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Posts Tagged ‘pain meds’

Trigeminal Neuralgia Situation

Posted by Scott Holstad on March 12, 2016

Okay. Update. This post is largely in response to a request from a reader. As many of you might remember, I have Trigeminal Neuralgia. For those of you unfamiliar with it, it’s a neuropathic disease which affects the trigeminal nerve, the largest nerve in the brain, causing unbelievable head and facial pain. Most scientists, doctors, neurologists, health care professionals, and patients widely consider it to be the most painful disease known to mankind. I’m not kidding. Google it. It’s also widely known as “the suicide disease.” I’m not kidding. Google it. Look at the Wikipedia entry. The last time I looked at it, it was there.

Not many people have it. Somewhere between 35,000 and 40,000 Americans have TN. That’s all. That’s why there’s virtually no R&D done on it. There’s no money to be made in it. There are two major types of TN: Type 1 and Type 2, often also referred to as Atypical TN. I have Type 2. It’s extremely rare. Only about 5,000 Americans have it. I’m one of about 5,000 Americans who have this rare, unbelievably painful facial disease.

The pain is hard to describe accurately. I can only under-describe it. Type 1 pain feels like sharp, electric shocks coming in quick, hard jolts through your face in 15, 20, 30, 40 second episodes over and over again for 30, 40 minutes, one hour, three hours, five hours, then maybe a break for awhile, then perhaps days, etc. It’s unrelenting. The electric shocks are supposed to be ungodly. I don’t experience these with Type 2. The pain usually centers in eye sockets, temples, cheeks, and jaws, although sometimes teeth and gums, as well as foreheads are also impacted. Sometimes even the back of the head. There are triggers. Eating, dental work, brushing your hair, wind, rain touching your skin, foul weather, anything brushing your skin, occasionally stress, it can be just about anything. Sometimes there’s no trigger.

Type 2 is different and a lot harder to diagnose. Instead of a series of short, sharp, insanely painful attacks, Type 2 people experience nonstop, usually all day, unrelenting dull, aching, yet also sharp (if that even makes sense), intense, otherworldly pain centering in similar locations. Allegedly, the pain is slightly less severe, but because it lasts virtually all day, every day, often for days, and in my case, weeks and months and even years, every day, I would assert that in some cases, such as mine, it’s much, much worse. You get no break. It’s horrible. It’s incapacitating. The first year I had it, beginning in the summer of 2010, through the summer of 2011, I spent most of my afternoons and evenings in bed, unable to function, able only to do things in the mornings when my pain was less intense, and even though I’ve not always been bedfast this whole time, I still schedule all of my appointments for early in the mornings and run all of my errands early in the mornings when I am able to, because by my early lunch, I’m usually in a great deal of pain and by after lunch and for the rest of the day, am unable to function as well as I would like, sometimes not at all.

There are treatments, medications, and some temporary surgeries, but only one possible cure, through a risky brain surgery. There aren’t any medications specifically for TN. There’s no money to be made in developing a medication for something that so few people have, so none of the companies have done so. Thus, neurologists and pain management specialists give out other types of medications for pain. The most commonly prescribed medication is Tegrotol, which I’m allergic to. The second one is Neurontin, which did nothing for me. Most TN patients are on incredibly high doses, usually well past the daily maximum recommended doses. Often they don’t get pain relief. Lyrica is another popular medication. There are many others. Sometimes people take Klonpin. I’ve taken that for years, but it does nothing for my pain. Two I take that have helped are Keppra and Topamax. After I started taking them together, I didn’t get a TN attack for some months and that was nice. Of course, there are often side effects and with those two, I had severe drowsiness for two months and fell asleep in my chair every morning and every night at 7:30 pm. It was annoying. Of course, most people with TN have extremely severe pain and these types of anti-seizure and anti-depressant medications only do so much. Sometimes people with 10 out of 10 on a 1-10 pain scale need something stronger. Unfortunately, as I’ve learned with some research, people with Type 1 are not helped with narcotics. People with Type 2 are. I have been taking narcotics since 2010. They used to help quite a bit. However, my pain levels increased threefold over a year and a half ago, and they ceased working like they used to and I had to start taking more and more for less than half the aid they once provided. This was annoying, in part because I didn’t even like taking them in the first place. Indeed, the first thing I normally do is take over the counter medications. I don’t even know why. They’re useless. I just don’t like to jump straight to the heavy stuff. I start with Advil, Tylenol, etc. Then move on to Excedrin Tension and Advil Migraine. Then I go to the prescription non-narcotics, such as Treximet, which used to help, and Sumatriptan and Naproxen, which has torn my stomach to shreds. Then it’s on to the heavy stuff. However, a couple of months ago, I had to bite the bullet and after five and a half years, admit with the help of four doctors and two pharmacists that I had reached my tolerance level and it was time to move up to something more powerful. When my pain management specialist gave me my prescription, I was horrified, because it was for a medication I’ve always heard about and had always heard negative things about and I’ve always heard it’s risky as hell to take this and indeed, when I did research, there were all sorts of warnings everywhere about it. I talked to another doctor and to two of my pharmacists and they assured me they thought it would be safe and good for me and would help me, so I got it filled and pondered things and several days later, started taking it, wondering what the hell would happen. Well, I’m still here. And it has helped. Some. I was hoping it would eliminate my pain, but it has not. I did further research and talked to my doctor and found out, it will not. My doctor told me their goal was to minimize my pain and restore my quality of life. Well, it’s definitely cut my pain, some of the time, perhaps even a lot of the time, certainly in the mornings, so that’s good. I’m also taking a second narcotic for “breakthrough pain” when needed, which is more often than I would prefer, but I’m still getting significant pain episodes, so it’s necessary. But less often than before.

