[livingwith]

I gave birth to my beautiful baby boy on July 19th 2006. On Sunday July 22nd, I began my journey with Bell’s Palsy. On that day I noticed that my lunch tasted funny and I remarked to my husband that my hormones must be out of whack. I awoke Monday morning to symptoms of what I believed to be a stroke My face felt weird and I thought I was talking strangely, so I looked in the mirror. I panicked and ran to my husband trying not to alarm my 6 year old daughter.
I called my OB doctor first a...Read the full article

[Terri]

Hi my name is Terri and I am 25 yrs old. I am from Louisiana and I have had Bells Palsy since I was 11. I am starting to look into some options on surgery. I have seen an accupunctionist and my symptoms have kind of started to correct. My eye is better now but my mouth still droops and I cannot smile. I am happily married and have 3 children. I was wondering if you have any other ideas. I do not have any insurance right now but I am willing to try anything at this point. You can contact me at my email address [moderator note: e-mail address has been removed].

Thanks,
Terri

[nettibug60]

I would love to know how the "Facial Reanimation" went for you. Perhaps it is here in another post and I just haven't found it yet. I developed Bell's Palsy 17 years ago. I am not sure what might have been the cause of the Bell's Palsy. Some doctors believe I was allergic to a cortisone ear drop I had been put on, others think it was stress due to the adoption process (we were adopting 2 babies - now 17, at the time) and others say it was due to the extremly cold weather and yet even others believe it was due to some type of virus (that I was not aware I had). None of this matters now but what does matter is the my self-esteem. I was on predisone way too long and far too much. I have packed on over 74 lbs. Some of this is due to being on prednisone and an uncontrollable (as the docs put it) urge to eat and some due to just low self-esteem. I quit pursuing many dreams when all this occured. It was bad enough having the Bell's Palsy but it shattered me deeply to learn I had synkinesis and that it would NEVER GET ANY BETTER. I often have older gentleman (and all ages for that matter) think I am winking at them when we are out to eat at a restaurant. When I smile, my left eye closes and when I drink or eat it closes as well. When I close my left eye, the left side of my smile rises. I have a very lop-sided smile and my left eye closes with each smile so I rarely smile. My family begs me to get pictures but I won't. It is just too discouraging. I would love to have my smile back and for my eye to not droop all the time. I began substitute teaching about 5 years ago. I lasted for almost 3 years before the pain from constantly being asked "what's wrong with your face" caused me to once again, retreat within myself. I just completed school last year and now have my certification in Therapeutic Massage. My clients love me....they aren't looking at me most of the time but often when they are done recieving their massage ask me questions. I wonder how long I can be strong this time around. My husband is permanently disabled (and what a trooper he is - has what is called Alpha 1 Antitrypsin Deficiency - never been a smoker - it is a rare genetic lung disease) so we are on limited income. Does anyone know of any surgeon in the Wichita or Kansas City area that might be willing to help me. Thanks and many blessings to all of you out there that are also suffering. Lynette

[livingston93]

Hi Nettiebug60,

I am so sorry to hear that you have been living with this horrible condition for so many years. This website has truly helped me in so many ways. When you have this affliction, you feel very alone and it is very difficult for people to understand the emotional toll it can take. I completely understand the self esteem and personal struggles with the Bells. Although I had not been suffering with the Bell's as long as you, I can relate to many of the comments and feelings that you shared. I would highly recommend a personal consultation with the Dr. of your choice. I chose Dr. Elliott Rose at the Aesthetic Surgery Center in New York City. From what I have learned, the facial assemetry and the synkinsesis can be corrected with surgery regardless of the duration of the illness. You are correct that once you are afflicted with the synkinsesis, it is not likely to improve on its own. The Facial Reanimation surgery was difficult, but I believe well worth the struggle. It is a long healing process and I am still in speech therapy. My synkinesis has greatly improved, but I may need further treatment to obtain maximum results. I now have mobility in the left side of my mouth, but I am still progressing towards a truly symetrical smile. So, there is A LOT of hard work involved in the surgery. It is not an overnight miracle. It requires a strong commitment of the individual to achieve the best results. I am about 3 months post surgery and believe I still have a long road ahead. But certainly, each individual and each case of Bells is unique. I did have insurance, but they have paid very little. We have paid most of the expense ourselves. I believe the cost is high, but the benefit outweighs the cost. If you would like to contact me directly, I would be glad to try and answer any questions that you may have. My email address is [moderator note: e-mail address has been removed]. Take care.

