Scandal Breaks

I have been sick since October. What started out as the flu has morphed and left me ill for weeks. It reminds me I am still frail and recovering from surgery.

It was a usual Saturday when my mom called me, frantic. Have you heard? UC Davis neurosurgery department is being investigated for unregulated practices. Killed at least 3 people. At the heart of the storm is my old neurosurgeon, Dr. J. Paul Muizelaar. Apparently, Dr. Muizelaar, along with another neurosurgeon, tried "treating" brain cancer patients by drilling a whole in their skull and infecting them with bacteria. The story is much more complicated, but really disturbing, and unnecessary to retell.

Technically, my current neurosurgeon is not involved in this scandal, but I find it really hard to believe. He's head of the department, how could he not know about the unauthorized practices? The reports that I have read say anyone who had a surgery in the last 2 years was a risk (that's me!). I'm thankful that nothing bad happened to me, but it certainly calls into question if I should be trusting these doctors. I can honestly say I've been shaken to the core. I knew the doctor who did these atrocious acts, I have spent hours with him. I researched him, I checked if he had malpractice lawsuits (I only found one, but it turns out he's had dozens, and over 200 patient complaints), and I did not see this coming.

I still need a revision. I can't find a new doctor. I've called several doctors in Sacramento and not a one will touch me. I've also contacted dozens of doctors in San Francisco and no one will return my calls. My Medtronics rep is, unfortunately, useless. After months of silence, I have given up on him completely. It feels lonely to be in this sea of unknown with no guide. My hope is the new year will bring me a competent doctor who is willing to give me a shot.

As for UC Davis, well, time will tell how much they pay for their misdeeds. Part of me hopes they lose their accreditation. How could they offer "good care" if they are letting their doctors get away with such disgusting research? I sure wish my neurosurgeon had told me he couldn't handle my case; it would have saved me a year of pain and so many tears. If you're interested in this debacle, here are a few articles:
http://www.sacbee.com/2012/12/08/5040127/federal-regulators-blast-uc-davis.html
http://www.sacbee.com/2012/12/11/5045426/feds-inspect-ucd-medical-center.html
http://www.sacbee.com/2012/12/23/5073481/report-finds-violations-at-uc.html#storylink=misearch

I wish everyone happy holidays and good health!

Tips and Tricks: Social Security Disability

It dawned on me recently that I may know much more about being disabled that the average person. I am very fortunate to have a mother who is a former special education teacher, and she has taught me so much. I thought I could share my wisdom, but I would like to remind you that I am not a doctor or a lawyer, so please use the advice at your own discretion.This first section will be about Social Security Disability, and my next post will be about more general illness issues.

Social Security Disability
Apply for social security disability as soon as possible. Even if you think you're not actually sick enough to get it, apply anyways. Social Security is known to deny people pretty easily, but once you are approved you get back-payments from the date that you originally filed. I know that I personally did not believe I was that ill, but my mom pushed me to apply, and lo-and-behold I really was sicker than I wanted to admit. The day I was approved was one of the most difficult days of my life; before then my brain would not let me believe this illness was permanent. Once the shock wore off I realized being approved has turned out to give me a lot of freedom (I don't have to rely on my mom financially), so I am thankful that she pushed me to do it.

I was denied the first time I applied. I was mostly blind and had just had 2 very serious brain surgeries. I believe I was denied simply because I was 21. I hired a lawyer for my appeal, but I strongly caution others not to do that. I have learned you don't really need a lawyer until you get denied twice (a social security employee actually told me that). My lawyer got 20% of my back payments along with some other smaller fees, and he didn't help me at all.

If you are under the age of 21 and have a parent who is on disability you are entitled to benefits under them, and you will get half of what they get monthly. For example, if your disabled mother gets $2000 a month, if you become disabled you will receive $1000 a month. This was put into place because by the age of 21 not many people have worked enough to accumulate social security credits to actually earn disability payments.

Every disabled person on social security comes under "review" to make sure your condition has not improved greatly. If you are "very likely" to get better they will review you after 18 months. If it is "possible" you can get better they will review you after 3 years. If it is "unlikely" you will get better it is 7 years. If you are young (under the age of 40ish) you will most likely be reviewed every 3 years, unless your disease is terminal. The process is tedious and the questionnaire takes forever to fill out (they ask you for every doctor you've seen in the last year, your medications, what you can and cannot do, etc.).

