Shane Needs Surgery and We Are Worried / Squirmy and Grubs

I was in dentistry, as a dental assistant, for over 14 years at a dental school....please go to a hospital dental clinic where they are very well prepared and used to cases that are more difficult for "regular dentists and oral surgeons". Wishing you the best Shane!! You will be fine!!!

Hi! Adult with craniofacial defect here. Often dental clinics located within hospitals specialize in treating people with unique situations including people with mobility limitations. It’s also really helpful because if the persons airway or muscle tone is not typical they often have tools and techniques that work better for some people. Obviously our situations are different but this was a game changer in my life. In my situation it means an actual anesthesiologist is in the room doing any necessary anesthesia and the dentists/doctors use pediatric sized tools since I can’t completely open my mouth.

I’m a pediatric dentist who sees lots of patients with complex health care needs. We do see patients in their wheel chairs and we see adult patients who have special needs. In your case, I would definitely recommend your treatment in a hospital setting. With limited opening, if a tooth particle breaks off and gets into your airway it would be a big problem. You need to have as controlled an environment as possible to protect your airway.

Shane as a practicing oral surgeon I can't emphasize enough that this procedure needs to only take place in a hospital setting. Besides the oral surgeon and his team there should also be a board certified anesthesiologist and a RN present in case your airway should become obstructed. I'm not trying to frighten you but these are actual scenarios that have the potential to occur. Much luck to you.

As an old surgical nurse, I’d definitely have your oral surgery in a hospital setting and NOT in an oral surgeon’s office. It’s for your safety! The concern about anesthesia is most likely related to maintaining your airway and not the medications, hence being told in the past about possibly needing a trach. As a general rule, tiny mouths present issues with airways. Good luck, Shane. Keep us posted.

My son has SMA also, he’s 22 and most recently had surgery 3 years ago to place a port in his spine for his spinraza injection and did just fine coming off the vent post surgery. Also, Gillette has a dental clinic. Check there as they deal with people with disabilities all the time. We are from MN too. So sorry you are going through this!

My dad is an oral maxillofacial surgeon and one of his patients had a similar case to Shane"s. I just asked my dad and he said its possible to remove the tooth without breaking the jaw! Wish you guys all the best:)

Holding your partner on your lap while they get an x-ray, that’s love. You two are amazing

I'm a wheelchair taxi driver and I've had so many dentists in my taxi to see patients whose chairs wouldn't fit through the door. Where there's a will, there's a way!

It makes my heart break every time you mention accessibility issues you encounter. Things need to change. That is just so effed up. Thank you for teaching us all how to be better humans. We need to do better!

This is crazy. As a dental hygienist who works in 2 offices - we have never ever turned patients down in a wheelchair. We do everything we can to accommodate anyone no matter what!

A tip about stretching Shane's jaw: don't just stretch it down from the front of the mouth. Instead, find the place where Shane's jaw connects to the skull on either side of the face. You can find this by placing your fingers on either side of his face and have him "chew." It's not the temples by the eyes, it's a spot that's about an inch away from the center of the ear. There are ligaments here at the TM joint and what you need to do is take your thumbs or pointer finger and press in on the spot. You can massage it with your fingers or put pressure on it, although I'm not sure how hard you will want to press with Shane specifically given his medical issues. Typically, if you've never massaged this area it will "hurt" for the first few times and get easier the more you do it. But the ligament will eventually start to release the more times you massage it and it will increase his flexibility. Most everyone holds tension here that closes up the bite. Similarly, you can grab onto Shane's chin but instead of forcing it down like you were doing, have him completely relax his jaw muscles and just move it up and down for him in a chewing motion. The key is for him not to be holding tension at all, the jaw should feel completely free for you to move. You want to be focusing on exercising/eliminating the tension from the muscles and ligaments that hold the jaw to the skull rather than just pushing down.

Hi! So I’ve been a dental assistant in a general office for 5 years, 2 years prior to that I worked with an oral surgeon. The first thing I want to tell you is that oral surgeons typically use conscious sedation for IV sedation, which is much different than general anesthesia. The patient is unaware of what’s going on but they are able to breathe and move a little bit on their own. Also, the method they will use to open your mouth is to use a mouth prop. Essentially they will insert a “car jack” and crank it open, which we can do when patients are awake but they don’t like it 😂 Another thing I’d like to recommend is that if Shane has more wisdom teeth, he may consider removing them all at once. Most able bodied people who can open their mouths very wide are not able to reach their wisdom teeth in order to keep them clean. Shane will be fighting a losing battle trying to prevent this from happening again. Please let me know if you have any questions! I genuinely believe any surgeons I’ve worked with would be able to help you. But I have to ask - why is Shane unable to be transferred to the dental chair? Good luck guys!

This sounds crazy but for a toothbrush, go to a specialty pet store and get a small dog toothbrush. They are smaller than infant toothbrushes, have a longer handle and are triangle shaped.

Shane! This is Viola, a fellow SMAer, the next time you search for a dentist just ask whether they have a room where you can fit in with your wheelchair and then explain that you require to stay in your chair and that the chair can modify itself (tilt, raise, etc) like a dental chair can. I’ve found many dentists who were more understanding and accommodating than what you’ve encountered and I attribute that to the way the situation was explained to them. Also, go back to PA and to PENN medicine oral surgery. They’re familiar with people like us to do these types of procedures. All the best! P.S. you guys inspired us to start our own vlog, The Ginchiest, about our disability experiences.

This just sucks big time that you two kids have to deal with a “dental dilemma”! It’s going to be a hassle to go through, but in the end Shane will be healthier and stronger than ever before. Proud of you both. All will go well. Bless you two!

Prayers to find the dental surgeon to get the job done

Until you find a dentist GET a water pick. They are amazing. They get stuff out of your teeth that regular tooth brushing can't AND they get down into the smallest areas in your mouth.

Listening to you talking about how dental offices wouldn’t accommodate your wheelchair makes me so angry. I’m a dental hygienist in upstate New York and we have many patients in wheelchairs that we treat. Some transfer and some can’t. Our office is 100% wheelchair accessible. I can’t believe there are so many offices around you that wouldn’t treat you because of that.

I love your positive outlook, joking and trying to keep it lighthearted. I’m sorry you’re having such a difficult time finding the assistance you need. Sending you positive thoughts, all the best.