erica,

It sounds like you found a Cranial Sacral Therapist. Cranial Osteopath is a term used by some osteopaths (D.O.'s) who choose to not go by Cranial Sacral Therapist. Osteopaths take quite a bit of Cranial Sacral Therapy training in osteopath school. I would suggest doing some online research about Cranial Sacral therapy so you have a better understanding of it. It has some very good values but also some very questionable issues.

Getting educated on this controversial therapy will allow you to have better control of your healing. I am not saying to not take advantage of CST but rather to be a knowledgeable health care consumer so you get the best bang for your efforts and health care dollars.

Studies have shown that the same person diagnosed by ten different CST's will get ten different diagnoses. They best skill sets are regarding the spine. They can do amazing things with the spine. If you believe that your skull is comprised of plates that are moveable by the gentle manipulations of a CST, let them try to manipulate your skull. Most physicians and researchers believe that the skull plates fuse during the pre-adolescent years.

I wish I could find the article I read last year. It mentioned that even some D.O.'s who teach in osteopath schools refuse to teach CST because of its unsound basis. One of these D.O. instructors wrote an in-depth review of the fallacies of CST. He acknowledged the value of the spinal manipulation but not the skull manipulation nor the diagnostic techniques of feeling the energy blockages in the skull and such.

A good upper cervical chiropractor is also worth a look. There is such a variation between the many chiropractors and Cranial Sacral Therapists that it is very helpful to understand their therapies. It is also helpful to know that one CST or chiropractor may be helpful where another may be worthless. It is a matter of how they understand and work with your specific body.

For example, I have seen about 15 different chiropractors over the past 30 years. Only 6 were really helpful with my body. Same thing goes for Physical Therapists. They all have strong points. Some have many weak points. Concussion is often a common weak point.

There is a chiropractic diagnostic technique called "Leg Check" that may be helpful. Asking on the phone if the Chiro uses leg check can quickly help you sort them out. Leg check uses comparative leg length to pinpoint muscles spasms in the spine. This is an valuable diagnostic tool in the hands of an expert.

I am surprised the amitriptyline was working as a pain reliever. It is a tri-cyclic anti-depressant that is used in small doses (10 mgs) for Post Concussion Syndrome head aches and other symptoms. Not as a pain reliever but as an alternative way of reducing the head ache by reducing the cause of the head ache (often tension).

I am interested in what you osteopath does to help you. A good set of fingers on the back can be like magic.

Hi Erica,

What type of doctor was it that is looking into your pelvic bone issues, was it the cranial osteopath? I also have similar issues with my pelvis - my therapist has measured my legs and I believe they are the same length, but I know the one side of my pelvis was basically "jammed" and did not move the way it should. I actually learned this from the osteopath I used to see, but don't see anymore because I didn't find her approach very helpful. She thought it was caused by the way I stand by favoring my one side more then the other. Please let me know how your next appointments go with this doctor. I think that is really interesting (and also rather annoying!) that pretty much any part of your body can cause problems with your head .. hopefully you're on the right track to solving some of your problems!

I have been discussing the gradual exercise approach with my therapists .. it is hard because while a couple of them think it is worth a shot, the neurologist i have been working with doesn't think it is a good idea, so it hasn't really went anywhere yet. It seems so promising though, especially because it appears to have helped relieve some of your symptoms. I think they might wait to start anything until I get in to see a concussion specialist first.

Talk soon.

Kelly

kelly,

I am confused as to why your neuro would be against the graduated exercise. The whole concept is to avoid triggering symptoms. Anything you can do to increase blood flow without increasing/triggering symptoms sounds good just on basic physiological logic. Many doctors will commonly allow any activity that does not cause pain (our body's first line of communication) or other symptoms.

all,

I am also confused by the reference of a concussion specialist. In all my years of PCS and PCS research, I have never found a Concussion Specialist on the treatment side. Dr Dorothy Gronwall and her colleagues in New Zealand are probable the best but Dr Gronwall has passed away and her colleagues are retired.

There are only concussion believers and concussion deniers. Even the concussion believers are not specialists. The Buffalo people are not concussion treatment specialists. They are "return to play after concussion" specialists.

Most cognitive rehabilitation specialists are focused on much more severe symptoms that those of PCS. Their targets for success are often about level that PCS subjects are when requesting help/therapy. In other words, my current level of symptoms, memory deficits, cognitive deficits, slowed processing speed, behavioral struggles, are considered to be the end goals for most TBI patients.

