To Operate or Not To Operate...

That is the question. Our meeting with Dr. Weingart at Johns Hopkins went very well. He is very personable and very tall. Not that that has anything to do with our meeting, but man was he tall. I’m six foot two and I had to look up at him, which is generally not good for my neck. Anyway, he spent an hour with us. Can you believe it? A whole hour! Being that I am a member of an HMO, or is it a PPO, I am used to only having about five minutes with a doctor. Then I’m handed a prescription for some drug or another and being shoed out the door with the words, “Take two and don’t call me” ringing in my ears. In that hour we went over every aspect of the Chiari Malformation and the surgery. He answered all our questions; reviewed my MRIs with us, described the surgery, risks and recovery period in good detail. His current surgical technique is to remove only enough bone from the skull and the top disk or two of the spine to decompress the area. After the bone is removed and before he cuts into the dura mater he conducts an ultrasound of the area. This is done to determine if sufficient decompression has been acheived through bone removal. If there’s enough space the dura mater does not have to be cut and a dural graft will not be necessary. With or without the dural graft he then attaches a piece of titanium to the back of the skull at the enlarged opening. This gives the muscle and tissue something to grab onto and prevents scaring from re-compressing the area. The incision is closed with staples, which makes it look like you have a big zipper on the back of the head and then it’s recovery time. This is where post-op Chiari patients get the nickname, “zipper-heads.” The recovery period has shortened from what used to be 2-3 months to 4-6 weeks (in most cases) with the first three days post-up being the most painful, or as he described it, “being in crazy pain.” He then conducted a neurological exam that I passed easily. This is very good as it shows I have not developed any of the neurological symptoms. About this, I am very happy. The biggest part of our discussion concerned my current “quality of life.” Truthfully my ACM has not really stopped me from living my life and doing the things I want to do. Oh there are days – sometimes a few in a row – that are killer and may keep me home and make me a challenge to be around, but mostly I am able to live my life and work and play as I want. I have more good days than bad so the bottom line is I have decided not to have the surgery at the current time (and there was much rejoicing). We talked about charting my daily pain levels in a graphical form so that I can look for trends and be able to determine accurately if my symptoms are stable, improving or getting worse. Should they worsen I can always revisit the surgery option. We also discussed exploring various pain and stress reducing treatment options more thoroughly. At Dr. Weingart's suggestion I am also going to visit neurologist Dr. Fleishman (sp?) in Baltimore, whom Dr. Weingart believes, may be of help to me. All in all a very good consultation and Jenne and I are very happy and confident that I made the right decision at the present time. I must also tell you that I had a very positive experience exploring one of those pain & stress reducing options last night at Jenne's urging. I had a full body massage. I can hear some Chiarians gasping in fright right now and yelling, “MASSAGE! Are you crazy! Your neck, they can’t massage your neck! The pressure!” Relax, I didn’t go to a chiropractor, I went to a nationally certified massage therapist Kathy Mahaney (no website), whom Jenne knows through work where Kathy is contracted to do seated massage for the employees (talk about a perk). Before the massage we discussed in detail my ACM and what could and could not be done. Kathy was very understanding of my condition and worked around the area very gently and cautiously communicating with me the whole time. Fifteen minutes into the massage it hit me, I was actually pain free. PAIN FREE! For the first time in a long time there was no mild pain, no level one or level two pain. I actually achieved level ZERO and I have been pain free since and that’s now twenty-seven straight hours! I’ll definately be getting a massage from Kathy on a regular basis. Umm massage ahhh.

ACM pain levels: BIG FAT GOOSE EGG! Joy!