.

    Like

  2. OH no! 😦 I am so disappointed and sad with you/for you. 😦 This is so discouraging! I can’t even imagine how you feel emotionally today, Scott. 😦 Please know you have my thoughts, best wishes for help, and prayers.
    I was hoping and praying you could get some answers and decent help at that appointment. 😦
    I’m so sorry your had such a bad experience and ended up with no help. That is appalling! 😦
    I will keep praying and hoping that you find the help you need soon. I will pray for SweetG, too, as she supports you in all of this.
    In my cancer journey I have encountered one doc that I don’t really like…but he does do his job well as far as I know. So. Anyways.
    (((HUGS)))

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  3. punkysleek said

    This really stinks. Please don’t give up. I just had a visit with my new Dr.’s place. There’s a lot to say, mainly that the doctor seems to go by a generic check list, but the high end nurse (not so much the nurse’s assistant) was awesome. May you find someone in the field who has some insight, compassion, and who thinks outside the box. Be well!

    Like

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