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Everyone thinks I'm nuts

I had an MRI last Friday.  I have a syrinx from T7 to T9.  I have had headaches for several years.  This one had lasted 4 weeks.  I have tinitis ahd constantly hear rushing like tsh, tsh, tsh.  Walking up the steps makes the top of my head feel like it is going to blow off.  I can't wear my hear in a ponytail.  My upper back muscles are so stiff i cannot clasp my hands behind my back.  I have bowel and urinary urgency..to the point I have to change my clothes.  I have low back pain that isn't exacerbated by anything it is just there until it isn't.  My thighs are hypersensative and sometimes feel ferverish.  I get shooting pains in my heels and abdomen and most often in the middle of the right side of my head.  i have had 4 abdominal surgeries.  My doctor ties all my symptoms to this.  He treats me like an over reactive nut..am I?  I had a skiing accident last year and a care accident 6 years ago. Please reply
9 Responses
620923 tn?1452915648
COMMUNITY LEADER
Hi Jamie and welcome to the Chiari/Syringomyelia forum.

May I ask were u checked for tethered cord? the bowel and bladder issues sound like that couls be ur issue..or depending if u have a syrinx, where it could be and the size u could have those issues also.

Any accident can trigger the symptoms of chiari to be more aggressive as it will grow...sometimes very slowly other times very rapidly.Since u were dx 10 yrs ago I am surprised the drs didn't tell u to avoid activities like skiing?

And a trauma like a MVA can cause a syrinx to develope....if it was not already there....did u have a back injury as a result?

U r not nutz, but I would rather say u have the wrong drs treating u........We do have a chiari specilist list here in the forum and it may help u locate a dr near u.

I hope u continue to post ur concerns and share ur experiences with us.

"selma"
Avatar universal
Thanks Selma,  I was not dx until Friday.  The radiologist told my doc that the styrinx was too small to cause symptoms.  He also told him if the styrinx were in my neck that he would recommend and MRI of my head but because it is in the thoracic region, it is an incidental finding.  My head hurts so bad it effects my vision.  How do I find the list of Doctors?  You have no idea how much Dr. Oro's poem meant...cried like a baby when I read it.  Thanks you so very much...

Mindy
620923 tn?1452915648
COMMUNITY LEADER
Hi Mindy.....I know what you mean about Dr Oro's poem...everyone here can relate  to it the same way you did.

So , you were having issues and they did an MRI of ur thoracic spine and found a small syrinx and said it is not ur issue and ?????

You need to see a chiari specialist and get checked for other chiari related conditions....including chiari if they didn't do an MRI of ur cervical spine or ur brain.....I even suggest one of ur lumbar spine to rule out tethered cord.

I see you live in VA, depending on where in VA and how far u r willing to travel will depend on the dr u might see...... chiari specialist list??It is one of our threads here and will give u a starting point of drs to research.It is on this first page of the forum...if u stil cannot locate it let me know...I will bump it up so u can see it.

"selma"

Avatar universal
Selma,

My syrinx is 3.8 cm x 5 mm.  I am in SW VA.  I am about 4 hours from UVA.  I found Dr. Oldfield...Know anything about him?

I have found that no one here knows anything about syringomyelia.  A Chiropractor who is associated with my doctor did an occipital adjustment on Saturday.  I had about an hour that I felt pretty good!  Then it hit again.  Sometimes I feel like someone is choking me.  I have been told this is anxiety.  It is honestly physical.  I hear rushing in my head most of the time...like when you hold a shell to your ear...then sometimes it is like tsh, tsh, tsh...

How far will I travel?  Anywhere! I called my ins co.  I have no max on MRI's and they will consider any in network Dr at 100% and pay any out of network as in.  They also   I can get as many opinions as I wish.  Thanks for the list of Docs
620923 tn?1452915648
COMMUNITY LEADER
Oh my...until u see a chiari/syringomyelia specialist please do not allow a chiro to do ne more adjustments....those with our conditions aare told to stey away from the chiropracters....sorry never heard the name, but that doesn't mean nething..do research on all drs u consider.

That rushing is most likely the CSF ....sounds like u have a blockage.

Well ur insurance comp sounds great...so call TCI....or Dr Oro whomever u feel is best for u.

And please keep us posted on ur progress
"selma"
Avatar universal
OHMAGOSH!  I could not make it through a week without my chiro.  He is the ONLY one who listens.  He went up against my MD and ordered my MRI.  He will not touch my thoracic area, but works to get my CNS balanced and calm.  He has made numerous calls for me and disregarded the radiologists statement that this is incidental.  He found this forum for me.  I can stop by his office for intersegmental traction  and/or electrical stimulation for pain.  He called my ins company for me and insured I can go any where for treatments or opinions...something my MD refused to do.  I have degenerative discs in my neck.  He has been the only voice of reason in this whole mess.  He found UVA for me and has helped me research ANY question I have.  He is researching acupuncture for me right now.  He has shown no pride or bravado.  He has really been my hero.  His adjustments are now activator only...passive but effective...let the nervous system find it's balance and rythem if it can..if not..he steps out of the way.  

620923 tn?1452915648
COMMUNITY LEADER
I am glad that he seems well informed and u get relief from it, but if he is munipulating ur neck u should be very careful...does he know about chiari too??

I am only repeating what most with chiari and a syrinx are told...however, if ur chiro is well informed and can avoid causing a problem.

U r very lucky to have a dr so willing to learn about this condition and help u like he has.

I am glad it works for u...I went to a chiro yrs ago and I miss it,....it was long b4 I knew I had chiari...

Avatar universal
I have learned that there are diffferent Chiros...mine is subluxaton based, which means he focuses on the health of the nervous system. Symptoms aside, if the CNS is imbalanced, they body cannot express health.  Once my body refused balance, he was catapulted into action.  None of my doctors could "see it" .  He knew it and reacted. My head hurts unbearably... he will do anything to relieve it.  My relief is very short lived.. minutes to a few ours maybe... but it is enough to keep me going
620923 tn?1452915648
COMMUNITY LEADER
Jamie I am so glad u r informed on this, I have not heard about the diff to know what to look for in a chiro...all I have found in research with chiari is to avoid a chiro at all costs.

I will now look into the type of chiro u have mentioned and see what I can learn....that is the great thing about this forum.....we learn so much from each other.

Thanks again for sharing
"selma"
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