Hi. Eagle s/p R sided tonsillectomy and R partial styloidectomy (intraoral) in Feb 2024 but Dr. was not experienced at this approach. only removed 5mm.
Still in pain a year and a half later. Had some success with in-office steroid/lido injection into stylohyoid area but my surgeon won’t operate again and didn’t refer me for further testing. I’ve since seen pain doc and have R medial branch Radiofrequency ablation scheduled for later this month but my symptoms are sever pain that goes down the whole R side of my body down to my feet. I’ve not had any movement-based imaging. I don’t want to go to a doc who doesn’t take insurance. I can’t travel.
Anyone know who in Seattle is doing investigation into these issues?
I’m sure I have movement dysfunction. I’m seeing a new spine surgeon and had MRI of spine (had a prior C5-7 fusion) but haven’t gotten results yet.
It’s been 3 1/2 years, I’m at the end of my rope. I can’t keep living in this pain and working etc. I can’t believe there’s no know ENT surgeon in Seattle who specializes. Futran is on the list but I was told he’s not doing them anymore, but that was last year. Have to figure this out. Thanks for any jnsight
@MyStylishStyloid - I’m really sorry the surgeon who did your surgery wasn’t more aggressive in removing your styloid(s). We have other members who’ve had to have revision surgeries for the same reason. I can only imagine how difficult it is to work w/ the pain you have. I hope the nerve ablation helps you if you aren’t able to find a surgeon to do a revision styloidectomy for you. It is more difficult since you can’t travel & are confined to an area where we don’t know of any resources for ES except Dr. Futran. Did you actually call his office to set up an appointment with him to discuss ES surgery, or was it someone outside of his office who told you he’s no longer doing surgery for ES? I’m asking in part because we still have him on our Doctors List & will need to remove his name if he isn’t doing the surgeries any longer.
One of our members @Snapple2020 would be a good person to ask re: doctors in your area who would do the type of studies you want/need. You can send her a private message by clicking on her screen in this paragraph. That will take you to a page where you can start a conversation with just her.
I hope you’re able to find someone to help reduce your symptoms substantially. Please let us know how things go with the nerve ablation.
That’s so frustrating! I hope that maybe the MRI shows something useful…the fact that you did have some success with the injection would indicate that you have a problem with the styloid/ stylo-hyoid ligament…
There is an ES facebook group who may know about other doctors. Otherwise as well as ENTs or Otolaryngologists who do ES surgeries, other members have been able to see Head and Neck Cancer surgeons (they do sometimes have to remove the styloids to access tumours in the neck), or Head and Neck Neurovascular surgeons.
Hope that you can find someone to help you!
So this is my latest MRI of the cervical spine. My pain specialist doesn’t seem to be concerned so I’m wondering anyone’s thoughts on this. To give you a recap I had hyoid bone syndrome then surgery, next I had calcification and had a styloidectomy on both sides. Left side is fine this is all problems on the right side since I had it in April. I’m still having muscle spasms, neck is hard and tight feels like a rope down the muscle, swallowing pain and dysphasia on right side of throat, extreme nerve pain in neck and even in my mouth or teeth, also the worst headaches I’ve ever had. The headaches never subside. I’m on nerve pain meds, migraine meds, and pain meds along with just doing trigger point injections which didn’t do much. I can’t lay on the back of my right side of head with compression the headaches get worse. I personally think this has something to do with my nerves being compressed or entrapped but I don’t know anymore. I’m seeing a new ENT on Wednesday and then a neurosurgeon at the end of the month. Talking to my pain specialist we think these are all tied into each other seeing they are all on the same side of my head and neck but no one is really seeing much on the MRIs I’ve had. Any thoughts would be much appreciated. I feel like I’m at a loss anymore and starting to feel depressed. My family and kids don’t understand and life is just becoming so hard everyday. Thank you
@ShelbyH - The type of MRI you need to see nerves & find entrapment or compression is a FIESTA or CISS MRI. Regular MRIs don’t show nerves. Your report indicates that the radiologist/referring doctor were only looking for spinal nerve compression possibly being caused by herniated or bulging discs. The symptoms you’re describing are more the type the cranial nerves cause when irritated i.e. the trigeminal (face/mouth/headache), facial, glossopharyngeal (swallowing pain/dysphasia), vagus (swallowing/dysphasia), & accessory (neck pain/muscle tightness).
