hankrules2011

Book reviews, health, hockey, publishing, music

Posts Tagged ‘health’

Still Alive

Posted by Scott Holstad on September 11, 2017

Hi! I’m truly sorry I haven’t updated since 12/16. The past year and a half, actually the past three years, have been horrible for me, and 2016 was the worst year of my life and 2017 has been challenging as well. I just haven’t had the time, energy, stamina, strength, or even interest in book reviewing or blogging like I did for so many years. In fact, this is just a short post to let you know I haven’t died yet, although there have been some scares, and I’ll write a more comprehensive post hopefully sometime in the near future. Speaking of book reviews, Goodreads thinks I’m in the middle of 177 books right now, which is funny, because I don’t think I’ve written any reviews since 11/16. I haven’t had the energy or even interest, which is a first. I’ve been too concerned with staying alive. So, I’m only in the middle of about 20 books or so. And yes, my health has been that bad. So, I have four+ stacks of finished books sitting here in my office, some finished 10 months ago, and I’ve forgotten their plots even, waiting for me to write reviews I probably never will. Moreover, I buy Kindle books — a lot — and I’ve finished quite a few of those and many of them are awaiting reviews too, because I don’t close a book out and “finish” it until I’ve rated it and written some type of review, no matter how small. Thus, the backlog. So I’m sorry because I know from previous follower polls the vast majority of you have followed me for my book reviews, so I’m sure I’ve lost a ton of followers this year and I know I’ve let you down, but I’ve had to concentrate on me. You’ll understand more when I write a more detailed post sometime, assuming I get the time, energy, and strength. I may have to split it up. So, thanks to those of you who have stuck around. I’m sorry I haven’t been blogging or to any blog sites in months. It’s nothing personal. Just life. I hope everyone has been doing well. More later. Cheers!

 

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Strokes

Posted by Scott Holstad on October 21, 2016

Some people have been asking about me lately, so I thought I would write a brief post letting you know a couple things that have been going on with me. Thanks for asking.

Over the past two months, I have had two minor strokes. The first one wasn’t that bad. Eight doctors confirmed it was a stroke. I had numerous tests. I was told once you have one of these, you’ll have more and more frequently, and they’ll get worse until you have a major one. I was also told they cause brain damage and that this one had caused brain damage. Two neurologists and three other doctors also showed me and convinced me that my right side had lost considerable strength, as well as speed and reaction times.

Last month I had another and it was worse. I wrote a diary entry about it because I had a bad feeling about it, and indeed, when I saw my neurologist that afternoon and he asked me about it, I couldn’t remember any details and simply asked him to read my diary. In fact, it took me days to recover and I couldn’t remember about four days during that week. I think I suffered real memory loss and I’m willing to believe some actual brain damage.

So, now I’m on medication and wondering when the next one’s going to hit. And how much worse it will be. I’ve redone my will and my living will. And I’m still having other major health problems. Right now, my ongoing head and back pain problems are taking a back seat to my 18 month old severe stomach problems. I’ve been to many doctors and have had many tests, but no one can help me. In fact, two weeks ago, I was sent to a major hospital out of state for consultation, medication, and tests, because no one here can help me.

I’m still reading a lot, but I’m obviously not writing book reviews. I don’t have the energy or stamina to do so. I have 71 books sitting here to review and I just can’t bring myself to do it. 71. I spend every afternoon and evening exhausted and fatigued to the point of falling asleep at all hours, no matter what I’m doing, whether it’s lying down, sitting in a chair, sitting at the dining room table, even standing up. We think I may have narcolepsy. I average between two and four doctor’s appointments a week, all in the mornings, and spend the rest of the day exhausted and usually in pain. Also, I can no longer drive. I’ve been banned for several reasons, one of which is I pose a danger to myself and others. I now ride the local bus company’s vans for the disabled and take Uber. I also have to use a cane when I walk. My life has changed a lot just in the last year.

I guess that’s it. I could write a lot more, but I’m already tired out and have to stop. I hope any of you reading this are doing well. Sorry about the reviews. I’d like to resume doing them. I’ll do them when I can. Cheers!