I just got home from my local brain injury support group. I am the highest functioning in the entire group despite my many difficulties. Hopefully, someday, health care providers will discover ways to help PCS subjects with our struggles. At present, we do not meet the 'severity of symptoms' minimum for serious consideration.

Dr. Julian Bailes, chairman of neurosurgery at the West Virginia University Hospitals is more expert than most, especially since he understands the long term problems. There is also a researcher in Boston who understand concussion from a post mortem diagnostic perspective.

Both are still hoping to discover treatment modalities that offer consistent results that insurance companies will fund. Treatment for long term symptoms is still a mixed bag.

One expert recently stated that the first priority is to stop denying care to PCS subjects. He stated that this requires that medical records properly list concussion as an early diagnosis (ICD-9 diagnostic code 854.0 ). This way, when symptoms become evident at a later date, they can be considered as possibly caused by the previous concussion. Otherwise, later care is refused and the symptoms are labeled somatoform, psychological, or malingering.

Good luck as you push your health care providers to acknowledge your PCS condition.

This is exactly what I feel like I have been struggling with for months! The local Children's Hospital has great team of professions and services available to those that are very severely injured. The high function concussion kids with prolonged PCS fall under everyone's radar. We as parents have fight to find them the care they need. There has to be a better way.

Mark,

I am familiar with cranial sacral therapy. Back in december when I was home for winter break and in pretty bad shape my mom booked a cranial sacral therapy session not knowing what it was. (She thought it was a head message). Needless to say I was completely confused as to what was going on the whole time and found no benefit from the session so I went online to learn more about this therapy. I didn't find any benefit and do not plan to try it again.

However- a friend referred me to a structural integration message therapist who is extremely educated about the body and how it is all connected. After working with him for 2 1/2 hours he was very honest with me and told me that he didn't think he could help me, but that he knew of people who may be able to. That's when he referred me to this doctor who has a D.O. He is no longer covered by insurance because he spends so much time with his patients. His goal is to see you only once, but will have you come back if you need to. I spent three hours at his office where they took an extensive history. He also did some other things to try and "straighten" and "balance" me out. The right side of my body is out of wack. That's why he had me get the xray standing up to see if my pelvis has a slight tilt to the right.

When I have ever referred to concussion specialists, I am referring to only one person that I've met through this entire scenario. He is the Director of the Concussion Clinic at the National Childrens Institute in Rockville, MD. He was GREAT. In fact, he is the first and only person who ever took the time to actually sit down and explain to me what a concussion actually is. Crazy right?

It really is quite unfortunate how so many doctors are not informed, don't choose to be, don't take the injury seriously, etc., etc.

Kelly-

I am meeting with this D.O. again tuesday to learn whether or not I have a tilted pelvic bone, and to go from there. He explained that if the pelvic bone is tilted, it could be pulling on on the outer most membrane that covers the brain, which actually attaches right at the pelvis bone. (makes sense and accounts for my neck, back and migraines). This tilt has caused my body to get out of alignment with some of my ribs slightly out of place that he believes has been pushing on my trapeciez muscle which then spasms and is causing this chronic pain. I will let you know how the appointment goes.

As far as the exercise regiment- I had to wait a month for my trainers/doctors to be convinced that it was okay to proceed with the program. They are certainly not the experts with this, and that is why I am planning to head to Buffalo as soon as I am done with finals.

Let me know how things are going!

Erica

Mark,

The neurologist I deal with actually isn't a doctor - from my understanding he is a research professor at my University that specializes in neurology (if that makes sense). He is the person who interprets the results of the ImPACT test for the varsity athletes, which is how I got involved with him. When I was told to stop playing hockey back in January, I had to stop all physical exertion until my symptoms cleared. While some of my therapists thought it was a good idea to try some physical activity now, he didn't think it was a good idea for some reason and so that idea never really went anywhere. I actually don't have appointments with him or anything like that, and my athletic therapist usually acts as the "middle-man" between us. Because I never really talk to him, I'm not sure why he didn't think it would be a good idea, and I just accepted it because I didn't know any better. I've learned so much after reading all the great information on this site, and I now have a better understanding that some gradual exercise might be very beneficial, so I'm really going to try and push that.

As for the concussion specialist - I was referred to him by one of my doctor's when I had an appointment a few weeks ago. His name is Dr. Charles Tator, and he a neurosurgeon out of Toronto Western Hospital. Not sure if are familiar at all, but he is the same doctor who singled out Don Cherry a few months back for promoting aggressive behavior hockey that leads to serious injury. I have heard nothing but good things about him, so I'm really hoping to get in soon to see what he has to say about my problems.

