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!
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)
Thank you for all the info! I will look into these things. I'm so glad you received the help you needed!
Yes. We live in AZ, and the tests she has taken have been performed at Barrow Clinic.
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???
Hi there,
I am sorry to hear it ..I was just like your wife but worse - I had decompression - the best decision I had ever made even though it was too late for me to decide..even though I may say that my surgery was successful - I am still have an occasion stiffness on right arms..sometimes lower back (L1 & L2) so..I put up with it..I am drug free ..I have to do yoga each morning to make life easier..drinking 2 ltrs of water each day..change life style and try loosing weight.so the advise from Steven was really excellent ..if I have money I would like to have it as well...but unsure why other neurologist/surgeon could not do what this hospital can??? - get 2nd opinion - be firm and ask them to decompress it..put in writting...be persistent
By the way Steve, does chiari patient have to have decompression before the Institute de Chiari in Barcelona able to do that procedure?
Hi! Thank you for responding! We haven't even been able to get a diagnosis yet. They put her through several tests in Phoenix at Barrows but then told her what she is experiencing is not neurological and referred her back to her PCP, who doesn't have any idea how to help her. Being sent away really broke her spirit, and we don't really know what to do next. The neurologists at Barrow weren't Chiari specialists, but they acted like they know a lot about it. I'm not 100% sure she has Chiari, but I do know her symptoms fall in line with it, and her sister finally did get a diagnosis 9 years after first experiencing a lot of the same symptoms. That is why I posted this under the Chiari section. We are trying to avoid a 9 year wait for diagnosis. Her PCP has told her she needs to learn to live with the pain and this could be her life... we aren't going to accept that. Thanks again for the info. Do you think there's any chance they missed the csf fluid obstruction? She experiences so much pressure and knows the difference between migraines and what she is experiencing. They keep telling her it's migraines, but none of the treatments for migraines have ever helped.
After suffering for 40 years, and three states, I found a clinic that specializes in chiari in Aurora, Colorado. They'll do testing and if your wife doesn't have chiari they will tell you what she has. It's been 9 yrs since my decompression. Don't have headaches but had to retrain my brain. It takes time and patience.
Thank you so much for that information, and I'm so glad you found the help you needed! I'll definitely look into seeing a specialist.
Hi there, I promise you that is definitely Chiari ..I can bet any money on it..just be persistent and firm write to them that learning from lots of website ..its seems that is the symptom..you would like for them to give a MRI/Cine test..from there they will be able to denote and confirm - THAT IS 100% Chiari..just remember...as well ..its not the length of the hindbrain ..its whether there is obstruction on the csf flow or not..easy thing to do as well is have a Lumber Puncture test..they will asses what is the flow..(general speaking normal flow is between 9-11..anything above that (14..on ward) classify as high flow..that is quite disturbing...and need to be addressed as soon as possible..I really would like to know about that Barcelona thing...actually I am going to write to our (UK) Neuro Health Dept. if they can do this in the UK..but unsure if they have to undergo decompression before able to have this action...sound much cheaper then having decompress.. please...please go and write to your health care professional..make sure you copy to your insurance as well as Department Health..expressing that it is really effecting your daughter Quality Of Life..and ask them to take responsibility of their decision get a PRO BONO lawyer just to prepare that you mean BUSINESS...let us know how you are getting on..dont leave it too long..I wished I listen to my neurologist/neuro surgeon so It wont let my nerve..damage..please..take control...dont be put up with their lack of knowledge..
AND DONT FORGET TO PRAY
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!
So,,,patient does not decompress first before this procedure?
How much is that the cost of JUST THE PROCEDURE
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!
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.
Great information... thanks Steve! I will have her do this.
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
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