Anyway, I tried a bit of Botox hated it and vowed never to do it again. Could be the practitioner was not well practiced, who am I to say, but for me. the effects were worse than the symptoms. Then lots ofchiropractic, cranial sacral therapy, massage, meditation, acupuncture, positive imagery and any thing I could find in the arsenal of alternative medicine. Nothing could touch this thing.
As I learned more I began to feel more and more blessed that HFS is a very structural problem—like a toothache or a knee injury—that had an effective surgical fix, and not a disease process that could take down the whole system. I think when I made this mental shift it was the beginning of getting ready for the surgery itself. It was a perspective shift and looking back it was the breakthrough for me.
The next thing was that I had to talk to people about it - tell them what was going on -- and how I was going to fix it. I became more and more “transparent” with the condition and I believe that was a self-supporting mechanism that worked for me.
By the time April 20 rolled around my spasms were 24/7. Whenever I would smile my right eyelid would slam shut. Close-up work on a computer or chopping vegetables would bring on spasms. Driving got just plain difficult and exhausting.
What was most troublesome was leading my seminars. These are experiential learning programs that require deep sharing and an honest nature. Not only was my vanity affronted (!), but also each day was a giant struggle with how well my presentation was getting done.
The constancy of it was getting to be a bit much. Like I said, I began sharing my experience with my groups and found very quickly that they were not only supportive but DEMANDING that I get the problem taken care of (this was in January 2009 — I remember the Toronto group very well!). It was good for them, as students of Professional Coaching, to be able to take that stand for me—and it was good news for me in that it got me off the dime, to face my fears, and to get it done.
Permission granted the HFSA to post MVD Diary on website.
Craig Carr, November 02, 2009Back to top HFSA HOME
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February / March 2009 - Finding the right Neurosurgeon:
Reading the HFSA postings over time gave me a good idea of what was out there in terms of surgeons. At first I considered traveling anywhere necessary to get this done right. This is MY BRAIN, after all! And I really was not too impressed with what I was seeing with results in Florida. So I looked around and looked around and there were complications popping up everywhere, no matter what the surgeon’s experience, it seemed to me. And yes, the fellows in Pittsburgh were getting mostly great reviews, but so were lots of others. The day came, though, where it really became clear to me that I didn’t want to travel very far for this. Then, right at that time, a member posted about her experience with a Dr. Siviero Agazzi at Tampa General Hospital. I was intrigued so I e-mailed her, she raved about the man; so I booked an appointment. . Armed with my list of HFSA questions and my MRI, I met with Dr Agazzi at the end of February, and he spent all the time I wanted with him… lots. . We looked over the MRI. He spoke of his experience very openly; how he sees more TN than HFS for sure; but skull base is his specialty. He is a calm and friendly man, which I appreciated, with not a whiff of arrogance, which I appreciate even more. He obviously is an over-achiever, and that’s A-OK in a doctor as far as I’m concerned—probably just under-40 I would say—and he also shared with me that he is completing an MBA. By the time we were done I also knew his birthday was April 6 and he was getting married on May 16, 2009! . An important question came at the end of our consultation. “There’s a lot you could have chosen”, I said, “what do you love about doing skull base neurosurgery?” His answer was a good one and multi-layered. It involved things like helping to set people right, teaching young doctors, working precisely with his hands, and making a difference to those who were dealing with really severe issues. He was surprised, but he took my question in stride and seemed generally pleased to be have been asked. . It may be just me but at a certain point a decision like this is about character as much as it is about training. He had plenty of training I knew, and although there are plenty of doctors who have done more MVD’s, I found myself willing to trust a young man still building his career and reputation, very focused and clear on who he is and what he is about, and believing that he had just as much chance of giving me the best result possible as anyone else. The rest of readying myself would be about building up inner trust in my choice and a belief in a positive outcome--because I was “in”, and he was my man.
