Hi Anthony,
Im 8 weeks out and I was able to look all directions within 1 day after surgery. I am hypermobile though and have extra-range of motion in general. The 1st month I didnt notice much issues looking down and have only noticed it more the past 4 weeks primarily looking down and reading my phone. Im noticing more headaches and general neck discomfort. I only noticed the looking up issue last week when I was watering hanging baskets.
As for 1st bite issues, they havent been all that frequent but there are times that when I bite down on food it hurts in the jaw. I see it more earlier in the day when I start eating food. It was very hard to open mouth early on and I am still having some issues with that. I have that same feeling of the jaw being locked and unable to relax it. My left ear is still hurting and comes and goes. Its not uncommon after surgery for other side to kick up but mine so far has not been bad.
I have been getting massage including cranial-sacral work to help release some of thsi neck and jaw tension. My massage person has been pretty conservative and only this past week (week 7) has she started digging into the scar tissue area and working more aggressively around the ear and skull above the ear (Temple area). I actually noticed a little bit of relief this past week.
I went Monday to my neurologist and got a variety of injections. The temple area (temporalis muscle) was locked up tight like a drum. I got botox in that area on both sides to try and get this to relax. I then got a combo of steroids and bupvicane in jaw area. Doc mentioned a muscle behind the TMJ joint was super tight and gave be extra steroids to calm it down. Im still pretty sore from having needles stuck in there but he said I should get relief within 3 days. I will say I noticed within an hour, the jaw relax and the pain subside when opening the mouth but it returned after the bupvicane wore off so it was short-lived. It was sure nice while it lasted!
As for body temperatures, remember you still have alot of anesthesia in your body and it takes me 3 weeks to feel more “normal”. Im not surprised you are getting tingling. Im still getting that in my shoulder sometimes. I noticed after taking pain medications, that feeling of being hot like you describe. Hope that helps
My favorites were mac & cheese (Trader joes) and mashed potatoes. They go down easy and settled the stomach. These items were microwavable. I over prepared with the food and bought soups too and never touched them. I did enjoy watermelon.
Well firstly, I went for my post op dr visit today and the doc told me that my styloid was 3.2 centimeters which isnt particularly long but he did say it was very rigit. But before i got to the office, I had to walk like 6 blocks in very hot weather and i must say “I almost fainted”. Between the neck pressure, body heat, general pain and started to feel dizzy really almost put me over. I mentioned it to the doctor and he said that its not possible and that it could be something else. I do undertand that i now know i have small fiber neuropathy (diagnosed today) which could make sense as to my temp problems but directly after the surgery i have been feeling extra sensitive to the temp (hot or cold). But from his look he said that he didnt think its possible.
I ask myself, shouldnt it be related due to other stories ive heard here and doesnt the vagus nerve run around that area. Plus when that area in my neck starts to feel pressure i notice that my temp issues gets worse. Doesnt it make sence that maybe becuse of the inflamation around that area, it compresses the vagus nerve or any artery that could control body temp also? and if so, how come a very experienced doctor doesnt think its related to the surgery in the neck?
The doctor took out my 1 stich and the incision is barely noticeable. Which is a worry i had before the surgery. He said i can wet the area now but mentioned to be careful tanning that area since it could get darker and become more noticeable. He asked me if i got any vision problems and i have not. I have a 3 month post op visit to see him again.
I have started to move my neck maybe like at a 45 degree angle, which means that its about half way. As for the looking down part I cant because i notice that my neck gets inflammed and starts to hurt around the incision.
Around my neck i have pain and it feels like burning pain especially when air passes through that area. This could be from the surgery but Im not fully convinced.
My ears are still burning which i hate is out of all my symptoms its the worse for me atleast. I never developed first bite which atleast is a relief. Eventhough I still cant really open my mouth for like more than an inch. So, i have not been eating any solid foods in 9 days Post Op. I tried eating small cute chicken and it just begins to generate pain on that left jaw.
Thats great that you have a person that can do a massage. I think that my tmj muscle is also very tight because when i try to open it i can feel it from empeding me to open it.
