Hi… my job as a therapist requires me to talk and smile with patients. I’m scared of having permanent facial paralysis. Has anyone experienced this? Is it just temporary?
There have been several members who have had some nerve damage affecting the face, tongue or speech, but as far a I’m aware it’s been temporary- but it can take months to improve, not a few weeks. Hopefully Isaiah will give you advice as her hypoglossal nerve was stretched during surgery & she had to do exercises for a while to help with tongue function.
Most surgeons will monitor the nerves as they operate to minimise damage, so that’s something you can ask your doctor about. And choosing a good, experienced surgeon will help too!
There are risks with the surgery, it’s not something you should go into without thinking through, but most people get to the point of being in so much pain & their quality of life being affected so much that it outweighs the risks…for example we’ve had quite a few singers & teachers on here who’ve had their voices affected alot by ES, so surgery has been necessary.
I hope this helps!
Hi Naturemama, I had difficulty moving one side of my mouth for several months, but I don’t feel it interfered with my interactions with others. The post-surgical symptom I did have that might be relevant to you is easy fatigue/achiness in the muscles around my jaw when talking for too long. I was lucky and that was only problematic for a few weeks. If you have the option, might not want to book too many patients back to back for a few weeks post-op so you get a little break between sessions.
Hi Naturemama -
The most common problems seen post op are a one-sided lower lip droop, one-sided tongue paralysis, & first bite syndrome. As Jules noted, these normally recover fully. I learned several years after the fact that I could have gotten PT for my tongue & swallowing which should have started soon after surgery. That would have expedited my speech recovery & tongue function. The tongue paralysis is probably the most debilitating of the three things I listed & can come from the glossopharyngeal or hypoglossal nerve being irritated during surgery. My glossopharyngeal nerve was wrapped around my styloid process so had to be partially unwrapped for the styloid to be shortened. That made it unhappy. I talked like I was drunk for a couple of months. By 6 months post op, my speech was fine & by 9 months, my tongue was back to normal. I did get first bite syndrome which hasn’t fully resolved, but it’s inconsequential as it doesn’t affect my ability to live a full & active life.
The most important thing to know about the post op period is that it does take a couple of months for your energy to come back fully and can take up to a year + for nerve pain to fully resolve.
Most people can go back to work part time (or full time in a less demanding job environment) after 2 weeks. Listening to your body & resting when it says rest is the ticket to quicker healing. Pushing yourself hard early on will prolong recovery.
I jumped at the opportunity for surgery because my ES symptoms were seriously impacting my life. It was a risk I felt worth taking.
Thanks so much Isaiah… that’s such good advice and it’s really helpful for me to not be so anxious. I feel pretty depressed with feeling physically horrendous and scared to have damage where I can’t work (I talk all day for a living). How did you manage this emotionally? Also, what’s “first bite.” I’m still new to this diagnosis and feel like everyday I’m learning more. Remind me who did your surgery? My memory and “brain fog” is definitely worse these days, so I’m excited to get my life back.
I had a crooked tongue for 2 months post op. Completely resolved by 4 months.
I understand your concern about permanent paralysis. That is why I advocate for surgery as soon as possible. In my case, I feel that my inability to find a right time for surgery and the right surgeon caused a great deal more trouble.
I had temporary facial paralysis on one side, involving the eyelid remaining opening and the tongue and cheek partially paralyzed and the lower lip. Everything was back at about 2.5 months.
I think 3 years earlier,and I may have not gotten Glaucoma and so much eye pain and dryness.
All the pain and dryness are now gone and the Glaucoma seems to be under control for now.
As Jules stated, the good surgeons monitor the nerves with monitors and know when they must stop the surgery and give the nerves a rest if they are stressed.
Onelessstyloid is also very correct.
You must be so relieved, but while you were waiting you must’ve been scared it was permanent!
Who did your surgery? And waiting for that to resolve must’ve been scary!
Dr Nuss in Louisiana, but he is friends with Dr Cognetti. He actually trained in skull base surgery somewhere in PA, I believe. He is really good. That is only one reason why I think you would do well to seek surgery with someone near you. Many of our members from the beginning of this forum in 2009 have gone to Dr Cognetti and others around you.
Dr Nuss knew that my nerve had been stretched and knew that it was not permanently damaged. He monitored it the whole surgery. They use some sort of electrical stimulation to determine the status of the nerves during surgery. Yes, I was scared, but only about how long it would take.
He said he did not know for sure, but admitted that I should be okay for my high school reunion in two months. My eye was pretty much okay, but my mouth was still a little weak. I still had a great time at my reunion over 7 months ago.
The surgeons cannot give us a guarantee, but if you pay attention to them carefully, you will get a vibe that they know what they are doing. They are top surgeons, and pretty good at what they do.
We are all scared. It comes with this mess.
Thanks so much for all of your wisdom. Yeah, the unknown makes this all worse, but I keep telling myself that it’s not a death sentence and I’ll be a better person for this experience. I agree with going with your gut on the doctor. If you had your pick between Dr. Cognetti or Dr. Samji, who would you chose? I have people I could stay with who live in both locations, so I’m just conflicted on if there’s one doc who out nudges the other so to speak.
