MVD Diary - Wendy Birnbaum
For a short description of prior symptoms refer to my Personal HFS History.
Mid December 2007:
Pre-Consultation testing and normal MRI
December 31, 2007 - Neurologist appointment:
HFS diagnosed and was advised of the option for Botox. I tried Botox to see if the results would be good before deciding on MVD surgery. Since the Botox didn't do what I wanted, I opted for the MVD route 10 days later. Next came the process of researching and choosing a neurosurgeon. Spoke to many Doctors and ended up feeling most confident with Dr. John Alksne.
January 14, 2008 - Initial MVD Consultation with Dr. Alksne:
Met with Dr. Alksne and spoke about the MVD procedure. He was ready to do it by the end of February 2008, even though I just had Botox 6 weeks prior, as long as his neurophysiologist could get a good ephaptic response. Due to prior vacation plans, we opted on waiting until mid-March 2008.
Monday, March 3, 2008 - 2nd MVD Consultation with Dr. Alksne:
Second meeting with Dr. Alksne just for me to question some of what I’d read on Hemifacial Spasm Association (HFSA) website. He allayed my fears and as long as my EMG the next day was ok, we were both ready for the Operating Room!
Tuesday, March 4, 2008:
Met with Donna, Dr. Alksne’s Nurse Practitioner. She took a VERY thorough history and explained again what to expect during and after the MVD. Donna had a very warm personality and again, I felt like I was in the right place! Next she walked us to the lab where the EKG and blood draw were done. From there on to all the pre-op paper signing, which was great because it was something I’d rather not do when I’m about to go into the Operating Room. Next, Anesthesiology came in and spent about 45 minites with me doing assessments and medical history, again explaining to me what to expect the next week. This all took about 3 hours. We just had time to grab some lunch before heading off to the most important EMG, to make sure the response could be found to enable the surgery. This was not painful because electrodes on skin were used (no needles). Response was found and I was told SURGERY IS A GO! WHEW! The same Doctor that did this neuro testing said she would try to be the one doing it during surgery. During surgery they use needles in the skin which give better readings, but I would be asleep before they were placed. Also had hearing check in her office which showed a minimal decrease of one frequency, no big deal. Drove home totally elated and calling friends and family to tell them just how excited and comfortable I was. They must have thought I was crazy. I did not have a terrible case of HFS, just very annoying, but I felt that if I can fix it now and have to continue to deal with it, then it’s worth a try!
Wednesday, March 12, 2008 – "MVD-Day":
5:00am wake up, shower, took my AM medications along with Xanax, so was quite relaxed on the way to the hospital. Smooth check in, practically nothing to do but wait. Saw Dr. Alksne and made sure he had a good night’s rest last night, which he assured me he did!. IV started, more calming medications pushed IV at my request, and off to the Operating Room. GOOD NIGHT! Was in surgery 3 ½ hours. I was told that a very large vessel was found and padded off. EPHAPTIC RESPONSE WAS STILL THERE! More searching and Dr. Alksne found a tiny vessel much deeper near the brainstem, so he padded that and the ephaptic response was gone! Thank goodness for "Intraoperative Monitoring"! Don’t remember recovery or even going to my room, a private “step down” room where telemetry monitored as well as an arterial line, vitals every 2 hrs, urinary catheter in place, morphine pushed 2 or 3 times from end of surgery throughout the nite. My husband slept in a chair in my room but I remember nothing although I did ask for icepack for the incision site, which seemed to help. I had a headache, but no vertigo, the hearing seemed fine, no vomiting, just sleepy.
Thursday, March 13, 2008 – 1 Day Post-Op:
I felt queasy from Morphine so switched to Percocet and had one or 2 doses. Still having only fluids. Catheter was pulled so I'm up to the bathroom. Although I felt very weak, I did ok. Ate had some scrambled eggs and coffee but then vomited about 1 hour later. I was told by the next nurse never to take Percocet on an empty stomach. Even a few graham crackers could have helped. At that point, I switched to Tylenol. I had chills on and off and a temperature of 99 which no one was concerned about. Physical Therapy aide came by to take me for a walk. No dizziness, no instability but thighs felt sooo weak. Once around the floor of the wing and did ok. Was told my smile was normal and my eye, which would sometimes close half way when drinking from a straw, was looking great. I felt "NO TWITCHES" but I was still out of it, spacey and tired. Went for a few more walks later that day and used incentive spirometer because one reason for the temperature could be atelectasis in the lungs. The spirometer made me lightheaded and headachy when I used it. My main problem was swallowing food as the ET tube in anesthesia caused some throat swelling which has happened to me before. So it's a puree diet for now. I was also on Decadron, 1st by IV then by mouth and will be on tapering doses for next 10 days. Slept well that night.
