Hi,
I was wondering if anyone has tried myofascial release? Any responses? I have heard that it is similar to cranialsacral therapy. I am going into NYC to the guy who developed this method. For those of you that don’t know my “story” I am waiting for relief from DREZ, but things aren’t moving along and I need my life back.
Ally,
I’m sorry you aren’t getting relief from the DREZ procedure. I don’t know what myofacial release is. Please let us know more about it. When will you go to NY?
Liz
Hi Ally,
Myofascial release is mentioned in the book I’m following at the moment “Taking Control of TMJ” by Robert Uppgaard who is, or was, an associate professor of dentistry at the University of Minnesota [which has a Craniofacial Pain Clinic]. He refers to John Barnes as the founder of the myofascial release concept and wrote positively about the therapy. Is this the person you are going to see, if so he seems to be the top man.
The ideas really appeal to me as they seem to make a lot of sense, that the fascia which cover the muscles can bind down in different parts of the body and can cause referred pain in the face. I don’t know anything about craniosacral therapy. The stuff I read seemed to suggest that it was more of an art than a science [though I may be wrong in my understanding of it]. Personally I’m really interested in what you are doing and would welcome feedback on your treatment. Good luck, Pat.
Ally, I re-read the info on MFR and it says it is a process of gentle stretching of the muscles to correct dysfunction in the whole body, based on the fascial system [body’s connective tissue].
I’m sure that it’s worth a try, I think that the idea is that tense muscles shorten and have to be lengthened to help prevent more spasms. Last night, before getting into bed, I did some simple gentle stretches of my neck, shoulders and back. I then had 20 minutes or so of bliss, feeling “normal” before the jaw tightened up again.
Pat-
Thank you so much for your response! I went into NYC on friday, John Barnes office! I didn’t meet with him, but the pt I worked with was great. I would love to continue going there, but I am in school full time trying to get my degree : ( There is someone that trained with Barnes closer to home, so I may visit them.
In my mind, MFR SHOULD help…if it is relieving compressions? and TN is a compression? I am just so lost and confused…I have tried SOOOO many things!
Thank you Liz as well : )
Pat Gascoigne said:
Ally, I re-read the info on MFR and it says it is a process of gentle stretching of the muscles to correct dysfunction in the whole body, based on the fascial system [body’s connective tissue].
I’m sure that it’s worth a try, I think that the idea is that tense muscles shorten and have to be lengthened to help prevent more spasms. Last night, before getting into bed, I did some simple gentle stretches of my neck, shoulders and back. I then had 20 minutes or so of bliss, feeling “normal” before the jaw tightened up again.
Hi -
I have tried myofascial release. I’ve had 4 sessions so far and my pain level is very mild. I have also tried cranial sacral therapy in the past and thought it helped at the beginning too, but soon I was back to the constant pain. So, it may be too early to attribute my milder pain to myofascial release.
I have Type 2 TN, so it may respond differently than Type 1. I’ve also recently read that arthritis of the cervical spine can cause TN symptoms. I fractured my neck 5 years ago and this started a couple years after. I do have arthritis subsequently, so I’m really leaning toward this being the cause. Everything else has been ruled out.
What sort of exercises are conducted with MFR? Are there any books on the subject that Ally or I could use? I live in the UK so I’m not sure if it’s available here but it sounds good for you so far.
Ally, obviously your first priority must be your degree, you’ve got your whole life ahead of you. Regarding MFR and compression I don’t know the answer. I think that TN is often caused by compression by a blood vessel and therefore amenable to an MVD, but as it’s an irritation of the nerve then I think it can also be caused by other things such as jaw [TMJ] and neck problems such as Kassie’s fracture. Where I think MFR helps is in releasing the binding down of connective tissue and relaxing the muscles which can tighten and can go into spasm and pull on the nerve. I’m not a doctor, this is my best guess.
Kassie-
thank you or your feedback! are you on any meds with MFR? I am going to look into CSF too. I am just nervous because I have so much scar tissue from surgery.
Pat-
I would love it if MFR would make my pain go away or even lessen it! I have noticed that triggers have been super sensitive the past few days, but that could just be my body! I googled TN and MFR and there were some interesting suggestions and research. One person said put one hand on you heart and another on where the TN pain is. Who knows!!?
Keep updating!!
Ally & Pat -
No, I’m not on any meds. I was given Neurontin by my neurologist, but read so many negative comments about side effects that I just don’t want to try it. I’d like to treat the cause, if possible, rather than mask the symptoms.
I’m not familar with CSF unless you mean craniosacral therapy. Both MFR and cranio are very non-invasive. The touch is very light, no pain involved.
What brought me to MFR is I read that the Sternocleidomastoid muscle can become really tight and affect that nerve. That’s what we’re working on, among other facial muscles. I’m hoping that’s what is helping. The change in my pain level has been huge. Normally, my worst pain is in my cheek and lip. The throbbing can get so bad - like someone punched me in the face. I’ve even been sleeping better, which is near impossible when the throbbing gets so bad. It’s worth trying some alternative things - you never know what might help.
Kassie-
You are very brave and strong! Keep pushing forward. Is the PT you see familiar with TN?
Kassie Wightman said:
Ally & Pat -
No, I’m not on any meds. I was given Neurontin by my neurologist, but read so many negative comments about side effects that I just don’t want to try it. I’d like to treat the cause, if possible, rather than mask the symptoms.
I’m not familar with CSF unless you mean craniosacral therapy. Both MFR and cranio are very non-invasive. The touch is very light, no pain involved.
