Botox concern
Posted , 7 users are following.
I have been diagnosed with HFS 2 years ago. I started Botox around that time with my eye doctor. Botox helps, however, I wanted to see if other HFS patient's experiment what I do. First - are you all getting it from eye doctors or other specialists? Secondly - are you only getting shots on one side of your face? They only do my left side and then my smile is crooked. I try to outweigh the benefit of it but wanted to see if other people are doing anything different. Thanks!
0 likes, 20 replies
Roseann angie1414
Posted
Hi Angie, I had HFS for 9 years before surgery 3.5 years ago here in the UK. I was at first referred to an eye doctor and her specialist nurse administered Botox on one side only. I was told that it would be classed as 'cosmetic' if I wanted the other side evened up and they would not do this under the National Health Service. The result was, like you, that my face became lop sided. Once injections were needed to the mouth and cheek area as well as the eye I found that one side of my face seemed permanently frozen and this took away my ability to smile. I eventually gave up altogether on Botox because I could no longer use my face effectively in communication with others (this was particularly hard because my job was public-facing). After 9 years I bit the surgical bullet and have never looked back. I hope you will also find a good way forward as time goes along. Best wishes. Roseann
angie1414 Roseann
Posted
Thanks Roseann! I did see a Neurologist who ordered a Brain MRI/MRA which did show a possible contact between a blood vessel loop and the left facial nerve. So I then went to a Neurosurgeon who said stick with the Botox as long as it is working and make surgery a last decision. If I'm not prying too much, is this the surgery you had -- basically - a brain surgery? It scares me way too much.
Roseann angie1414
Posted
Hi again Angie. Sounds as if your neurosurgeon can see a compression on the MRI, and, that being the case, it is likely that the spasms may at some stage progress a bit unfortunately. Surgery is VERY frightening but much less so if you approach it with good information and the very best surgeon from your part of the world. If you need any advice on this please just say. This is not actually 'brain surgery' but the surgeon does need to go into the area beneath the brain and separate out the nerve from the offending blood vessel (vein or artery) with some teflon threads. In the hands of the best surgeon you have an 80-90% chance of complete cure with all risks being minimised (but there are of course risks with any surgery). I cannot tell you how scared I was of the surgery and only decided that I had to do it when the thought of living with spasms for the rest of my life became a more daunting prospect than the surgery. I lost my confidence and was very depressed with the way in which the spasms affected my life and my relationships, but hopefully you will not reach this low spot. If you do decide to pursue the surgical option then please do not just 'go local' or stick with the man/woman you already have. It's really important to find the right man/woman for the job and one who has done LOTS of these specific surgeries for HFS with great results. You may wish to join the Facebook Hemifacial Spasm International Support Group where there are over one thousand members from all over the world and excellent information too. All best to you and please come back if you need further info or advice.
jenny angie1414
Posted
Hi Angie.
I was diagnosed with rhfs following a small stroke. Since then I developed thyroid cancer, had two operations followed by chemotherapy. As you can guess the HFS took a back seat, but on the morning of my last operation I was sent down to see a neurologist and he immediately put in two shots, one above and one below my right eye. This worked well for three months, but towards the 10 week mark I became aware that the right side of my face was twitching although others could not see it. I went back and had another two shots just before Christmas and will be seen again in march The neurologist advised that I would probably need three or four shots each time. I have had several scans, but they were for the cancer and stroke so I don't know if any compression was found.
At the moment I am sticking with it although my right eye is more open than the left and the dryness is driving me mad.
Like you I am not inclined to go for surgery, but if it gets really bad it will be an option for the future. Nice to hear from Roseann again too. Happy New year and good luck.
Jenny
angie1414 jenny
Posted
Thanks Jenny! I - too - was diagnosed with thyroid cancer in 2007. A real "life changer" for me. Everything is going well now. Very annoyed with my left HFS. Just had Botox done the end of November and it hasn't lasted as long as it usually does. Sometimes I think I am taking it too personally but it really is bothersome. Thanks for your input! Happy New Year!