Monday, April 20, 2009 – "MVD DAY":
Tampa General actually could have taken me on theApril 6, but my granddaughter and her parents were able to come to Florida and Disney World on her birthday. Who would want to miss that? That was a no-brainer and the impending surgery helped me relish every moment of their visit more profoundly than ever before. And by the time the 20th came around, I was more than ready. The surgery was scheduled for 7:30 a.m. and we arrived about 5:30 for pre-op prep. I want to say at this point that my wife, Jil, was with me and she has been like a saint. I am a lucky man, and in some ways I was more concerned that the surgery wouldn’t work and the HFS could continue to degrade our relationship. This thing has been tough on her, too, and for a while I know I haven’t been all I’ve wanted to be for her. I was just too distracted by my own suffering. Dr. Agazzi came through to see me in the prep room. Most of what I recall of our conversation was me telling him to “take good care of my hearing”. He nodded and smiled. This, by the way, was something Ann Riggs gave me the idea to do. It felt like I was at least doing something before I gave up TOTAL control! The last thing I remember is the Attending Nurse Anesthetist, Laura, coming in to prep me. She had a warm and brilliant smile. She said, “Oh, you’re with Dr. Agazzi today. Good choice”. Those words were so timely and reassuring. I felt a wave of joy (and I don’t think it was the drugs….or maybe it was?). After that I don’t remember a thing. Next I began to come to some state of awareness, I see the red neon digital clock on the opposite wall: 2:20:23pm. I become aware there are NO SPASMS on my face on the right side! (OH MY GOD!) and what is that MASSIVE HEADACHE? And OOOh that stiffness and soreness HURTS!... then, oh, they are getting me situated on this bed. Go ahead and do anything you want to me. I don’t care as long as I stay SPASM FREE! I stay in ICU for the rest of the day and get lots of care. There’s not too much I can tell you except from here on out I get the understanding that it’s all about getting my organs and muscles back under control from the anesthesia. Lots of clearing, rebuilding and strengthening to do. Again, with the spasms gone I feel like I can do anything.
Tuesday, April 21, 2009 – Day 1 Post-Op - ICU:
I was in ICU until 6pm. Brought here after the surgery I was put on IV, had a CT in the middle of the night, and was watched very carefully. The night nurse was absolutely fabulous, I wish I could remember her name. She tended to my comfort and was very kind, an Angel. I must say I have a new regard and respect for people who do this work day in and day out. What a blessing they are. I was hurting a lot and couldn’t move much, but PT/OT came through and made me get out of bed and move around, take a walk, get active. One thing I did for myself was start taking homeopathic Arnica 30C in water whenever thirsty. This remedy for shock, trauma, bruising and bone healing came recommended by a master homeopath who said it is used to great benefit, post–surgically, all over Europe. I figured it certainly couldn’t hurt. You can get Arnica 30 pellets at any store like Whole Foods anywhere in the USA. I was moved out of ICU to another floor and put in a semi-private room with a poor soul who appeared to be in big trouble. At one point, in his agitation, he managed to throw himself out of bed! Ouch. There were lots of disturbance and activity in that room so I asked for, and got, the nurse in charge to get me moved. She found a private room on the women’s side of the floor for me. They made jokes about that but I had to tell them no party for me tonight, girls. Again, I felt I was being well tended to. I was actually able to sleep fairly well this second night in my private room. One comment on food: I mostly only nibbled because there wasn’t very much brought to me that I wanted to eat. Jil brought me some melon and papaya from the health food store, some nice smoothies with protein mixed in, and I ate a few Lara bars, as well. I didn’t go hungry and I didn’t eat everything put in front of me. I guess I was blessed that nausea wasn’t a huge problem for me, either---I’m not sure why.
Wednesday, April 22, 2009 – Day 2 Post-Op - Going Home:
Discharge was 11 a.m. and that’s pretty close to when we left the hospital. Jil thought I hadn’t been making myself get up and move around enough (she was right—I was using the urinal instead of the toilet!), so she made me walk a bit before getting in the car for the two hour ride home. I was feeling weak and sore, but markedly enough better than Day 1 to feel ready to get the heck out of there. They gave me a Percocet on the way out the door and I slept at least two thirds of the way back to Cape Coral. I was more than happy about that. I actually didn’t get to go home. That is another long story regarding the discovery just 10 days ago, that our new home had been built with Chinese Drywall. Suffice to say I didn’t want to go back to a toxic environment in a weakened immune condition. That whole, ridiculous problem was just gonna have to wait, but some good friends of ours offered up a lovely, ground level condo for us to use during the recovery. Physically, I was pretty achy and went right to bed. I drank as much as I could, kept up the Arnica, and resolved to set small goals and find things each day that felt better.
