I have been having worsened swallowing discomfort and throat irritation ever since I had an operation to disconnect the right stylohyoid ligament from my hyoid 3 years ago.
The surgeon encouraged me to have an operation which he described as a simple and safe alternative to having a styloidectomy. At worst he said, it would not help. He described the operation to me during the consult as resection of the lesser horn of the hyoid on the right side and removing a portion of the stylohyoid ligament. The op report says exactly the same - “identified SMG (submandibular gland), identified DM (digastric muscle). Resected lesser horn. Stylohyoid ligament noted to be thickened”. That’s it - 4 lines of writing.
The surgeon changed his attitude significantly when I woke up from the operation when he told me it was a difficult operation but went ok. During the follow-up appointment 1 month later I told him that my swallow was significantly worse and that it felt like something sharp was sticking into the back of the throat when I swallow. Also there is muscle tension causing a globus sensation and the whole area feels unstable. Also sometimes when I swallow, the thyroid cartilage pops to the left and catches on something (?transverse process of vertebrae) only to pop back into place a few seconds later. This happens in various head positions.
He told me that there was no way that hyoid surgery could cause swallowing issues. I have since been told that this is simply not true. I have also been told by various specialists that they would not have attempted such an operation - which is easy to say in retrospect.
The same surgeon agreed to do a styloidectomy 5 months after this initial operation. At this point I felt I was unlikely to find anyone else in Australia who would do one. I asked if he could do it via external approach for more complete removal but he said he would only do it via an internal approach.
He managed to only remove between 10 and 15mm of my approx 43mm process. In the process I developed quite major TMJ problems on the affected side which have not improved in the 2.5 years since. I had not had any TMJ problems prior to this. It seems that he may have overstretched the jaw during the operation damaging the external ligaments. The disc appears intact and in position on MRI. He also stated that he removed all of the attachments from the process which I don’t feel should have been necessary given the amount removed. Cutting the stylomandibular ligament may have contributed to the TMJ issues. There is discomfort behind the right jaw line where I can feel what I assume is this ligament bunched up at its insertion point. I also now get paraesthesia (tingling/tugging) on the right side of my tongue whenver I open my mouth widely and in certain head positions.
I recently saw a new ENT who ordered a CT scan. This is the first CT scan that I have had since the op as even though I asked the surgeon who operated to do one he refused. Also the radiologist that specialises in head and neck was supposed to read the scan, some other person did. It was very inaccurate - described the left styloid to be longer that the remaining portion of the right - which it is easy to tell is wrong on the 3D images. He also was mistaking a segment of calcification in the left (intact) stylohyoid ligament as being a tonsillolith despite the fact that the referral clearly stated that I had a prior tonsillectomy.
I asked for a second opinion from the radiologist who was supposed to read it and finally got one after 2 months of hassling them.
The report shows that a portion of the right greater horn of the hyoid was been removed. This was never told to me. I am not sure why it would have been done but perhaps to try to gain access to the ligament. It is only a small portion but obvious when comparing the pre-op CT with the post-op CT. I believe that this might be irritating the throat. After reading the report I stuck my finger down my throat and felt around and it is actually easy to feel the sharp point just sitting in space - it feels like a nail with only a thin layer of mucosa over it. I have very little gag reflex on that side.
The report also states that the lesser horn appears intact. So am not sure if he even did the intended procedure.
I can’t believe that I sat across from this guy and told him that it feels like something sharp is sticking into my throat from that area and he said nothing. The report also clarified that the right styloid remains longer that the intact left - 28mm vs 22mm. I asked for angles of the process to be assessed and the report stated that the angle on the right (symptomatic side) is 60 degrees from the skull base in the coronal plane whereas the intact left side is 85 degrees. Some studies have proposed that a smaller angle (indicating a medially pointed process) correlates with symptoms more than length.
I have included a few 3D images. I also shows that the whole hyoid/thyroid assembly is slightly displaced from its original position. There are also 15 surgical clips in my neck distributed right from just under the skin through to the mucosa. The report said that it was impossible to determine if these have caused a fibrotic change that may be contributing to issues. This makes me think that it is a possibility.
I know what some people are thinking - sue the guy. I am not the litigation type but even if I wanted to proceed with a compensation claim I could not. I just want relief from my symptoms. In my state in Australia there is a strict 3 year timeframe to start proceedings for medical negligence claims which has passed. In addition to that I would have to get an expert to state that my issues were definitely caused by the procedure and that I had permanent disability which is difficult to say as I can still eat food and drink. Also I had pre-existing swallowing discomfort.
I would not have agreed to this procedure if I had of known that it was not as simple as he made out. Now I am in a position that I have had 2 surgeries, each with its own set of new problems and all of my pre-existing ones too. This new ENT does not want to operate on me just like the previous ones that I have seen since the op (I think i’m up to 4 ENTs and 2 oral surgeons). He wants me to see a neurologist. I have already seen 2 and they both said there is nothing they can offer.
I have completely exhaused conservative measures with physical therapists, musculoskeletal doctors, speech therapists. I am now at the point of considering further surgery - but what? More complete removal of th styloid process maybe. That wont help with any issue caused my the hyoid though. Perhaps some kind of procedure to remove the sharp tip of the hyoid bone… There is no way I am going to be able to convince someone to go back in there.
People living in the US should consider themselves lucky that there are at least a couple of surgeons that take the right approach to surgery for Eagle’s Syndrome. I wish I had access to them but even if I could find someone to help me, being the sole wage earner for my young family I simply could not afford to do so. I am in a deep hole now.
I wonder if anyone has had a similar operation on the hyoid which has then led to swallowing issues. I have read journal article describing total resection of the greater horn of the hyoid without it causing issues - but these articles are often bias as they are written by the surgeons who do not want to report negative outcomes.
I also wonder whether anyone has had issues on one side but proceeded to have both styloids removed. There is some calcification at the hyoid end of the left ligament and I do wonder if there is tension pulling ti to that side. I would be reluctant to have the same surgery on the other side though after my experience.