History follows:
Disclaimer: The information presented below is my own personal account. Names of physicians are included in the event there is someone either in or who joins the support group in this area who may desire to consult with any of these physicians. The information below is not intended as medical advice. I personally believe there are no 2 people with exactly the same symptoms, concerns, desires. Therefore, the information is strictly from my own personal experience. Some may find things helpful while other things do not pertain to a particular situation.
If you have been diagnosed with HFS, I encourage you to read the profiles and diaries that are included in this web site. Additionally, I encourage you to contact other members personally. Though the profiles and diaries are very beneficial, my own experience has shown that the exchange of information on a more personal level is what really allows us to learn the “guts” of this condition. If you have not yet been diagnosed with HFS and suspect that you have it, please consult your physician. There are physicians who are not familiar with this condition. If this turns out to be your case, consider obtaining a consultation with another physician. This support group is a wonderful means of obtaining names of physicians around the world and you never know, there might just be someone in your area that has experience with this condition. Although I stated I would not give medical advice, I do urge you not to jump to conclusions about having HFS if you have not received a specific diagnosis. There are other conditions which can cause some of the same symptoms and each person needs to obtain a definitive diagnosis before assuming medication, Botox, surgery or doing nothing is the best option. Before making the big decision about having surgery, keep in mind that just as the symptoms of HFS can vary from person to person, so can personal preferences regarding a neurosurgeon. Dr. Jannetta developed the MVD and has treated thousands of people spanning decades. This does not mean that if you go to someone else you will have poor results. However, each person should research any and all physicians thoroughly before making a decision. One surgeon was highly recommended by his peers and stated that he has been doing Microvascular Decompression surgery for many years and it was the type of surgery that he specialized in. However, upon further query, he stated he had done about 6 for HFS and about 30 for Trigeminal Neuralgia. Because I only desire to have one MVD in my lifetime, even though he may specialist in this procedure, I wanted someone with more experience to ensure the best long-term results. If you are in a situation where a surgeon has performed a small amount of MVD's for HFS, I cannot stress enough how important it is to ask specific questions, to determine the long-term results. For me personally, Dr. Jannetta had the best available data to support my desire for optimum treatment. There are indeed very good surgeons available and many in the support group have had success having their MVD done by someone with less experience. Again, this is my personal opinion. I cannot instruct you to select or deny a particular physician - you must make that decision yourself. I welcome and appreciate personal emails to me at dfrederick65@msn.com. If there is something I cannot answer or respond to, I will try my best to direct you to the appropriate person or resource.Suggested tools for the trip:
Being one who is organized, I realized as soon as I located the HFSA that there was far more information than I could remember! The initial information was actually very overwhelming. Over several weeks, as I began to obtain information, I knew one of the most important, if not the single most important thing, was to be organized and prepared for anything! I’d like to offer the following as I have found them extremely useful. 1. Notebook: If you do not have one, I urge you to get one. It can be expensive or just a simple 3-ring binder from Staples, which around here costs about a buck. I prefer using plastic document protectors as well but this is up to your personal preference. My notebook includes a variety of information - letters, office notes from appointments, test reports, insurance letters, email, anything else you may want to include for easy reference in the future. 2. Email Folder: I found that receiving countless emails related to the condition was something I‘d never be able to remember. Because of the volume of those emails, I knew that it was not necessary to print everything. So, I created a separate folder to store those messages in. This may sound silly but I cannot begin to count the times I have gone to that folder looking for anything from an email address, doctor’s name, or a personal note in which someone offered a suggestion for me. 3. Email Group: If your experience has been like mine, people will give you a look sometimes and you know that you both know there is something that needs to be asked or responded to, but neither of you will bring it up. I created an email group (I think this can be done with most email programs) and decided I would allow email to be my source of sharing information with family and friends. We use MSN which allows only 50 email addresses in one group but you could create as few or as many as you desire. My group is comprised of family and friends and it is an extremely efficient method of sharing something with those you do not want to leave out. Prior to using the group, I could not recall who I said what to and, if you have a lot of email, going back through your “sent” folder is just too time consuming. Fortunately, for those of us in the HFSA, sending one email will reach many, even hundreds. Unfortunately, unless we can remember the dozens or hundreds of other people in our email address book to email individually, prepare a message, address it to the group(s) you created and you can reach many people with a very simple mouse click! 