I had my surgery 8-12-2013 - I had the usual problems headache - neck pain - pressure on the neck - ear pain - dizziness but the most troubling and why they did surgery stat was it was causing me to stop breathing at night. It was scaring me really bad. I never had sleep apnea before - I'm not over weight or smoke and it started with all the other problems so it was assumed the it was Chiari related.
I started PT about 3 weeks ago and about that time alot of my symptoms started coming back so the DR said to stop PT until I do my MRI. I go for my MRI tomorrow.
Right after surgery I had a few episodes of waking up feeling like I was choking, I didnt worry to much as I figured the CSF fluid was probably moving around. The DR didnt think it was anything at my post- op appt.
Now I'm having these episodes nightly and the apnea has come back - I'm so upset. I have tried to keep a positive mind frame but I'm really starting to get depressed
I have Hashimotos and sjgrens - but the Rhuemy Dr doesnt think that either are from them.
ANy advice would be appreciated
<p>It says that there is a demonstartion of CSF flow within the foramen magnum and premedullary cistern</p>
<p>and that I have stable muttilevel spondylosis with marked left c5-c6 and c6-c7 congenital and degenerative central canal stenosis</p>
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<p>I'm trying to prepare my questions for the Dr and would like any advice that you think I should ask - My main concern is the pressure & pain in my head - and the apnea and swallowing episodes I have at night. All of these I had before the surgery and actually the apnea is a little better since the surgery but still freaks me out when I wake up gasping for breath.</p>
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<p>Any advice would be appreciated - I like my DR very much but as you know their time is limited so I want to be prepared with the items I should get answer on</p>">
I have an appt to see DR tomorrow at 8am - I went and picked up the CINE MRI Today.
It says that there is a demonstartion of CSF flow within the foramen magnum and premedullary cistern
and that I have stable muttilevel spondylosis with marked left c5-c6 and c6-c7 congenital and degenerative central canal stenosis
I'm trying to prepare my questions for the Dr and would like any advice that you think I should ask - My main concern is the pressure & pain in my head - and the apnea and swallowing episodes I have at night. All of these I had before the surgery and actually the apnea is a little better since the surgery but still freaks me out when I wake up gasping for breath.
Any advice would be appreciated - I like my DR very much but as you know their time is limited so I want to be prepared with the items I should get answer on
I am sorry you are having these problems. Are you having any Dysphagia issues? A lot of Chiarians also has excess thick secretions in their throats at times. We have many Members with Sleep Apnea. Sleep Apnea is very serious for people with CM2. Have you had a sleep study post surgical? Please don't get upset. I know how disappointing having symptoms return is.....it's kinda like a kick in the stomach. It could also be from related disorders. Wait till after your MRI tomorrow. Are the doing a CINE MRI by any chance? Please let us know what they find out.
Also don't be surprised if your Hashimoto's disappears and your thyroid functions become normal over time. I will try & find the research. Mine T3 & T4 are totally normal & I haven't taken medicine in years and was totally shocked as was my Dr. when it happened, but is a positive side effect post CM.
I would think the apnea and choking are from CM or Nerve Damage. My Dysphagia was from Cranial Nerve Damage from MVD Surgery or CM Surgery. It is very scary at times.
I am sorry you are having these problems. Are you having any Dysphagia issues? A lot of Chiarians also has excess thick secretions in their throats at times. We have many Members with Sleep Apnea. Sleep Apnea is very serious for people with CM2. Have you had a sleep study post surgical? Please don't get upset. I know how disappointing having symptoms return is.....it's kinda like a kick in the stomach. It could also be from related disorders. Wait till after your MRI tomorrow. Are the doing a CINE MRI by any chance? Please let us know what they find out.
Also don't be surprised if your Hashimoto's disappears and your thyroid functions become normal over time. I will try & find the research. Mine T3 & T4 are totally normal & I haven't taken medicine in years and was totally shocked as was my Dr. when it happened, but is a positive side effect post CM.
I would think the apnea and choking are from CM or Nerve Damage. My Dysphagia was from Cranial Nerve Damage from MVD Surgery or CM Surgery. It is very scary at times.
Central sleep apnea is the most common reason to perform Chiari decompression in children. Less common in adults but still happens.
If you are getting your MRI tomorrow, let me suggest that you include a cine study on there. Your surgeons could call that iin.
If CSF flow is still blocked, you may need re-decompression(I know you don't want to hear that but recurrence of symptoms this quickly after surgery is reason to pay attention).
Kb, I did some PT before i new i had any of this and it made my symptoms so much worse and brought on new ones. I think it’s because I have EDS- stretchy ligaments in my neck that cause instabilities of the cervical joints, and subsequent cord compression, brainstem and or medulla compression. Have you looked into EDS/hypermobility? If the cine comes back without evidence of flow restriction please look into it (look into it anyway :)Some chiarians have perfectly good decompressions but continue to have symptoms because of the EDS/ instability problem. I’m terribly sorry the symptoms have returned- it’s a lot to swallow. But don’t give up hope- not every bodies journey is over after a decompression.
Important question… Not ignoring the conversation at hand but there are support groups out there for families of alcoholics out there. Are there any for for families who’s loved ones are suffering from Chiari Malformation???
We have a lot of family members that are Members on this forum. I don't know of any specific groups just for family members of Chiarians. We do have a Group for Friends and Families of Chiarians.
You have already had your MRI so I hope you did well with your claustrophobia. They do have open MRI Machines just so you know in the future. I honestly do not know if you can have a CINE MRI in an open machine,but will find out.
A CPAP Machine is a Continuous Positive Airway Pressure Machine- They are prescribed for sleep apnea. These links will give you more information.
I have an appt to see DR tomorrow at 8am - I went and picked up the CINE MRI Today.
It says that there is a demonstartion of CSF flow within the foramen magnum and premedullary cistern
and that I have stable muttilevel spondylosis with marked left c5-c6 and c6-c7 congenital and degenerative central canal stenosis
I'm trying to prepare my questions for the Dr and would like any advice that you think I should ask - My main concern is the pressure & pain in my head - and the apnea and swallowing episodes I have at night. All of these I had before the surgery and actually the apnea is a little better since the surgery but still freaks me out when I wake up gasping for breath.
Any advice would be appreciated - I like my DR very much but as you know their time is limited so I want to be prepared with the items I should get answer on
Kb, with returning symptoms after a decompression it’s a good idea to consider the usual suspects, and I would discuss these things in your appt. Now, like with regular doctors and Chiari, these tend to fly under the radar of even some Chiari NSs, so we have to advocate for testing to rule them out.
•EDS
Can be diagnosed with Brighton Beighton tests
•Cervical instability including basilar invagnation, including vertebral movement from unstable ligaments. Can be diagnosed with upright, flex extension Mris and rotational CTs
•Dysautomomia including POTS
Not all chiarians have these but there A LOT of us who do. Ask if CFS flow is normal, any remaining herniation? Scar tissue build up?
The apnea and chocking are a big deal- not to be swept under the rug. Good luck and let us know how it goes.