So, what kind of procedures have I had and what are available? Well, I started out having Gasserian Ganglion Blocks. You have to be put out for those. They involve putting a needle through your cheek up through your mouth to your middle cranial cavity housing your V2 trigeminal nerve “tendril” (that’s what I call them) — there are three on each side, giving you sensations in three quadrants of your face on each side —  and anesthetizing the end of the nerve. They have to put you out because if you felt the needle connecting with that nerve end, the screaming would unnerve the entire hospital. Allegedly. I’ve had quite a few over the past five years now. Many don’t work at all. Not even for a day. Total waste of time and money. A couple have worked for several months. One worked for a year, so that was a good investment.

I’ve also had Botox injections, which haven’t helped me much. The longest any have helped my pain levels have been two weeks, reducing my pain about 50%. They’re supposed to help for 2-4 months, reducing your pain 100%. There are also steroid injections. Lately, I’ve been having Trigeminal Nerve Blocks, which I don’t think I’m reacting well to. With the last one I had, last week, I had significantly bad pain afterwards for three days. In fact, the third day afterwards was one of the most painful days of my life. It was absolute hell. If it were possible to rate pain over 10 out of a 1-10 scale, this would have been perhaps a 17. I couldn’t move, think, function, could barely talk, couldn’t read, nothing. None of my pain medications helped. I wanted to die. I actually thought about killing myself. Twice. That’s the first time in a very long time I’ve thought about that. It was horrific.

There are more major surgeries. There are four long term temporary surgeries, including Gamma Knife and Radiofrequency Ablation. I’m thinking of having a Balloon Compression surgery, which is long overdue. I finally made an appointment this week with a strongly recommended Nashville neurologist for next month to discuss this and other surgical options. Why Nashville? There’s only one group of neurosurgeons in Chattanooga and they’re idiots. I met with one last year for this same purpose. I told him my situation and he had never heard of TN Type 2. I was stunned. He didn’t know what it was. I explained it to him. He didn’t believe me. I had to provide documented proof. It’s his fucking field! I know it’s rare and only 5,000 people in the country have it, but if specialists in this field don’t even know of it, you’re pretty screwed. Indeed, I’ve been trying to find help elsewhere for sometime now. Last November, I went to Vanderbilt’s Neurology Headache Clinic. It was a waste of time. They didn’t do anything that my current, local neurologist wasn’t doing. I was turned down by the Mayo Clinic last month. I have no idea why. I’ve decided not to apply to Johns Hopkins. I don’t like their program. The Cleveland Clinic doesn’t even treat TN! Shit. What do you have to do? The one major, biggie surgery is called an MVD. It’s a brain surgery that involves cutting open the back of your skull, going in and rearranging the arteries around the trigeminal nerve and anything else that might be touching it and aggravating it, and if necessary, simply cutting it in half, which is a bit extreme. It used to take a long time to recover from, although that process and time length has really improved. It’s a risky surgery though. It used to be slightly lethal and some neurosurgeons were reluctant to do it. It still can be lethal. A little fewer than 0.05% of people (I think — could be a little wrong with that figure…) undergoing it die on the table. But most people consider it a worthwhile risk. Apparently, the more experienced the neurosurgeon, the better your chances of survival, so it’s in your best interest to find someone good. People travel all over the country to find someone good.

