Do you ever fell like going to the doctor will open an enormous can of worms? Well the can is open and worms are everywhere; wriggling, squirming, slimy worms that seem to have taken up residence in my stomach causing me great anxiety. What can am I talking about now? I realize I have several open already and the worms are escaping left and right… I mentioned in an earlier post that I was on the hunt for new doctors. Well I found a new rheumatologist that I have high hopes for but with every new doctor comes more theories, brand new diagnostic possibilities, and a slew of fresh anxieties. Are ya’ ready? Me neither, but let’s chat about it. Ok, so I’ll write about it and you’ll read at which point comments are most certainly welcome!
In true doctor bureaucratic fashion my current rheumy’s staff did not send all of my medical records to my new rheumatologist. Despite the fact that I specifically asked them to send it all including any scans, x-rays, etc… they only sent the most recent notes from my last visit. Argh! This makes it very difficult for any new doctor to comment on my situation because they are not privy to the entire picture. Argh again! After having spent two and half hours being asked to explain in detail my symptoms, when they started, and the details of my bowl movements (yay!), he still wanted to see those records before making any definitive decisions about my care.
What I did appreciate about him was that I felt I got a thorough exam and he obviously took time to listen to me and really delve into what I was trying to express. He wants to change some of my meds which is easy enough to accomplish. What threw me for a loop? He would like me to see a gastroenterologist and a neurologist. I’ve known for some time that this issue would probably come up. The new primary care physician I’ve been working with briefly mentioned this idea as well. Let me explain why the idea of visiting these two specialists is likely to open a colossal can of giant, and I mean GIANT, worms.
Let me begin with the neurologist. In my early thirties I began to have some strange neurological symptoms, tremors, transient double vision, numbness and tingling, and let’s not forget clumsiness. Actually, I think I was just born clumsy but apparently the doctors think it is a bit abnormal. Ha, go figure! I still like to think that it is just part of my charm. Nevertheless I was referred to a neurologist to rule out the possibility of having MS. I was hoping that upon meeting the neurologist they would say it was nothing but, no, that was not to be the case. An MRI was ordered as well as a spinal tap. Yikes! You read that right, a spinal tap. That phrase sends shivers down my spine, yes, pun seriously intended. I wish I could say that everything went off without a hitch, but have you read my blog? That was not bound to happen.
What did happen? Shock and awe people… shock and awe. The MRI was fine, I mean who doesn’t enjoy lying perfectly still in a small tube with your head in a cage while the machine belches out loud obnoxious noises? I love it… NOT! Right afterward they gave me some Valium in hopes that it would calm my nerves before they attempted to stick a needle of gargantuan proportions in between my vertebrae in an attempt to retrieve my spinal fluid. This did not go well, and by not well I mean horrifically wrong. First off, the Valium that was supposed to calm my nerves had no effect on me whatsoever. I didn’t even feel slightly sleepy, not in the least. The doctor opted to allow his physician’s assistant to do the procedure. At first I wondered if this was wise but she assured me she had done them many times. After about 30 min of her attempting to get the needle in and appropriately positioned I seriously began to doubt that. Finally after many tears on my part and actually a few on hers, she called the Dr in. He grabs the needle and chooses his spot on my poor spine which by now has so many puncture holes I might as well live in a pineapple under the sea (if you missed this reference, Google Spongebob!) He begins by gently attempting to insert the needle which doesn’t budge but a few millimeters into my skin before he’s encountered the same problem his PA had, they hit bone. OWY! He then grunts and says, “Sometimes you just have to be tough…” I just about fainted as he proceeds to push the needle until it grinds past the bone and into my spinal canal. I hear Greg suppress a gasp, later he tells me that the needle bent so much with the pressure the doctor was exerting on it that he thought it might actually snap. This is no small needle either.
They finally succeed in getting it in the right spot and capture a sample of my precious spinal fluid. I’m feeling so battered, both emotionally and physically by now that I just want to go home, curl up in a ball, and curse them both ‘till their dying days. What they said would take about 5 min and be practically painless has now taken them almost an hour and half to accomplish and, trust me, there was plenty of pain. I was told to go home and lay down for 24 hours to help prevent a spinal fluid headache. They said they would call me in a few days to let me know the results of the test. In the mean time if I were to get a headache I was to call their offices so that they could send me to the hospital for a “blood patch.” Well, I hoped I would never have to find out exactly what that term meant so rather than ask questions I just looked at Greg and said, “Get me out of here!”
I should have known. I mean if there is even the slightest chance that things can go awry for me, they do. They really, really… really do. Yup, you guessed it, I got a headache and can I tell you this headache was one of the worst I’ve ever had and I’ve had some doozies. Greg calls the doctor who sends me up to the hospital where I meet with a team of anesthesiologists. An anesthesiologist? Hmmm, I was beginning to wonder what this was going to entail. Apparently this type of Dr is used to the spinal tap experience and after I thought about it, considering epidurals, it made sense. Cut me some slack will you? My kids are adopted so it took me a minute to make that connection. They described the blood patch procedure to me and I just about fell off the bed in terror. They take fresh blood from your arm and inject it into your spinal canal over the same spot where they did the spinal tap. The theory being that putting my own blood back into my spinal canal and allowing it to clot would repair the holes that were leaking the spinal fluid thus causing the headache. Ugh, here we go again with the big needles… really big needles… really, really big needle this time. The best part is that after they show you these monster needles they’re about to use they tell you that you must “AT ALL COSTS” hold perfectly still so that they don’t accidentally paralyze you. Let that sink in for a moment. Can you tell I abhor needles, oh and paralysis as well?!