4. Email Itself: Whenever you have a new bit of information, put email to work for you in sharing that information or even requesting information. Don’t assume that just because your friend from across town likes to go to movies with you that he or she will want to know everything. Ask first. I sent an initial email explaining the condition, the web site, and mentioned if they would like to receive updates to let me know. Of my own list, I cannot think of anyone who turned me down. More addresses can be added, which I have done several times as word got out others. 5. Email physicians: I utilized my insurance handbook which included all the neurosurgeons (as it does with other specialists) and when I decided surgery was an option, I did an Internet search (I believe I used google.com) for every name. Of those I located an email address for, I sent a note with a brief summary of my condition and asked specific questions - such as how many MVD's has that person done, how many specifically for HFS, etc. Because most physicians, especially specialists, are extremely busy, I highly recommend if you do receive a personal email reply from them to print them. One surgeon informed me he did not have time to respond to email. Though it seemed blunt, he did answer my questions and I made sure I had a physical copy. It never hurts to have this in the event that a hard drive may crash. After two such events, I never assume that what I save on our computer will be there tomorrow!! It was also helpful in adding these emails to my notebook and I have referred to them a lot! 6 Type a list of questions prior to appointments: As soon as I located the HFSA, I knew there were far more questions than I would have thought of without this wonderful association. I typed a list of basic questions to use with initial appointments and have expanded that list considerably over the last several months. All questions you have will not be necessary for every visit. For example, if you know where a doctor trained before a visit, asking this during the visit is not necessary. 7. Maximize your office visits: Prior to all of the surgical consultations, I sent a letter that included a brief history of my condition and what I expected from that appointment. For example, in the fall of 2002, my insurance plan (Care Choices of Southeast Michigan) recommended I consult with an in-plan physician before attempting to go out of network to consult with Dr. Jannetta. They recommended a surgeon and prior to my visit I prepared a letter. In it, I included the brief history I mentioned and let her know that I wanted her assessment of my condition and expressed my desire to consult with Dr. Jannetta. Obviously the information can be adapted for whomever you may wish to consult in the event it is not with Dr. Jannetta. Take your notebook and questions with you to all appointments, even if you think you won’t need it! In one day, I consulted with a neurosurgeon in the morning and an ENT Surgeon that afternoon (they work together in the OR). They were in separate offices about 20 minutes apart. Both needed my MRI films, which I had. When I arrived for the ENT appointment at the end of the day, the nurse came in and said there was no MRI report with the films. I don’t know what happened to it between visits, but thanks to my notebook, I was able to provide my copy for a copy to be made in a matter of seconds. 8. Request information: Prior to or at the time of your visit(s) you will be required to fill out various forms. They usually have a space for listing those whom you feel would need a copy of that visit’s dictation. Include yourself in this list! Having my personal dictation from appointments has been very useful, from something as simple as the spelling of a physician’s name to noting their opinion of your scans, tests or general history. This information will prove very valuable in the event of an insurance meeting (you can read more about that in my insurance section further below). 8. A word of etiquette: Never forget to say thank you! We’ve all been around people who feel that doctors or surgeons owe them something. When they get that visit, prescription or whatever they are demanding they often fail to say “thank you”. Be sure to thank the doctor for his or her time. They worked hard to get where they are and just because their skills or numbers are not good enough to suit you, they still deserve to know their information has been appreciated. And you never know...the person you think may not be your best choice to treat this condition could very well be the best to treat some other problem that may require his or her expertise in the future.Finally, the updated profile itself. The information below is comprised of portions of a letter I used in November 2002.
