2yrs post fall and still having issues???
 

Hi, i'm new here, but not new to mTBI/PCS.

I fell hard on left side of head while playing baseball 2yrs ago, had mTBI and lucky me... PCS for past 2yrs. Classic symptoms for long time, but now vertigo/nausea have stuck around with daily 'kicks', and headaches few times/wk. Grocery stores are hell, immediate trigger.

Neurologist/optometrist/fam doc says, everything looks normal, just have to wait it out, bruising takes time to heal. But seriously, 2yrs?? Its been getting worse lately too.

Not sure if anyone can suggest next steps? I saw a thread on behavioral optometrist? what else?

Thanks for your help!

Hi I see that you are from the Toronto area. There is a specialized clinic located in Guelph that has had great success treating PCS. The clinic is called MMTR Health Inc. I encourage you to check out their website and some of their youtube videos dealing with Post Concussion Syndrome!

thx! I will check it out :)

I completely understand your pain about grocery stores! As much as they trigger me, it's one of my few times during the week to "get out of the house" without seeing a dr. or physical therapy, vestibular therapy, etc.

For me, the whole environment of the grocery store is overwhelming. So I've found some ways to "tone down" the environment.

1) I always wear ear plugs. They filter out most of the background noise, (especially the squeaking and grinding of the cart wheels), while still allowing me to have a conversation with my boyfriend as we shop, or with various workers at the store. The ones I have are sportsmen's ear plugs that fit inside the ear, (not the big bulky headphone looking ones).

2) I wear my sunglasses, at all times. And yes, people look at me oddly, but it really turns down the flourescent light overload. Knowing that I can go to the store and go home relatively unscathed, is worth all the weird looks!

My daughter is currently receiving treatments at MMTR in Guelph for post-concussion syndrome. First 3 treatments she felt worse, not better, but by the 5th treatment, her nausea was almost completely gone. What a relief that was for her. She continues to get better but it may take some time depending on the symptoms. Her headaches are better, she has more energy, but we are still working on the noise and light sensitivity, and concentration problems. We see lots of progress. MMTR really works!

Try seeing a neuro-opthomologist
 

After my TBI, I found that I had torn an eye muscle that the eye needs for positioning sight. I have now been fitted with a prism in my lenses that helps my eyes work together, a lifesaver! Before the change to my lenses, I was wearing an eye patch to occlude the vision in the affected eye. Also, you might have vertigo from a positional problem dealing with the calcium crystals inside the ear canal. Might be a help to see the ENT Doctor.

Frogrdoo, Tim and Paola,

Welcome to NeuroTalk. What a concentration of both needs and treatment experiences in one short thread.

I am very interested in the treatments done at MMTR.

Please introduce yourselves and tell us how we can help you. There are plenty of experienced people here.

My best to you all.

I don't mean to be overly wary but I'm noticed that a poster comes on every so often with a "testimonial" to plug for the Guelph MMTR clinic (usually he or she has a minimal history on NT). I would like to see some clear evidence that whatever they have on offer works (frankly, after checking out their website, I'm skeptical).

Frogrdoo, two of the best concussion specialists (medical doctors) in Toronto are Dr. Charles Tator and Dr. Karen Johnston. Both are highly reputable. Checking in with one of them might be a good starting point, although I'm not sure they will recommend much more than the standard treatment of physical and cognitive rest. There is an osteopath in Dr. Johnston's clinic named Tanya Dei Tigli whom you could consult. She has a particular interest/background in treating concussion patients.

I found this about MMTR. Sounds like they can cure just about everything. ??? MS? They show no research supporting their claim to treating PCS.

"MMTR Health Inc. is a specialized clinic, which is redefining physiotherapy treatment through innovative technology and compassionate care. We provide enhanced rehabilitation and performance outcomes using our unique and proprietary treatment model –MyoWorxR.

The MyoWorxR treatment model is a comprehensive approach focusing on the causes of your chronic or recurring pains, symptoms, injuries, diseases or neurological conditions. The multi-level approach is guided by our team of health professionals: Registered Physiotherapists, a Cardiovascular and Neuromuscular Physiologist, a Registered Massage Therapist, Certified Kinesiologists and a Physiotherapy Assistant.

