1. < Visiting Mayo Clinic
Profile picture for daisyswrm

PD and cervial dystonia

Posted by daisyswrm @daisyswrm, Jul 31 3:01pm

Wife diagnosted with PD and started Sinemet. 7days later she developed severe cervical dystonia unable to lift her chin off her chest. Botox did not work nor have any anti-spasmotic. Was able to get an appointment at Mayo but its 2 months out and she's in constant pain. Is there any way to get on a cancellation list or watch for cancellations? Seeing local neurologist in two weeks but currently no treatment plans for the dystonia.

Interested in more discussions like this? Go to the Visiting Mayo Clinic Support Group.

Profile picture for Janell, Volunteer Mentor
Mentor
Janell, Volunteer Mentor | @jlharsh | 13 hours ago

Hi @daisyswrm, and a belated welcome to Mayo Clinic Connect. I’m sorry your first post didn’t receive a response sooner. When you wrote, your wife was in constant pain from severe cervical dystonia and you were trying to find help while waiting for appointments.

Some time has passed since you posted, and I’m wondering how things have gone for both of you. Were you able to see the local neurologist or get an earlier appointment at Mayo? Has anything helped your wife’s dystonia or pain? How is she doing now?

REPLY
Profile picture for daisyswrm
daisyswrm | @daisyswrm | 10 hours ago

Thank you for your reply. Yes, we did get in to see a local neurologist but basically the only real option is to retry the Botox (higher dose) and there is a 12wk wait period so she is having no relief for another 8wks or so. We did also get a cancellation bump up for our appointment at Mayo which we are extremely grateful so only 4 more weeks for that. But honestly, our expectation is that it will be more about overall diagnosis and understanding but likely still have the 12wk botox gap requirment limiting what we can do. We are also trying other meds but nothing is really making a difference yet. Thank you again for your response.

REPLY
1 reply
Profile picture for Janell, Volunteer Mentor
Mentor
Janell, Volunteer Mentor | @jlharsh | 9 hours ago
In reply to @daisyswrm "Thank you for your reply. Yes, we did get in to see a local neurologist but..." + (show)
Profile picture for daisyswrm @daisyswrm

Thank you for your reply. Yes, we did get in to see a local neurologist but basically the only real option is to retry the Botox (higher dose) and there is a 12wk wait period so she is having no relief for another 8wks or so. We did also get a cancellation bump up for our appointment at Mayo which we are extremely grateful so only 4 more weeks for that. But honestly, our expectation is that it will be more about overall diagnosis and understanding but likely still have the 12wk botox gap requirment limiting what we can do. We are also trying other meds but nothing is really making a difference yet. Thank you again for your response.

Jump to this post

@daisyswrm, I’m really glad you were able to get the Mayo appointment moved up, although four weeks can still feel like a very long time when your wife is in pain every day. It sounds like you have been working hard to pursue every avenue available while you wait.

I think your expectation for the Mayo appointment makes sense — even if there isn’t an immediate treatment that changes the Botox timeline, having another set of eyes looking at the overall diagnosis and what may be contributing to the dystonia could be valuable.

In the meantime, I’d like to see if we can connect you with others here who have dealt with cervical dystonia, particularly alongside Parkinson’s disease. @lind83 mentions addressing both at Mayo Clinic and may have more to share.

There is discussion you will want to review if you have not found it already. I will provide a link to a comment there providing other places on Connect you may want to peruse about dystonia.

- Living with Parkinson's Disease - Meet others & come say hi
https://connect.mayoclinic.org/comment/812541/
Sometimes hearing what others have experienced while waiting for Botox or finding the right treatment can at least help you know what questions to ask and what possibilities others have encountered.

How is your wife managing these weeks between treatments, and what would be most helpful for you to hear from other members right now?

REPLY
Please sign in or register to post a reply.