You do not qualify for Medicare until 3 years after you applied for Disability. Once you do start getting Medicare it's about $100 a month that is taken from your payments. However, if you are considered "low income" (which most people on disability are) you can apply for Medicaid to pay that fee for you. This has been so helpful for me because I get so little money every month I wasn't going to be able to pay for Medicare. Medicare is my secondary insurance, and in most cases actually pays for my co-payments.

Lastly, when dealing with Social Security make sure you do three very important things: 1) Keep a record of who you talk to and when, 2) Make copies of all the forms you send to them because they do lose things, and 3) Bring someone with you when you go in for interviews (it is a stressful process and it's nice to have someone to help you tell the whole story).

Silence

I know it's been months. The truth is nothing has changed for me and I didn't want this blog to turn into me just complaining. My Medtronics rep is absolutely impossible to get ahold of. I have been trying to touch bases with him for what seems like ages. I suppose it's not his fault, since my last rep went on maternity leave they have been swamped. I'm just tired of waiting.

Originally he gave me the name of a doctor who would be my best option for the next revision. I was excited, despite the fact he was out of my network. I thought getting insurance approval would be the most difficult part, boy was I wrong. Legally I'm entitled to a second opinion, and it turns out that Dr. Boggan was the only doctor in UC Davis to do this surgery, so I have to go out of network. I went to my general care physician and got a referral. Then I got a phone call saying this particular doctor "is not interested in my case." Hmm. Alright. But Jacob recommended him, so I thought it was a mistake. After months of trying to get an explanation, Jacob simply said we need to find another doctor. It's been such a painful process. I may have to go to San Fransisco since so many doctors in the Sacramento area know and respect Dr. Boggan. My theory is they see him as the best and they wouldn't be able to do any better. Who knows?

With all this silence from Jacob I just want to shake him and remind him this is my life. I am in so much pain. I don't even use my stimulator any more because it doesn't work. I'm tired of waiting to live again. I'm not putting my life completely on hold, but there is so little I can do. I've been living mostly with my mom because I'm crippled by headaches and I can't do even simple chores. Painkillers are the only thing that works right now but I hate them. I take them so I don't rip out my hair and so I can get out of bed.

I know things will get better. I'll either get the stimulator fixed or I'll learn to live better with the headaches. I really don't want option B though. I just can't imagine my life with chronic pain...

Wait...What?!

Wednesday I made an appointment with the Medtronics rep that was at my surgery in March (my original rep, Chanie, just had twins) to reprogram my stimulator. I have completely gone off painkillers (yay!) but I've noticed my headaches just aren't being taken care of by the stimulator. I wasn't expecting much from our meeting, just some more programs for better pain relief. Little did I know what was coming next...

Jacob, the rep, is amazing. He has given me more support and more information in the last two months than Chanie has in the last year. It hurts me to realize that perhaps Chanie just wasn't who I needed on my side during this process. Jacob started Wednesday by asking how much pain relief I'm getting, and sadly the answer is 60% at best and only 20% when my headache peaks over a 5-6. This is a dramatic reduction from when I had the stimulator implanted in May '11. Jacob was not happy to hear this information. Then he started checking my program and looked even more unhappy. He's not exactly sure what's wrong, but an electrode is hitting a nerve and stimulating the wrong area. He explained that I have 4 electrodes that run along my left eyebrow. I have spent hours with Chanie and done days of research and never knew that. Anyways, 4 electrodes just aren't enough, there should be 8. So why do I have half of what I need? My neurosurgeon is old school and that's just how he does it. Wait, what? Oh yeah, by the way neurosurgeons aren't really the ones who should be doing the nerve stimulator surgery, that's the job of pain management doctors. They seem to have more success, are more cutting edge, and their patients need less revisions. Wait...WHAT?!

My head was spinning. Why didn't Chanie tell me this stuff? I can forgive that this wasn't a conversation last June during my first revision. But the fact that this wasn't brought up when I needed another revision only a few months later is ridiculous. Now Jacob isn't saying I need another revision for sure, but if the new programs aren't working then it's a possibility. Well the programs aren't working. He wants me to give it a month, and I will, yet it's something you know pretty instantly.

What to do now? I'm back in Reno for a visit and I have a call into a Medtronics rep here to get his view. I've never met him, but I feel at this point the more opinions I get the better. Perhaps that was my original problem: I genuinely believed my neurosurgeon was the best and didn't consider other options.

I have already found a new surgeon- meet Dr. Dakota

When I first started researching Occipital Nerve Stimulators I read about a woman who ended up having 9 surgeries. I thought to myself, "Ha! Who does that? It will never happen to me!" But now I can honestly see it happening. I want a pain free life, or at least manageable pain, and I will do everything in my power to achieve that. However, these surgeries will not define me. I feel like I will give it one more go in the next year and be done. My body can't handle much more, not to mention my emotional health.