Days 3-7 Post-Op - Getting Everything in Motion Again:
And that is pretty much how the week played out. On my third night post op I had to get up and urinate SIX times. I figured that was my kidneys detoxing and kicking back into gear. Somewhere on the fourth day I had a rather pathetic, but at least a bowel movement that happened! On day five it was better and now is regular. My voice has remained raspy and I still have a weak cough, indicating a Lung deficiency. The intubation had an impact on the vocal chords, and the low energy and shallow breathing is still an effect of the anesthesia. My head gets better every day…moments of pain but not enough to get me to want to do a Percocet. I just go lie down and try to get some sleep. As I mentioned, my recovery is seeming to be 90% about processing the gases from the anesthesia and getting my organs up and running optimally again. I belched on Day 7 that Jil said, “smelt like a sewer!” I agreed and said be glad you didn’t taste it! I followed on by insisting it tasted like chemical gases, was a good thing and probably wouldn’t happen again! Gross, I know, but there’s no use holding anything back from you, dear reader, right? ? Finally, a word or two about my face: After all, that is what this whole thing is about. The highlight is there has not been one single spasm since that moment in the ICU when I woke up. It is WONDERFUL to be falling asleep and not have spasms, to wake up without spasms, to watch TV without spasms, to work on this computer/TV without spasms. I do notice some occasional fluttering of my right eyelid. And to a disconcerting extent, some occasional fluttering of the left. I had noticed that increasing a bit a few weeks before the surgery but it was so remote compared to the right I couldn’t really get a handle on it. It’s more like graininess under the lid, not really at all like the way HFS started on the right. It does appear my right eye is more “open” than the left…like the left lid droops a bit and is slower to rise in a blink. I don’t know what all this means but I’m content to compartmentalize it with “healing and recovery process”, and wait it out. Meantime, I’m mulling over letting Jack know in a few days that I’m ready to declare myself SPASM FREE!
Days 8-11 Post-Op - Declaring I’m 75% “back”:
This recovery is going very well. I want to report one more thing from last week that I think has made a big difference. I mentioned we were staying at a friend’s empty condo, but not that they run an alternative medicine clinic. One thing they do is give away “Kangan Water” which is pure water with an 8.5 (alkaline) pH balance and ionized to score very high in anti-oxidant levels. I didn’t know this, but I had been drinking it exclusively since I got here. You can learn more about this stuff with Google if you’re interested, but suffice to say that the ionization to 8.5 makes the water a powerful anti-oxidant. Most of what we consume, especially across America, creates an acid pH balance in the body and it is well recognized that over time this is one of the major stressors on long-term health. Two other things I am conscientiously doing is adding organic, mint flavored Chlorophyll drops to 8oz of the water twice a day, and taking probiotic enzymes morning and night. In terms of the water, I think it’s one of those things where the healthier you are the less you notice it. But I have been noting such marked improvement each day that I’m willing to “blame” it on the Kangan Water I’m drinking.- I have experienced very little headache, rather mostly muscle pain in my neck associated with the incision and being inactive. This I have treated with an Arnica ointment.
- I have taken no pain medication since that Percocet for the ride back from the hospital.
- My balance is 90-95% back after 10 days. These three days I have gone on significant walks with the dog (I’d say one-quarter to one-half mile).
- My appetite is fully back on track. I have not consumed any alcohol or highly-dosed sugar products, and the thought of them is a turn off. I am trusting my cravings. The other day I HAD to have pasta. Another time I wanted RED MEAT! AAAARGH--MUST HAVE, which is pretty uncommon for me.
Day 12-15 - Post–Op Visit, Staples Come Out, Moving On:
Progress has continued quite nicely over the last few days as I’ve become acclimated back to my house, my bed and my surroundings. Despite the Chinese drywall situation and the fact that we may have to give up the house, it’s good to be home. I’m refusing to submit to the anxiety and/or stress the house situation presents and let the attorney’s deal with it, one day at a time. Yesterday Jil drove me up to Tampa for the staple removal ceremony. We drove 2 hours to get there on time and then had to wait 90 minutes to get in to see the doctor. I was a bit irritated by that as on other visits I was in within 15 minutes. I don’t know why they can’t tell you these things when you get there and say, “we’re running behind this morning because (blah, blah, blah, whatever) so feel free to go to lunch or for a walk and be back here in XXX minutes”. Not letting the customers in on the situation and having us go wait like lumps on a log in a waiting room is archaic business practice and well, rude. Anyway, when we got in they were all very friendly and Dr. Agazzi was great, as usual. My healing was looking terrific, he said, and the facial weakness (as we’ve heard many times from HFSA members,) is just going to take some time as the nerve continues to heal from direct manipulation. He cautioned against doing any heavy lifting for the next couple months (so when we move I’ll need to find lots of help!), but that was pretty much it. I go back for a 6-month follow up that will include a CT, just to be sure there is no swelling or anything post-op they don’t like to see. I’m OK with that. What can I say: no hearing loss, no taste disturbance, my balance is back to normal, and SPASM FREE! I wish this outcome for every MVD! And so for now that brings me to the end of this MVD journal. I hope it has been useful and informative for any current or future member who finds it. I also welcome any comments directly to me about anything I may have mentioned in this journal.Permission granted the HFSA to post MVD Diary on website.
Craig Carr, November 02, 2009