Lisa

[bellspalsy2010]

Hi Lisa,

I read your post and was excited to see that you, too, have undergone facial reanimation surgery with Elliott Rose. I developed Bell's Palsy 4 years ago and underwent the surgery 1.5 years ago when I realized that my movement would not be restored. Unlike you, however, I am so far VERY unhappy with the results. I have a bulky scar at the corner of my mouth where the skin was cut (despite 2 surgical scar revisions and countless painful steroid injections). My left cheek is also still swollen from where the sling was inserted, creating a deep nasolabial crease that ages my face significantly. While my upper lip does have some movement, I have experienced very little improvement otherwise; in fact, I have even more difficulty chewing than before.

Post-surgery, I feel my self-esteem is worse than it was pre-op, and I fear I elected to have a procedure that permanently damaged my face. I decided not to return to Dr. Rose for the refinement surgery as I did not feel comfortable with his approach or bedside manner. Currently, I am under the care of Dr. Cap Lesesne, who has been wonderful. I am only sorry that I didn't see him to begin with.

I am curious to hear how your recovery has been so far? Do you have much scarring? How is your movement? Has your swelling reduced? What exercises/physical therapy do you do? Are you still seeing improvement?

I do look forward to hearing back from you, as there are so few ppl who have undergone such a complex procedure and I've been desperate to hear of similar experiences. I hope your recovery has gone and well and would appreciate any insight/advice you can provide.


Thanks so much!
Donna

[jkdet]

Hi Donna, I just finished reading your story and I felt like I had written it. I too had facial reanimation surgery with Dr. Rose in 2006. It has taken me 11 surgeries to correct what he did to me. I have had the sling totally removed. It took multiple surgeries to get it all out. My lip is also disfigured and will probably never be right. It has been hell for the last 4 years. Nothing that I tried before the removal was really helpful. The pain has subsided with the removal but my lip is still is numb and I am anxiously waiting to see if normal feeling returns. There are many other "mistakes" he made with my original surgery. My facial surgery was due to an acoustic neuroma but the surgery we had was the same. I have been searching for other patients of Dr. Rose to find out if I was the only one who was so unhappy. I am very anxious to know more of your story. Kathy

[bellspalsy2010]

Kathy, I am so sorry to hear about your experience and that you had the resort to having the sling removed, which i can imagine prolonged your suffering. I have considered doing the same thing but fear that the results won't be as intended and that I will end up in a worse position that i'm in now (which is hard to imagine). I am also ready to be over this chapter of my life, as I feel that in addition to my physical distress, I have been pyschologically traumatized as well. You mentioned that having the sling removed has helped you tremendously. How so? Do you have movement now and how was it achieved? Who is the doctor with whom you've had the best experience? After my surgery I learned that for the most part, doctors no longer insert the sling, as the costs outweigh the benefits (ironically, when I went in for the consultation/sales pitch with Dr. Elliott Rose, he and his office manager Linda made it sound as though he is the only doctor "advanced" enough to peform what is truly an archaic procedure). Right now my left cheek is swollen and will likely remain so, I have restricted movement and more difficulty chewing than before the surgery, my mouth is droopy and pulled to the side (as is my nose), I have a very prominent nasolabial fold, I have swelling under my lip, and I have deep, heavy scarring on the corner of my mouth, under my chin, an on my upper thigh. My eye still doesn't close so it gets very dry and blurry, and my mouth feels unnaturally dry and is difficult to open due to the scarring (which I've had surgically corrected twice already). Needless to say, I did NOT expect nor was I warned of these surgical side effects-- which made my recovery even worse, as I was not psychological prepared for the aftermath and/or long recovery period (if i even ever fully recover).