Though I do not recall exactly when the spasms began, a slight twitch around the right eye was noticed in the fall of 1999 (age at onset, 37). Initially I believed it to be related to a new food I was eating so avoided the food (peach salsa) and the twitching stopped temporarily. When it appeared again within a few days of stopping the salsa, I tried avoiding other foods, still thinking it could be a food allergy. The twitching continued. Avoiding caffeine had no effect. I do not smoke, consume alcohol, or use any type of recreational drug. The slight twitch developed into spasms without pain extending from the eye to the cheek and mouth. Although sporadic until the spring of 2001, spasms were becoming more noticeable to others and I was beginning to become self-conscious. During a routine physical examination in 2001 I discussed the condition with my primary care physician, Dr. John Gosling. He suspected stress or food as a cause, suggested continued observation, and offered a referral to neurology if I felt it necessary. Due to the absence of pain or other symptoms, I did not feel an immediate neurological evaluation was necessary. While visiting a family member who is a nurse in June of 2001, she noticed the spasms and suggested a visit with neurology to rule out something more serious than “just a twitch”. At the time, I was hesitant to initiate discussion about it with others because I did not want to do anything that might draw more attention to my twitching face. Upon my return home I scheduled an appointment with Dr. Gosling to obtain a referral. We discussed that since I was due for a routine yearly exam with my ENT MD, Dr. Laurence Ho, it might be beneficial to obtain Dr. Ho’s assessment of the spasms before consulting a specialist. By this time the duration was increasing and my face had spasms almost constantly during waking hours. I often felt (and still feel) a “pulling” sensation in the right ear as well as increased anxiety due to trying to anticipate which facial movement will trigger another spasm. Dr. Ho suspected some involvement with the facial nerve so ordered an MRI, which was done in July of 2001. Upon completion of the MRI (which was normal), I received a referral to Dr. Anastasios Alexiou of Ann Arbor Neurology who immediately diagnosed HFS. He explained three methods of treatment - medication, Botox and surgery. He stated Botox is the preferred treatment, medication is usually ineffective and surgery usually a last option. We decided on a trial of Klonopin, and it was ineffective as he predicted. At a return visit he referred me to Dr. Jon Wardner of Physical Medication and Rehab for initiation of Botox therapy. Dr. Wardner stated Botox should be administered no sooner than every 3 months or the body would build up an immunity to it. The first Botox injection was September 12, 2002 and Dr. Wardner informed me there may be temporary drooping of the facial muscles. He also explained the goal of injections would be to “fine tune” them so that I could get maximum relief. This would be accomplished by trying to locate all the affected muscles over the course of future appointments/injections. If the injections stopped the spasms in those areas, at some point in the future he would inject multiple muscles in one single visit and I might be spasm free for 6-7 months, possibly longer. After many months of right-sided spasms, the promise of this treatment offered much hope. The spasms initially decreased; however, there was pronounced facial drooping which started about 72 hours after the injections. The drooping was startling to myself and friends feared I had a stroke. I was as self conscious about the drooping as much as the spasms themselves. As the drooping increased, a call to Dr. Wardner’s office informed me that the drooping was temporary and could last “about a couple of weeks”. At the time of a follow up visit with Dr. Alexiou in December of 2002, the entire right side of my face continued to droop though was slowly beginning to improve. Even with some resolution, I was disturbed by the drooping as it did not fit the “couple of weeks” or “temporary” as I envisioned it. Subsequent injections in January, April and August of 2002 brought more drooping and incomplete resolution of spasms. During the course of the last 4 Botox appointments I pinpointed areas where I could feel spasms yet it appears to me all the muscles were not injected or Botox was ineffective. I feel this because a few days after initial injections the drooping began and there was incomplete resolution of spasms around the eye and cheek. Since that initial injection, there have always been other areas that continued to spasm, even after what seems to be adequate time for Botox to take effect. My last appointment with Dr. Wardner was August 28, 2002, and at that visit I again pinpointed spasm locations. Dr. Wardner avoided the eye and mouth area to aid in resolution of the drooping and injected three areas on the face. The only affect of those injections is inability