MVD Diary - Rosemary Moore
Monday, April 28, 2008:I have seen my PCP and have all my pre-op tests except for the hearing and EMG, which are to be performed in Pittsburgh. It is great to really feel like I am on the road at last to my surgery and a spasm free way of life.
Friday, May 09, 2008:Got a horrible phone call from my insurance company's nurse assistant. According to her I am cleared for a six day stay at the hospital but not for surgery with Dr. Jannetta and not at Allegheny General Hospital. I leave tomorrow for Baltimore to visit relatives and then on to Pittsburgh, great timing. To put it mildly, I was upset. I called Customer Service as I had checked twice with them to be sure that surgery with Dr. Jannetta in Pittsburgh and AGH was in network. The Customer Service Representative assured me I was cleared and said she didn't know why the nurse would say otherwise. She also assured me that she was going to call her. I gave her the name and number of the nurse to see that she was properly informed for future reference. She then made a notation on my file that all was clear and if future persons had a question it would be answered immediately in the affirmative. Wow, was I relieved. I mean, I am leaving on the 10th for Baltimore to meet up with relatives and then to Pittsburgh on the 12th and surgery on the 15th, so I needed to hear this very expensive surgery was out of network like I needed a hole in the head, LOL.
Saturday, May 10, 2008:We got up at 4:00 AM to be at the airport by 7:00 for the 10:00 AM flight to Baltimore. It is supposed to rain and thunder all the way from Houston to Baltimore. Thankfully, we had no rain or thunderstorms but a really nice trip. We flew Continental and it was a very pleasant flight.
Allan's brother and sister were there to meet us and we had a great time reconnecting. It has been several years since we have seen each other so it was a great reunion.
Lynn, Allan's brother, and his wife Mary, have a new house (new to us) and it is really beautiful and sits on a hill with a nice Spring breeze. They are building a chicken house and expect chickens any day now. They are excited and we are happy for them
Sunday, May 11, 2008:As a surprise, my sister-in-law has planned a gathering of friends and relatives for us to meet and greet. For some of us it has been a really long time and for others we have met for the first time after hearing about each other for years. What fun and what great food.
Monday, May 12, 2008 - Day of Departure/Arrival8:30 AM we leave for Pittsburgh at last! I am excited and really, really scared. My big concern is the type of sutures they will use. I had a conversation recently with my brother concerning our sister and her open-heart surgery a few year ago and how she died within months from a massive infection in her chest cavity. Seems she was allergic to "cat-gut" sutures that slowly dissolve, and so am I. I made sure my PCP knew about it and that he made sure Dr. Jannetta knew. I was pretty sure they would not be using them, but I wanted to make sure Dr. Jannetta was aware of this problem. With proper antibiotics the sutures will do their job but precautions must be made and since I would not be able to see any signs of infection I really did not want to take any chances.
Even with Mapquest we managed to get lost twice before we found our motel. We finally connected and it was real nice to settle down. I contacted my friend Laura to let her know we had arrived and we were both excited. She offered to take us to the doctor's office the next day and it turned out to be a great decision. Overnight, Allan came down with a stomach flu and he was very ill. We weren't sure if we were going to have to hospitalize him or not. Laura picked me up at 9:00 a.m. and Allan stayed in bed all day.
We went to Dr. Jannetta's office and I couldn't have been more pleased or more relieved. It seems he has the same allergy and assured me these sutures would not be used and as a precaution, an antibiotic would be administered prior to surgery and continued until release and longer if needed. I asked questions, thanks to all of you, and to all who answered my questions. Laura even asked and he was very nice and helped to allay her fears as well. She had visited the website so she had an idea of what to expect but she felt like we had definitely made the right choice after talking to Dr. Jannetta as well.
From Dr. Jannetta's office we went down for the EMG. That was an experience I wouldn't want to repeat. No doubt about facial spasms there! Those tests really sent me off into full spasms and they lasted all during the day and evening. There was some pain to experience but nothing intolerable. While I would not want to have to repeat these tests, if it were needed for a second operation I at least know what to expect and it would be okay. They said I had definite nerved damage near the ear and facial muscles and were not sure how the operation would affect my hearing. They seemed to feel that the damage was due to the Botox A injections I had received and my reaction to the injections. I had two sets of injections and the second set left my facial muscles fallen and paralyzed in that position. Even after the injections wore off, in about four months, I still had very tight mouth with a lopsided smile. It was a full 11 months since my last injections so I was full of hope for the surgery.