Right now I'm I've having minor procedures done, including Restaylne injections to the nasolabial crease (I've had three shots administered over the past year, which is expensive and doesn't seem to have a lasting effect). My left temple is starting to sink in b/c of muscle atrophy caused by what may be an inadvertent compressed nerve (another "mistake" made by Dr. Rose), so I have an appointment with a neurologist to see if the nerve can be salvaged. I've been regularly getting very painful steroid injections to the swollen areas and to my scars, some of which will have to be surgically corrected. I opted not to have the "revision" surgery done with Dr. Rose b/c I didn't trust him, and am so RELIEVED that I didn't, especially since he uses a laser to remove the scars. I have darker skin which I've learned is often not suitable for laser treatment, and I can only imagine the further damage he would have caused. In fact, only a few weeks after my surgery I was deeply disturbed by the unexpected, unforeseen and disfiguring facial scarring and asked Dr. Rose if he could go ahead and use the laser to remove the scars. He agreed to do so without hesitation, his only remark/concern being that I would have to pay for the operating room fee again once I had the revision surgery (w/r/t the bruising under my eyes after the surgery, he tried to sell me his self-branded $60 vitamin K cream-- despite the fact that I had already paid him $40,000 in cash and he was to receive an additional $40,000 from my insurance company). Again, I am so glad that, despite my desperation at the time, I went with my gut and decided not to let him perform the procedure. In hindsight it was OBVIOUSLY too early after the surgery to have the laser scar removal. I feel very fortunate and relieved now to have found a doctor (Dr. Cap Lesesne) who has refused to perform procedures that he does not feel are safe/appropriate, even if it means losing out on an opportunity to make money. Being under the care of a doctor like Dr. Lesesne who is honest, ethical, skilled, professional (e.g., doesn't keep patients waiting in his lobby for hours while he's in his office tending to personal matters) sensitive, and, most importantly, not primarily/solely motivated by money (esp. if it means compromising the welfare of his patients) has restored somewhat my diminished faith in doctors.

I look forward to hearing your thoughts and can empathize with you on this very difficult and unfortunate experience.

[jkdet]

Donna, I am so happy to hear from you so soon. Your story is so much like mine it is unbelievable. I also know of another woman who has had the same experience with Dr. Rose. She and I had had the sling removed by the same dr. Having the sling removed was the best thing we did. There are several small surgeries to repair the damage done by rose after the removal. It took a several times to get it all out and my lip had to be corrected. My dr couldn't believe the amount of sutures he used and how poorly they were placed. I could go on and on. I live in the NY area and would love to get together. I am sure we could help each other. I am currently filing a complaint with NY state. Is there some way we can talk on the phone? Kathy

[jkdet]

Donna, I just wanted to let you know that some of the treatments you discussed are the same as my friend and I tried. Due to the way the sling is attached the treatments were not that helpful. There is a doctor at Hackensack Medical Center who will give you an honest assessment of what course of action you should take based on his experience with us. He has turned our lives around and given us reason to go back to living. I hope this is helpful for you since I also lived through the depression of not having anyone who would or could help me.

[bellspalsy2010]

thank you so much for getting back to me. like you said, this is such a rare procedure and i have found that so few doctors know how to proceed once the damage has been done. i also feel that many do not want to get involved b/c they assume that my goal is to purse legal action against Dr. Rose-- which i have certainly considered (and am still considering). the poor results/skill level aside (i have gashes all over my body which any decent plastic surgeon would've been able to avoid, and a couple of my blue stitches are visible under the skin and threaten to pop out). i do not feel that i was adequately informed AT ALL by Dr. Elliott Rose about the associated risks and potential results of the surgery. he raved of the surgery and of the results, promising that while i would not be back to my original condition, i would definitely see improvement. a year of swelling, heavy (permanent) scarring, a droopy and disfigured lip, disabled movement and more pronounced facial assymetry are NOT improvements, nor was I informed that they were possible outcomes. as far as i'm concerned, he drastically WORSENED my condition and quality of life. the only indication i had that the recovery time would be prolonged and that i would experience numbness/swelling was through a generic, cryptically worded standard consent form that he NEVER discussed with me during the consultation/sales pitch and which was conveniently sent one week before the procedure, after he had collected my non-refundable deposit. had Dr. Rose taken the time to honestly and thoroughly explain to me the risks and potential results of the surgery, i do not feel that i would've suffered the degree of psychological damage and depression that i continue to experience, as i would've been psychologically and mentally prepared for anything less than ideal. I was NEVER warned to expect anything short of improvement.

