I just had surgery on Monday 10-7-19 at UCLA wanting to let people know about a top Dr there Dr Mendelsohn and also to ask for feedback on my recovery. Second day and still having pain in throat area but seams like it may just be from the surgery. Can anyone give me their experience with recovery and timing
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Thank you for the info on the doctor; always good to have more names! Did you have external or intra-oral surgery?
It is still very early days for you- swelling peaks about days 3-5, so that can cause symptoms still. Also if youâve had intra-oral, then obviously it will still be painful in the throat for a few weeks. If it was external then there can be pain still from being intubated.
We did reply to your other post too- nerves can be irritated from surgery, so can take several months to heal. So try not to worry, all seems normal for now, & make sure you donât overdo things, it can set healing back!
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Hi ronowe,
I had external styloidectomy from skull base include in S-H ligament as well as venoplasty to the IJV. The jaw pain and fullness in my ear lasted for ~2 weeks, sore throat and mouth soreness from the intra oral nerve monitoring lasted ~ 2 weeks as well. I was fortunate not to have any nerve pain or damage aside from the numbness under my jaw to the top of the incision, which is still there but fading. I am now 7 weeks post op. Hope this is helpful! Best wishes for you and your recovery!
I had the external surgery Just that after one day I am now having pain at base of tongue and back of throat again which is where it was before. Only thing Iâd say is it does not feel as much like a toothpick sticking me. Just strange to have the basic same pain. In some ways more intense then it was just before. But Dr said my Styloid was very stressed, whatever that means, so hoping itâs just the nerves taking there time to settle in after a year of irritation. Any other thoughts welcome, This is such a great forum!!
It is hard not to let your brain go sideways when the pain at the base of your tongue and throat feels similar, but not feeling like a toothpick stick is a good sign! Those areas will definitely be sore from the breathing tube being put in, sitting there for the duration of the surgery and then being pulled out when they finished. That is completely normal to be sore there for several days. If you had any nerve monitoring, which would include putting small EMG needles in your tongue and palette, would also increase your post op soreness. Give it more time before you think anything wild, this surgery really does call for loads of time and patience on the healing end. Hang in there!
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Thanks you you have been such a bright light!! Yes the mind goes a wondering
Can you look at my most recent post on Post op appt timing.
Thank you ronowe for UCLA DR recommendation! Live in LA area and ES database had a few Drâs, but not a lot of specifics on surgeries. I got diagnosed in Spring '20 (ES related health problems for 10+ years and 2020 went to whole new level), but my ENT was only reading off Radiologists summary from CT. Meds have stopped being effective and multiple issues keep worsening so I want to narrow my next ES Specialist search steps.
Did UCLA Dr do a team approach? Any student teaching in the UCLA process? I have some other serious chronic health issues besides ES, thus why I am asking these other types of questions. Each of my other respective Specialists are 50/50 on remembering ES from Med school and quick to let me know theyâve never had patient with ES and would appreciate quick education as I get it. Ex: When my Endocrinologist labeled my wild blood sugar swings as only Thyroiditis w/blood test results as âHashimotoâs Disease likeâ, based on multiple tests, but not a positive for Hashimotoâs, that finally subsided after being diagnosed with ES and initial
start of ES meds. Sorry for long example, but Iâm hoping multiple issues can be adressed from a team approach and multiple specializations can start being educated on ES to avoid misdiagnosis of patients going forward.
Again, thank you for any info on your UCLA Dr and the rest of your post-op story.
Dr. Chhetri at UCLA Med Center is very knowledgeable about ES & has done a number of surgeries. We have another member who is seeing him along w/ at least one doctor of another specialty (neurologist?) but hasnât yet had surgery. FYI, weâve had more of our members see Dr. Chhetri than Dr. Mendelsohn for ES surgery.
Isaiah_40_31, I have to apologize to you personally for not staying in contact with you, nor the ES site. Life has been a series of ES health issues, combined w/my multiple other chronic health issues that have all required ongoing tests and/or procedures w/each of those specialists, ER visit w/subsequent new specialist(s), insurance changes/modifications, etc. Yet, intertwined w/all of it I have had substantial E/S progress w/Dr. Chhetri @UCLA. Have bilateral ES surgery scheduled 1st week of December! It is great to finish 2020 with at least one of my ongoing health issues having a potential solution option, besides Rx maintenance.
Too much to go over during this msg with you and others on ES site, but I do plan to get back to it this weekend (as my mix of health issues allow). Most importantly for now, I wanted to convey my heartfelt thanks for your input regarding considering Dr. Chhetri @UCLA. He has been more than I could have dreamed for and has brought a team approach w/some other related specialists (both direct to my ES issues or my preexisting chronic such as esophageal spasms & 24/7 chest pain or my chronic infarcts of the cerebral) Each Of them has been top of their field/niche within specialization. This has been life changing for me in that my unique medical issues are, sadly, beyond my existing specialistsâ expertise. Prior, these health issues have each and cumulatively only been worsening. Finally, Hope & Progress! Godâs Rx for our livesâŚ
Many thanks,
RBeacher
Hi RBeacher,
No need to apologize! It sounds like youâve been busy with your health challenges, tests, insurance, doctor appts, etc. How great that youâre finally seeing progress in diagnosis & potential treatment for your many health issues! 