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A Shocking Discovery

Posted by Scott Holstad on August 16, 2016

I had an appointment with my neurologist yesterday and in discussing some problems I had last Thursday, among several topics, I was shocked by what he told me. He said that I had had a minor stroke! I was stunned. I didn’t believe him. He said he was 100% certain I had had a stroke. I won’t bore you with what symptoms I had exhibited that led him to believe that, but as I wouldn’t believe him at all, he then conducted a battery of neurological tests on me, right side versus left side. This had impacted my right side. To my complete shock, the entire right side of my body is noticeably weaker, slower, less responsive, etc., than my left side. That was pretty convincing. I had had no idea before then. He told me I’m the ideal candidate due to my age, gender, and the fact that I’ve been experiencing some things that my doctor asserts would be typical of one experiencing that kind of trauma in that region, including years of severe pain in my eye sockets for numerous hours per day, every day. He sent me for an immediate MRI to make sure it’s not worse than what he thinks it is and he sent a request to my cardiologist for her to run some tests too. I called Gretchen in the taxi ride home and told her and she was shocked. I think she was a little distressed as well. She needed some time to process and I had to get to the imaging center, so we said goodbye and I spent my afternoon getting blasted in a loud machine. My third MRI of the year. So, after reading about this, I’ve discovered that 1 out of 20 people who have one of these have a major stroke within a few days and that 1 in 10 within three months. I kind of feel like I’m living on borrowed time. This is a bit of a shock. Gretchen seemed really surprised by my revelations about my weaker right side, so she asked me to do the basic first test of using both hands to shake her hand, something I did with my doctor. It appeared that my left hand’s grip nearly broke her hand. She winced and asked me to let go quickly. It was a tight grip, as my grips always have been. Then, I used my right hand. She was shocked! She asked me to squeeze harder and I told her this was the best I could do. I was basically making contact, I think, and I don’t think I was able to apply much pressure. It was embarrassing to me, but I think it showed her how weak my right side is. She didn’t conduct anymore physical tests. She was either convinced or too depressed to do so.  Anyway, I also had a tempestuous phone conversation with my mother last night, which make my day even better. All I can say is thank God for Gretchen, who while upset, is still a kind, loving, supportive person, there for me, and we can both lean on each other. Thanks for letting me share this, friends.

 

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3 Things YOU Need To Know About Trigeminal Neuralgia – Daily Records

Posted by Scott Holstad on August 11, 2016

A while back, whilst working in Oregon, my husband, in agonizing pain, took himself to the emergency room at the local hospital. He had just suffered a severe burn, about 5 x3 inches, on his stomac…

Source: 3 Things YOU Need To Know About Trigeminal Neuralgia – Daily Records

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Letter to People Who Think Chronic Pain Isn’t That Bad | The Mighty

Posted by Scott Holstad on April 20, 2016

A letter to people who don’t understand chronic pain and think it’s “not that bad.”

Source: Letter to People Who Think Chronic Pain Isn’t That Bad | The Mighty

 

This is a really good article. Not the best I’ve ever read, but really good. It does a good job at trying to explain the problem people with severe chronic pain have in trying to live with. My wife found it and shared it with me and I then shared it with a number of Trigeminal Neuralgia support boards I’m a member of online and the response was overwhelming. Many dozens of people “liked” this article, many dozens of people shared this article, and there were a number of comments too. Some of those commenting said they thought this article might help their friends or family understand where they were coming from. Maybe. Maybe not. Still, if you read this and understand anything from it, take anything away at all, it will be much appreciated. I have several major chronic pain-producing illnesses, disorders, and problems in general, surrounding my face, head, and back. The worst is Trigeminal Neuralgia. I have TN Type 2. Only about 5,000 people in America have it, so it’s very rare and as a result, is not well understood or easily treatable. That makes it difficult for me to adequately describe my situation to anyone, let alone my doctors. Sometimes the doctors I meet have never even heard of TN Type 2. That’s when it becomes discouraging. But whatever the case, I thought this article was at least a 7-8 out of 10 and worthy of sharing and posting myself. I hope you’ll read it and if so, I hope you’ll get something out of it. Cheers!

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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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Lumbar Puncture