And why has my pain increased threefold? Well, over a year ago, I started getting extreme back pain out of nowhere. Since then I’ve been to my orthopedist and rheumatologist umpteen times, as well as physical therapy for six months, which did nothing at all. After getting all sorts of x-rays and other images and tests and whatnot, I found that I have severe curviture of the spine, spinal stenosis, massive amounts of osteo-arthitis throughout my entire body, worst of all in my hands and lower back, severe disc degeneration in my lower back, so much so that it’s bone on bone in the bottom of my spine and discs above that aren’t much better. I also have severe nerve damage in my lower back and a broken tailbone, as well as pain in my hips and legs stemming from my spinal and disc problems. I wrote a blog post about some of this not too long ago: CT Myleogram and Emergency Procedure. Additionally, about a year and a half ago, I started getting a new and different type of head pain. It was bilateral — TN is almost always unilateral — and felt different. It also wasn’t responsive to any of my procedures and not really to any of my medications, except occasionally to my narcotics. My then-new neurologist diagnosed me with three new head pain disorders: tension headaches, severe migraines, and cluster headaches. For those of you who don’t know what cluster headaches are, many scientists and doctors also feel that cluster headaches, like Trigeminal Neuralgia, are the most painful disorder known to mankind and they are also called “the suicide disease” by some. I don’t know how you reconcile the two, but in any case, I allegedly have both, so I’m totally screwed. However, my wife and I feel there’s a FIFTH undiagnosed, untreated head pain disorder that remains undiscovered that we’re really frustrated about that we feel my doctors aren’t really trying to find. Thus the desire to go out of town. The reason is, I’ve been given a ton of old and new, even experimental, migraine and headache medications and these headaches respond to absolutely none. Not one. They’re responded to no procedure. They’ve responded to nothing. At least the clusters often respond to TN treatments. So in our opinions, this can’t be a migraine. So what is it? So, Mom keeps asking when I’m going to have brain surgery. Like it’s nothing. Well, there are two reasons. First, Type 2s don’t respond nearly as well to any surgery, especially MVD. They just don’t and no one knows why. Second, even if I did respond well to an incredibly expensive, risky surgery and it eliminated my TN pain, I would still have my daily 10 level severe head pain and have to take my same pain medications and it would be pointless. Until this other head pain is diagnosed properly and treated, I see no point.

Surgeries. My back doctors are recommending back surgery to repair my nerve damage, a possible spinal fusion, surgery to remove my tailbone (which I refuse to have), and down the road, two probable hip replacement surgeries. Great. I already mentioned the balloon compression surgery for my head.

Get this. In the past three months, I’ve already had SEVEN minor surgical procedures! Seven. I’ve had four in the past three weeks alone. One was an emergency procedure for a procedure that went bad. I’ve had four procedures that have gone into my spine in the past two months. I can’t tell you how exhausted I am. I’m so tired out by all of these procedures, I don’t want to have another in a long damn time. But I probably will. That’s just how things work out.

I have Trigeminal Neuralgia Type 2. I have a shitload of other problems to contend with right now too. All seem and probably are serious. All are relatively debilitating in one form or another. I haven’t been able to work in over five years. I miss working in an office, doing something productive, interacting with co-workers. I miss having a social life. I feel badly that I can’t take Gretchen out on the town like I’d like to. I feel like I’m screwing her over badly. But she’s got a really good attitude and she’s incredibly supportive and I really couldn’t make it without her. She lets me talk and she listens. She offers input when I ask for it. She takes care of me. It’s damned nice of her. That’s true love. I’m very lucky to have her.

If you ever meet anyone with TN, I hope that this blog post will have helped you to understand their situation to a certain degree. I hope you will understand their feelings of helplessness and hopelessness. I hope you will be supportive. I hope you will say a kind word to them. Meanwhile, thanks for reading this, if you did. And have a good weekend.

 

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CT Myleogram and Emergency Procedure

Posted by Scott Holstad on February 13, 2016

I’ve had a rough time of it lately, especially the past few days. A couple of weeks ago, I somehow injured my back. It locked up and I had incredible back pain to go along with my very severe head pain. I went to my orthopedist, had a lot of x-rays taken, was told I hadn’t fractured my back (good), but that my degenerative disk disease had gotten a lot worse. That my bottom disk had effectively disintegrated and it was largely just bone on bone now and that was why I was hearing all of the clicking and grating sounds when I moved, and why I felt my spine shifting when I moved. The disk above it wasn’t much better and together, they couldn’t have been “much worse.” My doctor decided to send me to have a procedure at a surgery center called a “CT Myleogram,” which I had never heard of before and which didn’t sound like a big deal. After all, I had had a number of CT scans, so no biggie, right?

Well, when I got home and did some research, I found out what these procedures were, to a certain degree, and they were a little more involved than that. They were basically like reverse spinal taps, where instead of inserting a needle into your spine and removing spinal fluid, they’re inserting a needle into your spine and injecting contrasting fluid into it so that they can take moving x-rays and CT scans so they can detect nerve damage and other types of damage regular x-rays can’t see. No anesthesia, of course. And I had just had a spinal tap last month. So, yay. This was last Monday. They called me Tuesday and scheduled me for Wednesday, a few days ago.

