I just returned from seeing a new neurosurgeon, for a second opinion about my Chiari Malformation. I’m a bit upset still, as I write this, but I feel like I need to do this while it’s still fresh in my head. I don’t want to name this new doctor, so we’ll just call him Dr. Smith.
The reason for getting a second opinion is because the surgery doesn’t seem to have been successful, and because I desperately want to find a solution to the pain and fatigue. I don’t want to live the rest of my life (or even years more until someone figures out what’s wrong) reliant on pain pills to be able to function. I want to be able to live a more normal life, and do all of the fun stuff with my boys, and not constantly have to check myself to make sure that I am not being grumpy and rude to those around me.
In mid-May, my 90 days since surgery were up. This meant that I switched from short term disability, to long term disability (LTD). Thankfully, my employer had good coverage for both. Unfortunately, when I switched over to LTD, the insurance company put me through a medical review, which took a lot of time, meaning that I have been without income since mid-May. After about a month, I finally got a phone call from them, saying that my LTD claim had been denied. I was floored! I still haven’t seen the denial letter (because it was sent to my sister’s house, and I haven’t been able to get it, yet), but the insurance guy told me that the denial was based on Dr. Reichmann’s statement to them that he had released me to go back to work on April 5th, when I had my post-op visit.
February 14 was the date I had surgery. April 5 was 7 weeks after surgery. That week was the first time that I was able to drive, and looking back at my diary, I slept for 24 hours after because I was so exhausted. In fact, here is what I wrote about that first trip out:
I first drove to the book store, here in Sugar House. That went well, so I went ahead and trekked out to the ‘burbs to see Kim. It all went really well. I remember thinking that maybe I shouldn’t drive every day, yet. For the life of me, I don’t remember why, though. Looking back over my FB posts, it looks like I slept through the next day, over 24 hours, so maybe that’s where it came from. I guess it exhausted me. I’m not certain at this point that it was the visiting, or the driving, or if there was another cause. I still have a lot of Chairi brain-fog, I guess. I feel like I don’t have it often, but to have to look back at FB to figure out 2 days of my life, I guess I do have to admit to it.
The appointment lasted all of about 30 seconds. He asked me 2 questions. I don’t remember what they were, but I remember discussing the appointment after I left, and I was flabbergasted by how brushed off I felt, and that he didn’t even really check with me to see how I was. He didn’t even ask how I was doing, or what things I was able to do.
And so Dr. Reichmann told the insurance company that he’d released me back to work that day. He didn’t tell me that at the time, and he didn’t give me a doctor’s note saying that he had. But, he totally screwed me over when he said that to the insurance company. There was NO WAY I could have gone back to work then, just absolutely no way!
One more flashback, before I get on to what happened today. Prior to surgery, I saw another doctor in my main doctor’s office, for a med refill (and my doc was unavailable), I think. Anyway, he warned me that he’s had experiences recently, where surgeons don’t give patients the correct amount of pain pills when they’re in the hospital. He said that if I wasn’t given at least the same amount while I was in the hospital, that I’d wind up having withdrawals. He also said that I should probably be on double the amount for the first few days, and then I should work back down to whatever it was that I needed to stay out of pain, without being loopy from it. Here’s the kicker – he said that sometimes the surgeons get stubborn about it, and that if that happened to me, that I should ask for a pain specialist.
Can you imagine having brain surgery, and part of your neck removed, and not only be in extra pain, but have withdrawals on top of it? I can. Because that’s exactly what happened. I talked to the nurse, and she said I had to talk to Dr. Reichmann. I tried to talk to him twice, and my sister tried another time. He refused. And then he refused to allow me to have a pain specialist. Flat out told me I couldn’t.
So, I already didn’t like the guy, and I feel totally screwed over with the disability insurance incident.
Prior to finding out about the LTD insurance stuff, my main doctor had already advised me to find another neurosurgeon and get a second opinion. I had put it off, because there aren’t a lot of them around here, and I didn’t want to go to one in the same practice as Dr. Reichmann. When I found out about the LTD insurance denial, I went ahead and made the appointment with “Dr. Smith”.
I went in today to see Dr. Smith, prepared to have a long discussion about symptoms, and probably a followup MRI. I’m not feeling like surgery has done much, and I was really hoping that he would have some other information that could help me get out of pain and back to living life as it’s meant to be. Man, was I way off track!
