link between chiari and thyroid

[laubru010]

Is there a link between thyroid issues and chiari malformation?  My 12 yr old had surgery for chiari because it had caused a cyst up and down her spine which caused a great deal of scoliosis.  She had this surgery several years ago and the spine has straightened up a lot.  She still has about a 10 or 11 degree curve.  Now she is getting checked out for mild enlargement of the thyroid gland.  Beginning stages and I just wondered if anyone knows if these are possibly linked?

[selmaS]

  Hi and  welcome  to the Chiari   forum.

  I  am  curious, was your son tested for  a related condition Ehlers-Danlos? The reason  I   ask....many  with  Chiari do have  it  and it  can  cause  malabsorption...vitamins  and minerals,....and  anemia can  result...for a growing  Child I  would suspect  would  affect  growth....do have  this  condition  ruled out  and check  Vit B12,D, magnesium  and   potassium   levels..

[Skippylyds]

Hi. Any one had experience of slow teenage growth related to chiari. My son had decompression surgery three years ago and is growing extremely slowly , no improvement in growth rate since surgery  I am grateful for any info as I need info to relay to paediatrician
Lydia

[selmaS]

Well I have not had the FNA so I can not say....the ultra sound is no problem.....

I did  a poll in this forum to see how many with chiari had a thyroid issue and it was not surprising that most all did...there r a few that didn't but the majority did.

As for test info those on the Thyroid forum will be better suited to answer those questions.

Please keep me posted on what u find out : )
"selma"

[laubru010]

Are the tests very uncomfortable?  She hates needles.  After her chiari surgery and some things that docs and nurses (and mommy) promising wouldn't hurt and then it ended up hurting a lot...she has had a few out of the ordinary incidences w/simple procedures...she is scared.  
Laura
P.S.  I will check out the thyroid forum, too.  So far, the docs all act like I am crazy for even wondering if there could be a connection between thyroid and chiari???

[selmaS]

Thanks Ray !!!

U r welcome Laura. I am on the same meds as ur DD.....mine were just recently upped to 25 from 12.5 as a result from my labs which I must get every 6 months.....and I get regular ultra sounds for the nodules . Mine r too small for the FNA = Fine Needle Aspiration same as biopsy....I know what u mean it is stressful every time I go , I wonder if they grew.....will I need the FNA?

The thyroid forum here on MedHelp has helped me understand most of this, u may want to pop over to get some info.....

Do keep me posted on her progress!

"selma"

[rod44]

Hi Laura NL = Neurologist NS = Neurosurgeon


Ray

[laubru010]

If you hadn't told me...I wouldn't know any of this.  What is an NL though?  I can tell my primary is very, very caring woman yet and she asked the people at Cinti Children's Hospital if there could be a link w/her thyroid and chiari and they said "absolutely no".  

She has a small goiter on one side and a cluster of ?? on the other side of her thyroid.  Because she is so very fatigued, the primary put her on 25mcg of Levoythyroxine last night and thankfully....she lovingly insisted that my daughter sleep as much as she can.  So, for the first time in her life, she went to sleep by 8:30pm.  She really fights sleep and always has had trouble going to sleep.  We use melatonin occasionally.  

The primary said that in February when we can finally get into the endo @ Children's, they will want to biopsy her or do a radioactive test of those clusters to ensure they aren't cancerous.  She tried to get us in sooner, but they felt it unnecessary.  You can imagine how distressing that was.

Selma, you are a Godsend and I thank you for any guidance you are able to give.  I'll keep pressing on to find out what is really best for my sweetie.

Thanks so much, Laura

[skeetelmore65]

I forgot to say that my lymph nodes seem to stay swelled too. I had one underneath my right arm not to long ago and it seems to be fine now, but Now having trouble with my Mammogram. They say I need to come in to have two things done further after inconclusive on last one. I will get there with The Lord and yousss guyss...Love and prayers....

           SO MAY TEARS BEING SHED ALL OVER THE WORLD
           SO MUCH PAIN THAT WE HAVE TO ENDURE
           EVEN THOUGH WE FEEL SO SAD, SO LOW AND SO BLUE
           THANK GOD...GOD, THERE'S YOU

           YOU MAKE EVERYTHING RIGHT AGAIN
           YOU TURN THE DARKNESS INTO LIGHT...AGAIN
           YOU TAKE OUR PAIN AND THE TEARS THAT WE EXPERIENCE THROUGH
           THE YEARS AND YOU GIVE US HOPE
           FOR WITHOUT IT...WE HAVE NOTHING
          THANK GOD....GOD, THERE'S YOU

           IF ONLY WE BELIEVE AND HAVE FAITH
           WE WILL BE PAIN FREE SOMEDAY
           ALL WE HAVE TO DO IS KEEP ARE EYES ON YOU
           THANK GOD...GOD, THERE'S YOU

