Jaw muscles

[Sweenstar]

Following on from a message on the forum yesterday.

Has anyone any experience on the success (or not) of Botox injections in the jaw to relax the muscles to then help with opening the mouth a bit wider?

Thanks in advance

Chris

[Jaguar86]

Hello there, the neurologist tried Botox with my husband. He had 3 injections 3 months apart with no success. The Dr has had success with other patients. The jaw clenching has become worse and really worrying my husband. He is able to open his mouth wide and so far no problems with swallowing. Seeing Dentist tomorrow for general check. To complicate the situation my husband has cancer in his cheek and requires radiotherapy. It is a coincidence just makes finding a solution to the jaw clenching more difficult. I’d suggest Botox is worth a try. Good luck. We are in Queensland Australia by the way. PSP is quite rare here so all info from this site helps.

[Zerachiel]

Hi, yes my wife has botox injections injections in her jaw muscles, it still takes some effort to open her mouth and although not fully open, it is enough to drink and for mouth care. it would still be a challenge to get food in but possible (she is tube fed). If you can drink you can feed with Fortisip instead of food.

She also has botox in her eye muscles to help her open her eyes and Saliva glands to reduce saliva production.

[LuisRodicioRodicio]

Hi Sweenstar!

We have not experience with Botox.

These are our experiences with the problem of the jaw:

In advanced stages of the disease, feeding the patient is a big problem. The patient is so bent forward and cannot tip his head back or move it, so feeding is now very difficult

Our solution (which often works but sometimes does not) is as follows:

1) With the fiber-free part of the head of an electric toothbrush, we massage the outside of the jaw and the inside of the mouth to stimulate the muscles that open the mouth. Also, before feeding the patient, give a circular finger massage for 1 minute just at the top of the jaw and under the ears, she can move her jaw better.

2) Place a big napkin under the chin.

3) With the caregiver's left hand, the head is raised and with the right hand the spoon is inserted into the mouth and it is removed empty.

4) The head returns to the position where the chin is close to the chest (in this position it is easier to swallow) so that patient can swallow better.

5) Steps 3 and 4 are repeated as many times as necessary.

6) When feeding with a small spoon is very slow and difficult, we have used a 60 ml syringe, introducing the pureed food between the teeth and the cheek in small doses (10 ml each time).

It is normal for the napkin to get very dirty.

Note.- On the advanced phase in which we are, the patient tends to be frequently drowsy. If he is very sleepy it is useless to feed him. It is preferable that you take something the patient like very much (An ice cream for instance) to entertain the stomach and not force feed. This happens especially at dinner and in the morning our patient eat breakfast very well (generally the easiest and fastest meal of the day). Lunch is usually quite acceptable too.

Hug and luck.

Luis

[AnneandChris]

Hello there

We had botox injections for my husband's excessive saliva which worked for a while. However, they cannot be administered by the GP, so we had to travel to clinic our county hospital which was fine the first time, but became impossible due to Chris' deterioration. The hospital is an hours drive away and it was too much for him in the latter stages of this devastating disease.

I do hope you find a solution to the jaw clenching problem.

Keep on keeping on

Anne

[LARWLSN]

Hello, my mom has had botox in locked arm and leg, as well as in her saliva glands to help with the drooling. The injections to her limbs made a big difference - the PT was very impressed on how much they helped. But it is important to stress they HELPED.. it wasn't like a miracle fix. The injections for drooling we won't be doing again -- my mom found that to be extremely stressful and it was upsetting for us to watch. Even if they work, we won't be doing that again.