I brought my friend Brenda with me, at least partially so that I’d have someone with me that would remember the details, and maybe ask questions that I forgot to ask. I have no idea what I’d have done without her!
Dr. Smith walks in and stands, towering over us, in the door way, and announces that he’s not going to take the case. I was more than a bit shocked, by both the news and the presentation. He ended up coming in the room to discuss things a bit more. Now, I’m going to be paraphrasing things a lot, because by the end of the conversation, I may have shed a tear, or two. And when I get emotional, like that, I tend to remember things more in terms of what message I got from what was said.
One of the first things he told me was that he’d have never operated on me, and that he thought that Dr. R was wrong to have done it. He repeated that idea a few times further into the discussion. He also said that there was no way he was going to take my case, and try to sort out what Dr. R had done, or why.
After I had the Chairi Malformation diagnosed, last October, I did a lot of research. What I discovered was that it is impossible to determine whether a Chiari Malformation (CM) is causing problems by looking at an MRI. Many people with large CMs experience no symptoms from it, whatsoever. And some people with smaller ones have a lot of symptoms. There are also a lot of stories from people with lots of symptoms that go years trying to find out what is wrong, and then have doctors and neurosurgeons tell them that there is no way that the CM is the problem, yet later find a doctor willing to do the surgery – and then have a very successful surgery. You know, success, as in it takes away the symptoms.
So, if I had seen Dr. Smith at the beginning of the year, I’d probably have not put any stock into his words. He pulled up my MRI and told me that he saw no reason to think that my CM was causing my symptoms. At one point, he even said that he didn’t think I even had a CM, though he backed off of that shortly thereafter and went back to saying it was just a small CM.
When he first came into the room, Dr. Smith was very abrupt and rude, so I was a bit angry with him at first. In fact, I think I said at one point something to effect of, ‘if you’re not going to help me, I should just go ahead and leave’. I think he realized how rude he had been, and then was trying to explain why he felt that way. He also said that he’d previously worked with Dr. R, and (I’m summarizing here) that he didn’t agree with the way he handled a lot of cases. I think he was being nice and didn’t say everything he wanted to, but I was surprised to hear him disagree so sharply. He kept saying that if I had come to him first, that he’d have never considered surgery for me, and that I’m now in the post-op stages, and so he wasn’t going to take the case, because all he would be doing was trying to figure out what Dr. R had done, and why. Since he’s a neurosurgeon, he wasn’t going to be doing any surgery, there was no point (from his perspective) to see me. He said my best bet was to go back to Dr. R, and try to have him sort out the disability stuff, and that I should probably start over and go see a neurologist (instead of a neurosurgeon) to try to figure out what is causing the symptoms. Again, he was very emphatic that he didn’t believe for a moment that my pain, fatigue, etc. were caused by the CM.
About halfway through the conversation, after he found some of his bedside manners, I went from being angry to feeling hopeless. All I really want is for the pain to go away, and to be able to stop relying on pain pills. And I guess from an emotional perspective, I felt like he was taking away any hope I have of that happening. Of all the things that I’ve discussed with doctors about what could possibly be causing my symptoms, the only one that made any sense was the CM. And as long as it’s the CM, I feel like there’s hope for a fix. If it’s not CM, then the most likely scenario is that my symptoms can’t be fixed. That feels like being stranded on a deserted island with no hope of a rescue.
I don’t know that I’m convinced by Dr. Smith’s opinion that it’s not the CM causing my headaches and pain (and nausea and vertigo and “brain fog” and so on). I have to accept that it’s a possibility that he’s right. And there’s a little doubt in the back of my head that wonders if Dr. Smith’s opinion of Dr. R skewed his opinion about my CM. Just a little one, but it’s there. But, at this point, I’m stuck between the doctor that put me into withdrawals, screwed me on disability, and doesn’t seem to care how I’m doing, and the doctor that’s taking away my hope for a normal life.
To put it simply, I feel like hope for feeling any better than I do today is just a bunch of bullshit, and a waste of time trying to pursue.
Don’t get me wrong, I’m glad that there are pain pills that enable me to get out of bed in the morning, take care of my kids, enjoy visiting with friends, and hopefully be a success when I go back to work next week. But, I want more than to just be able to survive life. I’d like to be able to enjoy it – go hiking, take my dog for a walk, go to Lagoon with my kids, start dating again, and all the sorts of things that I used to be able to do.
I feel like there should be a cure for this pain and fatigue. I just don’t think I have hope that there is one. C’est la vie.
Saintless 