9 Months PCS & I feel so lost
 

I have been lurking here since last fall when I came across this forum after suffering a concussion and long lasting PCS. I wish I would've had the nerve to comment before now, the information from this group has been the best out there. It is nice to find a place where people understand.

My story (excuse the poor grammar and descriptions, my writing has really suffered PC)
I suffered a concussion when I was hit on the back of the head, just above my neck by a marble table. I immediately felt concussion symptoms but refused the ambulance as I was at a business function and I honestly didn't know what I was feeling as I had never had a concussion before (or at least I thought I hadn't). I didn't want to make a big fuss so I put ice on the back of my head and rested for a little while. It wasn't until I drove home that night that I realized something was seriously wrong. Doctors the next morning told me that I had PCS and I needed to rest for 3 days. No tv, reading, computer, etc. The headaches, dizziness and sensitivity only got worst so I went back to my own GP who told me that in some cases it can take 3 weeks so to continue to rest. I am a mother and was a business owner in the busiest time of year, rest wasn't something that was easy to do. Add to that my husband not working because he was laid off 6 months prior and the stress from resting felt worst than the symptoms from trying to work. I worked a couple hours here and there trying to keep things going, I didn't have any staff and if I didn't work I didn't make any money.

I have visited my GP almost weekly since the accident, and had to push for a referral to a neurologist. I had a CT Scan in the ER 6 weeks after the accident I was having difficulty standing, I was so dizzy I was falling over. It came back clear, ER doc told me to rest longer and couldn't give me an idea of how long.

After getting the referral run around, doctors refusing the referral, etc. I finally, 7 months PCS, got an appointment with the brain clinic at one of our cities big hospitals. 4 hours later and I had no more information, the doctor I saw was more concerned with my possibility of depression, which after an hour agreed that I was fine there. I told him I had no problem with motivation, my issue was that anything I wanted to do I couldn't because of the PCS symptoms. I asked about exercise as the 7 months of "resting" and stress caused me to gain 20lbs. He told me that I was allowed to start walking around my block and nothing more. I was disappointed to leave with no further information. Everyone kept telling me to wait, never once did I get any advice on how to better manage the symptoms or learn to function in regular life.

I've since learned that this doctor was a psychiatrist and not a neurologist, like my doctor recommended, this has left me even more frustrated by how no one seems to be able to help and our medical system seems to be failing me. I am on more long wait lists to see a neuro ophthalmologist. :(

I started taking matters into my own hands and reaching out to our provincial brain injury association. There I have received some great help. They told me that I have extra symptoms because where I was hit is what controls things like my vision, etc. And because the force would've caused my brain to smash off the front of my skull I have damage there too… :confused: They have told me about some other options, most of which costs money that we just don't have right now. They are going to get me into see a neurosurgeon who specializes in concussions, but who knows how long that will take.

My husband has finally started working, but isn't making enough to cover our expenses. My business has closed as since the accident I haven't been able to work the normal long days I put into it and sales dropped off so it ended up costing me money that we didn't have to keep it going. The stress of how we are going to pay the bills and feed our kids is eating me alive each day, I just applied for a couple jobs today. I am not sure how I will be able to keep them, but I am desperate.

I am sure most of what I just wrote doesn't make sense, I can't even read back over it without getting confused! I am open to any advice or knowledge that any of you can share. I feel like I am not getting anywhere very fast the traditional routes. Am I unrealistic to think that over 9 months after the accident I should be starting to see some improvement?

KnockedOut,

Welcome to NeuroTalk. Sorry to hear of your struggles. They sound very familiar.

My first impression is to get an in depth assessment of your upper neck. An injury and inflammation can be causing all kinds of symptoms.

While you wait to be seen by someone who can help you with your neck, you will benefit from working on good neck and head posture, especially when resting or sleeping. Good neck posture means straight neck posture. Not thick pillows except when you are on your side.

Welcome to the run around with doctors that is common to injuries like yours.

My best to you.

Sorry to hear about your accident and ongoing issues.

What city / province are you in? There are quite a few of us in Canada and that might help us make some recommendations in your area.

Starr

welcome to the board. you are so not alone. with negative tests it is hard to get anyone to believe us. I've only met one doctor who told me they failed us by not making a machine good enough to detect injury. diffuse tensor mris are said to be able to but they are hard to find. maybe you can ask mark in Idaho about the vitamin regimen. he and hockey are the most knowledgable and can help you. you story isn't crazy. it is all too familiar. you are still a little early I the recovery so hang in thereand feel free to post.

Dear KnockedOutMom,

I feel for you. I used to own a small business. But after my 2011 metal rail concussion I lost it. I loved what I was doing (in fact, it's been 3 years and I still get phone calls on my cell regarding my services from time to time). However, I can't do that anymore and chances are that I'll never be able to. Now, I'm a fat homemaker (gained 30lb) with very limited abilities. Well, life goes on.

I can't tell you anything optimistic. Read my signature - I was at the completely sympton-free stage and then a nasty fracture, surgery followed by a very minor bump - and all of my symptoms are back. I'm still suffering with almost no improvement.

What helps: vitamins (my life savers!), trying to stay optimistic, my extremely supportive PCP, family and my cat, light exercises, volunteering in my kids school, this forum, meditation, brain-friendly activities (like adult coloring books or crafts), healthy diet, Excedrin for headaches , celexa for depression, staying organized and trying to follow the same routine every day, so I won't forget anything.

