Help with do's and don'ts for concussion

[adventurer53]

Hi This is Adventurer. I took a significant fall and tumble down some rocks while helping move our canoe on a portage. I thought I just got banged and bruised but that was the end of September and I recently went into see several Doctors and I fractured my 8th rib from the back, received whip lash in the neck, possibly have a spinal fluid leak again. Have had eight surgeries on the mid to low back two inside the spinal cord - was born with a tethered cord. I am also implanted with a spinal cord stimulator . Now the Doctor says I have a concussion . My neurological symptoms are getting much worse. Ringing ears, sensitive to light, nauseous , thinking causes worse headaches, hot and cold sweats, fingers go numb. My question is how long will I need to stay down and quiet? They say to have total rest both mentally and physically. I shouldn't be writing now but need some input. The answer I am getting is until the symptoms go away and stay away! The left side of my head already has damaged nerves from long term spinal fluid leaks- at least five of them. One when they hospitalized me with a drain into the cord for ten days. So that side flares easy and that is the side that is affected here the worst. Life has gotten quite medical in the last ten years. Fortunately God has given me a good sense of humor and a great family and friends. Joy and peace for the adventures for the most part'

[Viva001]

I have found the book "How to be Sick", by Toni Bernhard, to be helpful.  She also writes articles for Psychology Today, which you can access for free.  (shes also on facebook & posts uplifting sayings or photos of artwork).

Also, our senior center offers a class on coping with chronic illness, so you might want to see what's being taught elsewhere.

I hope you feel better soon!

[adventurer53]

I talked with my pain Doctor from Mayo. He agrees that I have a spinal fluid leak again. He said I've had enough that he is confident that I'm right- and he and I know I am susceptible to them. He is contacting a neurologists who I will see to set up for a blood patch. The problem is that we don't know where the leak is at and we can't do the testing to locate it. In his words 'you're a very complicated case and our options are few.' In the mean time I will continue laying flat and pray it heals on its own. Do you happen to still have the list of ten or twelve things never to say to someone with Chiari? I used it at our cancer support group awhile back and some would like to have a copy. Thanks for your input. Like you and I thought -CSF leak. Oh they also still think it's a concussion too and it could be as I hit hard on my knee and then I think it was the back next- at least at some point it was the back hard enough for a fracture- but I got up and we paddled back and I portaged with the day pack- I use my paddle as my cane.

[selmaS]

  Hi...I know there r ways to get info to start Chiari & Syringomyelia groups and support on how to do that....I will check around as to where u can get info on a general chronic pain group......

I hope u get answers, I feel u either have a leak, or developed a new related condition...ICP, or POTS......

I look forward to hearing updates on u....and u have a very Merry Christmas too and a Healthy and Pain free New Year : )

[adventurer53]

Hi Selma-it's always great to hear from you. Like you I've had many csf leaks and also ate laying down. Lots of finger food! Right now it's being treated as a concussion and I do have directions to rest rest rest. I have not been watching Tv or having loud notices around. I put on relaxation music without words and feel good when I'm down but get all symptoms back when I am upright. This has been going on for two months now but at first the rib pain was worse. I see my primary tomorrow and will be hearing back from my pain doctor and neurologists from Mayo in a few days. Just isn't fun to feel the life being sucked out of you. I know you understand. I had a few good months this summer and was thankful for that. I'm thinking of starting a support group for people with chronic pain for the community at our church. If you have ideas on helpful sites or training please send it my way. I've been adopted into a cancer support group for over six years now and see the value and now the need for this one. My question to myself is-will I be healthy enough to lead this in the future?  Enjoy Christmas! I will post if I get any answers.

[selmaS]

   Hi...so sorry about ur accident....the leak itself should be able to heal in approx 5 days of laying flat and keeping hydrated.... adding caffeine helps...and that depends on the size of the leak..I had a leak and in 5 days it was healed , but I ate laying down...only got up to go to the rest room and I did so with help as I could not walk straight......and yes u should refrain from even watching TV as it stimulates areas of the brain u need to rest...sleep is the best way to heal and with a concussion I would think they gave u instructions....

I hope u r feeling better soon <3

[adventurer53]

Thanks so much for taking time to reply!! You did give me more info that is helpful. I think I am in for a slow recovery because of those damaged nerves but will go forward with hope knowing that God will bring me 'joy pops' along the way and in slowing down it makes me think about what is really important in life. You have had a rough road lately it sounds like. I hope and pray your symptoms will get less and less. For my spinal fluid leaks they have me take huge amounts of caffeine. I also use relaxation music and visualization of relaxing places. Many thanks!

[AnnieDear]

Hi, there! Sorry to hear you're having so much trouble lately. I'm not sure how much I can help you, but I was in a car accident in June 2011. It was after that accident that I was diagnosed with Chiari 1 and a syrinx. My doctor also said I had a concussion. The neurosurgeon who did my decompression and laminectomy in March just saw me in October. He said I'm doing well, but that I should still be limiting my activities and if anything worsens my symptoms to stop (um, sure...!). As for the concussion, he said that it usually takes 4-6 weeks to begin healing and up to 2 years for recovery. He said most people are recovered after fully resting for a few days, some take a few weeks, some can take longer - especially if they have other conditions. So he said some of my symptoms may still be due to the concussion combined with the Chiari.

Good luck! Sorry that I don't have more information to help you.
Annie