Hi Anthony,
I want to reassure you that what you think is causing your symptoms is probably at least mostly correct vs what the doctor thinks which is mostly incorrect. Even very experienced ES doctors don’t often know the extent to which ES can affect a person’s body. They understand the larger obvious symptoms but the more obscure ones are usually dismissed as caused by something else. If I were a betting woman, I would bet that as your inflammation goes down, the symptoms you have now, including the temperature sensitivity & burning ears, will gradually go away.
You’re doing the right thing by listening to your body & not moving your neck into positions that cause further pain/inflammation. Your full range of movement will return. Again, recovery from this surgery is a game of patience. By two months post op, much of what you’re experiencing now will be history.
I’m not sure if what the doctor said about your scar getting darker from the sun is accurate. The bigger concern is that the new skin is more susceptible to sunburn & therefore skin cancer. Dr. Samji recommended using Mederma w/ sunscreen on my scars for 6 months after surgery. It’s available on Amazon & at most pharmacies like CVS, Walgreens, Rite Aid, etc.
I am sorry you were diagnosed w/ the small fiber neuropathy. Is there anything you can do for that?
Hey Anthony,
It makes sense if you have swelling, it could press onto vagus nerve. You would think this doc would have a better understanding of how that vagus nerve area impacts other parts of your body. My daughter has POTS (Postural Orthostatic Tachycardia syndrome). She as well as I have the small fiber neuropathy. If you google "autonomic"system or dysautanomia you will find more info on how much the autonomic system impacts the body especially how it impacts control of body temperature. It is a control center for blood pressure and many body functions so when it goes awry, everything can go out of whack. My daughter started passing out at age 7. They first diagnosed it as vasal vagel response and that it was normal. I knew it wasnt normal. Well after we discovered she passed out in hot conditions or after running in PE class, they called it ashma induced exercise. eventually it was a “nervous system” disorder. Then at age 13 we were lucky to meet a pediatrician who was familiar with POTS. Shortly after it took her down w fatigue and she was unable to go to school and was home schooled. She is now 26 and really no better. Im not surprised you felt dizzy in hot conditions. That is a huge trigger for my daughter and we avoid it as she will pass out. The best thing you can do when that dizziness hits is to lay down and get to cool environment. Try to stay hydrated. Also look up Raynauds Syndrome - also a temperature control issue and nerve thing.
Im still avoiding chewing much so my jaw doesnt hurt. Hang in there. Your only 10 days out. Your body is healing.
It’s still early days Anthony, hang in there & try not to worry. Nerve issues do take a while to heal, & can be weird! After both surgeries I’d get a sort of weird ‘whoosh’ & burning up my ears, especially if I had a shock or something made me jump! It’s improved alot, but I still get it occasionally.
Curious about the small fibre neuropathy- how did you get diagnosed with that, did they do nerve conduction tests?
Thinking of you, hope you see improvements soon!
Well no its been 9 days and i feel much better where i can eat solid but soft foods like salmon and mashed potatoes (Which awesome). I have always been a smoothie nut but not being able to eat “real” food is tough. In the process ive lost 9 pounds since the surgery.
Isaiah i think your right about docotors not really understanding the symptoms because it vary greatly from patient to patient. Their job is to take out the styloid not fully understand it from what ive seen.
The doctor told me to not expose it to the sun as its been knowing to make scars darker. And he said that creams and pills dont really work from studies. He also did recommend sunscreen but thats it.
For the Small Nerve Fiber neuropathy, the doctor told me to take lexapro which i started to take. But she believes that it could go away because it was after a virus i had which im hopping is the case but with my luck i dont think that will happen. Ill probably have to live with it. She said it could take a long long time…
Hey snapple2020, Thats what i thought about the swelling and body discomfort but the doctor said not. I have passed out about 4 times in my life and it could be correlated to the small nerve fiber but i only felt the tingling since last year. Thats insane how she started to pass out at 7 wow. It must have been a tough road for you and her. Im curious to know more about what you feel and how you got the small nerve fiber? If you could private messege me i would appreciate it to know more about your story.
