My wife has been in bed with disabling headaches for 3 years, and ideas?

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Here are a few symptoms my wife is experiencing:

1. Tension headaches

2. Neck pains

3. Head pressure starting at the back of the head.

4. Hands go numb

5. Eyes feel strained and bulging

6. Feel confused and foggy

7. Kinda out of body, just a weird sensation

8. Vertigo

9. Nausea

10. Uncontrollable leg locking and shaking

She is 39 and has suffered from a non-stop disabling headache and these symptoms for almost 3 years. Almost 2 years ago she started experiencing uncontrollable leg locking and shaking, and all we've been told by neurologists is that it isn't neurological so it must be psychological. We know the tremors must have something to do with the pressure in her head because when the pressure gets unbearable the tremors occur more often, now lasting a couple minutes with a few seconds break between each episode. They used to last longer, but she is on Neurotin, which seems to help a little. This can go on for anywhere between one to a few hours. Also, she started producing audible vibrations in her ear, like her ear is having a tremor that others in the room can hear. Not one neurologist we've seen has ever addressed this, even though we have it on video. She's been tested for Arnold Chiari Brain Malformation and Normal Pressure Hydrocephalus, both coming back normal, so we are at a loss.

Any help would be greatly appreciated!

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  • Posted

    Fibromyalgia, Chiari and chronic fatigue syndrome are now all linked to reduced flow in the area where cerebral fluid flows between brain and spine.  I had the Chiari decompression surgery which saved my life, but like most patients the symptoms reappear because the cause of the reduced flow has not been addressed and the surgery itself is intensive.  I then went to the Institute de Chiari in Barcelona, Spain and had terminale dissectum surgery.  It is a 45 minute out patient surgery and does address the cause of the lack of cerebral flow.  Total cost of pretesting here in the US, the cost of the surgery, plus travel/lodging/passports came to about $25,000.  But, after spending 2-1/2 years in bed from similar sympotms as your wife, I am now out of bed raising my chidren, running the household and thanking God for another chance at life.  BEST MONEY I HAVE EVER SPENT IN MY LIFE.  Our church helped with a Gofund to offeset some of the costs.  God also led me to a modified form of inversion therapy after the Spain surgery, which is to put head down in hands for periods of 20 minutes at a time.  The only thing I can think of is that helped force bottom of brain into skull.  Gone: numb feet and legs, crippling central and obstructive apnea, crippling shortness of breath, back pain, neurological constipation, incontinence, photophobia, constant fatigue, fine motor skill problems, depression/anxiety, brain fog, cognitive issues, LOSS OF HOPE.  With God, everything is possible! 

    Thank you, Steve (51 years old)

     

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    • Posted

      Dear Steve,

      That is such an excellent advise ...would you mind letting me know their contact..

      Is just so interesting ..so what did they do in that 45 minutes... seems so expensive for that amount of time though..I wonder the neuro health care around the world don;t do that??? 

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    • Posted

      By the way Steve, does chiari patient have to have decompression before the Institute de Chiari in Barcelona able to do that procedure?
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    • Posted

      On the internet, go to Institute de Chiari Barcelona, Spain, and read all the info.  The most professional atmosphere I have been around in my journey with Chiari/scoliosis/tethered cord.  The clinic there has nurses who speak a dozen languages and fluent English.  The hospital across the street where they perform the surgery was also as professional an environment as I have seen throughout this medical nightmare.  I went to no less than 5 neurosurgeons in the US, including the one whom ultimately did my decompression surgery, and an additional 3 neuroglists.  Each would spend no more than 15 minutes at a time with me/wife and would scratch their heads as to what my ailments were caused from.  They all missed the fact that I had scoliosis and tethered cord and syringomyelia along with my Chiari!  The neurosurgeon who did my decompression later told my wife he did my compression as a sympathy surgery.  Wow!  In Spain, they sat me/wife down for 2 hours and from the pretesting they had me do here in the US/Barcelona they showed from the tests that I indeed had: Chiari/scoliosis/tethered cord/ syringomyelia and that the cracked tailbone form an accident in 1980 never healed correctly and was actually putting more tension on my spine.  The surgery they do is to release the tension on your spine which then releases the tension on the hindbrain area (Chiari area).  Sedation with a 45 minute surgery, and you are walking around Barcelona the next day, wondering why in the US all they want to do is put a hole in the back of your head and then tell you that your are healed.  I still cannot believe I had to travel to Europe to be healed, and was basically stonewalled here in the states.  I recommend this surgery to anyone, and Godspeed!
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    • Posted