The next set of tests was the hearing tests and I was prepared for less than satisfactory results there. I had a full set of hearing tests about a year and a half ago and knew that I had a 35% hearing loss in my left ear and a 25% hearing loss in my right due to damage from Meniere's Disease and probably age.Well, all tests were done and we returned to the motel. Fortunately when we arrived Allan was much better due to rest and no food. We got fluids in him and a few bites of food, but he felt better for the fluids and rest more than anything else. Thank God for friends and family.
Wednesday, May 14, 2008 - The Day Before:We have a free day! I showed Allan how to get to and from the hospital so we would not get lost. We wandered around Pittsburgh and for most of the day, and talked to family and friends during the evening. We decided we needed to be together that evening and it was really special. I guess Allan was as scared as I was but until now he had not really given in to it. At dinner he reached across the table and took my hands and said the sweetest thing. He said, " I have the snapshot I carry of you of you coming out of March Cullmore Hall (my dorm) and I just couldn't believe this beautiful person was going to be mine. I just couldn't thank God enough for sending you to me!". How sweet is that? I squeezed his hand and told him it was going to be alright. God brought us together and God would see us through this. I'm not letting you go so easy after 43 years of marriage. We have a lot of years left and we're gonna live them together the way we were meant to! God truly did know what he was doing when he brought us together.
Thursday, May 15, 2008 - "MVD DAY":Through some communication error we were told to be at the 11th floor for pre-op between 6:00 and 7:00 a.m. and as it turned out we didn't need to be there until 9:30 a.m. It made for a long day for both of us but it was still worth it when all was said and done. Marlene and I kept missing each other and didn't meet up until sometime around (10:00 p.m. We shared a room and when I arrived Marlene was already up and moving around but I was not so lucky. This was Marlene's 2nd MVD and my 1st.. I woke up to find my hearing was lost in my left ear and it might or might not return but they truly did not believe it would return. I also had lost my sense of balance, they think due to the hearing loss, but felt it would return with time. My vision was also compromised and we weren't sure if that was also due to the hearing loss or moving the nerves around had caused some stress. Both Drs. Jannetta and Sekula assured me they felt the balance and eyesight problems would resolve with time. I sure hope so. I have had some pretty severe balance problems with the Meniere's disease but they resolved with Meclazine and usually within six weeks, so maybe this will as well
Friday, May 16, 2008 - Day 1 Post-Op:Marlene was released today and I will miss her. She has great spirit and was a great encouragement after the surgery.
Saturday, May 17, 2008 - Day 2 Post-Op:Dr. Sekula was in today and says I can leave the hospital . They gave me a patch for my eye and I am to alternate the patch from one eye to the other each day. He is sure I will regain my balance and my vision problems will also resolve . I am encouraged to be leaving even with balance problems and double vision. We go back to the motel and I am weak and need lots of rest. I spend Saturday and Sunday resting and relaxing and talking to friends and family. It is really good and my friend Laura has come for a visit on Sunday so we really have a chance to catch up.
Monday, May 19, 2008 - Day 4 Post-Op:At 2:00 PM. I have my visit with Dr. Jannetta and this is the first time he and Allan have actually visited. He says he is sorry about my hearing loss and does not think it will return, but hopes at this time as I keep hearing static and snaps like the synapses are trying to connect but he says not to get my hopes up. If it does return, wonderful, but if not it just wasn't meant to be. He felt bad and apologized for it, but I don't blame him as we both knew it could happen with the damage from the Meniere's Disease and my 62 years of age, it was not unexpected. The funny thing about a "deaf ear" is just that. I can control the volume by just turning my deaf ear. I can sleep on my right side and no sound exists, so sleep is peaceful.