to raise the right side of my nose. The spasms of the eye, mouth and chin persist. Though Botox therapy has advantages, after 4 appointments I began to wonder if this method of treatment would ever provide long term relief. Considering I am 40 years old and have no other major health concerns, I also wondered if continuing injections every 3-4 months for possibly the rest of my life would ultimately be the best option for this condition. Additionally, I became concerned about possible long-term side effects of Botox. It was at this time I began searching the Internet for additional information. Just prior to a follow up visit with Dr. Alexiou in September 2002, I discovered the HFSA’s web site and discussed my findings with Dr. Alexiou. Dr. Alexiou supported my desire to investigate the surgery and encouraged me to seek your opinion. Although his dictation states the spasm is “of moderate severity”, to me it feels severe. Perhaps this is because it is worse than in the past and at the same time can’t imagine it getting any worse. As I discussed your expertise and MVD procedure with Dr. Alexiou, he offered complete support for my obtaining an out of plan insurance referral to consult with you. He sent a copy of his dictation to Dr. Gosling, who requested such a referral. Our insurance provider, Care Choices, required I seek an opinion from a specialist within the plan prior to an attempt at going out of the plan. Care Choices recommended Dr. Lucia Zamorano of University NeuroSurgical Associates, PC, affiliated with Wayne State University, of Southfield Michigan. My visit with her was October 18, 2002. Dr. Zamorano detected spasms continuing on the right side of the face. She noticed weakness still present on the right lower face. I have good eye closure and although she describes the spasms as mild when I blink, I feel it is becoming more severe, more noticeably when drinking from a glass. To my knowledge, I have not experienced symptoms indicative of any other type of neurological condition. Dr. Zamorano was familiar with your skills and highly recommended I seek your opinion regarding my condition. She ordered an MRI with 3D flash high resolution (copy of prescription enclosed) which has not been obtained. The MRI was scheduled in an open scan unit (I am very claustrophobic) in Toledo, OH. Prior to the visit, I learned the location did not participate in Care Choices insurance. It was then scheduled at another location, though was canceled by their staff stating they could not perform a 3D high resolution. They stated this type of resolution is conducted by CT scan. After conferring with Dr. Zamorano’s office, her nurse explained the 3D flash high resolution scan requires use of a closed-scan machine and must be done at Harper Hospital in Detroit. The MRI was scheduled for November 3. When I arrived for the scan, I was informed the scan could not be completed because I did not have a referral from the physician. Both my husband and I explained a referral was not required (I checked with my primary care physician prior to the first appointment) and we left. A phone call after to the hospital staff after the visit resulted in their admitting a referral was not necessary. My husband and I discussed the possibility that a surgeon I select may want his or her own MRI or additional testing either now or just prior to surgery, so I have not yet attempted to schedule another MRI. As of November 2002, the spasms are increasing in intensity and there is some increased involvement in the mouth area with occasional flutters in the neck area, near the collarbone. There are other flutters in the chin area that have become noticeable in the last month or so. Spasms are triggered by any type of facial movement and present throughout the day. Additional stress does not seem to strengthen them and other activities (such as exercise) do not reduce them. If I awaken during the night, the slightest movement will trigger spasms. Because I usually get up at least once during the night, I cannot determine if the spasms themselves are what is waking me up though feel this is possible. When my eyes are closed there are less intense spasms, but unless I close the eyelid tightly or initiate other facial movement, I feel spasms that are most likely only noticeable to me. There is a sensation, more like a vibration, running into the right ear when spasms are active. Smiling, laughing or looking down while doing something, such as reading or counted cross stitch, causes the eye to close during spasms. Vision is not affected; last routine eye exam in April 2002 was normal; I do wear glasses, mostly for reading. Chewing is not affected though food is usually put into the left side of the mouth due to the continued drooping and spasms that result when opening my mouth. There has never been any numbness related to either spasms or the Botox injections. I believe some fatigue is related to the condition because I constantly anticipate them. As you know, it is impossible to keep the face