What doesn't help: acupuncture, my neurologist, fake friends who disappeared from my life because I wasn't the same person anymore, trying to be tough and push through the symptoms, Amitriptyline for headaches(this is personally for me) - made me wanna kill myself, thought that I will recover 100% again and will run my business.

I don't know if this will help you! I wish you a complete recovery!
Marina

I am in the Toronto area in Ontario.

Thanks! I've been seeing my chiropractor usually weekly for 6 months now, I do notice if my neck is stiff that I suffer a lot worse with my other symptoms.

Thanks. It is nice to have found this group and people who make me feel like I am not crazy!

I have had many head bumps since my first accident, the most recent was a couple weeks ago getting in my car. It took me a couple minutes before I could move. I usually always walk into door frames when I am coming out of rooms, my left arm is always bruised! I was never a klutz before, but I sure am one now. I can't seem to do anything without bumping something!!

If your chiro is doing a "twist the head and pop the neck" adjustment, it may be too aggressive. There are gentler adjustment techniques.

Sunnybrook Hospital is supposed to have an excellent brain injury clinic.

The Ontario Brain Injury Association has a toll free helpline: 1-800-263-5404. They will:
answer your questions about TBI, rehabilitation programs, WSIB financial assistance (ODSP, CPP etc)
provide you with information about the services and benefits you may be entitled to receive
discuss issues you should be raising with medical and legal professionals
explain the often confusing terminology associated with TBI
provide you with the contact information for your local brain injury community association
connect you to the Peer Support Program which provides survivors with the opportunity to connect with other TBI mentors on a one-to-one basis

No he doesn't do the manual "twist the head and pop the neck"! I've had that kind done before with other chiros and I don't like it. He does a really gentle pressure and using the table, sorry I can't remember the name of it.

Thanks Hockey! I go to St. Mikes again in a couple weeks. I got to them through the ABI Network, it is amazing how difficult it is to see specialists in our country!!

I spoke to a great lady at the OBIA, she was helpful although I didn't get as much as you listed above. I am really trying to find a local support group, I just need to talk to people who get it. She did tell me about a great neurosurgeon who we just had my doctor complete the referral to, fingers crossed it doesn't take me a year or two to get in and see him!

Yes, it is so hard to access quality care.

At least you're near a large city. I live in the boonies. What specialists we have are the ones who couldn't cut it anywhere good.

My neurologist, who is older than dirt, rejects completely the notion of neuroplasticity. I suspect the last journal article he bothered to read was chiseled on a stone tablet in hieroglyphics. :(

I live in a very small town in Ontario, and I laughed at your assessment of your neuro, sounds the same to me as the doctors/neuro I saw in the local area, LOL. I ended up driving 1.5 hrs each way to see a doctor to help me with my concussion. It sure made things difficult when you are tired and have headaches, etc. to drive all that way, but I'm glad I did.

Chiro is a scam. Plain and simple. Spend the $ to see a neuron-opthamologist to rule out any vision related issues that could be worsening your symptoms and use prism/tinted glasses for treatment. There aren't many of them out there, but it is worth flying/driving great distance as you may find significant relief if it is indeed vision related.

Chiro is not a scam. There are many things, mostly basic skeletal, that they can treat very successfully. Unfortunately, many chiros claims they can treat things that they have no ability to treat.

What did the chiro you saw say was wrong with you and how did he try to treat it ?

Did you get a negative benefit or just no benefit ?

There are about a dozen different chiro disciplines.

it is very weird at least to me that I can press on a certain part of my front breastbone and the pain shoots up the back of my neck and into my head and into my forehead. What the heck

The chiro said my alignment was off(isn't that what they all say) and he did this gentle manipulation to put it in back in place. My BS detector was going off the second I walked in the place but I was desperate so was willing to try anything. They got $700 off of me before I did more research on the subject and realize not only is it a scam, it is very dangerous. He also brought out this device that supposedly detected my body energy and lit up if was positive. Some people do say it benefits them but then you look at the people who have died/severe injuries from it and it is not worth the risk.

older than dirt lol that was hysterical. If Nora plasticity doesn't exist then how did I get my typing skills back after completely losing them and other things that have happened. What an idiotI have learned the hard way that you must be very careful with older doctors because they might not know how new medications interact with older ones and they just might not have read anything new with the past 20 years or in one case they just might be senile

todayistomorrow,

You found one of the crack pot chiros. There are many. But there are also many very good chiros. The horror stories you have read were put out by the American Medical Association. They got taken to task with the federal government and were issued a cease a desist order. Unfortunately, once the stories make the press, especially the internet, it is impossible to remove them.

The simple proof to the safety of chiro is their malpractice insurance rates. They are extremely low compared to medical doctors. Medical doctors' mistakes account for over 100,000 deaths a year in the US and scads more injuries.

The chiros I have seen have never said my alignment is off except for one. I have seen 18 over 34 years. Only a half dozen were worth my hard earned cash. Most were focused on 'wellness chiropractic,' a business model oriented toward generating routine visits and revenue. Those that did "show and sell" with gizmos were rejected early. Unfortunately, due to moves, I had to try new chiros to find the good ones.

The few examples of deaths and paralysis relate to neck injuries. I caution people about overly aggressive neck adjustments. Even then, some people have other issues that make them poor candidates for any form of neck therapy.

Did you know that the hair salon is a dangerous place ? The shampoo sink can cause vertebral artery dissection and dislodge plaques causing beauty parlor stroke syndrome and also lead to salon sink radiculopathy.

I am sorry to hear you did not notice a benefit. Please don't paint all chiros with the same brush.