Hi Jules, I had a skin biopsy at columbia Presbyterian in NYC. Previously I had alot of nerve conduction tests but never showed anything. The only way to test the small nerves is through the skin biopsy from what ive heard. I always feel the tingling but its usually not that bothersome, but after the surgery it has become very bothersome with the skin burning sensations and the body temperature. I hope after i heal from surgery that i atleast go back to where i was just with the tingling. I would lie if i didnt say that i have been upset to hear that i have small nerve fiber since i have lived such a health lifestyle. So now its somthing else to add to my list of problems. I think i will have to go to like a pain management place because im having a hard time being indoors with air conditioning now in the summer time because the nerves on my skin are alway activated and it makes it difficult to sleep at night…
Poor you, sounds like you have so much to deal with right now, hopefully things will heal & settle down soon…thinking of you.
well, I would disagree with that doc. Alot of folks here have vagus nerve issues after surgery. My daughter had what is called a QSART test while at Vanderbilt that diagnosed the small fiber neuropathy. This test is via heat sensors on the skin. I haven’t done much research on it lately but my understanding is that it has a genetic component to it. It was done as part of a POTS inpatient study and common in POTS / Dysautonomia. 50% of POTS patients also have Ehlers Danlos (Collegen defect) Myself and to some degree all my kids have EDS. I have no doubt that is genetic. They dont know yet what causes the POTS or what triggers the autonomic system to go off kilter. Some say genetic, some say induced by virus.
Quantitative Sudomotor Axon Reflex Test (QSART)
The QSART measures the volume of sweat produced by this stimulation. QSART is used to diagnose: Painful, small fiber neuropathy when nerve conduction test results are normal. Disturbances of the autonomic nervous system, which controls the sweat glands, heart, digestive system, other organs, and blood pressure.
I wanted to share that I went to the dentist yesterday to make sure that my upper molar tooth pain was not a dental problem. They took x-ray and no problem with teeth however he did say my sinus cavity close to the teeth. I asked him about the ear pain and TMJ issues that did worsen after surgery. Opening mouth is still problem and causes pain. He can tell there is some joint dysfunction and probably explains the crunching when I open my mouth. Based his exam and talking to me, he says most all the current issues including ear pain is from the trigeminal nerve bundle close to the ear. He told me to give the steroid injections more time to kick in. The masseter muscle I think is the culprit as I cant get it to relax and that is what is hurting when I open my jaw. He did say it was a little thick on the surgery side. I only had botox in the temples and steroids in tmj area. He suggested getting botox in the masseter or come back in a month and get muscle relaxer. Argh. Slowly but surely, I am narrowing it down. Hope that helps others dealing with this jaw pain.
Thanks for all the info, Snapple…very helpful, & I hope that you soon get some relief from the steroid injections. Good that the tooth is okay though!
Thanks Jules!
I found a very concise explanation about the masseter and likely problem for many with the jaw/ear pain:
The masseter muscle is a facial muscle that plays a major role in the chewing of solid foods. The muscle is shaped similar to a parallelogram, connecting to the mandible (lower jawbone) and the cheekbone.
The masseter is divided into two distinct sections, the ‘superficial’ and ‘deep’ portions. The superficial portion of the masseter is the thick and tendon-like portion of the muscle that connects to the cheekbone, while the deep portion is the smaller and more muscular portion of the muscle that connects to the mandible.
During chewing, the masseter is assisted by three other muscles: the temporalis, medial pterygoid, and lateral pterygoid. The four muscles work together to pull the jaw down and back up again. The masseter is the key muscle that pulls the mandible upward. All four muscles are connected to a single division of the trigeminal nerve.
Great info, Snapple2020. Thank you!!
That’s interesting, thanks!
How are you doing now. Sounds like it’s been Ruff. . What were initial symptoms? Was your tongue swollen or did u lose your voice. Why would u get tingling in extremities?