perfectly still at any time. In spite of the intense drooping with the initial Botox injection in September of 2001, it did reduce the eye twitching temporarily though never offered complete cessation of spasms. I felt more relaxed between when the Botox “kicked in” and drooping started - a few days after injection. While I remain very thankful there is no pain, the spreading and increase in intensity causes me to be even more self-conscious and stressed because of this condition. The condition has not limited physical activity, but I do give more thought to doing things and feel more anxiety, especially if it involves those who are not aware of my condition (such as attending a school function) than I did before spasms developed 3 years ago. My husband and children (age 12 and 8) have been very supportive and we do sometimes find humor in the condition. Yet there are times that I feel that people are staring, knowing something is not quite right yet not being able to figure out what it is. My son (the 12 year old) asked in November 2002 if I just had “another shot” because he noticed my mouth pulling and as he was talking he was pulling on his own lip. I know that he was not doing this to make fun of the condition. Still, this type of reaction is stressful for me. I feel I focus unnecessary time on every aspect of the spasm - when the next one will start, if it feels different than the last one (which may have been just seconds before), wondering if it is spreading or when it will spread. I am concerned that it could spread to other areas of the head and/or neck as well. The drooping around the mouth is still very noticeable and I have not had a completely normal smile since the first injection in August of 2001. The thought of an MVD itself is frightening yet I hope the MVD will not only get rid of the spasms but give me back a real smile and reduce some of the fatigue I believe to be a result of the increasing anxiety. In spite of the stress, I am now very open about the condition and appreciate the information as well as the support of others through the HFSA. I recently read “Working in a Very Small Place: The Making of a Neurosurgeon”, which was also very informative. I have not felt it necessary to hide my face with glasses, hats or other accessories though notice as spasms increase I often turn away from people when I laugh or smile.Insurance Information
September 2002: Just prior to a follow-up consultation with my neurologist, I discovered the HFSA through an Internet search. I rapidly searched the site and read personal histories and most noticeable was the name that kept appearing - Dr. Peter Jannetta. Having just had a Botox injection in August, I knew it may be too soon to pursue surgery though felt it was a blessing that I located the web site just a week prior to my neurological visit. I discussed the web site and Dr. Jannetta’s work with Dr. Alexiou and he felt that if I was ready to consider surgery (which I was) that consulting with him would be worthwhile. I requested the consultation through my primary care physician. “Someone“ (not my primary care or anyone from insurance but whom I will not name) informed me, however, that insurance would not approve this request. Not being one to give up easily, I knew that all insurance could do is say “no” and that it would not hurt to try...so the referral request was initiated. November 2002: I received a letter from Care Choices stating they would authorize consultation with Dr. Jannetta but it also stated that any surgery procedures must be performed by an in plan provider. It included instructions for how to appeal if either the physician or member (myself) disagreed with their advice. I can’t express how happy I was to receive this approval - it was really like a dream come true because I had never tried to go out of our network since subscribing over 9 years ago. I did not file any type of appeal at this time because I was not sure who I’d select as my physician. We gave a lot of consideration to the logistics of a trip - having young children, possible complications, possible need for follow-up care, and the like. At this time I wanted Dr. Jannetta to assess my condition in person and answer some other questions I had, after which I would decide whom to select for my surgeon. In mid-November I composed a lengthy letter to Dr. Jannetta. I explained much of what has been included here and also included my past medical history, past surgical history, current medications and any questions I wanted answered. It was concluded with a thank you and I expressed that even though it was lengthy I felt it important to share everything I could think of because I had been authorized only one visit with him. December 2002: Kathy Evan, Dr. Jannetta’s Clinical Nurse Coordinator, provided answers to all of my questions via email. By now I had scheduled a visit in Pittsburgh for July 2003, arranged so that I could attend the HFSA Conference and have the visit all in one trip. Dr. Jannetta recommends patients