Dr. Jannetta's nurse had noticed that I also suffer from sleep apnea and he asked if I would be willing to participate in a separate study to do MVD on nerves that he found can cure high blood pressure, which I don't have, and sleep apnea. I had no problem with participating in the study as I have participated in and conducted several clinic studies so it was a great opportunity to give back to the community if possible. I have to have another sleep study performed in a year to see if the MVD on these nerves worked, but I can tell already that they did. I sleep more soundly now and so don't need the CPAP machine at all. No snoring and even my breathing is easier since the surgery! How great is that?
Dr. Jannetta has released me to go home the next day but I feel very tired and weak.
Tuesday, May 20, 2008 - Day 5 Post-Op:We got lost three times from Pittsburgh to Boonsboro, MD. How I did it I don't know, but we did a bang up job of it just the same. I arrived in Boonsboro really tired and weak from that five-hour drive. My brother-in-law met us in the driveway and informed us I was not leaving the next day for Texas but could go home the following week and I was too weak and too tired to argue. He and my husband exchanged a few words as we had flight reservations for the next day and didn't want to mess things up but I really didn't care at the time as I really wanted to just go to bed and forget it all. I slept straight through the night and didn't wake up until 8:30 the next morning. I don't think I moved at all!
While I slept they contacted the airlines and made arrangements for the following Tuesday for us and I was relieved and somewhat disappointed. I needed the down time but I really wanted to be home in my own bed with my own things around me. My sister-in-law is an absolute angel, no doubt about it, but home would really have been great.
Sunday, May 25, 2008 - Day 10 Post -Op:We have joined relatives at the waterfront property on the Potomac River dividing Maryland and West Virginia. It is really beautiful and warm here. The is the first day since I have been here that I haven't needed my sweater or sweatshirt? The weather is sunny and in the low eighties and WARM. I can't believe it is almost as warm as when I left Texas. I have been so cold and yes I am cold natured but southeast Texas 60's and 70's is not hot and neither is 80 for that matter. Still it is nice and I am really enjoying the sun and the warm. Little did I know I would leave Baltimore in the 70's and return to Houston to 97 degrees! Talk about shock! Still it was a welcome shock. Oddly enough the weather guys were predicting rain and thunderstorms for our return trip and like out trip over it was smooth as silk. Those guys just can't catch a break can they?
Had to have a wheelchair getting around the airport at both ends of the flight but it was well managed and things went well. Our youngest son had intended to meet us at the airport but surprised us with a limo service instead. We arrive home in style, in a Lincoln Continental Town Car! He really enjoyed that and so did we.
Again, most of my day was rest and relaxation and love from my son and my baby dogs! Matthew just kept hugging me and kissing me and trying to catch his breath. He said he'd never been so scared in his life (this from a Desert Storm Vet) to learn that Mom couldn't hear or see right and he couldn't be there for her. Have I got great guys or what? With such great guys in my life what is to complain about?
Wednesday, May 28, 2008 - Days 13 Post-Op:I volunteer at our community public library so I actually did my two hours today and hope to work a few more hours later this week. It was great even if I could only sit at the desk and smile!
Thursday, May 29, 2008 - 2 Weeks Post-Op:I have an appointment with my neurologist today so I will give you an update later to let you know how it went. For now still off balance and still wobbly eyed but life if good.
Went to see my neurologist today and wasn't real happy with the news. Dr. Jannetta had intimated the inner ear balance, problems focusing would last a few days or a few weeks. a few days is 2 or 3 and a few weeks is 2 or 3, not 36 months!
According to my neurologist the hearing loss was to be expected and it has caused my inner ear imbalance . Which he says will probably take several months to resolve but feels it will resolve. I am currently taking 1 MG of Clonazapam daily and up to 3 mg. as needed. Dr. Busby, my neurologist, now has me taking 1 at night and 1/2 of one each morning in an attempt to quiet the nerves in the right ear to allow the brain to bridge the gap and let the right ear take over the balance situation. I have to patch one eye one day and the other the next in an attempt to bring them back into alignment. At three months post-op if they have not reached alignment he is referring me to an ophthalmologist specializing in strabizmis, crossed eyes, to see special eye glasses with prisms or to see if surgery is necessary to rectify the problem. If this does not happen the it looks like surgery on at least my right eye to correct the strbizmus if not both eyes and still the possibility of prisms in prescription lenses. I don't blame Dr. Jannetta for this condition but I do feel let down that he down played the seriousness and longevity of the situation. I live in a rural waterfront community which means usually driving 20-25 miles one way for any thing. For now I am totally dependent on friends and family to take me every where for the next six months or more. I can't read, knit, sew or quilt, all major parts of my life and just typing this journal has been a nightmare.
