Hi All,
I had a sharp bony protrusion in my mouth that the doctor said he would shave but instead was fully
cut. It was pterygoid hamulus. I am having many issues since. I think too much was removed. Has anyone else had this surgery?
Ky
I really don’t know much about the procedure you had but, I did read when I was having my issues that going through the mouth was less risk but more painful and had more issues due to limited view.
@Kyrajean - How long ago was your surgery?
Your surgery was long enough ago that you shouldn’t still be in severe pain if the PH was the only thing causing your symptoms. My guess is that it’s your elongated styloid(s) that are to blame at this point. ES symptoms can get worse over time so that may be why you’re experiencing worsening rather than improvement of symptoms.
If you’ve had a CT scan that shows your styloids are elongated, I’d recommend you make an appt. w/ Dr. Costantino who’s not too far from you & have him evaluate your scans. He works a lot w/ people who have vascular ES, but I expect he’d also see someone w/ the non-vascular version. •Dr Peter Costantino, Lenox Hill Hospital, Manhattan 212- 262- 2929
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS
Another option is Dr. Hackman in NC - •Dr. Trevor Hackman, UNC Ear, Nose and Throat Oncology Clinic – in the N.C. Cancer Hospital, 101 Manning Drive, Chapel Hill, NC 27514, (984) 974-6484
I’m sorry to say the image you sent is not a body area I’m familiar with so I’m not sure what it shows.
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Thank you so much. I think the issue is that too much bone was cut from my mouth leaving not enough bone for the muscle attachments. I am having function difficulty talking and in pain where the surgery was. Do you think its possible for the hamulus to regenerate?
Hmmm. What you suggest is possible but your symptoms sound more like nerve damage than what you’re suggesting. “The greater palatine and nasopalatine nerves both branches of the maxillary nerve innervate the hard palate, whereas the lesser palatine branch of the maxillary nerve supplies the soft palate.” (Anatomy, Head and Neck, Oral Cavity (Mouth) - StatPearls - NCBI Bookshelf)
A nerve pain medication such as Gabapentin, Amitriptyline or Carbamazepine might help calm the nerve pain in your mouth. Trouble w/ talking could be due to the pain in the roof of your mouth, but it could also be a function of your elongated styloids. Vocal cord & tongue dysfunction are both possible symptoms of ES. Can you describe what makes talking difficult for you?
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The tip of nose is also painful. But- the trouble talking feels like the palate muscles are hanging down- unhooked from hamulus hanging down and inwards towards palate, like they need to be sewn up.
Have you been back to see the surgeon who did your surgery? If not, it would be a good idea to see him/her if possible to address your post op symptoms.
Nose pain is potentially from the trigeminal nerve. I’ve had nose pain, not at the tip but near there that was confirmed to be trigeminal nerve in origin.
Not yet. He lied about what was done so I am not happy. It was just to be the tip of bone shaved but the entire bone was cut. Is there any possibility that it can regrow, like styloids?
I don’t blame you for not going back then. Was it an ENT surgeon who did your surgery?
My guess is the pterygoids probably won’t grow back. Styloids regrow due to pressure put on them by muscles & other soft tissues & external forces caused by head/neck usage &/or injury. The pterygoids don’t have those pressures on them. Styloid regrowth is somewhat rare as they don’t tend to don’t regrow if they’ve been cut back short enough.
No an oral surgeon. It does not feel right at all. I dont know what to do. It feels like there is a bone missing from my skullbase. I wonder if there is any way to graft bone back or do some type if implant. My skull feels lopsided. .
There was a girl that went to Mexico and had this procedure then passed away. How was she post op?
Also— do you think it is possible to do some type of bone gradt?
The gal you mentioned was from Canada, & she felt really great after her combined ES/PHS surgery in Mexico but only for a short time. She had some other health issue(s) that were passed off as nothing by the Canadian medical system & whatever that was, it took her life a year or more after her ES surgery. It was a very tragic situation.
I would expect a knowledgeable surgeon could do a bone graft for you. I asked my dentist about the type of doctor to see for PHS, & she enquired of an oral surgeon who said ENTs are typically the docs who take care of PHS. We recommend a skull based ENT surgeon for ES surgery so perhaps the same surgeon could take care of both things for you.
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Do you know if when she had the hamulus cut, if they were resected partially or fully? I wonder if bone could be grafted in that area?
I am in a really scared and desperate place. No one seems to have any clue about this or they just write it off. But since the bone was cut, I cant breathe, talk and my left nostril collapsed.
Best,
Kyra
@Kyrajean -
Your symptoms sound really awful, & I’m sorry for the suffering you’re dealing with. I hope we can help you find someone who can diagnose & treat you so you can fully recover.
The gal from Canada sent me pics of the the bits of PH that were removed as well as of her styloid segments. My recollection is it was just two pointed bits of bone - not much was taken off at all.
I highly recommend you go see Dr. Costantino for a consult. If he’s too far away, he’ll do a video initial consult. I think he would be an excellent place for you to start. He seems knowledgeable about a wide variety of ENT related problems & has demonstrated he’s a very competent surgeon.
•Dr Peter Costantino, Lenox Hill Hospital, Manhattan (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS
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Can you explain your scan image to me please or label what we’re looking at. Is the dark area in the lower section where bone was removed?
We all make mistakes regarding our medical care out of ignorance. It’s easy to trust that a doctor knows what (s)he is doing by virtue of the fact (s)he has the M.D. after their name, but sadly, not all of those professionals are good at their jobs. I have been in your shoes so I understand how frustrated you feel.
The hooked bone on the right is the normal hamulus. The bone on the left is the cut bone.
It does not feel right talking which is really scaring me.