be off of Botox for 9 months prior to surgery and my time would be May 2003. I was being very optimistic that I could wait until July for the appointment and have surgery in September after school started (our two children are still in school). Over the holidays I began to notice the spasms were worsening - either that or I noticed them more as the Botox continued to wear off. I decided that I just did not want to endure this condition any longer than I had to and felt it would be best to get the ball rolling a bit faster and move things earlier rather than later. January 2003: Because insurance stated surgery must be done within the plan, it became necessary to me to locate a suitable surgeon within Care Choices in the event that any appeal I might file was denied. Another letter was composed and used for 2 different practices. One went to Dr. Zamorano’s office and I requested data for three physicians in that practice and another went to the office of Dr. Daniel Pieper. Dr. Pieper responded promptly with a phone call - just 4 days after my letter was sent. He offered a lot of information which eliminated my having to ask all of my questions. We discussed the pros and cons of going to Pittsburgh and after some consideration I scheduled a visit with him for February 12, 2003. I also rescheduled my visit with Dr. Jannetta and moved it up to February 26, 2003. February 2003: I spent an entire day in Southfield, meeting with Dr. Pieper and his staff and he showed pictures and answered even more questions. That afternoon I met Dr. Dennis Bojrab, the ENT Surgeon who performs surgery with him. They were very impressive and I especially liked the team approach to surgery. They assured me that students did not have any “hands on” time during the surgery, that they do the procedure from start to finish though students are in the room or watching from monitors. After this visit I was confident that if Care Choices did not approve surgery with Dr. Jannetta that these guys would be a terrific choice. February 2003: On February 26, the big day with Dr. Jannetta and staff. I had heard how efficient the office was but that was nothing compared to being there! The staff is wonderful and so fast that they called my name before I could get out of the bathroom!! We are about 300 miles from Pittsburgh and on the way home we talked about both him and Dr. Pieper. Because of his expertise and years of experience, we felt it worthwhile to at least try obtaining an approval for surgery out of out network. At this visit I asked Dr. Jannetta and staff what they could do to help with insurance. They said that insurance almost always says no initially but they would provide letters and documentation supporting their skills and results if needed. They offered whatever support I would find necessary and throughout the next several weeks, I exchanged many emails with Melissa, Dr. Jannetta’s insurance coordinator. She and Kathy have been fantastic - they kept on top of things with insurance, making calls, providing specific information to my primary care such as surgical codes and letters, and were unconditional in their personal support and encouragement - which helped keep me very calm throughout all of this! I might add that last fall, Dr. Casey also answered an email that I sent, which was very helpful. March 2003: Request for surgery was submitted by my primary care physician with total support that things would work out in my favor. Again, though, “someone” told me that the surgery would be denied because there are physicians in the plan who can do the procedure. Again, I said, “let’s give it a try”. Insurance did indeed deny though in a letter of March 17, they stated that the services covered by this particular HMO must be provided by a participating provided unless it is an emergency. Well, there were physicians and it was not an emergency but this letter also offered instructions for filing a grievance (basically an appeal) and I did. Believe it or not, I was told a third time by “someone” that it would not be approved and this time I responded that insurance did not have an appeal process for nothing and it was worth it to me to try. To that I was challenged with the statement that there are doctors in the plan who can do the procedure. I replied that I was aware of this but they did not have the experience of Dr. Jannetta. The letter from insurance also included a formal grievance which I had to complete. It was very short, just 2 pages and there were 4 areas to be answered: Statement of the General Nature of the Grievance, Statement of factual circumstances that prompted the grievance, Summary of the action you have taken to solve the grievance and Statement of the remedy you are seeking. I completed each section and attached documentation such as letters or notes that I felt were important. They included a letter from Dr. Jannetta and his assistant, Rick Kortyna, MD. March 2003: The last week of March, I received a letter acknowledging the Formal Grievance had been received