Wednesday, April 18, 2012

Doctors visit #8487202

Well, at least that's what it feels like! Yesterday's visit to the spine center was...a disappointment. There was confusion or something and the nurse that made the appointment for us from our doctor's office did not send hubby's medical records to the spine center. We have a copy of the MRI CD, so they at least got to look at that. But nothing else. Based on that, their options were limited as to what could be done yesterday.

The doctor said he does not believe the lipoma is the cause of the meralgia paresthetica (MP, the tingling, burning, stinging pain in hubby's outer thighs from hip to knee). He wants to get another MRI, ruling out anything higher up in the spine that could be causing it. He said if he were us he'd not do the spinal cord stimulator, because if the lipoma isn't causing the pain the stimulator won't help. Not have any sort of back surgery actually sounds like a relief. We called the neurologist we saw last month back about a nerve block injections. But the only problem is those generally involve steroids, and because of the lipoma he has to avoid steroid medications.

We've found a couple of case studies from here in the States and an information page from a health authority in the UK (I tend to like their research into painful conditions more after my struggles with symphysis pubis dysfunction while pregnant) that suggests pulsed radiofrequency can provide significant relief for some people. It is not invasive, no scary side effects like drugs, and can result in long term relief. It is definitely something we will be asking about with our chiropractor and doctors. Hubby has also called about getting a referral for physical therapy. In cases that have gone on as long as his and as severe, it isn't likely to relieve symptoms, but there's always that chance. Before PT can start, he's found some recommended stretches online and is doing those and starting to walk as well. Being in better shape can only be a good thing.

I'm also trying to get him to realize he has limitations right now. While this pain is there he needs to doing things in moderation. If he is doing his exercises each day, pick one other thing to do. Maybe it's cleaning something or mowing the lawn or playing outside with the kids. But just do that one thing and stop. Which is not him. Before this started a normal day involved mowing the yard then playing with the kids and a bike ride after dinner. He was active. Trying to re-train that mindset is, I think, almost as hard for him as living in constant pain!

So right now it is just working on getting records to the new doctor, working on finding a physical therapy place, exploring the radiofrequency option, and finding a new pace for daily life. Nothing is a solution or an answer, but I feel like he has a new level of peace with how things are going. A renewed desire to take care of himself and take his health back into his own hands. And whether or not that helps resolve the pain from the MP, it can only be a good thing.

Monday, April 2, 2012

Doctors and Disappointments...

A very hard doctor's visit today. We finally got a doctor to admit that the spinal lipoma is what is causing the pain. But instead of removing the lipoma, he said in no uncertain terms he wants to keep slapping bandaids over it and just trying to cover up the pain. First by trying a spinal cord stimulator. Adding MORE stimulation that would currently be required to control the pain because as the lipoma continues to grow it will cause pain in more areas. And if that doesn't work, or doesn't completely work, cognitive behavioral therapy to teach him to ignore the pain. Why is it such an issue to treat the cause, not just the try to cover up the pain? Isn't that what medicine is supposed to be about? Healing and treating abnormalities, not just making it to where we forget they are there or learn to deal with a subpar life?

In addition to the difficulty of hearing this, the doctor was very patriarchal to me. At one point, I was sure he was going to tell Kelton to learn to keep his wife quiet. Kelton has had very little sleep the past couple of weeks. During the day he is sluggish and in a fog. New parents know what I'm talking about, that fog of sleeplessness that has you running a few paces behind where you normally are. Because of my interests in medical stuff, working in a pharmacy, and helping care for my Ga-Ga and Pa, I am really good with remembering both medication names AND chronological details of illnesses. So when Kelton couldn't remember something today, I would answer for him. This has NEVER been an issue with any doctor, ever. Today I was told I needed to "stay quiet". I had actually gathered my things to leave until Kelton asked me to stay. It was very hard to honor his request at that point, but I did. He told the doctor I remembered these things better than him and that's why I was helping answer, because he may miss details or mess them up because the pain makes it hard to remember everything. At this point the doctor asked if he's been evaluated for mental retardation. I found this completely offensive. Not because there is anything wrong with someone who has some form of mental retardation, but because he was obviously tired. It honestly blew me away, and there will be a letter written to the medical board about how we were both treated today.

Our next step is the NE spine center. We are hoping that if we have enough consultations with enough surgeons, one will agree to remove the lipoma. Every medical study, every research paper we find say that in his case, removal is the way to go. Even scarier for me is that they all say that when symptoms caused by a spinal lipoma are as severe as Kelton's are, that delaying in removal can cause permanent damage. I can appreciate not jumping the gun into a surgery, but this is ridiculous. I'm wishing that spinal lipomas fell into the category of obstetrical surgeries, as OBs seem to be the most scalpel happy bunch around! And I find myself wishing that my surgeon I saw for my wrist were still in the country.

In addition to doctor's we are taking matters into our own hands. I have a friend who is studying herbal medicine right now. We are getting some tinctures and liniments from her to try, and I just placed and order for a pound of dried chickweed to use in a tea form. Chickweed is known to break of lipomas. My fear is that the topical stuff won't work as well as they do on other lipomas since this one is within the spinal column, but we're willing to try! I'd love to start the herbs, find his pain gone and have an MRI done that shows the lipoma is gone. It may not be a very Christian thing to do, but I think I'd have to send a letter to every doctor who said it couldn't be this lipoma causing the pain saying "NEENER NEENER!" ;) Childish, yes. Likely to be ignored? Definitely. But boy would it make me FEEL good!