Friday, March 14, 2008 – 2 Days Post-Op:
Slight ache at the incision site. The Physician Assistant came in to remove dressing, a turban type gauze and cotton wrapping over my whole head. The incision was not closed with staples on the outside, a type of “plastic scab” material (skin glue) was used which will fall off in a couple of weeks. I headed straight for the shower to wash my hair. Was upset they had no hair dryer for me to style it! Next time I must remember to bring my own LOL!! Still have a slight temperature, only taking Tylenol. Up and walking but tons of naps. Groggy, spacey, sore throat remains, but doing well. 1:00pm that afternoon, big surprise, walking down the corridor with my husband and see Dr. Alksne and my nurse walking toward us. After the doctor asked how I was feeling, he told me there are several cases coming out of the Operating Room with no beds. He said we could absolutely stay but he had no reservations about discharging me if I wanted to go. So, away I went, home on post-op day #2 which I thought was amazing. I slept well that night but was uncomfortable trying to keep my head elevated on pillows as I have a bad neck.
Monday, March 17, 2008 - 5 Days Post-Op:
Feeling fatigued, weak and sleepy. Mostly moved from table to bed to couch to chair. Took a shower, rested then went with hubby to the grocery store, pet store and drug store. Rested then tried to go out for a walk with my husband, but it started pouring. So, back to our building, walked a flight of stairs, across a long hallway to another set of stairs up and over 6 times. Did very well. Still foggy but utterly amazed. I did this for my lungs and because I had very bad muscular aches, like when you get the flu, in the back of my thighs. Actually needed Percocet that day for leg muscle myalgias. Those aches started the night before. That night I slept on an inverted Murphy bed to keep my head elevated without having to scrunch my neck up on pillows. I Learned that trick when being treated for severe GERD. Felt much better that way.
Tuesday March 18, 2008 – 6 Days Post-Op:
OK, still feeling OUT OF IT…foggy, etc. Trouble with sore throat and swallowing, but everything else is ok. Big day, went to Costco with husband, then off to the grocery store. Came home, rested, then took 30 minute walk with the dogs. Leg aches are still there but a bit better. Had a good night again on the inverted Murphy bed.
Tuesday, March 25, 2008 – 13 Days Post-Op:
Twitches are now gone. My eye, which would partially shut when chewing or smiling hard or drinking through straw or pursing lips now stays OPEN!!! MIRACULOUS! Steroids tapered way down, will be done in a few days.Have slight weakness on ex-HFS side, smile a bit uneven but not terrible. I'm doing facial exercises in front of a mirror. Dr. Alksne said this is probably residual Botox and some swelling still remaining, but he believes it will resolve with time.
My energy level a bit better each day. I took a 45 minute walk yesterday, no vertigo. Driving but not yet on high speed freeways. Swallowing problem due to throat swelling from anesthesia passed after 1 week and the leg pain resolved a few days ago. Spacey foggy feeling gone.
2 1/2 Weeks Post-Op:
Extremely tired, MVD side headache started, sometimes severe, sometimes felt like sinus headache. Chills, lethargy and extreme “fog headed feeling”. Felt like the flu but without symptoms! No fever, no signs of infection. Spoke with the doctor after 4 days of this, he wasn’t sure what to make of it. He will call back in a few days to see how I’m doing.
3 1/2 Weeks Post-Op:
Headache and chills gone, energy better and no more “spacey foggy feeling!!! Wonder what that was all about! Smile remains crooked, with weakness on the left side including the eye area. "NO SPASMS" but did have eye twitch once or twice which scared me so much. Continuing with facial muscle exercises. Incision healed, have “pulling” sensation there at times, sometimes apply Vitamin E oil to site.
4 Weeks Post-Op:
Left sided facial weakness possibly improving slightly . Left eye seems to blink and close a little bit better also. I'm not back to my normal exercise routine of lap swimming and weight lifting as I was told to hold off 6 weeks on weights. I'm also afraid I will ”undo” something. But I am walking 2-3 miles every other day without tiring.I have not regretted having this surgery for one second. I would do it again in a heartbeat and, may have to in the future. My right eye started twitching and I hear the same “noises” now in my right ear when squeezing my right eye shut. This is exactly how left side started many years ago. These symptoms started one month before I had my MVD surgery.
My thanks to Jack and everyone on this site. Because I had read so much, I was able to handle some of my post surgical symptoms without panic as I knew they were to be expected.