Posted by Scott Holstad on January 15, 2016

Hi! I had my lumbar puncture/spinal tap yesterday. Sorry I didn’t post, but I was bedfast for the entire day, per the hospital’s instructions. It went ok, actually much better than the one I had done in 2011. They’ve improved the procedure, made it much faster, less painful. In fact, even though two surgery nurses had told me the day before that I’d be having anesthesia, to my shock, I received none and no pain medications either! I thought, what the hell? It’s a damn spinal tap!!! However, once they went in, after the initial needle went into my spine, which did hurt quite a bit, things settled down and I could hardly tell anything was happening, which was quite different from last time, so I guess I didn’t need it. It took about a third of the time as the previous one, which was great. After it was done, I was supposed to lie flat in bed at the hospital for 2-4 hours, but they let me go before 2 hours had gone by. But I had to go straight home and lie down flat on my back all day and night, except for bathroom and eating breaks. Since I didn’t get to eat much for such a long period (I had had to fast from midnight and my procedure wasn’t until 10, even though I had to be there at 7:30 AM), I just weighed myself and found I lost three more pounds and I’m at my lightest weight since my major surgery weight of December 2011 and just 23 pounds from my ultimate goal. That’s cool. (That’s now a little over 80 pounds lost overall!) However, when it’s all said and done, it was a disappointment, because we did not get the result we were hoping for. We were looking for a specific spinal fluid pressure and this time it was even lower than last time and we were sure it would be higher — and it would have had to be higher to be what we expected it to be to explain all this damn pain. So we may be back at square one. Except … there’s one last hope. If you have this disorder, the spinal tap is supposed to relieve your pain. If you have no head pain for awhile, that’s a good sign. So, my head pain basically disappeared yesterday and so far this morning, although it’s only 3:00 AM and a lot can change, no headache. So, I’m holding out hope that even though the spinal fluid pressure didn’t indicate it, it still exists and the pain will have dissipated and that will explain everything. Oh God, please…. I meet with my neurologist on Wednesday, the day after I meet with my orthopedist and my pain management specialist, all of whom will be interested in the results. Here’s hoping. Thanks for thinking of me, those of you who did. Cheers!

Posted in Health | Tagged: , , , , , , | 3 Comments »

Minor Surgery on Monday

Posted by Scott Holstad on December 18, 2015

I’m having a minor neurological surgical procedure Monday morning to hopefully relieve some Trigeminal Neuralgia-related head and facial pain I’ve been having. This will be at least my eighth such procedure since summer 2011. Some have worked and some haven’t. I had three last year and none of them worked at all, but one I had in 2012 worked for nearly a year. However, no matter how successful this is, I don’t think it will help my overall pain level that much and that is frustrating. Let me explain.

For the past year, I have been in a great deal of pain. I have had Trigeminal Neuralgia Type 2 since September 2010, but it had improved with surgical procedures and medication. However, about a year or more ago, I started getting another type of head pain, a bizarre almost normal, but incredibly severe, headache that responded to virtually no pain medication whatsoever and attacked me at all hours of the day. Since I have severe insomnia and average about three hours of sleep a night, this meant I have been having 9-10 out of 10 pain levels 20-21 hours a day every day for a year or more. Combine that with the occasional and increasingly frequent TN facial attacks, which are 10/10 minimum, and it’s agonizing. To make matters worse, about 10 months ago, out of the blue, I developed agonizing back pain. It was also 9-10 out of 10 pain, daily, for nearly the whole day. I’ve had some back problems for the past three years, but they haven’t bothered me a great deal, at least not without some movement, and this was just from sitting or standing or doing nothing at all. It was bizarre. Nothing helped. So between the two to three types of pain — head, facial, and back, all 9-10 out of 10 — it’s been a damned brutal year. I went to my orthopaedist some time back and she took x-rays and looked again at my old MRI and sent me to physical therapy. I also went to a rheumatologist I had to wait seven months for an appointment for. She did extensive testing and took more x-rays and between the two of them, they informed me that I have spinal stenosis, which I knew, degenerative disk disease, which I also knew, massive amounts of osteo-arthritis throughout my entire body, and a broken tailbone, which explained the coccyx problems I had been having awhile ago. I was told I would need to have my tailbone removed via surgery, although three of my other doctors have strongly recommended I not do this, that I’ll probably have to have two hip replacement surgeries in the not too distant future and there’s also a decent chance I may have to have spinal fusion surgery. Great. After four months of physical therapy with virtually no progress and pain still at 9/10 out of 10, my doctor sent me back for four more months, which is where I’m at now. If PT doesn’t end up significantly reducing my pain, it’ll probably be surgery and I really am not looking forward to that.

