Day 15: Giving Thanks (cough-cough)

It was one hell of a week, but we persevered. IEB came home from the hospital Wednesday night after being diagnosed and treated for type 1 diabetes. She’s doing great. Unfortunately, her parents both have the cough that has plagued Graham, in the wake of his flu. Who says you can’t have it all?

At this point, the surgery really is pretty much in the past. The wounds continue to heal; my hair has grown in enough that I don’t need to wear a bandana. The incision sites aren’t so swollen anymore, although I’m a little curious as to how I’m going to get along with this unit in my chest. Seems like it’s placed right up by my left collarbone, with the extension running over the top of the bone. With my body-fat ratio well under 10 percent, you can see the edges very clearly. I’m still cautious in the gym. I don’t want to put unnecessary pressure on the wound — I wouldn’t want that IPG to come popping out of there!

I am looking forward to Thursday and the initial programming.

Diabetes Update

Our daughter is out of pediatric intensive care, off the IV drips, and rehydrated. Hopefully she got a good night’s sleep, because we’ve got a lot to learn today and tomorrow, before coming home from the hospital. This still seems unbelievable, surreal.

DBS Journal: Deep Brain Stimulation Surgery, A First-Person Account

I recently had surgery to address symptoms related to Parkinson’s disease. This article is a relatively brief overview of my experience. (The two large photos are courtesy of Dr. Irene Osborne, the lead anesthesiologist and official shutterbug.)

Thursday, Nov. 12, 2009

Suzanne received the call from Mt Sinai admissions around noon, and was told we could show up as late as 3 or 4 that afternoon. My brother Tom, Sally (family friend), Suzanne (my indomitable wife) and I had a good lunch at Corner bakery, and then moseyed over to the hospital after 4 p.m. Intake was swift and uneventful, notable for the GPS location device on my bracelet (unique to the neurology floors, to find wandering patients). By dinnertime, I was set up in room 109B, a semi-private room with a spectacular view of Central Park. Continue reading

Day 7: Catheter and staples removed

Ah, the things that bring ecstasy! I got the catheter removed today — a huge pain gone from between the legs! Seems like things are actually better than before down there. Think rotor-rooter.

Stopped by to visit Dr. Boyd, who squeezed me in to give the 3 incision sites a once-over. Not only were they healing quite nicely, but they were ready to have the staples removed. You’d think that would be easy, but they don’t have a surgical staple remover in Neuro. After a very brief delay, the staples were out, I was cleared for quick showers and light exercise, which means no bench pressing, chest work or chest stretching — not that I need any of that. Looking forward to Dec. 3.

Day 6: The article is coming

Range of motion in head and neck improving. First draft of the surgery article, and photos, coming together nicely. Tomorrow I hope to get the tube removed, and to get a first look at the cuts under those bandages. It’s the little things in life that matter so much!

DBS Journal: Transparency

A good, old friend (Ken B) included this comment in a note just ahead of my surgery:

The more I think about it, the more I really appreciate that you sent out that e-mail this morning.  In my (not-so-humble) opinion, too many people keep too many secrets about illness.  Something about perceived weakness, or “being a bother”. Do you remember the Caring Bridge website that kept me in touch with everyone when I was in Seattle?  I loved that.  I think that people should learn more about these things so they know how to deal with it when they, or a person close to them, has to live it.

Ken has been through two bone marrow transplants for aplastic anemia, traveling cross-sountry to Washington state. His body had stopped making new blood cells. To suppress his immune system, the doctors put Ken on heavy-duty levels of catabolic steroids, including Prednisone. So he knows that of which we speak.

I couldn’t agree more — it’s exactly why I created this web site, and why I’ve been so candid about my condition over the past dozen or so years. I’ve met a few people with Parkinson’s who did not handle themselves or their conditions well, and the misery was pretty obvious to bystanders, if not to the caregivers who had to deal with it.

I can’t hide it; people are curious. What is there to lose by not being open about it?

DBS Journal: Rest, Recuperate, Reflect

I received Irene’s photographs of the surgery via e-mail this morning, and that led me to think about just how graphic the account of the surgery ought to be. I’m going to go graphic, because I think you want to know details. Knowing these details helps to imagine the scene, safely inhabit it and develop coping strategies.

I don’t to scare anyone off: I am an advocate for the procedure. The benefits definitely exceed the costs. You’ll know that to be true in the moment during the surgery when they enervate the target. You’ll know that the programming will work, that your tremor is going to totally stop, even that internal tremor that’s so hard to describe. And you will cry.

I would have made more progress on the essay detailing the DBS procedure itself, but I learned an important lesson: writing and Percosets don’t go well together. It took that as a sign that other things weren’t working as well, so I took the day off, just like I’m supposed to.

Today’s pain report:

Percosets do work well for pain. And that is starting to diminish. The chest site, where the IPG resides, is getting less sore by the hour. I’m quickly regaining full range of motion in my left arm. I’ve figured out that the sore forehead and rear suboccipital areas correspond to the four points where the halo (stereotactic head frame) was screwed into my skull. The forehead pain is nearly gone, and I can only hope that the neck pain that was so intense this morning will soon start to go away, too.

The most persistent pain today is just above the left ear, where the extension takes a little dogleg. It’s at this point that I can feel the extension along much of its length, as I turn my head to the right in a range-of-motion test. It’s not that I’m doing this over and over to deliberately injure myself (although I have to admire the doctor’s craftsmanship in hiding the wire —  this is the only way I can feel where it runs along my neck on its way to the IPG). I’m kind of glad that the wire tugs at that point and not at the burr hole. At that site, the itching feeling is starting to increase. That’s a good sign!

DBS Journal: Going Home

The ride home was thankfully uneventful, with little traffic north of New Haven and sunny skies. To other DBS patients, I’d say I could have gone home the day after discharge, if it wasn’t for the complication.

That complication will keep me grounded for most of the week. I’ll explain tomorrow. In the meantime, thanks again for all the kind words.