Stop Shoulding on Yourself

I recently got back from my first visit to Reno in three months. I was there for over a week and I'm absolutely exhausted. I was able to accomplish a lot (bought a new kitchen table, took my dog out almost every day, started getting estimates on redoing my backyard) but I think I overdid. That's why I've been staying in Sacramento so long; there aren't many demands on me here and I can just recover. It's not my boyfriend that is pushing me to do so much though, it's me.

The biggest obstacle with my illness is living within my limitations. I constantly struggle with not doing too much and accepting that I'm not a "normal" 26 year-old. A counselor once told me I should stop "shoulding" all over myself. I thought that was funny, yet poignant. I get caught thinking, "I should be getting better fast..." "I shouldn't be so lazy..." "I should be working..." Of course that's ridiculous because healing has no schedule, I'm really not lazy, and at this point (as well as the foreseeable future) I can't work.

I wish I could say that this all gets easier, but I'm not sure it does. Every time I accept my limitations, they change. To be honest, I'm still coming to grips with the fact that I have two incurable diseases. I have always been an overachiever and my illness has forced me to reign in my expectations about what I thought my life would be at this point.

It's funny, my mom's coworkers are always asking her, "Is Megan's boyfriend still around?" I suppose they can't fathom a healthy person sticking by the side of someone who is sick. And to be honest before my boyfriend I couldn't imagine it either. I always saw myself as damaged because of my illness, and in a lot of ways I still do. Before I got sick at 21, I honestly don't think I could have seriously dated someone with so many health issues. The greatest thing is my boyfriend doesn't think of me as ill (yeah, he may be delusional) and accepts my limitations. I am constantly amazed that we're still together because he puts up with so much. Relationships are really a lot of work, but double that when someone is in chronic pain. My recommendation is don't get into a relationship when you're at your worst. Even if he/she is the perfect person for you it probably won't work since you can't start off on equal footing.

Post Op

I apologize for being such a stranger around my own blog. It has been a rough recovery and even simple day-to-day routines are difficult for me. 

My surgery went well on March 10th, all things considered. My neurosurgeon did move the battery pack to my chest (yay!), and I guess there was an issue with the wires and had to pull them all out. That was a problem since the scar tissue had formed and acts basically like cement. So, he had to make several incisions along my neck and behind my ear to tear the wires out. The surgery was supposed to take 1.5 hours and it ended up taking 4. 

They kept me awake for most of the surgery, but I don't remember much. After the wheeled me into post-op I was able to see my mom and get some pain relief. I was supposed to be admitted to the hospital for 2 nights because I had 40+ stitches and my doctor was concerned about infection, but there was no bed for me and I was sent home that night. I didn't really want to leave, but since they weren't giving me adequate pain relief I was alright with going.

There was a real fight between me and my neurosurgeon about pain killers. They wanted to send me home with Norco but that wouldn't work since I'm been on Percocet for the headache pain. You can't go backwards after such a serious surgery. He finally gave in and send me home with a prescription for the same amount I've been taking. I was so confused, I thought he understood how much pain I was in and was willing to work with me. I mean, I'm having this surgery so I can get off these pills, so don't treat me like an addict.

Anyways, I haven't been writing because I am absolutely exhausted. I'm not sure why, but this surgery has completely drained me. Perhaps it's because it's my fourth brain surgery in ten months, or perhaps it's because they had to rewire everything, but I'm dragging. I'm five weeks post-op now and I am just beginning to feel normal again sans energy. Hopefully that will continue to improve with time.

 Four days post-op. Can hardly see the battery pack.

Two weeks post-op. The scab turned a funny color, but never became an issue.

Five weeks post-op. I am so happy with the placement.

Revision Scheduled!

Today I finally got the phone call I've been waiting for... my revision has been scheduled for March 10th! It's not my actual birthday, but it's very close, and I told my neurosurgeon's scheduler it was the best gift I could have gotten. She thought that was odd. I guess you have to go through it to understand what I mean.