What brought me to MFR is I read that the Sternocleidomastoid muscle can become really tight and affect that nerve. That’s what we’re working on, among other facial muscles. I’m hoping that’s what is helping. The change in my pain level has been huge. Normally, my worst pain is in my cheek and lip. The throbbing can get so bad - like someone punched me in the face. I’ve even been sleeping better, which is near impossible when the throbbing gets so bad. It’s worth trying some alternative things - you never know what might help.
Kassie, we think along the same lines. I was given tegretol but have taken only half a tablet, I was so worried about the side effects. Like you I want to know the cause first. I’m on nothing but the occasional painkiller.
I have been following the self-help book on TMJ which refers to a number of neck and facial muscles as causing potential problems. Since I began doing the home exercises I haven’t had any nerve shocks [13 days now] but still get jaw pain as the facial exercises are quite tough on a sensitive cheek. It’s a long road.
Kassie Wightman said:
Ally & Pat -
No, I’m not on any meds. I was given Neurontin by my neurologist, but read so many negative comments about side effects that I just don’t want to try it. I’d like to treat the cause, if possible, rather than mask the symptoms.
I’m not familar with CSF unless you mean craniosacral therapy. Both MFR and cranio are very non-invasive. The touch is very light, no pain involved.
What brought me to MFR is I read that the Sternocleidomastoid muscle can become really tight and affect that nerve. That’s what we’re working on, among other facial muscles. I’m hoping that’s what is helping. The change in my pain level has been huge. Normally, my worst pain is in my cheek and lip. The throbbing can get so bad - like someone punched me in the face. I’ve even been sleeping better, which is near impossible when the throbbing gets so bad. It’s worth trying some alternative things - you never know what might help.
Pat -
TMJ was one of the roads I went down too, but a CTscan of my jaw showed that everything was fine. I wonder if these exercises could help me too, though. I’ll get the book and let you know.
Kassie
Ally - what has Dr. Casey ever said about MFR? It seems to be an interesting idea. I think I felt my best when I was on a crap load of valium and baclofen (both muscle relaxers) before I got pregnant. Still had some pain, but much better than it had been prior. But I also had come off of a high dose of prednisone at the time. So maybe that had something to do with it. Let me know if you think you are going to try it! The only other times I have ever felt all the pain gone is when I’ve had a shot of demerol or had oxycontin. (that was given to me for my headaches, but also took away the face pain).
Kassie Wightman said:
Pat -
TMJ was one of the roads I went down too, but a CTscan of my jaw showed that everything was fine. I wonder if these exercises could help me too, though. I’ll get the book and let you know.
Kassie
I used mayofacial release for a neck injury from a car accident, it really helped. I am not sure it would help for TN, because it is mainly used to release muscle tension.
Wendy
Dr Rodrigues -- I hate to rain on anybody's parade, but the best evidence available does NOT support the assertion that TN is caused by muscles or can be fixed by manipulating them in the face. There are multiple causes for TN, but the most frequent appear to be myelin damage near the trigeminal nerve root due to vascular compression, and damage of a more distributed nature due to stretching of the nerve in whiplash injury during automobile accidents. A large number of cases emerge as spontaneous or "idiopathic", and cannot be positively traced to any specific cause.
If this thread is to continue, then I request that you also enter into the record any references you have to controlled randomized double-blind trials of myeofascial release in facial pain patients. If there are no such studies, then let us all acknowledge that what we're dealing with here is at best an experimental technique that so far lacks medical evidence. I must also gently remind all present that solicitation of patients to the practice of a doctor is considered SPAM on this site.
I was desperate, and while searching online, I found a video of a woman jutting her lower jaw forward. When I found this video, I was in the fourth day of constant bursts. I started jutting my lower jaw out every time I would feel a shock starting. The next day, I woke up without any major shocks. Of course, I had been to the doctor two days before and had been given large doses of steroids, and depakote. I don't know what worked, but I don't care. I haven't had a shock since. I still have some tn2 pain, but not constant. That became less after seeing an Upper Cervical Chiropractor. I am on just gabapentin. I hope to wean myself off of that soon too.
I understand the desperation that comes along with this disorder for many patients. And I do try to be supportive of all who come to Living With TN. In this instance, however, I must simply caution readers of the thread. As far as I am aware, neither NUCCA practitioners nor those who attempt so-called "myofascial release" have published well controlled studies which demonstrate the effectiveness of their techniques for trigeminal pain. Some TN patients do report positive outcomes from these two complimentary therapies. But results are not consistent.
I caution STRONGLY against trying to wean yourself off meds without frequent medical oversight and supervision by a qualified mainstream medical doctor. For most people, most of the time, being weaned off anti-convulsive meds can result in severe breakthrough pain which is then even harder to control or manage than the original TN pain was. I base this observation on correspondence with over 3500 TN patients or family members during a period of 18 years.
Regards
Red Lawhern, Ph.D.
Resident Research Analyst, LwTN
Dr Rodriques: please expand on your reference? It addresses findings on the usefulness of Acupuncture. But the closest this list seems to come to trigeminal neuralgia and neuropathy is post-herpetic neuralgia.
Regards, Red
Stephen, what you call "the poorly recognized myofasical pain issue" is a theory or proposed hypothesis, not a fact. And it is a theory not particularly well supported by medical evidence or an understanding of underlying neurological mechanisms. Have Travell's protocols ever been rigorously evaluated in OBJECTIVE trials under a published protocol? By ANY category of therapists?
Regards, Red