      The cost in July of 2016 was about 17,000 US dollars for the actual surgery.  I was out of pocket for my Chiari decompression surgery about $9,000 US dollars.  The decompression surgery was scary and provided about 6 weeks of relief and then I was back in bed struggling to breathe, sleep, thrive.  I recommend that someone set up a GoFund account for you and have it linked to Facebook. It will really help.  Please pray over this vs decompression surgery.  I would not have had the decompression surgery if I had known this surgery was available.  Ask and you shall receive, seek and you shall find, knock and the door will be opened!
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    • Posted

      Have your wife try this:  Have her kneel in bed or on a rug with her head down to the floor/bed/rug in her hands as if she was praying.  Our brains are collagen, much like the consistency of cottage cheese.  It takes years for most of the Chiari patients to have symptoms, which as we know is caused by gravity pulling our hindbrain down into the junction where spine and skull meet.  Well, putting your head down 2 or 3 times a day for about 20 minutes each will help reverse the downward movement of the collagen and provide relief.  For me I have cranial nerve markers that happen every time.  After about 7 minutes with my head down, my mouth starts to water (lower cranial nerve and brainstem is being decompressed), then at about the 12 minute mark I start to yawn (another cranial nerve being decompressed), and at about the 15 to 20 minute mark my ears start to pop (yes, more brain stem cranial nerve decompression).  The whole goal of decompression surgery is to create flow and thus/then decompress the brain stem and related cranial nerves.  Well, this safe form of inversion therapy does just that by having the collagen (brain) move upward creating more of a space for cerebral spinal fluid to flow, which then helps to decompress the lower cranial nerves: sneezing, yawning, salivating, audial, sleep, breathing, etc.  Please have your wife try this.  It will really help and will bide time until she decides what surgery route to take.  The end result of the filum terminale surgery is to stop the taughtness on the hindbrain and hopefully provide upward migration of the Chiari tissue.  Dr. Bolognese, a Chiari neurosurgeon in New York did a study showing upward migration of nearly 3.5 mm of the Chiari mass after the filum terminale dissectum surgery.  Well, Chiari is defined as 5 mm or greater, so 3.5 upwards is a big step in the correct direction. 
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    • Posted

      Hi Steve,

      When you said put the head down on the floor..I just can't imagine it how..is it like the Muslim pray??

      Thanks because I would like to ask people to try this

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    • Posted

      Similar yes, but your top of the head or forehead needs to be a little more forward, so I guess you would say your behind is a little off the ground and not resting on your hind legs. It is a safe form of inversion therapy and that is what I do for maintenance now...but initially I had my head down more in a forward position (top of head was a little more vertical to floor/bed/rug).  This was for about two months and now I just have my head down in my hands much like the way a Muslim would pray, but again a little more forward.  I will have my wife take a picture of me this morning while I am in the maintenance position and also one of what I did initially for two months which had gravity acting a little more with the upward migration of the hindbrain.  Thank you, Steve
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    • Posted

      I have attached the photos...look similar, but if you notice I have my forehead in hands for maintenance, and head rotated more forward with head more down for the intimal two months.  Sometimes I use that initial posture if I am feeling really fatigue/exhausted and can feel some symptoms trying to arise.
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    • Posted

      Dear Steve,Thank you soo muuuucch for this - I will try to practice..I hope all the chiari patients watch this and try to copy it..see if it is working for you all ..can you please send your message..so that we can help others..THHHHAAANNNNK>>YYOU

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    • Posted

      Hi Steve,

      I do believe your motto - I had decompression already, I am one of the lucky one which have success story - I am drug and pain free - I just like to read from others because I was really suffered that  bad almost paralysed and also house bound for over 18 months - after surgery all of those symptoms were gone..I am enjoying the life I have been given by our heavenly ever living father..so my goal is to help others who are now suffering like us...

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