Angie
jenny angie1414
Posted
Hi Angie, That's what I am afraid of ie the botox not lasting very long. Even now nearly a month afterwards I can still feel my face and cheek tightening, but it is a long way for me to go at age nearly 83 and I have to leave my alzheimers husband on his own so am not anxious for many long journeys I am also suffering from extreme mood swings, feeling simply murderous sometimes and very critical of everything and everyone. have to rein it in, but my key worker has now given me three days of 75 mg levo thyroxine and four days of 100 . That makes for lots of work as I am also taking meds for high BP and blood thinners for the stroke. Altogether I am not a happy bunny at the moment, but gradually getting my strentgth back and wanting to do things again. Sadly my singing voice seems to have gone and that was my lifeline. Am hoping the next appointment will throw some light on that and maybe some help. Also have developed what looks like psoriasis on my shins and arms, very itchy and all my finger joints have swollen up. Key worker says tell your GP, but waiting 3 to 4 weeks is not really an option so I am ignoring them!
Did you have funny side effects afterwards too?
It is nice to know that things are better on the thyroid front for you now, but the HFS is a real blight isn't it?
Take care
Jenny
marilyn02195 angie1414
Posted
Hi Angie,
i suffered with Hemifacial Spasm for more than 15years and know exactly what you mean about the down side of Botox.It's so difficult to get exactly the right dose and I've had either a drop near the mouth or a very raised eyebrow,all making me look very odd.In March I opted for an operation to relieve the pressure on the nerve.The operation appeared to have failed and it's only now that I seem to be improving.I hardly dare say I'm cured as I really don't want to tempt fate!My last Botox was in October and normally by now I would be twitching.Although the operation has risks I would recommend it as the thought of having Botox(which only masks the problem)for the rest of my life was quite depressing.
i wish you luck whatever you do.
Marilyn
lesley53917 angie1414
Posted
Hi I had Botox for several years,they started putting lt in my cheeks,now I have a very numb cheek,I wouldn't! Recomened long term Botox. It has bade my face worse.
robert78247 angie1414
Edited
Hi Angie,My name is Bob and I live in New Jersey.I had two MVD's performed in 2002- one was completed in July of that year and then another was successfully completed on11/7/2002. (of course my favorite numbers became "7"--"11"! You probably inferred from the previous sentence that the first attempt to correct my condition was a failure and you would be spot on correct.That's stating it mildly.I recently revisited my post surgical report from the successful MVD and although some of the phraseology is somewhat technical, I am presenting it to stress the importance of choosing the most qualified neurosurgeon who performs this operation multiple times each week. Midway through the report it was noted that my cerebellum was found to be incredibly scarred to the overlying dura and ultimately the petrous bone.Microsurgical dissection was carried out to free the cerebellum from the overlying dura and petrous bone This was an extremely tedious dissection which is quite difficult.The next sentence describes the total incompetence of the first neurosurgeon who performed on average 1 MVD per month."at this point teflon was seen along the periphery of the 7th and 8th nerve.The brain stem was observed and -NO TEFLON WAS SEEN AT THE ROOT EXIT OF THE 7TH NERVE.THE LARGE ANTERIOR INFERIOR CEREBELLAR ARTERY WAS IMBEDDING THE BRAIN STEM ALONG THE 7TH NERVE.THIS CONDITION WAS ELEVATED AND DECOMPRESSED WITH TEFLON PLEDGETS.THE VERTEBRAL ARTERY AND THE POSTERIOR INFERIOR CEREBELLAR ARTERY WERE ALSO INDENTING THE 7TH CRANIAL NERVE AS IT EXITED THE BRAIN STEM.THESE VESSELS WERE ALSO ELEVATED AND THE NERVE WAS DECOMPRESSED.This is why the operation was a total failure and my condition worsened.I hope you were able to discern just how incompetent the first neurosurgeon was and how important it is to make your first choice your best choice.Two brain surgeries in a 3 1/2 span of time is not the way to go. Before I had the 2 MVD's I was treated with Botox (unsuccessfully) .In the first attempt the doctor injected 20 units
of Botox at 2 different sites on the right side of my face .I was told to return in a week for the "BOTOX EFFECTIVENESS REPORT" and to the good doctor's surprise the twitch was alive and well.So the good doctor was supposed to only double the next dose but he QUADRUPLED IT-"ENOUGH TO PARALYZE A HORSE " he said.But the same result was in evidence a week later and as a result he threw up his arms and said MVD surgery was my next stop. And now you know the rest of the story .Good Luck!