MyoWorxR has been developed by Cardiovascular and Neuromuscular Physiologist, Terry Moore B.Sc., M.Sc., PhD (abd) through more than 20 years of evidence-based clinical practice and research. We have demonstrated excellent clinical outcomes for many referred patients with various conditions that have not responded well to conventional therapies.

At MMTR Health Inc. we strive to educate our patients on the reasons for their symptoms and to teach you how to relieve pain, increase function or enhance performance. When you come to MMTR Health Inc. for treatment, you will come to get better, not come back for ever!
Specialties

physiotherapy, massage therapy, chronic pain relief, mutliple sclerosis, concussion treatment, fibromyalgia, low back pain, neurological conditions, repetitive strain injuries, Sciatica, health and wellness, musculoskeletal conditions "

Buyer beware.

I live north of you in Barrie. I see a physiologist at the toronto rehab center, but to be honest, he hasn't been much help other than to offer me meds which doesn't work for me since we are also actively trying to conceive. What HAS worked for me is massage therapy... I've discovered that the muscles in my neck are quite sore, and injured. My RMT is also a cranial sacral therapist... I don't know if what she is doing in regards to cranial sacral treatment is working, but I can tell you, within a few days of massage/treatment, I feel MUCH improved! during the c/s treatment, I find myself drifting off, which is very unusual for me, as it usually takes me a VERY long time to fall asleep during the day....

I would highly recommend an RMT that specializes in PCS.... at the very least it couldn't hurt, and hopefully it would help you as much as it has helped me!

And the original thread was from a year ago.

I'm seeing a combination of a Chiropractor and Osteopath to treat neck injury and PCS – I'm 10 weeks since injury and 24/7 headaches. Making slow progress, but some progress.

2 things to note:
1) The chiropractor never does any twisting manipulations, or "cracking". He uses a device called an ArthroStim, and it sends gentle pulses out. He has been using this on my C1 and C2
2) The osteopath is trained in the European style, which is apparently very different from the North American style. It's more gentle, and more appropriate for head injures from my knowledge.

About a month and a half from now I reach my 4 year mark and I still don't know what to do, it is very discouraging.
Good Luck, I hope you find your solution!
Live Long and Prosper,
Margarite

My daughter has now received four months of treatments from mmtr, at first 3 times/week, and now 2 times/week. It has been eight months since her head injury. It is a 3-phase approach, where she initially gets treatment on the myoworx machine, which facilitates the muscles to be massaged more effectively. Then there is deep tissue massage and trigger point release of the muscles that they have determined to be causing her particular symptoms, whether they be light sensitivity, tinnitus, headaches, etc. It is the only thing that makes her feel better, and is helping her get better. She has not fully recovered and continues to experience various symptoms, but to a lesser degree than previously, when she was unable to enjoy anything life had to offer. She has only recently started going back to restaurants, albeit quiet ones on Mon-Wed, as well as a family gathering or two. She went to a hockey game and was quite unwell afterwards, so that was too much for her. She is testing her limits and realizes that she needs lots of rest before and after doing anything that could exacerbate her symptoms. If you are anywhere near Guelph Ontario, it is worth giving them a call to see what they say. If you have been suffering from pcs for years, and doctors tell you all you can do is wait it out, then you have nothing to lose by looking into it. You might get pieces of your life back. We feel fortunate to have found this clinic, and have it close enough to home that she can be treated regularly. Others fly in for a two-week intensive treatment schedule to get them started.

Paola,

I doubt your daughter will see a drastic improvement in over-stimulation limits from the MMTR treatments. They are not designed for the deep neurological problems. The web site lists the PCS symptoms they hope to treat.


Headaches
Nausea
Dizziness
Fatigue
Light/Noise Sensitivity
Blurred Vision
Tinnitus
Ear Pain
TMJ – Jaw Pain or Dysfunction


The symptoms related to occipital and cervical inflammation are the focus.

The light and noise sensitivity will hopefully improve after the other symptoms have improved first. Light and noise are a slow improvement because they are likely related to axonal injuries that heal slowly.

I wish MMTR had more information about their system.

Hope she continues to improve.

My best to you both.

