What to expect

General
1

Hello all, just a bitt of background on me. first I am 35 male and have had bad head aches, occasional blurred vision, cant really call it ringing of the ears I would describe it as hearing the ocean in my ears like listing inside a sea shell, fine motor control problem's irritability, bed wetting, for as long as I can remember. my mom took me to the pediatrician who would check me out but no test was done till I was about 12 or 13 when he sent me to have an EEG that came back normal and he said to treat the head aches with Tylenol and deal as best I could. yea I know a quack. he also said it was all likely due to the serious auto accident I was in as an infant and nothing could be done just to manage and cope.

at about 16 I started having numbness in my hands and feet he sends me for an EMG that comes back normal and say to continue coping.

around 20 I started having day time issues with the bladder went to a urologist whom all he wanted to do was prescribe drugs and not really find the cause tried that for awhile and it did not really help.

so I did what I was accustom to and continued coping about 27 I went to a new doc laid it all out to her and she looked at me and says wow this has been going on for a long time, I don't think I can help you. at this point I just pretty much gave up and said oh well this is life deal with it.

about a year ago I met a new friend who has a child who has spina biffida and to look at the child you would never know, I know a couple of other's who have it and it is obvious, the more I got to know the family and learned more about the child and what he goes through the more I said wow this sounds way to familiar to me. I did some research and learned more about it till finally I went to my family doc and demanded he check me and he laughed at me and says if it was anything like that it would be obvious but I finally got him to send me for x rays and an MRI and when the results came back it said mild scoliosis, no degree was stated. cervical spinal stenosis. Chiari malformation compatible with type 1. there was a report on all the vertebrae except c1/c2.

I finally had answers I was not shocked I was relieved and the look on his face when he had to admit something really was causing all this that was not the accident I was in as an infant was priceless. he then referred me to a neurosurgeon who I will see in September.

sorry for the long post I just wanted the whole thing out so to get the best opinion's possible after looking at the MRI pics I seen a lot of discoloration in the spine through the cervical vertebrae that in my comparison to other pics online line appears to be a syrinx, I ask my doc he just says its not on the report and to wait till I see the neurosurgeon, I am concerned about the lack of a report on the c1/c2 vertebrae. could they be fused? I know its hard to say just wondering if that is common? what is in your opinions the likely hood of needing a shunt? and if I did would it be done at the same time?

thank you in advance for your reply's,

hope this was not to hard to read a s I have always had a hard time keeping my thoughts in order.

2

Just keep an open mind and listen to the surgeon. Don't allow them to tell that any of your problems are caused from your CM. I hope that you have a good surgeon who will listen and help you. when I went my NS ordered more tests to make sure everything was clean and he could eliminate any other problems. Had had a 2 hour MRI and aCT scan. I hope you will find some release soon. I had decompression surgery on June 17 and still in the recovery part. Keep us updated!

3

Dave, you did a great job with the post, and wow you have been putting up with a lot for a very long time. It’s hard for me to know what’s showing up in your MRI. The NS will be able to determine if you have a syrinx or c1/2 pathology. I’m glad you are seeing an NS. Your symptoms, especially the I incontinence and bed wetting say you should have tethered cord ruled out- for sure! And please start doing research on EDS. Ehlers Danlos syndrome is a connective tissue disorder (collagen/elastin) that affects soft tissues. Many Chiarians also have EDS. It is important because if you have EDS you myst be screened for cranial cervical instability- your ligaments may not be holding your head on correctly. People with cranial cervical instability who have a decompression done without correcting the CCI and fusing the head to the neck will continue to have the same Chiari symptoms and worsening symptoms. Not all NSs screen for EDS and CCI. This should be addressed with your NS. Other types of cranial cervical instability are basilar invagination, sharp clivo axial angle, and retroflexed odontoid.

You can google the Brighton criteria and Beighton criteria to find out about EDS.

Other things that are common with Chiari are:

Vitamin D deficiency

Magnesium deficiency

B deficiencies

Dysautonomia

So glad you are moving in the right direction.

Jenn

4

Pretty much the same story for me...it's only with the progression & development of MRI machinery & a dedicated PC that I will finally get to see a Chiari specialist, also in September. We also, through my recent reading on Ehlers-Danlos, have figured out why my dad was born blind, why my brother has had over 60 cysts removed from his back and why both my children have had their issues (they share my insomnia) my son had a thyroglossal duct cyst removed on his 16th birthday (yeah, I was quite popular that year, LOL) and my daughter had hypermobile elbows when she was young.

I have all the earmarks of a thoracic syrinx & 90 % of the Chiari symptoms, the most bothersome of which is the swallowing issue, loss of arm strength, tingling in both feet, and both ears show fluid on the drums, maxillary & sphenoid sinuses are fluid filled, so loss of hearing (permanent damage we don't know yet).

It is, at least at my age of 48, gratifying to know that it both IS and IS NOT all in my head.

5

79dave, I have the opposite problem. I feel hot and get hot so easily and have an issue cooling myself off.


When I do get chilled, I have a hard time warming myself up.


I just basically have temp control issues.