angie1414
Posted
Getting discouraged! My Botox was lasting 4-5 months and I just had it again the end of November and I'm already twitching, etc. Very frustrated! Has anyone noticed "when" their twitching acts up the most?? I have noticed that it really acts up in church. Yes. Church. Not just during worship but during the sermon as well. I notice it acts up when talking to people and drinking or eating. I will take a sip of my tea and my whole left side of my face cringes. Are these all typical of hemifacial spasms? I am a receptionist at a doctor's office and see people all day. I hate when I talk to them and my left side of my face twitches or my left eye begins to shut. I'm NOT entirely sure I'm seeing the best eye doctor for Botox because the last time he gave it to me my left eye was affected. Everytime I blinked, my left eye went all the way to the left. It freaked me out as well as others. Even the eye doctor said he has never seen this before. Now I'm afraid to get my Botox from him next month. Just having a hard time trying to decide on whether to find a new doctor because he is suppose to be the best in the area and may very well be. I know after working in the medical field for a long time that things happen. Practicing medicine is just that - practicing. Just wanted to know if anyone else experiences any of my issues. Thank you!
Roseann angie1414
Posted
Hi Angie, I can certainly confirm that your triggers are exactly those which I experienced prior to my surgery. I used to love singing but this became an impossibility and any interaction or 'excitement' (including eating, drinking, cold winds, bright sunshine) made things worse. It is a rotten condition when you are public-facing; sadly I gave up my job as a social worker because I could no longer cope with it. I hope you find some answers to your Botox question. My observation is that Botox lasts for shorter and shorter periods the longer you have been having it. Do you think you will ever consider surgery I wonder? All the best going forward.
marilyn02195 angie1414
Posted
I know what you mean about Botox,it's very hit and miss.I had it for over 12 years and sometimes with very strange results(eyebrow raised,mouth drooping on one side)I think it's incredibly difficult to find the exact place to inject.Eventually I had the operation and after several months it appears to have been successful.If this continues my life will have been transformed.I urge you to look into the possibility of an operation as Botox is not a solution.
all the best
marilyn
angie1414 Roseann
Posted
Thank you. I feel less crazy knowing that others have this same thing happening to them. Although I am sad to hear you had to give up your job, it makes me feel like it will be okay if/when I give my own up. Believe me, I sometimes think it's time to check into disability. I am 52 years old going thru, yet again, another challenge in my life. I have already gone thru Thyroid cancer. Although I understand the surgery approach, it fears me to no end. The Neurosurgeon I did see, told me to keep doing the botox because surgery should be a last resort. I am hoping that the doctor who gave me the last Botox in November, just didn't hit things right this time. I am going to go to my Neurologist for my next injection in February. I have decided. Although I have a fear that she will disfigure me. I feel like I just can't win with this. But there is worse things in life. Thanks again for your words.
angie1414 marilyn02195
Posted
Thank you for your input. I have only been doing Botox for 2 years and already feeling discouraged. I am very fearful of surgery and will probably wait until I just can't take it any longer. In other words, I know I have to continue Botox and hope for the best. I am happy that there is a surgery option and will definitely consider it at some point. Thanks again.
Roseann angie1414
Posted
Hope you'll have a better experience next time Angie. I found that things began to go wrong when the Botox lady started injecting my cheek and mouth area - it made me very lop-sided. If you could possibly have a balance shot on your good side then hopefully you won't experience this. Should you ever decide to consider surgery then please find the MOST experienced surgeon in your country - I believe that Dr Sekula in Pittsburgh, US, boasts a 93% success rate which is phenomenal. This is one surgery where local definitely isn't best! And some people go to see a neurosurgeon just to gather information about their suitability for surgery - this can be a useful thing to do and it's what I did initially. I actually had no intention of having the surgery but I succumbed when I was 62. However, I totally understand your fears particularly when you've already had to contend with a major health challenge. Wishing you the best.