Hello, does anyone have severe rigidity of the neck where the neck is stuck at a 30 deg angle with the head tilted up. My mom is not able to move her neck downwards at all. It is extremely rigid and unmovable. Has anyone had botox injections for that or any other remedy. She started on an acupuncture course about 4 months ago and is still continuing with that.
Thanks,
Anna.
Hi Anna,
Yes my Keith has got his head tilted back like that all the time, it's as though he's staring at the ceiling!
Unfortunately rigidity is a common symptom of this horrible illness, I'm not sure about Botox as Keith has been advised by his doctor not to have it, don't really know the reason for that but he's decided against it.
Sorry I've not been much help have I, just wanted to confirm that it is a common symptom..
Hugs....Pat xx
My husband has just started having rigidity of the back or neck....about 3" months ago.....He used to fall to the upper right now it is straight back! and Pat is right in that it is defintely a PSP symptom.....it seems we here talked about Botox. But the only experience I had with Botox is my class aide had some sort of injury where her neck was in permanent stress, tilting. She got shots every 6 months and it worked for her....Thats all I can tell you....
My husband is calli8ng goodluck
AVB
My husbands neck is like that, he has an appointment for Botox at the end of January, so can't comment on whether it helps
Debbie xx
Hi. Just wanted to reiterate the stiffness is part of PSP. None of our doctors recommended anything.
My husband is very ridged especially in his neck, also leaning to the right, very difficult to move him, also his jaw is becoming very clamped and painful, just waiting for medical advice, will let you know of any advice we get..x
My mum has the same problem. We've started doing massage numerous times a day on the neck and shoulders to try and reduce stiffness. My fear in all this is eating and drinking because the neck is so far extended back. We use a travel neck pillow in eating to support the neck forward, it's not great but something to help normalise the position. We also changed from a feather pillow to memory foam pillow so the neck is more supported. Hope this helps.
My mother in law almost looks like she is poking out her chin and tilting her head up too. SHe has a rest on her new fancy chair but seems almost afraid to rest her head on it....
Yes, I have tried Botox, with good results. The first time the benefit only lasted a few weeks, the second time, it lasted about one and a half months. I am due for another set of injections in January. I'm really needing it. The pain and stiffness is excruciating. The injections are given by my doctor every three months. Good Luck, Mary B.
Thank you everyone for your replies.
Hello, follow up on this.. Any new updates on Botox. Also is chronic neck pain associated with this rigidity and is the pain present at all times? 
There can be pain associated with retrocollis but not in everyone and not all the time.
I have a much less severe rigidity in my neck but I (and my neurologist) are not sure how much of it is attributed to the disease and how much is attributed to degenerative disc disease which led to an anterior cervical fusion in 1994.
My neurologist ordered an MRI of neck this past January and it showed the fusion still holds but that I have a central bulging disc at C6-7, various osteophytes (one of which is actually compressing the thecal sac, which surrounds the spinal cord), severe spinal stenosis, and a whole lot of arthritis and scar tissue. In short, the MRI was not normal but no sane neurosurgeon would touch the mess that is my cervical spine.
I underwent Botox injections into my forehead for head pain following a bout with viral spinal meningitis in 2005. They were very effective as long as they were done every three months. They were discontinued when I lost my health insurance in late 2008. Fortunately the head pain was gone until I had my first stroke in November, 2015. Then it returned with a vengeance and I fight it every day. I have recently begun to discuss Botox again with the neurologist who has treated me since my second stroke last October. I hope he follows up.
Hope all of this was of some assistance to you. With kindest regards, I remain,
Steve
Thank you Steve.
Has anyone tried a brace for retrocollis? Is the Minerva brace the right one or is there any other recommendation other than a regular neck collar. Thank-you !
Generally if someone is reclined, retrocollis doesn't show. We do have a couple of local support group members trying a neck brace. They use one of the soft, foam braces. I guess it must help some.
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