Hey Mark,
I do not mean to be rude or disrespect you, but every post I have read on Post Concussion you seem to degrade there suggestions and derail there hope of getting better. I have had post concussion for almost 4 years now and to see how you put down hope for people is very disheartening. I have been around the country for treatment and suffered the consequences of head trauma through head and neck injuries in sports, so therefore I feel I can post this opinion. I have had headaches, nausea, dizzyness, eye complications, cardiovascular complications(heart rate flucuation, blood pressure, etc). Hope is all we have and to see you being negative about any treatment any individual suggests is in my opinion, not what this board should be about. I understand you have been educated on this subject and have suffered great trauma throughout your struggle, which I have a great amount of respect towards your struggle. I see how you do try to offer insight, but to think your situation is the same as everyone's and to say this treatment or that treatment will not work is not helpful. An individual could see your statement and not try a certain treatment because you feel it does not work. Every individual's post concussion situation is different which you have stated in past posts, so therefore who can say which treatment will work and which won't? I hope I did not offend you as this was not my intention. Cheers to all who are fighting and struggling through the hardships of post concussion and head/neck trauma. Always try to dwell on the positives you have in your life as of course this is much easier said than done.

You appear to have missed my comment that the MMTR protocol would likely help with the neck and occipital inflammation related problems. The other cognitive oriented symptoms would be slower to recover.

There are plenty of clinics that are eager to take patients money with vague promises of treatment. I find it difficult to support their claims when some are outright illegal. MMTR made/makes comments about FDA approval but they have no such approval and are abusing the FDA approval concept.

I'd be interested to hear what treatments you have found to be helpful. Your cluster of symptoms sound like an inflammation problem is your upper neck/brain stem. I have had problems with low BP and pulse that appeared to be related to upper neck inflammation. Once I resolved the inflammation, the BP and pulse returned to normal. I have learned to be very careful with head/neck position if I fall asleep sitting up like in a car.

A professor/MD at the University of Tasmania used to have a "diagnostics by physiology" course online that was very good at pinpointing causes by using a matrix of physiological symptoms.

Very few doctors are good at such diagnostics because it requires a broader knowledge set than is common is any specialty or general practice. Some neurosurgeons can put the puzzle together or even the exceptional physiatrist but this is rare.

I agree 100% with companies taking advantage of people, as this world revolves around money! It's BS that many do this, with slim chances of relief for the individual, but continue to tell them they will see results when alls they want is another check.

Your right when you say upper neck cervical/brainstem Mark, damn your good, haha. I was actually ok for awhile, after the initial year or two of chronic PCS symtpoms, and then did U at Buffalo's gradual exercise program. Which, I could run twice a day eventually again.

After I saw a upper cervical chiropractor, which after a few treatments I felt much better, and headaches went mostly away and energy levels came back. However, this guy ended up correcting me wrong after I noticed my neck keep going out, and keep locking up/stiffness and became very painful.

I then went to a PT in Minnesota, who had helped a major league baseball player with post concussion by doing a variety of eye exercises along with some neck exercises if you will. I went there, he said he could help me and the result was a complete return of alot of my symptoms, and my eyes could not take TV, computer, or pretty much anything. 6 weeks I sat in a dark room again, and you know how frustrating this is, especially when I thought I had gone through the worst.

I have currently been going to Cherry Hill, NJ with Dr. Greenberg for over a year now.... receiving prolotherapy/PRP injections in the base of my skull and cervical spine. The problem is I cannot afford to keep flying and receiving expensive treatment that insurance does not cover, but what choice do we have ya know? I have seen improvement....Slow but improvement none the less. I can say Im quite a bit better now, but still know I could improve quite a bit more.

My eyes still bother me, but have gradually gotten a bit better over around 1 1/2 years....Fatigue always, not dead tired, but no spark of life. Heart rate fluctuates sometimes still, breathing difficulties(especially laying down or on my side), and of course exertion is still a problem with your head feeling like it is going to explode, haha.

If the prolo is going to work, it should have been showing good improvements long ago. The PRP should show improvement in about 6 weeks since 6 weeks is the normal heal time for tendons and ligaments.

There are plenty of deep tissue laser light therapies that should help with tendon/ligament healing. Check with local Chiros and some PT's. There are even at home systems that use a lower intensity light therapy to encourage healing.

