Saturday, June 22, 2013

My body falls apart and starts collecting doctors

Content warning: doctors, medical stuff, specialists, pain, medication, brief mention of grad school, and other related topics

I have had chronic muscle (back) and nerve pain (leg) for the past 2 years. When it first started they didn't know what it was. They thought it was a herniated disc so after a few months of trying to get appointments and referrals and find a specialist covered by insurance, I finally had an appointment with someone. She sent me for an X-ray to get a better look at what she assumed was a herniation.

The MRI came back and we realized that it was not in fact a herniation. To totally over simplify, I was born with a spinal cord abnormality that was asymptomatic for most of my life until a few years ago. A few years ago out of nowhere the pain started. They don't know why it started when it did but after it started it only got worse and then began to spread. After we got the MRI and realized it wasn't a herniation (later that day) we saw a neurosurgeon and started the process of preparing for and scheduling surgery.

I might post more about some of this stuff later but basically I had surgery, spent 4 days in the hospital, and then came back home. Shortly after I started the fall semester at school and juggled post-op visits with my neurosurgeon, college workload, starting physical therapy (and going twice a week), finding time to see my partner (at a different school in the same city), and occasionally do things like cook and clean.

More recently: 
As a result of my spinal cord stuff I have to see my neurosurgeon every year for a checkup and any time there is any indication of a change in symptoms I need MRIs. I HATE MRIs! Anyway, recently he found out that the slight herniation I had when I first had an MRI is now a full blown herniated disc. So, he wanted to send me to a spine specialist to make sure that there was nothing to be worried about in terms of that. The spine guy agreed that since there hasn't been any noticeable change in symptoms correlating with the progression of the herniation it most likely hasn't really done much to me. Basically, I was in so much pain before it that if it caused any pain it was less than what I was already in .

I told my dad that I didn't want someone to just put me on narcotics. I know that for a lot of people they are totally necessary and I don't want to imply that those people aren't trying hard enough with other methods or anything. I just personally don't think I could take them regularly and don't want to. I also just don't like being prescribed stuff constantly when there are non-pharmaceutical options available. One of the main reasons I'm resistant to narcotics is that I'm on a number of medications already and I don't like compounding side effects and things. This is all how I personally feel and not AT ALL a judgment or statement about people who use opioid pain relief for their chronic pain. I trust that their decision is what is right for them and my personal decision is my own, just as theirs is. There have been specific times in my life where I have decided that pain meds were necessary but while in nursing school I want to have other options.

A few months ago my dad finally had me see a pain specialist. He reassured me that it would not just be someone trying to prescribe me pain meds without giving me options. At the appointment we discussed a number of things. He said that physical therapy was one of the least invasive options but since it didn't seem to be helping enough for me he wasn't going to force me to go back and do more. There are also non-opioid medications that can help with pain. He mentioned a few other options and said that as a LAST RESORT there is a procedure they can do which involves inserting something into my body for spinal cord stimulation but that he didn't want to try that unless everything else failed.

So, the anti-depressant I have been on for a few years already (Cymbalta) is commonly prescribed to help with neuralgia. Unfortunately, since it obviously wasn't helping much (as far as I know, I was on the Cymbalta years before the pain ever started) so I couldn't be put on Cymbalta for the pain. However, Neurontin (Gabapentin) which is an antiepileptic (i.e. medication for people with epilepsy) is also prescribed for pain. So he started me on that. It seemed to actually be helping. Until I started clinicals.

For those who know what nerve pain is like from personally experience, you understand, and I'm sorry that you do. Those of you who don't, I will try to explain. The types of words most people use to describe nerve pain, medically referred to as "neuralgia", are sharp, shocking,  stabbing, burning, sometimes icepick pain and lots of other really unpleasant words. Everyone has different experiences but the neuromuscular pain in my back that I get, while really bad and sometimes bad enough that I can't walk or get out of bed is still manageable to me. The nerve pain however fogs up my brain and unlike the back pain there is nothing I have found to make it easier at all.

I have done physical therapy, I take over the counter pain medication, I bought a lumbar support brace, and I put a prescription cream pain medication on. I was still in pain for clinicals. The program has also made it clear that if there is anything I can't do in clinicals due to disability, I still fail. That is a whole other post and I'm too upset about it to even try to start talking about it. Anyway, pain is bad and I was seeing the doctor again. 

The other day:
So the other day I had a follow-up appointment at 8:30am with a pain management specialist. 8:30 isn't so early for a lot of people but I'm really not a morning person. Also, I'm in a very rigorous program and I have classes most days starting at 8 or 9 and they go until after 7pm one night and I'm always exhausted. I never have time for work etc. so on my one day a week that I get to sleep later than 8pm having to leave the house at 7:30 is horrible.

We go there and the receptionist isn't even there yet. Finally she arrives and notices we are all there and signs us in. It takes a while and finally I go in to see him. The nurse comes in. In general, I really like nurses. Not surprising since I'm in nursing school. I however really don't like the nurse he works with. She messed up my history when she entered it into the computer last time around. I spelled stuff out for her and everything but she wrote down the wrong medications for which ones I am on (which is super dangerous to have the records wrong) and she wrote down the wrong surgeries for me as well and the wrong years and stuff. So, I wasn't the biggest fan.