[skeetelmore65]

Hey Selma, I wrote you a message back and thanks so much for all the advice. I finally feel like I am getting somewhere. I failed to tell you that I think I have a fever with whatever is happening to me. I keep the AC going and my family are cold. It was 45 last night and I had to stay in a room with the door closed and the AC going. I do drink a lot of coffee and don't think that is what is doing it...do you? Really, that is all that i drink. I do mix it with decaf for the night and in the day drink full strength. I LOVE my COFFEE. I have just got completely away from cokes or my Mountain Dew in which I thought was impossible. It is strange. I don't want anything else. I feel like I have some sort of steam that is coming out of my body and I am even on Antibiotics...again. This time it is Cephalexin 500mg. and have taken 3 different rounds of Levaquin,one was 500mg and the other was 750mg. I seem to have even taken a Zpak. I can't seem to get whatever is infecting me to go away. They have even given me cough syrup,Dy-G Liq.Cypress(2x) and one for Ed-A-Hist DM. I am so worried that I have some kind of infection down deep inside because where my surgery site is there is these like holes that fill with a pus..I guess, but if I push just a little a hard white thing comes out. Pleas tell me that isn't gross. I just want to know what the **** is going on with me and the docs that I have been seeing is just getting the picture that I am scared to death. Forgive me LORD...I am just so stressed and ready to get somewhere....What should I do?
I left you a message that explains @ the 6.5 mm of tonsillar tissue extends into the canal for the Chiari Malformation that wasn't even told to me that I had to run across it on my own for disability court. I am just so appalled that I have lost faith in the medical profession to even help me anymore. I don't know where to go. I am glad you did list the blood work that needs to be done and I will get right on it, but I think I am going to a new doctor...oh how I hate that. This town is a one gas pump place and you have to travel to get anything good...I guess.
Hey you take care of yourself and thanks so much for the info. I am going to call right now and get test setup for bloodwork cause I do think I have something going on with my thyroid....Underneath my neck I have this swollen third chin(as my mom calls it). I just want to know what it is that I have so I can move on...Thank you so much SELMA....you are a life saver....GOD BLESS YOU..You are an ANGEL on Earth,...Karen

[selmaS]

Well an ENDO can only really help dx things like her thyroid problem....ask the dr if they know a good NL  in ur area that is familiar with chiari.Once u have a NL u will have someone to rule other conditons out and look for chairi related conditions like tethered cord, syrinx, and Ehlers-Danlos, pusedotumor cerebri.....

Do u know is her hypo condition an autoimmune one?.....does she have nodules on her thyroid?.....is she on meds?

Try to relax.....u r doing great!
"selma"

[laubru010]

Remember me?  about my 12 year old daughter, Shekinah...Just found out she has hypothyroidism, but we don't know anything else.  Scheduling to see an endocrynologist, but I wish I knew of someone that knew a lot about chiari near us.  I think I'm getting myself confused on all of this.  Where to begin?

[selmaS]

U r welcome..I got the info from the thyroid forum here on MedHelp....very helpful people over there : )

Some r very able to help decipher the lab reports too.

[laubru010]

OMG I never would've known to ask about those tests.  Thanks so much!  I'll keep you posted.

[selmaS]

The fatigue can be explained with the chairi dx as well. And I am sure if she is at that age puberty could be playing a role as well.

I am not sure what Labs were run for ur DD, but to see it different labs must be done.Typical labs will come back as"normal"...so do ask the dr about FreeT3 and FreeT4 , TSH and TPO antibodies.

U r welcome and do keep us posted on the results : )

"selma"

[laubru010]

I just got the call about my daughter's mild enlargement of thyroid gland and they want to look at an area in the right lobe of the thyroid further.  She had two weeks of fatigue and muscle weakness (w/no fever), so the doctor took a blood test.  After that blood test, she had an ultrasound of her thyroid taken.  She feels much better now and apparently had a virus prior...but does tend to poop out quickly/avoid much physical activity and has trouble falling asleep most nights (always has).  Her weight is normal, but she does seem to be awfully tired lately.  I attributed it to puberty.  Anyway, thanks for the tip re: the type of lab work.
Laura

[selmaS]

Hi and welcome to the Chiari forum.

Those of us with chiari and related conditions are prone to autoimmune disorders.Hashimoto's thyroiditis is one such condition we can have in addition to chiari...RA....Ehlers-Danlos...and many others.
Are u referring to syringomyelia? when u say cyst?

With Hashimoto's u would develop nodules on the thyroid.And u do have to make sure the lab work is for an autoimmune thyroid condition instead of a normal thyroid workup.

"selma"