I found out on Thursday, July 17, that Dr. Barker would agree to do surgery on the right side – the 2nd side of my bilateral HFS – on July 23. Not much lead time! He did the left (first) side in December, and I have been very pleased with the results, even though I had a CSF leak that put me back in the hospital for 4 days at Christmas. I also had delayed facial palsy (DFP) that started just before Christmas; Six months post op, I have some tightness and tingling, but no persistent visible flutters, twitches or spasms. I consider myself spasm-free on the left. (See my HFS Personal History and MVD Diary #1).

The right side, however, has been in full face tonus spasms since the end of March. The right side twitches and flutters started in July of 2007, about the time I started having full face tonus spasms on the left. In late September, 2007 I began to have definite spasms around my right eye, and by the time I signed my operative permit for the left in December, I had occasional right eye spasms strong enough to cause my eye to close – almost always while driving, and Dr. Barker never saw them. When I signed my op permit, I told him to take very good care of my hearing, and that, if the right side got worse, I could come back next year and we could do this all again!

After the left MVD, the spasms on the right dropped off considerably for about two months, but were still there – when I was doing exercises for the facial palsy, for example, the “open and close your eyes as tight as you can” exercise would start a spasm on the right. Dr. Barker reminded me again at my post-op visit in February that bilateral HFS was very rare; I told him that, since unilateral HFS was already rare, statistical arguments were not very persuasive any more. At the end of the visit, he did say that, if the spasms on the right got worse, he would no doubt still be around. I don’t think he expected to see me again so soon!

March 2008:

I tried to downplay the right side spasms – I was making them up, or exaggerating them, or they would eventually go away. After all, they were not very frequent, even if they were getting stronger, and marching down my face! I knew once they got to full face spasms, the denial would have to end. This happened in late March; I notified Dr. Barker’s office, sent Mili some pictures, but got no response. (Love Dr. Barker, not very happy with the office sometimes.)

 

May 2008:

By the end of April, the spasms were getting more frequent, and I knew I had to call again. I was very firm about why I was calling this time: the right side spasms were very strong and getting more frequent, and I wanted to talk to Dr. Barker about fixing the right side as well as he had the left. I got an appointment for Thursday, May 15; on May 14, Mili called to change the appointment to Thursday, May 22.

[That next weekend, Senator Edward Kennedy went to Mass General with seizures and was diagnosed with a brain tumor. Brain tumors are Dr. Barker’s major area of research, and I had this self-centered dread that Dr. Barker would have to operate Sen. Kennedy on the Thursday of my appointment, and I would have it postponed again! Not to worry; the Senator was being seen by one of the other neurosurgeons, although Mili and I, of course, thought that Dr. Barker should have been the one!]

I showed up in his office in full face tonus and said simply, the right got worse. His reply was equally simple: well, it’s very rare, but it happens. His concern was with the hearing on the left. It had been stressed during the left MVD, and because of that would not talk about even the possibility of surgery until I after had a hearing test. For my part, I had known about the stress, but had had no experience of any kind of hearing loss. I had tried to check for problems on the left, had not had any trouble hearing at all, etc. – “It doesn’t matter,” he kept saying.

I re-read my material on intra-operative monitoring (IOM), and learned that the stress I had during surgery – a 1 millisecond delay in wave v of the brainstem auditory evoked potentials (BAEP) during the decompression part of the surgery – was a critical warning value for irreversible hearing loss. I could easily have a significant (20 decibels or so) loss on the left that I would not have noticed with two ears, but would have made the left ear inadequate as the “good” ear, if I should lose hearing with surgery on the right.

 

June 2008:

About two days before my scheduled hearing tests, I realized that the rest of my life depended on these tests. I would either be cleared for surgery, or I would have to cope with spasms for the rest of my life. I dreaded Botox, the way some HFS patients dread surgery. A normal face was what I wanted, and a Botox face was not normal. It could be stiff, or droopy, or asymmetrical, or whatever; above all, it signified for me the loss of hope. I do have this reflex coping mechanism, however; a little voice that insists, well, if you HAD to do Botox, how would you go about it? I read some favorable comments about Botox and had the names of a couple practitioners in my area; if I didn’t feel better, I at least felt prepared to deal with disappointment.

I also found several online, free hearing tests. I passed them all. Going into the audiology department of Mass Eye and Ear Infirmary, I was cautiously optimistic. I was also VERY nervous during the audiogram; the audiologist had to redo several tones for both of us to be sure of my response. The summary report was that my bilateral hearing was “stable” – I had adequate hearing in both ears, with age-related changes that were to be expected. I was happy and relieved.

I also had auditory evoked potentials, a test version of the BAEPs they do for IOM. The test is like an EEG on the auditory nerve and is used to assess the hearing of infants and nonresponsive people; I have no idea why they ordered one on me, perhaps to run their own observations on IOM and hearing outcomes. I had electrodes dangling from my ears, tied to the hair on the top of my head, and stuck to the back of my neck. The audiologist took my picture and said that my nerves worked fine. I was again very happy.

 

July 2008:

I saw Dr. Barker again on July 17 and, after what seemed like months of waiting, I had to hurry up to be ready for surgery on July 23. He agreed I had decent hearing in both ears, and was willing to proceed.