Meanwhile, back to my head pain. I have been to several doctors, including my main doctor, my pain management specialist, a neurosurgeon, and a few neurologists in different cities and I have four head pain diagnoses. In addition to TN, these include tension headaches, severe migraine headaches, and cluster headaches. For those of you who don’t know, Trigeminal Neuralgia is extremely rare and extremely painful. I believe only about 40,000 Americans have it and only about 10,000 have Type 2, which I have. It’s hard to diagnose and harder to treat. It’s also considered by many to be the most painful disorder known to mankind. Look it up. The last time I looked at Wikipedia, it referred to it as “the suicide disease.” Likewise, the cluster headache is ALSO considered by many to be the most painful disorder known to mankind. I guess it depends on what your resource is. But look it up. So I’m essentially doubly cursed and basically screwed. And the thing is, I don’t think that’s all of it. I think there’s more that they’re missing. I know there are a number of rare neurological head pain disorders, many TN-related, which go undiagnosed, that could more realistically explain my head pain. Cause I’m possibly willing to believe cluster headaches and I know I have tension headaches, but I’m not willing to believe severe migraines are causing the kind of 21 hour a day daily head pain I’ve been having for a year, as the head pain isn’t consistent with typical migraine characteristics and responds to absolutely no migraine medications I’ve been given. None. So I think it’s something else. But my doctors are reluctant to go that route. One former neurologist thought I might have something called Pseudotumor Ceribri and I had to have a spinal tap to test it. I was very, very close but he decided I did not. My present, local neurologist is giving me Botox injection treatments, which is common and expensive, and next month may give me facial steroid injection treatments, but after that and one more Botox treatment, if I don’t respond, he too may send me for a lumbar puncture to see if it’s that. I don’t want that but am willing to undergo that again just to see.

In the meantime, on Monday I have to go back into the operating room. It won’t take long, maybe 45 minutes. A few hours in recovery. Outpatient, home by mid-afternoon. Unfortunately, my wife has to take a lot of time off from work since I obviously can’t drive myself due to the anesthesia. And it always takes a long time for it to wear off for me. Like a week. I will drag all week. That sucks. But hopefully it will help some, because lately I’ve had quite a few vicious TN attacks and that’s got to stop. Cause I’ve got to focus on getting rid of all of this other shit. Please wish me luck. I definitely need it.

Posted in Health | Tagged: , , , , , , , , , , | 13 Comments »

A Review of Hyper-Chondriac

Posted by Scott Holstad on November 19, 2015

Hyper-chondriac: One Man's Quest to Hurry Up and Calm DownHyper-chondriac: One Man’s Quest to Hurry Up and Calm Down by Brian Frazer
My rating: 4 of 5 stars

This is an interesting memoir. At times, it’s often quite funny. At times, it’s often quite sad. It’s about one man’s experience with coming to terms with and trying to overcome his rage, anxiety, tension, and violent outbursts. At least he recognized his problems and tried, right?

Brian grew up in a Long Island Jewish family where his mother had MS and was one angry, pissed off, horrible bitch of a human being who practically tortured his father for life and made life miserable for him and his siblings. They never ate dinner together, except for once a year. They only ate fast food. When Brian went to college, he didn’t know how to use utensils and ate, quite quickly, with his fingers and hands and thought all the stares were admiring stares of appreciation for his appetite. He literally ate everything as quickly as possible and with his hands. In fact, he was always in a hurry, always impatient, and blew up at anyone who got in his way or who let him down, especially as he was excessively punctual. He took up body building — he was rather OCD — and built his body so greatly that he won competitions. Then he took to eating ice cream competitions. And so it continued.

One thing I didn’t like about the book is that somewhere there’s a break in the book — and his life — where he apparently graduates from college, moves to Los Angeles, marries a girl named Nancy, and becomes a writer — and he doesn’t mention any of this in his own memoir. Um, okay. Yeah. Rather stupid, if you ask me.

The remaining chapters are about Brian’s attempts to get his life under control. He finally finds out he’s “abnormal” when he goes to a dermatologist who tells him he’s the most tense human he’s ever seen and proscribes Zoloft for him. He’s stunned. Of course, he knew he was guilty of tremendous road rage, but then, wasn’t everyone? So, he turns to other areas that might help him — yoga, tai chi, Ayurveda, cranial-sacral therapy, etc. Each chapter is on one of these and more. He learns something about himself and of value for his search for betterment in each chapter, no matter how ridiculous the scene or how badly he’s getting ripped off. Finally, he and Nancy get a dog near the end of the book and it’s a very calm dog. And it helps calm him, along with his stringent diet, yoga (which initially almost destroyed his hip), etc. Towards the end of the book, a sister calls him to let him know his mother is having serious medical problems and his father has thrown his back out and needs help caring for her, so Brian and Nancy take off for the East coast to help out, where he is immediately taken back to the anger and hatred of his youth. But he survives and moves on, wishing his mother could too. He leaves the reader with his status as a work in progress. It’s really an unfinished book. I wondered why he chose to write this particular book at this particular time in his life. I don’t know the reason and will probably never find out. Whatever the case, it’s a good read, if for no other reason then it’s very, very funny. Recommended.

View all my reviews

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