Erica,

It actually seems kind of crazy how similar our situations are! They believe my pelvis is causing many of my problems, though I didn't know it could even affect your brain. My ribs were also out of place, I believe they referred to them as being "stuck". Does your neck/back pain get worse with physical activity? My pain hasn't been too bad as of lately because I haven't been doing much, but I find my pain would get really bad after doing any sort of exercise. Because everyones efforts turned towards my head and not the rest of my body, I am scared that when I do start getting back into physical activity this pain will all be back because it was never fixed in the first place. Sure is frustrating how the problems never seems to end!

I don't really have much of an update on my progress! Things have kind of slowed down as of right now because I don't think anyone really knows what direction to go in. I am hoping by next week I am able to schedule an appointment with this specialist, and possibly even try some biking too! Let me know how your appointment goes!

Kelly

Kelly-

Yes- our situations do sound very similar! After meeting with the cranial osteopath today, he showed me that the xray did not reveal any pelvic tilt. However, my third and fourth ribs are still out of place, and are poking into my trapeciaz. The skewed ribs seem to be the main culprit of all my neck and back pain according to this doctor. He's working with me to try and get things back in place. He also found that the bones in my head were completely locked, which he refers to as a "hard head", when they should have a natural movement to them.

I've officially made an appointment to go to Buffalo when finals are over. I am very excited, because they are going to tailor an exercise program specifically to me after some exercise testing. Also, I will only need to report to Buffalo once and can do the program entirely from home. I'm hopeful, and will post on my progress with the program.

Erica

Hey!

Wow that is so exciting that you get to go to Buffalo! Definitely keep me updated on your progress. I read what you wrote about only having to go once so I thought I would look into it more. I sent Dr. Leddy an email but am still waiting to hear back. I have no idea if I would even be a candidate because I am from Canada, but I figured it wouldn't hurt to look into it.

I had been feeling better the last few weeks so I thought I would try some very light exercise on the stationary bike yesterday. Unfortunately I couldn't even make it through 10 minutes before I starting feeling so sick. My head hasn't felt right since, and I had a lot of trouble sleeping again (which had finally starting improving in the past few months). So needless to say it did not go well at all and I am incredibly frustrated.

I did finally got an appointment with the specialist I have been referred to a few weeks ago. I have an appointment with him in a few weeks so hopefully he has something helpful/encouraging to tell me.

Hope all is well, talk soon!

I've mentioned this before, so please forgive my repetition if you've read it before, but...

10 minutes strikes me as at least 8 minutes too long for re-starting an exercise routine. For my very athletic daughter we had to start at 2 minutes a day and work our way up in 30 second increments every 5-7 days. It takes forever. I realize that 2 minutes seems ridiculous. But it works..at least it worked for my daughter. She is up to 20 minutes plus, including being able to run outside.

From my understanding, you should not exercise until you have a symptom. You need to stop before you have a symptom.

This process not only helps your brain/cardio system readjust, but it also changes your mindset set from "shoot...look what I can't do" to "Yay...look what I did today!" It gave my daughter a tiny sense of control in the nightmare of PCS.

All the best-

PCSLearner,

Thanks so much for sharing your daughter's experiences. I don't think I had read your PCS story (or hey, maybe I did and just forgot!), but I just went back and read about your daughter's injuries.

You were right - 10 minutes was far too much as a re-starting point for my exercise. Not only did it make my all my symptoms worse, it frustrated me more then words can explain. With your suggestions, I decided to try something much smaller today. I did 2 minutes, and so far things have been okay, my head does feel a bit 'spacey', but definitely not as bad as trying for 10 minutes. I sure felt silly being at the gym to ride the bike for that amount of time though But it felt great to exercise again, no matter how small it was! I guess you have to start somewhere. I hope I will be able to continue with small steps, and I know if I am able to slowly progress like your daughter it will be great for my confidence.

If you don't mind me asking a few questions about your daughter:

Does even a small amount of exercise increase any of her symptoms? For instance, if she starts feeling nausea during some light exercise does she stop right away? I am having trouble figuring out when to stop and when to keep going. In past sporting injuries it has always been possible to fight through it.

Does she do any other type of exercising? Any light core exercises, or maybe some easy strength training? I believe you mentioned yoga in one of your previous posts?

Thanks for sharing your opinions. All the best to you and your daughter.