Chiari Malformation Post Op Symptoms

[carty21]

Hey! Finally joined the other chairians out there, i need some other peoples input..
I was diagnosed and had decompression surgery for chiari malformation and syringomyelia on 21st september 2009 when I was 16. I'm now 18 and at my last check up a year ago there was still a syrinx left in my spine. For about 5 months have been experiencing some infuriating things... For starter i've been excessively sweating, and it's disgusting. However it is only really one side of my body. My thyroid etc have all been checked and are fine. On top of this I can't maintain a stable temperature. I'm either literally freezing and shaking or boiling and striping my clothes off. This is honestly driving me mad and I would really like to know if anyone else out there has experienced similar things?
Thanks so much,
Lex.

[carty21]

That's something i've been considering but the toilet paper wouldn't stay dry very long haha... what have the drs said to you about your sweating? do they think it's from chiari?

[Tharris85]

I am so glad I seem this. I also have Chiari, decompression surgery on 5/31/2012, and I also had and still have excessive sweating in my right armpit. It does not matter if I'm cold, hot, outside in the snow, it is constantly sweating. They can not figure it out. It drives me crazy and its gotten to the point where I keep toilet paper under there.

[selmaS]

  Hi and welcome back to the Chiari forum.

Can u refresh my memory as to what all is going on other then this pain u have?Such as have u had surgery, been dx'd with ne related conditions?

Sounds like u may have a syrinx....it is a possibility....have they checked u?

[tattooer601]

As I type this I am cold from the elbows down,from my elbows down.
   Ya know a ladies shoulder poncho with a hood?
If so....I feel like I'm wearing one made of FIRE!
Hurts so badly...
Bless all you guys.....

[LisaRiu]

Hi there,
I have CM & syrinx and also have trouble with my temperature control. Whenever I have had surgery I am always freezing cold and have caused some concern with the nurses when I failed to reach the 'normal' temperature following surgery and am shivering & trembling in the bed. I remember (in a groggy haze) following one surgery when this happened and my husband said, don't worry, she's always freezing. My temp rarely gets to 'normal' even if I have a fever. It does go the other way too and I will be red hot when everyone is cold and putting jumpers on. As for the sweating....I did post a question about this a while back because I just felt disgusting all the time. It does seem to be a problem for us chiarians. I hope you get some answers soon.

[selmaS]

  I am sorry u r no further in getting answers, but glad the syrinx has ceased to grow...and I would imagine ur Drs will continue to watch it.

Have u asked for ne other Chiari Drs to review ur case?

And have u looked into related conditions for how u feel....ie- EDS, tethered cord, etc....

[carty21]

Hey, took this long to get no answers. Had an MRI and although it's decreased the pressure around my brain, it didn't decrease the size of my syrinx but has 'seized its growth', it goes down to T9 still.
I've also noticed that a large portion of the right side of my body (where i sweat) is almost completely numb. The docs aren't concerned and are just putting it down to my syrinx.
I'm also getting ridiculous pain throughout my right hip and right side of my back....
...does this sound familiar to anyone else? i'm starting to think i'm a complete lost medical case....

[selmaS]

  Hi thanks for the update !! Are these chiari drs?

I do not have a syrinx, but those that do have reported temp issues like u mentioned.

SO if u still have a syrinx that could cause it. If u still had a syrinx a yr ago, when did they plan the next MRI to monitor it?

It could be the syrinx, a bulging disk, or a related issue, but with out a MRI how can they know for sure?

[carty21]

Just a update.. neurosurgeons are convinced that chiari isn't responsible for this and as a result had an appointment with a neurologist. They are also stumped and have requested an MRI scan of my brain and full spine. I also found out that at my last scan a year ago the remaining syrinx was at C3. Another thing I have noticed is that my hands go different temperatures occasionally.. quite drastically as well, one can be freezing and the other rather warm.
Does anyone have any advice or can relate to what i'm experiencing?
Thanks :)

[carty21]

A letter is on the way to my surgeon detailing my symptoms to see if I need to get more scans.. wish me luck! thanks for your help everyone :)

[Rylanesmom]

I was always freezing preop and I too am often on fire now... I never broke a sweat before and do now as well

[selmaS]

  Well it could be chiari as it can be one sided....I had many issues all on my left so it is not surprising u r having issues on one side....

Chiari affects all of the nerves in the control center, by control center I am referring to the brain stem and it controls temp, breathing, our heart, everything.....

Some of us do have herniations that r larger and impinge one side as a result...we r asymetrical  by nature and having symptoms like that again does not surprise me.,

[carty21]

Something that I forgot to mention.. the sweating is unilateral, well much more prevalent on my right side. Does this give you any more ideas as to what the issue could be?

[selmaS]

  No, these other issues r not seen via a MRI, u need a Dr that knows how to look during a physical exam for EDS, and POTS as u would have issues with ur BP and heart rate....positional changes cause issues like dizziness and HA's....pooling of blood in the l extremities....

TC is sometimes seen on MRI...but, there r additional tests as well as symptoms that will also indicate TC....

[carty21]

Thanks guys.
Are those types of things usually diagnosed by MRI scans? My GP is ringing my surgeon to try and find out if this could be a result of chiari. Which part of the spine would a syrinx affect my temperature control?
Does it ever stabilise, like could this be a phase?

[selmaS]

  Related conditions u may want to rule out- POTS which is an autonomic dysfunction...Ehlers-Danlos Syndrome, tethered cord, sleep apnea, intercranial hypertension, bulging disks,......

Also ask about those thyroid tests to see if they looked at the free T3 and free T4 and TPO antibodies as well as TSH.....

[Sexybare]

Ask your dr about autonomic dysfunction. Also i believe our bodies are put thru alot and its all haywire. I can be sweating but yet have the goosebumps all at the same time. Its crazy. It can be 90 outside and i can be cold lol.

[irislita]

I have that too...i am not sweating,but either i am cold or hot when people are usally cold.its crazy.it is stronger post op for me too

[carty21]

Oh and also I have no recollection about the patch question....

[carty21]

Heya, can't remember specifically, my last check up is a bit hazy now.

I had full bloods checking my thyroid and thats all my dr told me, on top of blood sugar levels etc etc.

What are other related conditions? I just got diagnosed with those two after the MRI. From memory my syrinx was in my cervical. There may have been in my thoracic as well.

It may be handy to mention that over the year in between my check ups, the latest one had shown an increase in my syrinx, regardless of surgery. It was only slight though.

[selmaS]

  Hi and welcome to the Chiari forum.

I have to start by asking u questions, u said u still have a syrinx, may I ask where it is?...is it in ur cervical, thoracic or lumbar spine?

Was ur PFD done with a lamenectomy and duraplasty? if with a duraplasty what type of patch?

Were u tested for other related conditions...beside syringomyelia?

U said u had ur thyroid tested, do u know if they did the test for an auto immune thyroid issue testing more then just the TSH?

  The temp issue can be from ur syrinx depending on where it is located....or it could be ur thyroid, ....or tethered cord.....