The good: the date falls on the first weekend of my mom's two week spring break, so I will have someone to take care of me. Also, my neurosurgeon doesn't normally do surgeries on Saturdays, so I guess he's making an exception for me, which is super sweet. The bad: my Medtronics rep just so happens to be pregnant (with twins, congrats Chanie!) and her baby shower is the 10th, meaning I will have to have another rep for the surgery. This makes me very nervous. Last revision I had someone other than Chanie and it was a damn mess. Also, Chanie was supposed to help me convince my neurosurgeon I need the battery pack moved to my chest, and now I'm concerned that message won't be conveyed. I cannot imagine waking up from surgery with the battery pack still in my stomach.

I am relieved. I was getting antsy waiting. Now I just need to straighten out the Medtronics rep situation and request a hospital stay from the neurosurgeon's office. I'm not sure if they expect this surgery to be outpatient, but I will be staying at least one night. I imagine I will be in more pain than any of the other surgeries since it is basically my trial surgery, implantation and last revision all wrapped up in one. I'm actually looking forward to it because that pain is temporary, these headaches are never ending.

...and a wild ferret in the barbecue.

I went to my neurosurgeon today and got confirmation I need a second revision. It's actually for a different reason than I thought though...the lead in my forehead (supra-orbital area) has moved. It's most likely because the battery pack has tilted, which pulled all the wires tight. I did notice the sensations were different, but when it started cutting out I just turned it off for good, so I didn't consider that the lead might have moved. I'm going to try to get a copy of my x-rays to post so everyone can see exactly what I'm talking about.

My neurosurgeon wanted to put the battery in a mesh-type pouch and put it back in my stomach but I said no way, no how. That area just isn't working for me and I don't want to have to go through another revision before he realizes it too. I understand his point, there is a lot of movement in the chest area, but there are just too many wires running too many feet to make it worth keeping it in my stomach. I talked to my Medtronics rep alone and she agrees that it should absolutely be moved. And since they have to re-tunnel the lead anyways, why not change the location too? We're going to keep the same non-rechargeable battery though because apparently the size isn't too much different, and trying to charge the battery while it's in your chest is supposed to be a real pain.

I don't yet have a surgery date, or even a general idea of when it might happen. I think the worst part is waiting. I'm not getting any pain relief from the stimulator right now, which makes this all more difficult to deal with. But overall I'm actually doing alright. I would rather not have to go through it, but in the end it's worth it.

So I got home from my appointment today and found a wild ferret in my mom's barbecue. It made me laugh. Only in my life would I get news I'm going to have another brain surgery and then find a ferret. They are illegal in California, so we called animal control who came and picked it up. Little known ferret fact: they spray a foul smell much like skunks when they are scared.

Revision Déjà Vu

This post is hard for me to write. I have to have another revision. It seems my battery has moved again and a wire pulled out, same as last time. I noticed something was off about two weeks ago when it started hitting a nerve and sending tingling through my scalp, then I needed to turn my stimulator way up to get pain relief, and Tuesday it began shorting out depending on my position. I called my neurosurgeon's office Wednesday crying, asking for an appointment. They didn't have anything open until March 8th, so I then begged and they created an opening for me the 16th. I had to get in as soon as possible. I'm in so much pain right now and I can't imagine waiting a month for an appointment and then another month until surgery.

As soon as I got an appointment I started packing my stuff to make the trek to Sacramento. I had to drop out of my law class, postpone my agility training with Dakota, and stop my volunteer work with the public defender's office. All three of these things are equally important to me and it makes me angry I have to put my life on hold again. I am lucky my law class is offered again next semester, my amazing agility trainer is willing to work with Dakota and me when I get back to Reno so we can catch up, and the empathetic staff at the public defender's office recognized that I am dedicated to being there and asked me to come back once I am well again. Sometimes it's humiliating to share my illness with people I barely know because I don't want to look weak. However, I have gotten some great support without judgement which is appreciated.

I have not yet gotten confirmation that I need a revision from Dr. Boggan, but there is no doubt in my mind. My Medtronics rep knows too. I asked her if having this many revisions is normal and she says absolutely not. Having the battery in my stomach just isn't the right place for me and we're going to have to move it. I assume he'll move it to my chest area, which freaked me out back in May but now I just want it to work! I'm going to push for a rechargeable battery since they are smaller than the non-rechargeable and since it will be in my chest I don't want it totally obvious.

My greatest hope is that this is my last revision for a while and I can have it done before my birthday in March. I realize my healing time will be a bit longer than normal since I'll have two incisions that have to heal and because the wire needs to be re-tunneled, I'm going to be very sore. However, the stimulator gives me such great pain relief when it's working properly. Which is why I am willing to go under anesthesia for the fourth time in a year.

Please forgive me if I'm babbling and/or not making a ton of sense. I'm in a lot of pain and I'm so tired.