 

Monday, July 21, 2008:

I had an anointing service with friends at the College and treated myself to a manicure and pedicure. Even though you are not supposed to wear nail polish into surgery, I thought I might sneak by with a clear top coat (and I did). My “be good to me before surgery” part of surgical prep was done.

 

Tuesday, July 22, 2008 - The Day Before:

I went in to Mass General for pre-op EKG, labs, nursing interviews, and chest x-ray. Somewhere along the way I discovered that I was scheduled for a “Microvascular decompression of trigeminal nerve – facial nerve.” Mili had written “Trigeminal Neuralgia” as the diagnosis for my chest x-ray! So I had to run around and get that straightened out.

Meanwhile, I had one nursing interview with a “cluck, cluck, tsk, tsk” mother hen of a nurse. She said, “Oh", [as in, you poor thing!] every time I had a spasm – exactly what I do NOT like! As we went through my health practices, she just rubbed me the wrong way; I finally said, “Look, I’m basically a normal healthy person with a scrunchy face!’ “Oh, don’t SAY that!” she replied, and I thought, they’re MY spasms, if I want to make light of them, I’m allowed. Not saying “scrunchy face” won’t make them go away – and you're the one making the big deal out of them, anyway, with your “poor thing” reaction to each and every one of them.

 

Wednesday, July 23, 2008 – "MVD-Day":

Kathy picked me up at 4:00 a.m. and we arrive so early, the elevators don’t even go up to the same day surgery admission area. We get trapped in a lower lobby, wandering around for minutes before making our way back to the main hospital entrance. I was one of the first to arrive, one of the first taken back to the prep area. I changed to operative ensemble, said hello and goodbye to Kathy, and was transported to the induction area. People would either say, You’re an unusual lady,” because this was an MVD on the other side, or “How are your pain and your spasms?” I got rather cross about it; “I do NOT have pain, I do NOT have trigeminal neuralgia!” But I was putting on a glorious show of HFS, with spasms so tight I could hardly talk. The resident arrived – different from the one I had in December – Dr. Barker was running late but would be there for every cut; I was given some oral meds, rolled into the OR and promptly fell asleep.

I don’t even remember when I woke up, or where I was; I have a vague memory of being transported to Neuro. ICU. I was pretty miserable this time, not the sense of a “Dr. Barker, I love you!” high that I had the first time. But I was told immediately that my face was SPASM FREE and my hearing was fine, which was quite a relief. The surgical resident came again, the Critical Care Fellow came by (“How are your pain and your spasms?” “I do NOT have trigeminal neuralgia!”), and I settled in to a night of morphine and repositioning. I barely touched the clear liquid supper, but the ice chips and later, ginger ale, felt so good in my cotton mouth. Kathy stayed for a few hours and then went home. She reported that Dr. Barker talked to her on the phone, said that they found “the usual artery” and that my face and hearing were fine.

 

Thursday, July 24, 2008 – The Day After:

I got out of bed in ICU for the first time and promptly had a small emesis, my one and only bout of nausea. Needless to say, breakfast did not hold much appeal for me. However, I had no dizziness and had no problem walking to the bathroom a few hours after my catheter was removed. IV fluids, oxygen administration, and arterial lines were being discontinued, and soon I was on my way to the regular neuro. unit.

Lunch was the best meal yet, and soon I was up in the bathroom to wash up a bit and change to my own pajamas. The pain pills were more than adequate for my pain – the frontal headache was mostly gone, and the discomfort I had was from the surgical site. A physical therapist came by to check for balance and other functions, and I passed with flying colors. Other than needing an IV restart for the last bit of antibiotic, I had a very nice day.

Dr. Barker came in late that evening, and it was so very good to see him. He told me that they found two small arteries, and went ahead and padded a third that seemed to be in a precarious position. My hearing apparently had no stress this time – one of the meds they gave me orally before surgery was an anti-vasospasmodic, thought to decrease vasospasm to the hearing nerve during surgery. I don’t remember getting it before the left MVD, but he thought I probably had.

 

Friday, July 25, 2008 – 2 Days Post-Op:

An occupational therapist came to see me and review post-op activity restrictions and arrangements for help, after which I was discharged. Kathy took me home, went to visit her mother in the nursing home, and returned with pizza.

 

Monday, July 28, 2008 – 5 Days Post-Op:

After a weekend of so much “help,” it is good to have a day alone! I have been to church, out for breakfast, to the grocery, a local shop (twice) and a movie.

I tried changing from Percocet to Tylenol, but the headache got worse again. I am also going through the "water in the ear" discomfort, as the normal healing processes do their thing in the operative area. Today I am mostly lying around, running outdated financial papers through a shredder, a low-energy task I had saved for the post-op period. Walking out to the mailboxes felt so good, I kept walking and did a familiar route that is just short of a mile. It felt good to be active, and equally good to be just lying around. I watch Law & Order reruns, follow the Brett Favre retirement soap opera, and spend time on the computer. I enjoy being alone on a quiet day.

Mostly, I enjoy having my SPASM FREE face back.

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For details of my HFS experience leading up to my MVD's see my Bell's Palsy Experience.

For details of my HFS experience leading up to my MVD's see my Personal HFS History.

For details of my prior MVD, see my MVD #1 Diary.

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Permission granted the HFSA to post MVD Diary on website.
Ann Riggs, July 28, 2008

 

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