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Chiari and syringomyelia help
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Chiari and syringomyelia help

I was just diagnosed on 1/18/2013 with chiari and syringomyelia. I have a lot of common symptoms. I have since childhood but always was told it was in my head. im in the process of seeing a chiari specialist but untill then i have a few questions i was hoping some one might be able to answer. my whole childhood I've had many symptoms but was wondering if these are also part of chiari. I always had to take cold showers because if It was to hot i would get very dizzy,nauseous ,headache and have to sit for 10-15 minutes untill i could get out. I wouldn't last more than 5 minutes in a hot bath ive never been able to take baths as i get the same feeling. Also Whenever I use a hot pack it gives me the same feeling. Recently before I was told i had chiari and syringomyelia i was going to the chiropractor and he would put big heat packs across my back and they didnt feel that hot at first but everytime he used them i would get so sick with the dizziness feel like im about to pass out tunnel vision horrible nausea just a terrible feeling all together Is this part of the chiari or syrinx? Another big issue I guess would be that I have always since I could remember have this protruding lump at the left base of my skull seeming to match where the chiari shows on an mri. Usually its about the size of a dime but at times grows to be the size of a quarter probably bigger.Today while putting my son to bed thinking of all the things that match up with this I decided to feel if he had any sort of bump there and there was nothing and then I seen if my fiancee had a bump to see if this was normal and he didnt have one. I showed him the bump that I have(which is acting up at the moment) and an mri of chiari and he agreed this wasn't normal. Does anyone know what this huge lump that grows is on the base of my skull is? could it be from the chiari?
Tags: chiari malformation, syringomyelia, growing lump on base of skull, sick from hot showers, sick from heat pack
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620923_tn?1405964489

  Hi u deff want a Chiari specialist not just a Dr familiar with it...u need someone with experience.....Do u have other EDS symptoms, do u bruise easily, slow to heal, have a hiatal hernia, joint pain, ......

I am not familiar with that name, but I know there is a Dr Barth Green in Miami, FL.....

If the other Dr will do more testing and if it is close u may want to get as much done close to home....but, if they r considering u for surgery, make sure u get opinions from a few specialists first and go with ur gut.
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Avatar_m_tn
also doctor notes from an orthopedic said..." facet joint laxity at 4 levels in cervical spine" What does this mean is this from the syrinx?
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

The dizziness in a hot shower could be from a related condition call POTS...a tilt table test is done to determine this as well as checking for other symptoms related to this condition.

The lump could indicate an issue with ur lordosis of the cervical spine or if ur odontoid is retroflexed....these 2 issues could cause a lump...

The lump could also be a knot in the muscle as we tend to get a lot of tight muscles it the neck and shoulder area.

I hope u know u can not go back to a chiropractor...no manipulation of ur neck !! This could make u worse.

The joint laxity could be another related issue Ehlers-Danlos, it cause the connective tissues that hold the joints in place to go lax, and the joints shift, and can pop completely out of joint....this is important to be tested for as this condition can affect how u feel and heal post op.
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Avatar_m_tn
Im hopefully going to see a neurosurgeon in tampa named Dr. balis. Have you heard of him? I guess he specializes in chiari or maybe knows of it. will he test for eds or POTS? Or do I have to go to a special doctor for that? I very much appreciate your help I'm a stay at home mom with NO HELP and no one understands, My fiancee thinks im crazy for researching anything but Ive been sick most of my life and finally got some sort of a lead with the chiari and syrinx I just want to know whats wrong with me. I found the beighton test and I dont think im hypermobile the only things that qualify are my legs curve backwards (people have always commented on my weird posture) and my wrists are pretty floppy. I do crack with every step or move I make. My joints hurt all the time. im always exhausted and most of the time just lay around. My arms did pop out of the socket when I was younger maybe 2-4 years old. Also I'm very sensitive to any kind of pain medication ive ever took I get extremely dizzy and sick which makes treating my symptoms difficult.Mornings are also very hard for me everyday I wake up nauseated with headaches everyday it usually takes me 30 minutes to get up the courage to get out of bed. I cant stand for long periods of time or bend over because I get sick. I guess what im asking in  this long story is how do I go about getting a doctor to test me for these things especially if im not hypermobile?  i feel hopeless because ive always been told its in my head and I feel as if this doctor is just going to tell me the same. I dont know where to start with all of this!!
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Avatar_m_tn
also with the chiropractor I went for a year 3 times a weeks the first time they cracked my neck I got so sick so I told them to never do that again. But for a year I did put up with the heat pack that made me ill and the clicky thing they use all over your spine and massage therapy and realized it was only making things worse before even getting a diagnosed with chiari/syrinx. I kept going even though I was sick everytime because they told me it would get better and once I realized it wasn't I just stopped going.
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620923_tn?1405964489

  Hi u deff want a Chiari specialist not just a Dr familiar with it...u need someone with experience.....Do u have other EDS symptoms, do u bruise easily, slow to heal, have a hiatal hernia, joint pain, ......

I am not familiar with that name, but I know there is a Dr Barth Green in Miami, FL.....

If the other Dr will do more testing and if it is close u may want to get as much done close to home....but, if they r considering u for surgery, make sure u get opinions from a few specialists first and go with ur gut.
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Avatar_m_tn
I do bruise very easily but for the healing I've never really thought about it. Honestly i've took it very easy growing up as I've always had a hard time balancing and Doing certain things most people could do. i've never gotten any really serious injuries. I have scars everywhere though people comment on them often and to be honest i  dont know where most of them came from. What would be considered healing slow? Did you know that You healed slow all your life or was it after surgery that you realized?
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620923_tn?1405964489

  The slow healing and scars is a symptoms of Ehlers-Danlos a related condition many with Chiari also have, and it is very important to rule out  if u have this B4 u consider surgery as it can affect how u feel and heal post op.

Many with EDS develop issues with pain meds, allergies they never had b4 and that includes the dura patch and stitches .....even the tape on gauze.....

I always knew I was slow to heal and that I bruised easily, and I always mentioned it to Drs, it was my Chiari NS that told me about EDS.

My NS also told me what precautions he would take to prevent issues for me post op.

I did not have issues other then I did take a longer time to heal ,...but I knew that going in.
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