Next I got to see a pain fellow. He did lots of things that were super obvious (as someone learning to do a head to toe physical at the moment) were him trying out what his clinical instructor just taught him recently. A lot of the tests were totally unnecessary and it was sort of like a "does this hurt? hmm, not yet. okay, what about this?" game to see what he could do to make it hurt. So yeah, not my favorite game. Then he suggested I get steroid injections. The last time I was there, my actual doctor had said that normally he'd suggest steroid injections to my spine but due to the surgical history and all the other shit going on in that area he didn't think it was the best idea.

HOWEVER! The doctor comes in and basically redoes half the tests and then suggests we do the invasive actual surgery that the time before he had suggested as a LAST RESORT. So yeah, I'm a little frustrated. Also, at this point from sitting around waiting for him all this time and being stressed and stuff I'm in pain and exhausted and have brain fog. Also, I really didn't have the spoons to be like "What are you talking about?!?! You are the person who thought we should leave my spine alone!!! Do you even read your own notes from previous visits?!?!". Also, a while back I actually read a study they did about chronic pain and the type of procedure he was suggesting and they said in the study that it was only indicated for people who had used TENS units for years and no longer found any relief with them. I have only used a TENS (transcutaneous electrical nerve stimulation, basically applying electrodes to your back and stimulating the nerves that way) in physical therapy a few times and really liked it. I mentioned that I was interested in getting a unit for home (you need a prescription and a session with someone to teach you to get insurance coverage and stuff) and he had just said to ask the rehab guy.

So despite the fact that I had been interested in getting a TENS unit and nobody has let me try it yet and a whole other list of things he seemed to forget everything he said and suggest I see a neurosurgeon to discuss whether cutting me open again and implanting stuff inside of me that will be remote control operated is a good idea. If I hadn't been so tired and in pain I might have been able to respond with anything other than wanting to cry. He is increasing my dose of the neurontin so hopefully that will help, but I have managed to avoid the side effect of being exhausted constantly and am worried that the higher dose will make that worse.

I am SOO sick of being sent to a bazillion specialists. To repeating the same information every time. To finding the time and money to go. It is just unbearable. I also don't want to do spinal cord stimulation. I don't want to be cut open, experimented on, or anything else. No. I'm sick of specialists and having specialists refer me to more specialists. This is me putting my foot down. I don't understand why I have to use up all my parents money if I want pain relief without being cut open or medicated. At a certain point you have to evaluate whether being shuffled around and spending all your money is worth the minimal amount of pain relief they might actually provide. So, while I feel like a two year old throwing a temper tantrum, I'm going to keep saying no because it is just not okay to think that people have the time, money, and energy to be sent to specialist after specialist.

My collection: 

So, in case you haven't been counting and to fill you in on the ones I haven't mentioned in this post, lets count all the medical professionals who I have seen over my life. I'm not counting multiples if they are for the same thing (i.e. pediatrician-->internist they aren't counted separately and I have had a bunch of different GYNs).
I am putting *s by people I (was supposed to) have seen in the past year

Before my spine released hell upon my life: 
1.* Internist
2. Gastroenterologist- GERD and IBS (acid reflux and irritable bowel)
3. * Dentist (doesn't really count since I'm way behind in going due to not having time with all my other doctors)
4. *Eye doctor- I've had glasses since I was in 2nd grade or so
5. *GYN- Most likely I have endometriosis (I've switched a bunch of times over the years and think I finally have one I like)
6. Hemotologist- I have a family thing which means I just clot a little slowly and bruise easily (only relevant if I'm having surgery)
7. Breast specialist person- I had a lump removed from my breast when I was in high school
8. Otolaryngologist (aka ENT, ears nose and throat) surgeon- I had my tonsils removed because they were super cryptic and horrible and I had a chronic bacterial infection from them
9. *Psychiatrist- Autism Spectrum ("Disorder"), depression, anxiety, OCD, and some other stuff (I've been seeing him fairly regularly for a few years and he deals with all my meds)

Since the pain started
10. Some type of specialist who had the MRI taken and then freaked out when she saw what was actually wrong (i.e. not a herniated disc)
11.* Neurosurgeon- who operated on me and who does the follow-up; technically the NPs who work with him do a lot of the follow-up but they keep changing
12.* Urologist- I'm writing another post on this experience, but spine stuff makes certain urological things problematic
13.*Physical therapist- I started up a few months after surgery with them (PT and PTA) to work on my back and leg stuff, on and off for about a year and a half
14.*Women's Health PT- (in the other post explained) for pelvic floor stuff, still going there (have seen 3 different people there)
15.* Pain specialist- to try to make the pain manageable
16. *Spine specialist- the guy my neurosurgeon sent me to in order to make sure the herniated disc was okay
17. * Rehab doctor- pain specialist referred me to him, supposed to get acupuncture to help with pain but it is so incredibly expensive (since acupuncture isn't covered by insurance) that I can't bring myself to do it. I might wind up going because my dad wants me to try it but I know that my parents can't afford it and I'm so tired of how much I cost to keep "healthy"
18. *The new neurosurgeon the pain specialist referred me to in order to evaluate the possibility of the spinal cord stimulator

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