i thought i had adequately researched Dr. Elliott Rose and the procedure he performs, but again, it is a rare surgery and I could find nothing on him. Furthermore, as young woman abruptly struck by such an upsetting condition, I was desperate to get help and wanted to believe that there was someone out there who could do something to restore movement to my face. I believe Dr. Rose used my (and others', primarily womens') vulnerability and desperation and uses it to his advantage. In fact his office manager, Linda, convinced me that my only hope for looking presentable was to get the surgery, and she called me daily for weeks to solicit my business. The only information i found on Dr. Rose were strategically placed advertisements for "facemakernyc" (which infuriate me to this day) and they prove what a skilled marketer/self-promoter he is. Now (far too late) i know why, as an unsuspecting patient, I was unable to adequately educate myself on this man and his damaging procedure.

In addition to not communicating the risks, recovery time, and potential adverse results of his surgery to his patients (thereby ensuring that he is able to gain their business, despite the subsequent disappoint and suffering that inevitably ensues), Dr. Rose threatens and silences those (i.e., his former patients) who try to help others avoid their same mistakes. When i posted a negative review on another site and wrote e-mails to Dr. Rose and Linda explaining my experience and the trauma, depression, and multiple corrective surgeries I have had to endure since my initial surgery with Dr. Rose two years ago, I received a threatening letter from his lawyer ordering me to discontinue all "defamatory" posts and "harassing" emails. In fact my posts and messages have been nothing but accurate, honest and objective portrayals of my experiences with Dr. Rose and his surgery. It is true that Dr. Rose did not verbally communicate to me the risks and potential negative outcomes of the surgery. It is true that my face is less symmetric and functional that it was before the surgery, and that I have suffered tremendously over the past two years, as evidenced by the number of expensive, painful corrective surgeries I have so far undergone, in addition to the pyschological therapy i have had to seek out. it is ironic that Dr. Rose uses the internet so liberally and aggressively to his advantage, to promote himself, but is afraid and unwilling to accept that this same medium can (and, to be fair, should be allowed to be) used against him. It is also deeply disturbing that one can easily get an honest opinion on where to eat or where to stay, but can remain dangerously uninformed about the doctor with whom she entrusts her health and life. my face and my life will never be the same, but other patients, who are suffering and vulnerable enough as it is, should have the right to access comprehensive, unbiased information on what they're getting themselves into with this doctor and his surgery, based on the experiences of others. In addition to taking away so much else from me, I feel that Dr. Rose and his lawyers are also trying to take away my right to free speech by playing the victim of "defamation"-- despite the fact that it is you and I and countless others who have suffered at his hands.

I commend you on your complaint to the the state board and would like to do the same. What is the procedure? My goal is not for monetary compensation (though it is unfair that we must take on the financial burden of having his mistakes corrected, after having paid an exorbitant sum for the initially damaging surgery) but to hopefully provide future patients with information that we were unable to access (and therefore be able to make informed decisions), and to make Dr. Rose accountable for his actions going forward. Based on my experience and outcome, I also do not think that Dr. Rose should be able to solicit insurance companies for partial payment of the procedure. As i said before, my chewing and speech have been hampered by the surgery, so the procedure is hardly justifiable on medical grounds (or on any grounds, period, as far as I'm concerned).

This experience has really opened my eyes to patients' rights and how little we have. What course of action is Dr. Rose's other patient taking? I'm sure there are many of us out there, and that together, we can have a voice and help each other (along with those who are considering the prodecure). I'm looking forward to hearing back from you!