and stated there would be a Member Reconsideration Meeting on April 14 at 4:00p.m. The options offered were for me to participate in person, by telephone, or not at all and stated these options would not affect the meeting or their decision. I could have a representative appointed as well. After much discussion my husband and I decided I would participate by phone. They would allot me 10 minutes to present my case and we felt that since the phone option was available that it was not necessary to drive almost 4 hours round trip for a 10 minute meeting. The letter also stated that additional information I would like considered to be either mailed or faxed. If this appeal was denied the next option was to contact the Michigan Office of Financial and Insurance Services to request an independent external review. We felt that if it was not approved, knowing other options were available, that we would not pursue the matter further. I prepared one last letter. In this letter I did not assume that they had everything previously submitted so I provided my history and statistics I was aware of and stressed my desire to have the surgery done by Dr. Jannetta and why. That letter is about 4 pages in length though if anyone would like to see a copy I would be happy to share that or portions of that with you privately. I included statistics of doctors in the plan I had researched and even one doctor not in our current insurance plan though was trained by Dr. Jannetta. I tried to show that I had covered a variety of angles and was confident in my research. To ensure the letter got to the appropriate person, I sent it certified mail with a receipt coming back to me. April 2003: I remain very calm and relaxed. I had thoroughly done my homework, compiled a notebook of information, exchanged emails with many people and could not think of anything else that I could do. I had a tremendous peace that whatever decision was presented that I could be content with that decision. On Sunday April 13, I phoned the resolution coordinator and left a message to verify she had received everything. She returned my call early Monday, April 14 and assured me she did. I asked if the meeting would be at 4 as scheduled and she said “yes”. We were all set....all I had to do was wait 7 hours and then would have one last chance to present my case. During the waiting, I prepared one last statement to read during my presentation. I really did not have anything new to present and felt it unnecessary to read my lengthy letter over the phone. I prepared a very short statement, which reads: Thank you for allowing me to participate in the Member Reconsideration Committee meeting. I trust that you have all had an opportunity to review my Formal Grievance paperwork, the letter I submitted dated April 2 as well as the letter from Dr. Casey, which Rae. McPeek indicated she received on Friday, April 11. That information best summarizes the nature of my condition, my desire for surgery out of the Care Choices network, and statistics to support my research. Since my letter was sent 2 weeks ago, I have continued to weigh the options of having surgery under someone within the plan versus going out of plan to Dr. Jannetta. It is still my deepest desire to have the most highly skilled surgeon in treating this condition perform my own MVD. After much personal consideration, talking with others in the medical field, and countless emails with members of the Hemifacial Spasm Association support group, I continue to believe there is no better surgeon in treating Hemifacial Spasms than Dr. Jannetta. Surgeons within Care Choices have also expressed the same belief. Besides the information included in the Formal Grievance, personal letter and that of Dr. Casey, I have no new information to offer. I ask that you put yourself in my situation. If you required brain surgery for a fairly rare condition, it is my opinion that you would want the surgeon with the highest level of experience and best chance at recovery. As stated in my letter, I hope to only require one MVD in my lifetime. I remain convinced that my best chance of curing my facial spasms with a minimal risk of surgical complications as well as post-surgical complications (such as a spinal fluid leak, hearing loss, deafness or paralysis) will be if my MVD is performed by Dr. Jannetta. Thank you again for your time in reviewing my grievance. I will try to any questions you may have and look forward to a decision, hopefully an approval, very soon. At approximately 2:35p.m., I received a call from the resolution coordinator saying everyone was together a little earlier than expected and if the time was good for me we would conduct the meeting. It was fine and we were off! After introductions, the coordinator read my statement from the formal grievance and then I read my statement. I did not read it verbatim - rather as I read if some other thought came to mind I interjected that thought. Following the statement, members of the committee asked questions. They were very