So they put a small needle in my arm ready to collect the fresh blood they would then push into my spinal canal. Then comes the giant needle in the spine. They’re poised and ready to go, I’m practicing my deep breathing techniques and pretending I’m anywhere but there and they proceed. I can feel the needle going in, they’ve numbed the skin so it isn’t too bad, just some pinching and suddenly I don’t feel so good. I’m sitting up, bent over a medical tray, and the room starts to go black. Greg, who is sitting in front of me, says you don’t look so good and the last thing I remember are his eyes going wide while saying to the doctors, “Um, she looks white…. No she looks grey!” I awoke with a start a few seconds later, and by with a start I mean I jolted and took a huge breath as if I’d been under water and was just now coming up for air. They told me that my heart had stopped and they’d given me a shot of Epinephrine. Well then! I know what you’re thinking, and no, it wasn’t all “Pulp Fiction” straight through my sternum and into the heart because luckily they’d started an IV and just injected it there but still… It was apparently a big “to do” because for several hours afterward interns were coming in and out of my room to see the lady who’d had an inexplicable reaction to a blood patch procedure (I was at a University Hospital, in other words a teaching hospital.) I know; I’m an odd ball.
Upon leaving they gave me the same instructions, lie in bed and remain flat as much as you can for the next 24 hours. Might I also mention that I was told that a very, very small percentage have to come back for a second blood patch? Well you can guess where I was less than 24 hours later having the entire procedure repeated, luckily this time my little ticker decided to keep on ticking but FOR THE LOVE! Two blood patches, you can imagine the parade of interns again and the shaking heads of the team of anesthesiologists. What can I say? I’m just cool like that! A few days later I was asked to make an appointment with the neurologist to go over the results, they were negative. Whew!?! Nope, hold the phone, because apparently it can take anywhere from 5 to 10 years to diagnose MS and based on my symptoms they still haven’t ruled it out completely. I’m supposed to be getting an MRI of my brain yearly to monitor the spots they found there during the first one; oh did I forget to mention that, yeah… I’ve been a bad patient as far as that is concerned, please withhold judgment, with everything I have going on I have to choose my health battles, so to speak.
Moving right along to my experiences with the gastroenterologist; take a deep breath everyone, here we go. Beginning as a small child I’ve always had stomach issues. In my teenage years they progressed and often I would end up doubled over on the bathroom floor in extreme pain and vomiting. These episodes would come and go. They often seemed to be connected to something I ate. Finally as an adult in my early thirties an ER doctor suggested it might be my gallbladder. I had other doctors mention it in the past but every time they did an ultrasound or CT scan everything came back normal so surgeons were hesitant to touch me. This was all brought up again with a trip to the ER which resulted in my being admitted to the hospital. The pain in my upper right abdomen was so bad I’d fainted several times on my bathroom floor in between bouts of violent illness. They did ultrasounds and CT scans and again everything looked normal. The ER doctor insisted that he still felt it was gallbladder and so he sent me to a surgeon. The surgeon looked at my normal results but decided to send me for a HIDA scan just in case. Wait, a HIDEY WHAT? Well they inject you with a radioactive tracer and use a gamma camera to track the flow of your bile as it is released from your gallbladder. And you guessed it; the results came back within normal parameters.
The surgeon opted to send me to a gastroenterologist who immediately decided that we needed tests, lots, and lots of tests. Oh joy! Over the next two years I would endure several colonoscopies, endoscopes, HIDA scans, stomach emptying studies, CT scans, MRI’s, x-rays etc… I had so many radioactive substances and tracers, injected and ingested, that I’m sure I was positively glowing. Throughout this timeframe I became more and more convinced it was my gallbladder. I would end up back at that stupid ER only to have another ER doc exclaim, “It’s your gallbladder call a surgeon.” My gut feeling (I know, I’m hilarious…) was that it was indeed my gallbladder. I kept begging them to stop poking and prodding me and just take the darn thing out. I told them time and time again, “My body has never been good at communicating what is wrong with it based on blood tests and imaging.” Of course that made no difference to professionals who were trained to follow the scientific trail because following hunches is frowned upon. Well finally the gastroenterologist decided that it was time, thank goodness! I’ll never forget sitting in her office when she finally caved. I’m not sure what the look on my face was but she interpreted it as hesitation because she said, “Well sweetie, if it has to come out we just need to get to it and stop your suffering, you’ll be all right!” No comment… Thankfully the offending gallbladder has since been removed and it was offensive. That is to say, the surgeon said that is was in really bad shape and he just couldn’t understand why all of the tests came back normal. My response, “Well I’m not normal!”
Back to the present; now you might understand why when the new rheumatologist says, “I think we need to get a neurologist and a gastroenterologist involved,” I may not be jumping up and down for joy. Are you with me? Can open, worms everywhere! Wish me luck, I’ll keep you posted.