There is a researcher who specializes in whiplash trauma at Oregon Health and Science. His name is Michael Freeman forensictrauma@gmail.com. He may have a recommendation for you.

I can understand how a PT could mess you up. Many PT's get too focused on range of motion exercises. I am surprised a PT was doing eye exercises. Have you had a vision assessment? Eowynn has experience with vision work.

I have to be very disciplined with how I turn my head and neck. I have had to be careful for 10 years or more. My left occipital condyle pops and sticks. If I let inflammation set in, I can be a mess.

I learned that doctors and PT's only help but can not cause improvement alone. I need to be 75% of the process.

Have you been assessed by a physiatrist? The right one can be a lifesaver.

My best to you.

What kind of a vision evaluation did you have?

You can find practitioners who will do Vision Efficiency Evaluations at http://www.braininjuries.org or http://www.nora.cc The VEE is different from a regular medical eye exam.

I appreciate all your responses Mark, I really do. I will look into what you have provided. I just looked into the visual clinics you spoke of, and like what I read. I am going to call a few of them and see what they say about my situation and if I can be helped.

I am just afraid that they will bring back all my symptoms and worsen my eye complications like this schmuck in Minnesota did! I did simple eye exercises such as follow a pen and pointing a pen and moving it towards your face and back out away from your body that sparked major nervous system complications. Heart rate and complete sensitivity to light, movement, Nausea, dizzyness, etc.

After educating my self on how the neck can cause many symptoms I can tell how extremely tense I am. When I drink alcohol(I can tolerate it now fine after 3 years of not drinking) I feel best when I drink. I feel energetic, more fluent and mobile, and less pain in my neck. More cognitively sharp, and motivated. I know I should not be drinking, just stating how it helps.

I smoked marijuana for 2 years as it helped all of my symptoms throughout my pcs before I went to the PT in MN, and literally feel it saved my life. Nausea, dizzyness, depression, stress of symptoms, etc were controlled. I cannot tolerate it now as it locks my neck up and gives me more pain, which I do not understand.

Visual problems are the main problem now, along with not being able to exert over a long period of time. I never had major problems with tracking or reading even during the beginning of PCS except for sensitivity to light and motion sickness in the car and what not, but after these eye exercises and upper cervical disasters it went to hell. Unbearable at times.

Eowynn, I went to the U of Iowa for a Neuro Opthamologist appointment last summer, which essentially was the same as a regular optometrist and that ****** me off. I had a .75 prescription given after. They said nothing was wrong, and had no idea what was going on when my eyes were absolutely painful and felt as if they were being pulled into my sockets.

I really feel that alot of my symptoms are muscle related, and this is why I going to try MMTR in canada as I feel I am runnning out of options. I am going to be 24 in april and only want to work and support my self. I was an athlete all my life and have great pride in work ethic and to still not being able to work is the most frustrating thing.

I really appreciate you guys taking the time to read my saga and provide information and suggestions.

Jon Groves?
 

Hi... I am wondering if you saw Jon Groves in MN? I am seeing a colleague of his now at HCMC in Minneapolis praying for a miracle. I am 6 months in but constantly feel off balance, light sensitive, dizzy, and nausea that is unbearable. This is honestly a living hell. I am afraind I will never get my life back.

Sara...you will get your life back! Mine is SLOWLY coming back (16 months and counting.) Living hell is how I have described it too. Would not wish it on anyone....(maybe my boss for a day so he can stop thinking I am a slacker:)
Hang in there!

After 4 months at mmtr in guelph ontario, and with headaches gone and nausea disappearing, but neck and shoulder pain still an issue, my daughter decided to get a deep tissue massage locally over the Christmas break, and not at mmtr. Symptoms came back with a vengeance. Nausea and extreme neck and shoulder pain, dizziness all came back. The setback was very regrettable. Mmtr getting us back on track again but it takes time. To manage pain in between sessions, we bought a body back buddy to release trigger points. Mmtr is not a miracle cure, but if you are desperate for relief from your symptoms, then their methods truly work. Also started using purica recovery and pain is getting better. It is very expensive and only used it for a month now but it seems to be working.