specific, including “did the Botox ever completely stop your spasms” and they asked specific things about various appointments I had. Thanks to my notebook I was able to refer to letters and dictation they quoted as well as look up anything I could not recall right off the top of my head. Guess you could think of it as an open-book test! I was very confident throughout and for anything that I could not say with absolute 100% certainty, I prefaced that with “it is my understanding”. I did not want this committee to get the impression that I was a know-it-all or that my answers were the only correct ones. Twenty three minutes after the phone rang, I was dismissed from the conversation and informed I would receive a phone call the following day. Another night of waiting was imminent but I knew in my heart I had done everything possible! I was prepared, persevered and had given a lot of prayer and thought into the previous 7 months of research. I said good bye receiving compliments from the committee for having a very good presentation. Note: In letters or during the phone conversation to/with insurance, I never threatened them and recommend that if you attempt to cross this bridge you conduct yourself in a manner that offers information, states your desire and, above all, do not put insurance or any of the physicians on the defensive. Although the human nature of us might say “if you don’t give me the approval then I’m going to (you fill in the blank here)”, this type of approach is not going to get you anywhere. No matter how desperate we may feel - and I’ve certainly been fed up enough with the spasms to tell people I just want my normal face back - insurance does have their rules and regulations and it is extremely important to keep in mind that you are not the only person they are dealing with on any given day. For many people, just like us, if insurance denies, there are other options such as changing plans, even if it means some out of pocket expense is incurred. It is equally important to remember that this condition is not terminal, it usually is not painful, and even though there are things to consider such as emotional stress and being self-conscious, there are many people in the world who are in excruciating pain and would give almost anything to be cured or free of pain. For me personally, the lack of pain was a huge part of enabling me to cope with the time that sometimes seemed to drag on forever. Personally, I wanted to conduct this entire process in a manner that would be a positive example, even if the approval was not given. Maybe this is part of why I had such a peace that I could accept whatever outcome was offered to me. Some of you who are new to the group might be thinking “yeah right...she says she was calm but she’s writing this after the approval was given”. I don’t blame you for being skeptical but I think that several in the HFSA would acknowledge that I actually emailed them in the days before the meeting and shared that I felt very calm about what was to come. Less than 2 hours later, the resolution coordinator telephoned to tell me the committee had reached a decision. She said they reviewed my information and presentation and overturned their decision and were going to allow me to have the surgery with Dr. Jannetta! I was so happy that I shook for about 3 hours after the call. I phoned some friends and emailed even more people. Then I got to work to schedule the surgery! Thank you to everyone who has been there for me every step of the way. You answered questions, put me in touch with physicians, and best of all were there unconditionally no matter whether I needed to talk or complain. I hope in the coming weeks, months, even years ahead that I can be as encouraging and supporting to others as you have all been to me. One surgeon told me that at one time his office had a web site/support group but it became so negative that it was removed. I explained that the HFSA had been the complete opposite and that although there were some negatives as to be expected (such as when someone stated their doctor didn’t know anything about HFS) that overall the entire atmosphere was positive and beneficial to many people around the world. We have continued opportunities ahead to mentor others. Let’s all remember where we have come from and that we may not have gotten as far without the HFSA! I wish I could say with certainty that I’d be spasm free after surgery. It will be my fervent prayer until I am put to sleep that God will guide the hands of Dr. Jannetta and his team and that if it is meant to be that I will awaken spasm free and never have spasms again. My surgery is scheduled for Thursday, May 8, 2003. As soon as I am back home and able to prepare and submit my diary I will do so. I look forward to hearing from you and keep your head high as you pursue your own quest for answers, treatment or surgery.
For details of my MVD, see my MVD Diary.
Permission granted the HFSA to post Personal HFS History on website.
Darlene Frederick, June 20, 2003