Iâm really glad Dr. Chhetri has been a good resource for you. It sounds like youâve given him a challenge with all you have going on. I think doctors like being challenged so they can continue to grow in their knowledge & understanding of the human body & how it can be affected & how to treat complicated issues.
Itâs great to hear that your ES surgery is scheduled. Bilateral surgery will be more challenging to heal from & may take a bit longer. I donât believe Dr. Chhetri prescribes post op Prednisone. I highly recommend you ask him for it though especially w/ bilateral surgery. You may find the some of your other symptoms/problems subside w/ your styloids &/or stylohyoid ligaments removed. It will take time though as healing from ES surgery can take some months & even up to a year+ where nerves are concerned.
I welcome you back to the forum & will look forward to reading your posts when you feel well enough to write.
Hi Ronowe,
I hope you are feeling better. Did you heal completely?
Ended up I had HPV Tongue cancer, finally diagnosed in Dec 2019, Radiation and Chemo for 2 months, I was cleared in June, no more cancer. But have had a difficult recovery dealing with significant scarring on my tongue from the Radiation. 33 days of it. The Dr that did my Eagle Syndrome was terrible and would not see me for 3 weeks after I told him I am worse and have growths on my Tongue. But the Oncology Drs at UCLA were great
T%hanks so much for reaching back out.
Was that Mendelsohn?
Yes, Horrible
Thank you for the update, ronowe. How awful to follow one hard surgery with a whole new problem that was not diagnosed right away. I hope your tongue continues to recover. I had damage to my glossopharyngeal nerve after my first ES surgery, & my tongue was half paralyzed for 9 months. I know thatâs different than what youâre going through, but that is to say I can sympathize w/ your situation. Having tongue dysfunction is no fun!
Please bear in mind that no surgeon is perfect. Even the best have those cases that just donât turn out well. That is why medicine is referred to as a practice. The more a doctor âpracticesâ the better (s)he gets at what (s)he does, but each human body is a little different & heals a little differently so a doctor/surgeon does the best (s)he can for her/his patients & expects a great outcome but can never promise that.
Totally agree
But this Dr was callus not only would he not see me for weeks but he did not infirm me about the Biopsy results or the Scan results. I had to search out other Drs who were involved. My Radiation Oncologist was shocked that I did not know that my scan was good showing no spread. I suffered for 10 days not knowing with continued calls and e-mails with no reply.
And BTW this Dr is touted as an expert on oral cancer. But did not even do a new MRI or scan before he determined ES and did the surgery.
OK, Enough as itâs all in Gods hands and there are really no mistakes.
Thanks again for caring.
Again, I am very sorry for what you went through. I cannot defend Dr. Mendelsohnâs lack of response in your situation. When things like that happen, I wonder if there is some hiccup in the communication system in the office where the doctor never actually receives the messages or if it is truly negligence on the doctorâs part. Regardless, in your situation, I would have expected him to have observed the problem w/ your tongue & acted on it before doing an ES surgery. I am not a doctor & canât pretend to understand how they prioritize things, but I do agree with you, that your tongue should have been given attention first & then ES dealt with.
Even when we trust that things are in Godâs hands, weâre still human & being deceived or neglected hurts. In cases like these, I remind myself - âTo err is human. To forgive, Divine.â Iâm really glad for your attitude. Moving on & allowing your body & mind/emotions to heal are the best things you can do besides knowing Godâs in control & as you said, there are really no mistakes. I love that thought & will keep it in mind going forward.
Sending you a healing hug 
Iâd be curious to know what your symptoms were? I had a papilloma removed from my throat in June last year which I discovered when my neck and throat pain started. (Potential HPV infection). I have been in daily pain since which has spread to the back of my tongue. I also have several swollen lymph nodes all on the same side. My MRI scan was clear, 2 cameras down my throat were clear and 2 ultrasounds show the lymph nodes look normal and see too small to biopsy. I have really bad neck pain at the level of the hyoid bone on the same side.
Hi Dsp17,
Itâs not uncommon for people who have ES to experience worse pain after a surgery in the throat area (tonsillectomy for example). We think thatâs at least partially because scar tissues builds up as the throat heals & that scar tissue applies additional pressure to nerves that are already irritated by ES. Pain at the back of the tongue is a fairly common ES symptoms. I suffered with that among other things. The symptoms of ES vary person to person depending on which cranial nerves are irritated. Having the styloid(s) removed usually helps relieve the symptoms BUT we only recommend surgery if your pain is bad enough itâs affecting your ability to live normally. There are medications that can help ease nerve pain. Also, getting an ultrasound-guided injection of lidocaine mixed w/ a steroid into the tonsillar area can give temporary relief though you can only have the injection done a few times.
You will need a CT scan that covers the area from your skull base to your hyoid bone (done from the front) in order to accurately assess the length of your styloids & whether you have any calcification on your stylohyoid ligaments.