Am I the only one?

I suppose I've never talked about this before, but I'm wondering if it's normal to have shoulder pain after the stimulator surgery? I asked my neuro surgeon back in July and he said I should get into physical therapy to relearn how to hold my neck. Well, I did go to P.T. but I'm still having the pain. I'm positive it's because I always favor the left side of my neck where the wires run, which in turn puts a strain on my right shoulder. Some weeks are much worse than others, and right now it's driving me crazy. Tomorrow I'm going to buy a cervical collar to hold my neck straight. Fingers crossed I can find one that doesn't make me feel like I'm choking!

Other than that things are well. My stimulator is still chugging away. I was looking at my scar the other night and I think my battery is moving/rotating. It's hard to tell, but I imagine a revision will be in my future (hopefully not for a year or two). I know the battery moving wouldn't be such a big problem if I was skinnier, but I'm trying to tackle one issue at a time. It's funny because the idea of a revision used to really scare me. Now that I've been through it I realize it's just part of being on the cutting edge of medical technology and I am thankful for the pain free times.

A pain counselor I went to in December asked me how much pain I was in every day. I was sad to realize that I am still having headaches. The stimulator is working well, but a lot of the time it will take my pain from a 5-6 to a 1-2. That is a huge improvement. Shortly after my surgery I actually thought I was completely pain free, but I'm not. However, I can deal with a 1-2. I'm honestly not complaining, and the fact that I'm now in school (part time), doing dog agility with my dog (once a week for an hour), and volunteering at a law office (8 hours a week) is a testament to how far I have come with the help of my stimulator.

Pain killers are still a part of my life, but I have cut them in half and I'm stepping down slowly. Since I have been so busy lately my pain has been worse and it makes me worry that I will never really be able to live a life without some type of pain killer. My hope is that Tylenol will soon suffice. 

Hemicrania Continua

I found this article and it made me laugh. Humor is a great tool when trying to deal with any chronic illness, but at the heart of what James is saying is good information. If you are having chronic, unrelenting headaches and your doctors have not considered Hemicrania Continua I recommend you check this out. I do not suggest being on Indomethican for longer than a month though, but it's a great tool for diagnosing this condition. 

From http://headacheandmigrainenews.com/popular-ways-to-misdiagnose-hemicrania-continua/
You’ve always wanted to misdiagnose hemicrania continua, but you haven’t been sure how to do it?  You’re in luck!  A recent study is bringing to our attention some of the most popular ways to mistreat and misdiagnose this disease, so you can choose your favourite next time a patient comes into your waiting room.
All right – joking aside.  I know that doctors do not want to misdiagnose, but for some reason with this one it’s happening.  And there’s good reason.  When a patient comes into a doctor’s office with a one-sided headache, it’s natural to think it’s migraine.

So what is it?

But hemicrania (one-sided) continua (you know – doesn’t stop) is different.  You’ve guessed one reason – it tends to be more steady than migraine.  It doesn’t change sides, as migraine pain often does.  Also, it doesn’t come and go like a headache from migraine usually would.  It stays and doesn’t go away, though it can go from moderate to severe.
Like cluster or migraine, it can be accompanied by congestion, and watery eyes.  A shrinking pupil or drooping eyelid is also a common symptom when the pain increases, making it look like cluster.
But, once again, unlike cluster or migraine (usually) the pain is continuous.
And with hemicrania continua, there’s a silver bullet that almost always works:  indomethacin (indometacin).  Indomethacin is a non-steroidal anti-inflammatory drug (NSAID), sold under brand names such as Indocin, Indorchron E-R, and Indocin S-R.
So with such a good treatment readily available, you may imagine it’s important to get the diagnosis right.

Popular Misdiagnosis

The study in Italy on hemicrania continua, published in February, found that all the patients with hemicrania continua had been given an incorrect diagnosis.  Here were the most popular ones:

The reality sets in when we find out what kinds of treatment these patients received.  Remember, treatment with indomethacin would have almost certainly been effective. On average, the patients had tried 3-4 different classes of drugs, most of which were, of course, ineffective.  36% had undergone ineffective invasive treatments as well!
Hemicrania continua is usually listed as a rare condition.  But looking at studies like this, it makes you wonder if more people should be trying indomethacin early on in their treatment.  It has been argued before that, though not always obvious, hemicrania continua isn’t that rare after all.
If you have a headache that tends to be on one side, this is something you should be talking to your doctor about.  An indomethacin trial will rule out the possibility of hemicrania continua, or it might just be the answer.