Risks of paresthesia or other nerve problems with extraoral approach

General
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Hi everyone,

I'm new to the site and was hoping for some feedback. I'm in Australia, so unfortunately I don't have access to the doctors that are in the US. I have considered travelling overseas for treatment but the costs of a private procedure in the US is just too high.

A background on my situation. Tonsillectomy that left a lot of scar tissue 13 years ago. Started getting symptoms about 3 years ago of sore throat, globus sensation, straining to swallow, voice fatigue and some other milder symptoms - all arising from the area of my right tonsillar fossa. Went to an ENT who tried to tell me I had glossopharyngeal neuralgia. Prescribed carbamazepine which had no effect after 1 month and I stopped it. I asked him for a CT and MRI after reading about Eagle's syndrome as my symptoms and history of tonsillectomy seemed to match. The scans showed "excessive calcification/ossification of the stylohyoid ligaments bilaterally". My ENT told me that the surgery to remove the styloid process is very "unrewarding" and that he wouldn't recommend it. He said that he "thought" that he had only done it once before (yeah right). He did identify that the process could be felt when pushing on the right tonsillar fossa. I went on to see another 3 ENT's who all said virtually the same thing - that they wouldn't perform the operation. I found this odd as most articles I had read about it stated a high success rate.

Skip forward another couple of years and my symtoms have evolved. My main problems now are a lot of mucle tension in the area, pain on the right side when I try to pull me chin in for correct posture, lots of pain in the muscles on the right side at the back of my neck and recently (last few months) have developed some wheezing when lying down/waking up in the night (related?). I have felt the tip of the styloid process change position and get harder over the last couple of years. There was a 3mm wide hole left in my tonsillar fossa on the right hand side and if I stick my little finger in there I can clearly feel the process with only a small amount the pharyngeal wall separating it. It is a little tender to push on but I don't get excruciating pain from it that some people appear to get. I feel like it affecting my posture in general which exacerbates my neck and shoulder pain.

Recently I got annoyed with the symptoms enough to see a new doctor. He referred me to a new maxillofacial surgeon in my area. I saw him and he ordered a new set of scans. Before getting the scans done, he told me he would be willing to do the surgery - intraorally or extraorally whichever I preferred. When he explained how the operation would be performed I asked him about any loss of function from cutting the attachments to the process. He told me that they should be preserved as the aim is to scrape the periosteum back with the attachments intact and only remove the bony part - but I think he was talking about the intraoral approach. He admitted to never performing the surgery before but has operated in that area on neck cancers and said he has a good knowledge of the anatomy in the area and is not concerned about going in there. All I know about him is that he has worked in the US before and also in the UK.

I saw him again yesterday for a follow up after the scans and I was planning to agree to go with the intraoral approach - but here's where I ran into trouble.

He told me that my styloid process was indeed larger and more calcified on the right hand side where all of my symptoms are. They scans apparently showed no other abnormality to explain my symptoms. He also told me that the styloid process is sitting very close to the carotid artery (mine in particular or styloid processes in general?) and that he would not do the surgery intraorally. I asked if the process was likely to cause any problems for the artery if I don't get it removed and he said no, but during intraoral surgery if it was accidentally damaged it would be very difficult to deal with.

He warned me that the risks of the extraoral approach are very real. He said that it is likely that I would get some numbness in the chin or lip that may or may not go away in time. Of greater concern to me was that he said that damage to the major cranial nerves that are exposed during the operation could cause loss of sensation or function of the tongue, difficulty in swallowing and possible every loss of movement of the entire shoulder. When I asked him to quantify the risks he told me about 5% chance of significant nerve damage. At very least he told me that I could expect that the whole area will feel different with the inevitable scarring and there may be some change to range of motion when turning my head. He told me 3-5 days in hospital with a drain in and then at another week off work.

This has left me absolutely stumped on what to do. Unlike some of the people who have really severe symptoms, I am able to carry on a relatively normal life as I am, but the quality of it is significantly reduced. At very least I get pain in my neck everyday and pain whenever turning my head or tucking my chin in.

Without any real knowledge of the positive effects of surgery in my case and the risks he discussed, I am finding it very hard to weigh up the risks vs benefits. This surgeon usually operates on cancers so he told me the decision is usually very simple for his other patients. There is very little known about ES condition in Australia and I don't believe there is anyone in the country that is truly experienced in the surgery. Due to the fact that the process can be felt I thought that intraoral surgery would be a simple, effective and safe option, but since then I have read quite a few reports that extraoral can be better because it means that more of the process can be removed, eliminating the potential need for a second op later.

Can anyone tell me if they have had ANY such problems after extraoral surgery that weren't there before?

Does anyone know if the attachments to the process are still preserved when it is done extraorally?

If not does this cause a change in ability to swallow, control the tongue etc.

Has anyone been told a similar story about their process being too close to the carotid for intraoral surgery to be safe?

I've attached a slice of my recent CT.

Thanks,

Mark

440-scan.jpg (64.2 KB)
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I am a fan of the extraoral/external/neck approach; I believe it is favored more for safety reasons. I specifically want the external approach when I do my surgery. From what I read, the risk of infection is lowered, and visualization is better. I read other reasons-can't remember them at the moment, but a few articles seemed to imply that intraoral was outdated and not preferred. This is just from my research, which isn't inclusive of everything out there, though!

Elongated styloid processes would be close to the carotid, and I think he probably was also specifically noting that yours was close to the carotid. From what I gather, that's the 'thing' that makes the surgery more challenging, is the vessels in the neck and their proximity to the styloid when it is elongated or calcified. I would guess that it's the 'thing' that makes a good number of docs decline the surgery and defer to a more experienced surgeon in this area.

The attachments are not preserved extraorally. However, there are multiple attachments. I specifically asked this question to my surgeon, who is also a skull base tumor doc. He said I would not notice or swallow differently because of attachment problems or anything of that nature. I even asked if the hyoid bone would sit at an angle with one side attached to only one styloid; he said no. I look at a lot of anatomy books, and I have a hard time in that area, seeing what is attached in multiple ways.

There is a nerve that is going to be touched and moved with the extra oral surgery. This might cause temporary swallowing issues after surgery. It should go back to normal after swelling is down. There is another nerve, the facial nerve (VII), that is near the top of the styloid. This one is one that my surgeon is concerned about, and he favors cutting the styloid just below the area of this nerve, so as to not bother it at all.

I am concerned about the number of 'redo' surgeries that I read about on here, so you are wise to consider these things.

I am no expert...just relaying what I've come up with....don't take it as gospel! :) Hope this helps.

You may have already done this, but do a search on these ES forums for 'Australia'....I thought we had a couple of you here that found a doc?

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Thanks Tee. That's quite reassuring about the extraoral approach being more preferred these days. I had another look on the forum and found that there is an ENT in my area that has done the surgery on a member of this forum recently. That is really great for me. I think I will ask my doctor for a referral to him to get a second opinion on the risks. From what your surgeon has told you, it sounds like there are definitely things that can be done to reduce the risks during the surgery and you'd think any experience in it, even if it was only one op that he has done, would reduce those risks (provided they're a competent surgeon!).

In my case it would be really reassuring to here some people that have had the extraoral approach confirm that they don't suffer from any sensory or functional complications.