I knew about the hearing loss possibility, has anyone else suffered the inner ear balance or double vision? If so please let me hear from you and your experiences.
Oh, have I mentioned that I'm "SPASM FREE"
Thursday, June 12, 2008 - 1 Month Post-Op:My spasms are gone, thank God! I've lost my hearing in my left ear and with it my sense of balance and my eyes are crossed, supposedly all problems will resolve with time except the hearing which is gone forever. I feel good but the balance and vision thing are a nuisance. I'm at least 50% up to par with strength and stamina and to date I haven't lost my sense of humor so I'm doing pretty darn good. Thank you for the birthday greetings and wish for an update. Regardless of my current problems I would still have had the surgery. We don't know why the hearing went but it did and I was told it was a possibility. They say the balance problem is probably due to the brain having to adjust to right side hearing and feeling only and will resolve. The vision is probably caused due to stress on the sixth cranial nerve and again should resolve with time, if not I go to an ophthalmologist for an operation to realign the lateral rectus muscles to realign my eyes and then I'm good as new(worst case scenario). Don't let it scare you if you are considering the surgery. I read scary notices and almost didn't have the surgery, but am glad I didn't listen and did have the surgery. The surgery accomplished two important things, may be three: 1- no more spasms, yea!; 2- side affects give you strength and humility;3-you appreciate more the gifts God has given us these many years.
Thursday, January 16, 2009 - 8 Months Post-Op:I still have balance and vision problems. My hearing has not returned and I am told it will not. I have been referred to an ophthalmologist that specializes in strabizmus, crossed eyes, and have new eye glasses with #7 prisms in each lens. The new glasses work great and allow me to see "normal" except they have cut my distance vision severely, which is still pretty good compared to most people's vision. I guess it is my Cherokee blood that has given me such phenomenal distance vision so any difference would be noticable to me. I am told it is still possible that my vision might return to its' former state but unlikely at this time. I was told that the prisms work for about 60% of the patients and the remaining patients opt for muscle resection surgery to correct the problem. According to my neurologist I need to give it another six months in hopes that the balance will return to a more normal place but that my balance and vision will NEVER be normal again. Not the news I wanted to hear. My balance has improved somewhat but I am still grabbing for walls and furniture in attempt to keep from falling. I have fallen a few times but thankfully never a hard fall.
Since I had little cooperation from Dr. janneta's office in receiving my post-op MRI results I had to go to the expense of repeating the MRI. Apparently my hearing loss was either unexplainable or due to damage or great stress during the manipulation of the nerves during surgery. Most probably stress to the nerves and I am still in a wait and see pattern on balance and vision issues. My neurologist wanted the results in order to rule out a possible stroke and it seems I did not have any damage due to stroke. The good news is that in comparing this MRI to the MRI performed prior to my surgery they found a 7 mm meningioma in the right occipital area that is currenty benign. So, while Dr. Jannetta's office was uncooperative, it seems Dr. Jannetta's office did me a huge favor in not forwarding my MRI pictures or the MRI results causing me to have to repeat the MRI and finding this meningioma. Finding it this early we can keep an eye on it and can operate before it has an opportunity to grow too large or too fast or convert to a malignant state. I feel Dr. Jannetta's office glossed over my complications, these were never mentioned, and gave false hopes that I would be back to normal in two or three weeks, but after re-reading other MVD diaries it seems most were told to wait anywhere from six to eighteen months so I guess I will continue to wait. Most of the time I can walk fairly straight, not like a drunken person, and I don't usually fall or lose my balance unless I am startled. On the whole things are pretty good I guess. At least I continue to have no spasms!