Have you had a CTA &/or CTV to check for vascular compression of either your internal carotid artery or internal jugular vein? Both of those can cause migraine level headaches, but so can the trigeminal nerve as noted above.
I’m very sorry you’re getting nowhere as far as finding what’s causing your current symptoms. Have you had a follow-up CT to see how short your styloid was cut on that side? My surgeon cut one short but left the other longer & I had to have the longer side redone last fall as my face pain had come back.
No I haven’t had either of those. Just a regular mri on the front and the back cervical. When I see the new ENT on Wednesday I’m going to request one. My pain specialist is very new to this because my issues are so rare. I know my styloids were cut pretty short as the right side I was told was already short. My carotid arteries were just checked through an ultrasound so I know those are ok as I was told by my heart dr. I guess my question is do you think the ENT or neurosurgeon would be the best Dr for my situation?
Probably the neurosurgeon would be best since they deal w/ nerve problems, however, if the ENT is familiar w/ ES & the nerves it can affect, it might be good to start there & get a second opinion from the neurosurgeon. Unfortunately, neurosurgeons aren’t usually very knowledgeable about ES so you might need to provide some education especially about the nerves that can be affected.
I’m sorry that you’re having so much pain still after surgery… So I am understanding right that all this pain started after your surgery on the right side?
If the muscles are that hard and tight, it could be that they’re trapping some of the nerves, have you tried muscle relaxant meds? I’m guessing that you probably have…
It might be worth having a look at the Ben’s Friends Facial pain group too & seeing if they have any suggestions : Welcome to Living with Facial Pain Patients Support Community - Living with Facial Pain
I hope that the neurosurgeon can help you, sending you a hug
I have and I tried trigger point injections and Botox. There has to be a reason this is happening but they just aren’t seeing it yet. Started with choking on food then pain swallowing then muscle hardness and spasms then nerve pain in the neck then headaches. My pain specialist is doing an occipital nerve block on me next week so that should tell us something if it works or not. Tomorrow I’m seeing a new ENT as mine is no help anymore. When things aren’t black and white I’m finding these drs are not very helpful. It’s almost as if he’s dismissing my pain and trying to tell me nothing is wrong based on the MRI of my neck that didn’t show any nerves. Thank you for all the advice and support I’m very grateful for you all.
I’m glad your appt. w/ the new ENT is so soon. Please let us know if the new doctor takes your pain more seriously & especially if he know about & understands the problems ES can cause.
I agree w/ @Jules that nerve entrapment can cause terrible pain. Some people develop significant internal scar tissue while healing from ES surgery so that could be a possible cause of nerve entrapment which could be causing your symptoms.
So the new ent I found doesn’t know much about any of this. It’s kinda scary that these are the people treating us because I’m finding a lot of ent that do surgeries on the head and neck never even heard of hyoid bone syndrome or es. Anyways I made a few appointments with different ones but it’s gonna be about a month to get in. Pain specialist did occipital nerve blocks today for the headaches so will see how well that works. My new chiropractor I’m seeing( as I have pretty much started over fresh with all my drs) took X-rays last week that were 3-d he said he doesn’t see anything wrong with the muscles or spine but did notice my hyoid bone that I had done months ago doesn’t look right to him almost as if it’s sitting in a awkward direction now right towards the muscle in the neck that’s hard and spasming. I’m bringing him my scans tomorrow to look at before and after surgery. I remember one of you guys mentioned there was a girl on here that had surgery and then they finally found her hyoid bone had turned or moved. If you guys remember or know where that post is please feel free to send it to me. My symptoms are very similar to what I had before I’m just getting these bad spasms on both sides of my neck now. That’s pretty much the only thing different not sure why it’s happened on the other side of my neck now but I feel like there is a lot of pulling going on. Thank you again for your help
I’m sorry that the new ENT isn’t helpful, but glad your chiro is working with you to see what’s happening! I can’t think off hand who the member was you asked about, I found this discussion by @BraveKat , but not sure if it’s helpful, her surgery wasn’t very successful: Rotated Hyoid Bone - symptoms? - Symptoms and Treatments - Living with Eagle