Of course!!! It was going to last forever. It was NEVER going to get better.
Dr. Samji was my surgeon. He did my surgeries in 11/14 & 8/15. I have nothing but good to say about him. He has a great bedside manner as well. If you come to CA for surgery, Dr. Samji will likely schedule your surgery on a Mon. so you can come the week before for a Fri. pre-op appt. He will ask you to stay till Thurs. or Fri. after your surgery for a post op check-up before you head home.
The difference in surgical practice between Drs. Cognetti & Samji are these - Dr. Samji believes in removing the styloid process to the skull base when possible. He also removes the stylohyoid ligament to prevent any future problems it might cause. Dr. Samji prescribes prednisone to help w/ post op swelling. He schedules ES surgeries on Mon & Weds. each week.
Dr. Cognetti leaves 1" of styloid process behind (normal styloid length) erring on the side of caution to protect the facial nerve which comes out of the skull base near where the styloid process is anchored. I’m not sure what he does w/ the s-h ligament if it’s not calcified. He does not prescribe prednisone post op. Dr. Cognetti only does ES surgeries on the last Fri. of each month so has a much more limited ES surgical schedule.
Both doctors have a high success rate in helping their patients recover from ES.
I forgot to explain first bite syndrome. Here’s a quicky definition of it from Google: " First bite syndrome is characterized as pain in the parotid (salivary gland) gland or lower jaw area (mandibular region) at the first bite and, subsequently improves with each bite . The cause is unclear but, may be related to nerve impairment from surgery or other conditions.
It’s basically facial pain that starts near the jaw joint (where the parotid gland is) & radiates into your cheek/one side of your face, sometimes ear or down neck or up into the skull on the side of the face where you have it. It’s very intense when you take your first bite of food & reduces fairly quickly as you take subsequent bites. Some types of food like sour, spicy, very sweet, etc., stimulate a stronger first bite response than more bland foods. It’s thought to be caused by over-excitement of the parotid gland when one starts eating. This over-excitement is often the result of minor nerve damage from surgery in that area of the body. This is a somewhat common ES post surgical symptom but usually disappears w/in a few months post op. A few of us have never lost the “fun” of FBS. I like to think of it as a reminder of how far I’ve come since I had my surgery as that keeps my gratitude at a high level for the recovery I have had.
On the plus side, FBS deterred me from randomly snacking on single bites of foods that were not healthy
Both Samji and Cognetti are great. I planned a two week stay had I gone to Samji or Jason Newman. Your choice of doctors is based on your ability to travel, the doctor’s protocol. I wanted to choose Samji, but I had a previous intraoral surgery that was not enough to get rid of my symptoms and Samji would not redo it unless he did the other side first. My worst pain was on the previously operated side. I really could not see operating on the lesser painful side first, so I put him down on my list. I did not really want to navigate Philadelphia and Cognetti is said to leave a bit of styloid. My styloid that was left was very thick and had a sort of a knuckel in the center so I did not want to go to him if he leaves a bit. Dr Jason Newman, has operated to the skull and he does believe in the fact that they grow back and has re-operated on his own patient. I chose him and he was willing to see me, but while I was working out a plan of where to stay how long and cost, I found my doctor in Louisiana where I have a home.
Samji 's office actually got the CT scan done for me that ultimately set me up for my surgery, but he was adamant to not redo the side that was only 3.0 cm after the previous surgery. To his credit, the CT was still a 2 D scan. 2 years later, I was able to make a 3D view that showed the actual styloid clearly. Isaiah 40:31 lives near there. The airport is not extremely far from Dr Samji. There is a Marriott Residence Inn nearby, so that was all appealing to me. Jules and Isaiah 40:31 can tell you more about contacting all of these doctors. I called and spoke to the nurses and sent records etc. They are all helpful. I had to factor in travel costs and living expenses. You do not have to stay 2 weeks but I think you should stay long enough for your 1st appointment. Dr Samji has a system to get you on your way within in a week of his surgery, if that appeals to you. I would think you could drive home from PA, but I really do not know the time it takes. I had FBS for awhile, but it is mostly gone. Once in awhile, I have a twinge, but very rarely. For me it was just the first bite of food and then gone.
I hope we have all helped you along the path.
Thanks Emma! I’m so grateful for this forum or I wouldn’t know the difference between Samji and Cognetti. I’d prefer to go with Samji but I have this fear that he won’t take me which I’m sure is just a worry until I hear back from his office. Would you mind telling me your story? How are you now and did Samji end up doing both sides (fixing that one that was intraoral?). How are you now? Sorry for all the questions!
I will message you.
Temp and permanent paralysis was one of my biggest fears of surgery and low and behold, I got temp paralysis in my lower lip from the surgery and had a crooked smile. To say it freaked me out is an understatement. (The support I received here without judgement was a life safer for my sanity.) It was noticeably better within a month, but I could still feel the difference and bit my lip frequently for another additional month or so. Its been almost 5 months and I would say that its 98% better.
All the best to you @Naturemama5175.