I am writing this series because it is what I wish I could have read when I was newly diagnosed. When I was diagnosed with a life-altering disease, you better believe that I google-d the heck out of it. There were a lot of things that I never found, so a few years into this journey, I am here to offer the little bit of knowledge that I found.
I have been very surprised at the number of newly diagnosed Cervical Dystonia patients who avoid Botox injections. Needles are scary, but I think that having your spine hardening into place is a lot more scary. Plus, Botox is injected locally, which is an advantage over oral medication.
*Disclaimer: I am not a medical professional. These are my opinions, as noted.*
When I attended the ST/Dystonia Symposium in Charleston, SC a few weeks ago, a doctor gave a presentation about the complications that can occur from leaving Cervical Dystonia untreated. Several people mentioned that it is believed that there are more people with undiagnosed Cervical Dystonia than all of the people who are diagnoes with every type of dystonia, combined. So, awareness is very important because untreated cervical dystonia leads to permanent spine damage.
From my personal experience, I had to wait almost 2 months in between the time I was diagnosed and my first Botox injections. This was due to insurance paperwork. Additionally, this does not take into account the onset of symptoms prior to my diagnosis. I have not been able to pinpoint my onset of symptoms exactly, due to other movement disorders from which I suffer. But the moral of my story is that while I was waiting for my Botox shots, I went to see a massage therapist and found out that my spine was already out of alignment. I had a myofascial pain release massage. (If you have ever had one of these, you know they are not for relaxation purposes). The massage therapist even took measurements of my range of motion to see how much I improved after the massage. You are a blessed person if you have never had to drive with Cervical Dystonia. Turning at the waist to check your blind spot is now a habit, but before I knew I actually had a disease, other than just loss of range of motion, it was necessary. When the massage therapist started, he mentioned that my spine was out of alignment. I have since had x-rays of my back, due to lower back pain, and my spine is not currently out of alignment. I can only attribute the one alignment to my untreated Cervical Dystonia.
One of the presenters at the conference I went to showed a photograph of a woman who had not been treated for her Dystonia in time. In the photograph, her neck was completely twisted and pulled backwards. The doctor explained that anesthesia should cause even dystonic muscles to relax. In the second picture, the same woman was under anesthesia. Her neck was in the exact same position, because even though her muscles were relaxed, her spine had hardened into that uncomfortable/horribly painful position.
The presenter went on to say that untreated Cervical Dystonia can lead to a hardened spine. The only way to correct a hardened spine like the one he showed us a photograph of would be with extensive surgery to the spine, which would require pins. I am fairly certain that most people would rather prevent something like that from happening. Furthermore, the presenter cautioned that osteoporosis can also make living with Cervical Dystonia much harder. I have since resolved to take as many preventative measures as possible against osteoporosis, since it runs in my family. I don’t want any extra strain on my neck.
People who I have talked to who are avoiding Botox shots, usually are doing so due to a fear of needles. I’ve never been a fan of needles, but seven years of allergy shots helped me prepare, I suppose. Botox injections are painful. I won’t lie about that. They burn about 20 minutes after they are injected. And depending upon the skill of your doctor, the amount of post injection pain can vary. But I am here to tell you that a few days of pain is worth getting your life back. I am crying as I dictate this post (read here about how I blog with Cervical Dystonia and a hand tremor), because I would beg everyone to at least try. You don’t deserve to live in pain.
Botox is not perfect. It will not take care of all of your problems. It takes a week or two to start working and can wear off before you are allowed to get your next set of shots. It can take your neurologist many tries to get the right shot pattern. It can take many tries to find the exact right amount of Botox that you need. But I am imploring you to stick with it. You will need complementary therapies to help you deal with the pain during those weeks when the shots are wearing off; however, those precious few weeks that your neck is not twisting or pulling can make you feel like yourself again. I know what it is like to feel like your life has been unalterably changed by your diagnosis and your pain. So, a few weeks of relief can let you have a wedding and enjoy it. You can visit with your family, without being distracted by your neck. You can make memories again! You will be able to enjoy some parts of your former life. Not every activity will still be possible, but if you have suffered like I have, just getting one or two things back can transform your life. It can make your life worth living. Everyone’s life is worth living, but when you are in the depths of unbearable pain it can feel like your’s is not.
Those few weeks can give you back a small semblance of your former life. Pain has changed my personality. My husband did not know me before I was diagnosed, but I guess he likes my newer personality well enough. However, he really gets the best of me and my real (aka awesome haha) personality during the weeks that my Botox is working. Some college friends and old acquaintances who I only see sporadically, may never even know that anything is wrong, if they happen to see me on a good week.
Give Botox a chance to work for you. I could not find any statistics on how many patients respond, but since it is a first-line treatment for Cervical Dystonia, it must work fairly well. Some people will build up an immunity, but there is a new drug that will be available within a few years, which does not have any proteins for your body to build antibodies against. If Botox is not working for you, the problem is most likely your neurologist, not the Botox. I travel an hour and a half to see the best neurologist at a movement disorders clinic that I could find. And most doctors who are movement disorder specialist are trained in Parkinson’s disease. So, if they tell you that they see a lot of Cervical Dystonia patients, ask how many is a lot. I have spoken with people who travel five hours or more to get to the best doctor. The technique of your doctor will determine the effectiveness of the Botox. Just because someone puts it in your neck does not mean they are putting it in correctly. Find a local support group or a national cervical dystonia foundation and look at their doctor list. Join an online support group and ask people in your area which doctors they go to. When you find the right doctor, don’t let go. My first doctor was an excellent shot giver. However the second doctor that I saw, once I moved, did not have great technique. So, I suffered for 12 weeks because the shots were completely ineffective. I was fortunate to get a third doctor who was able to give me effective shots. While I would love to stay close to home to get my shots, I am unwilling to let some one mess up 12 weeks of my life with ineffective shots.
I was not able to find much research on the Internet to back up this post, like I wanted to. So I hope that my story will inspire you to take a chance and get the shots. Even if you hate needles, you should talk to your doctor about taking a medicine to help relax you before the shots. I will be posting soon about how to deal with post injection pain because getting through those few days after the shots can be challenging. I am always trying something new or perfecting existing techniques to manage my pain, so I can resume a sort of normal life.
Please email me if you have any questions about my journey through Botox injections. I would love to talk to you about your decision to get Botox or not to get Botox. Also I would love to hear what you do to deal with the pain of getting the shots!
While you’re thinking about it, please read some information on the effectiveness of Botox! Don’t let your fears hold you back from a viable option.