My wife took me in and dropped me off. She’s had to take me to so many procedures lately and has had to wait that it’s just gotten old and she’s worried about losing her job, so she just wants to drop me off and pick me up when she’s allowed and I was supposed to wait in Recovery for 2-4 hours after the procedure before she could pick me up. I had the procedure and it wasn’t that bad. It didn’t last as long as a normal spinal tap, although with the x-rays and CT scan, the entire process made it last much longer, of course. And I only had to wait after for a couple of hours or so. They warned me several times about something called a “spinal headache” and said it could be very severe. I basically laughed it off because with my Trigeminal Neuralgia, tension headaches, severe migraines, and cluster headaches, how could it possibly be that severe? Even if I got it, which I didn’t think I would. Because you basically got it from leaking spinal fluid from a puncture that wasn’t healing and it wouldn’t be healing because you stood too much and didn’t lie down enough and I planned to lie down. But I didn’t. I thought I did, but I didn’t. I sat at the dining room table to eat a late lunch when I got home. I sat at my computer to check email, etc, after that. I laid down for a bit, but then I stood for awhile to do dishes. I laid down some more. Oh, I felt pretty good, by the way. I felt fine. I sat again to have dinner. But by then, I was starting to get, yes, a headache. I assumed, however, it was my usual TN acting up and didn’t really think anything of it. I took my usual medications, but by late afternoon, I had an increasingly severe headache that was starting to get very, very bad. I went to bed with a bad headache and got virtually no sleep. By Thursday morning, it was brutal. I got no sleep, like I said. My right eye socket felt dead. The right side of my head was on fire. The back of my head felt like it had been hit by a machine gun. My forehead hurt, so did my cheek and jaw. My ear lobe felt numb, so did my teeth and tongue. My temple was killing me! I wanted to die. And my back was hurting from my procedure. This was probably the worst pain of my life. On a 1-10 scale, this was easily a 15. Throughout the day, I took 6 Tx, 8 Ex, 2 Nx, 14 Ax, a Px, and 2 Mx. I started feeling better during mid-afternoon but started getting worse again before dinner. My pain level got down to maybe a 10/10, but that didn’t last long. And this got worse! I didn’t know what to do! My pain level reached a 17 out 10, if that’s even possible! Ungodly! Worst ever. Finally around 9 pm Thursday, I called the surgery center and got patched through to a live doctor. She said I had two options. One, I could go to the ER, but Gretchen had taken a sleeping pill and was going to bed and I couldn’t drive. Two, I could stay up and take lots of anti-inflammatories and drink lots of caffeine and go back to the surgery center in the morning to get an emergency “blood patch” procedure, where they drain a lot of blood from your arm and then inject it through one of two needles inserted into your spine, like a reverse spinal tap, similar to what I had two days previously. That’s two reverse spinal taps in three days. That’s harsh. And that’s what I did. I stayed up all night drinking coffee and Coke Zero and taking what pain pills I could and when Gretchen got up, this doctor called me and told me they were expecting me at the surgery center, so Gretchen took me there. When I went into the operating room, they had five people in there: the doctor to handle the two needles, the technician to operate the x-ray machine, which I got to watch live, the person to handle my blood and its needle/IV, and two people to massage me, one my arms above my head, one my legs, I guess in an effort to comfort me because of my pain and discomfort level. It was almost funny, as I’ve never had that happen to me before, but it was oddly comforting. This procedure lasted about an hour and hurt like a fucking bitch! Holy shit, it hurt! The doctor dug those needles into my spine hard over and over again repeatedly, gouging the shit out of my spine. Finally it was over. I was proud of the fact that I didn’t even wince once. They asked me how I felt immediately after but I didn’t know. I said I needed some time to evaluate. After awhile I realized my head pain had largely disappeared, including my eye socket pain, and I told them that and they were pleased. I was a little shocked. I guess I did have a spinal headache but I never knew they could be so damn bad. It was just about the worst head pain I’ve ever felt. Now I’ve got a 0 out of 10 head pain since 11:30 am yesterday and that’s awesome. I wonder how long this will last? Unfortunately my back hurts pretty badly from all the trauma it’s had to endure over the past few days. Hurts a lot. Hopefully that will improve fairly quickly. I’m glad they insisted I come in Friday morning rather than going through the weekend. That would have been a disaster. Getting the disgusting, painful blood patch was one of the best things I ever did.

So, that’s where I’ve been the past few days. Sorry I’ve been out of touch. I’ve truly not been feeling well. I have four books stacked up to write reviews for, but I really haven’t felt like it. I don’t know when I’ll get to those. I hope everyone has a nice Valentine’s Day. Ours will be low key, unfortunately. Frankly, I’m just glad to be okay.

 

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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.

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