chiari specialist

[cfinniss]

Does anyone know of a Chiari Specialist in North Carolina specifically near Rally or Chappel Hill area?  My neice may have Chiari and she lives in that area and I am looking for a specialist for her.  Please let me know of the closest Chiari Specialist in her area.  Thank you
cfinniss

[selmaS]

  Hi and welcome to the Chiari forum.

How wonderful u r to advocate for ur niece.....we do have a list of chiari Drs...the list was compiled by the members here once they were satisfied with the Dr they add the name....it is not a referral..as we do not refer Drs...only help u get a start on ur own research to find the Dr that is right for u, or in ur case ur niece.

It is hard, bcuz personalities play a role too, the Dr I liked , u may not, and u must feel comfortable with the Dr as well as his abilities.

  http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

  Please keep us posted on her progress : )
And if u have other questions we r here.....

     "selma"

[pamk5]

Dr Rosner is in Hendersonville but he doesnt do surgery on anyone under 18!  He is amazing!

[Mannas]

I know it is a bit of a drive for you but Dr. Fuchs at Duke is a Pediatric Neurosurgeon and I have heard and read good things about him.  I am currently seeing Dr. Bagley at Duke.  He is one of the Adult Neurosurgeons and and so far is wonderful.  I am setting my surgery date with him very soon.

[junglemom]

Did you find a specialist in NC.  I am looking for one in or near Charlotte for a 14 year old with CM.

[selmaS]

Oh my...Cathy we sound so much alike...I was also told I had lups...fibro...the same stuff.

No, I have not read nething that explains the connection...but there are far too many of us out there that we have the same story.

It is thru research that they may find these answers and we need awareness to get the funds so they can do the research......chiari is not well known, but with this coming second chiari walk hopefully it will get more attention.

"selma"

[cfinniss]

I know I keep asking my docs, opthomologist, endo, etc if my eye problems and thyroid problems, auto immune problems are related with the chiari but none of them seem to feel they go hand in hand.  My opthomologist feels my eye problem is thyroid eye disease and my endo does not seem to have a clue about any of it being related.  I was in hyperthyroidism for a year and had to take two beta blockers a day because my resting heart rate was going up to 120 beats a minute and my labs showed a big thyroid imbalance.  So that is why they said they had to do the RAI to kill part of my thyroid to get it to stop over producing thyroid hormone and that is why I now am hypothyroid and have to take synthetic thyroid replacement.  I still feel it is all auto immune because I have had auto immune problems since I was in my early 30's and they kept testing me for lupus, ms, chronic fatigue syndrome etc.  And when they could not get positive testing results for these things they just labeled me with fibromyalgia and said I have auto immune problems and that ended it until things started getting bad for me recently and they found the chiari.    I also have osteo arthritis and degenerative disc disease and these are also connected with auto immune disorders.  They just never could find out why I was having auto immune problems.
The more I read it seems many chiari patients have auto immune problems as well.  i wonder if the chiari centers have come up with anything on this matter of auto immune disorders and chiari?  Do you know?

[selmaS]

Well from what I am told nodules are an indicator of an auto-immune condition called Hashimoto's thyroiditis...I have it as well.

My Endo would not put me on meds bcuz my so called labs were normal, in the meantime my nodules were getting bigger.

I went to my PCP after talking to some well informed members on the thyroid forum herer on MH and I was able to get the right testing that showed I indeed needed thyroid meds.

I wonder what or how this connection occurs with chiarians and auto immune issues.

And I do believe I must have had this for a long time and the drs did not catch it- I went into Early Menopause also as a result when I was still in my 30's...almost 40's but still !!

I asked is there nething that could have caused this to happen and I was told just accept it.......grrrrrrrrr

[cfinniss]

They found two nodules in my thyroid one cold and one hot that they said was causing my problems and that is why they did the RAI treatment on me to kill part of my thyroid because the nodules were causing it to produce too much thyroid hormone.  So that sent me into hypothyroidism.  My endo kept saying that I did not have hashimato's although at first she thought I did have it.  Now I wonder?  But either way they forced me into hypothyroidism and I now have to be on synthetic thyroid meds the rest of my life.
I was having a lot of auto immune problems long before the thyroid problems began.  The docs have been telling me for years that I had auto immune problems.

cathy

[selmaS]

Cathy,
Oh , u may have mentioned that already, sorry...do u know if it is an auto-immune thyroid issue?

I have Hashimoto's thyroiditis which is auto-immune.The rining in the ears can also be chalked up to the thyroid...so I was wondering about that.

"selma"

[cfinniss]

I have thyroid disease, I was hyperthyroid and they did an Radio Active Iodine on me and that pushed me into hypothyriodism and I am on thyroid meds for that.  My levels are within the range they should be now.  I do also have thyroid eye disease.  

cathy

[selmaS]

Hi Cathy,

U r welcome....I was wondering...have u had ur thyroid tested? I was having the issues with my jaw as well, and since starting thyroid meds it is not as intense as it was.


"selma"

[cfinniss]

Thank you so much Selma for all your help.  I am pretty discouraged right now  as I was just starting to feel better following the surgery.  My stiffness in my jaw and throat area is coming back also and a little swelling in that area too, not as bad as before the surgery but it had gone away for weeks after the surgery and now it is coming back along with the new symptoms (lower back buttocks and legs and feet)

The ringing in my right ear is better than it was before surgery but when I do certain things it comes back but not as loud and often as before.  The tingling in my hands is a little better and I am not dropping things as often as I was before the surgery.  

I want to try to go back to work soon but the doc wants me to wait till I am done with PT.  That is in 3 weeks.  I am nervous though about it as I sit at a computer all day long and answer phones a lot of sitting in one position and I know I will stiffen up.
I will start out slow though, part time to see how I do.  Then take it from there.

I appreciate you communicating with me and taking your time for me.

Cathy

[selmaS]

Wow- 4 children....I wanted several, but was only blessed with one.Y es u should have ur bladder checked again...I have heard it can prolaspe again after the surgery is done.

Do u do the keigel exercises?.....It may help some....

I would deff ask for MRI's to check the entire spine....bcuz of the possibility of a syrinx or tethered cord and that these can cause some of the pain and symptoms most drs do not recognize as chiari.

U r welcome and I pray u find an answer to ur issues.
Keep us posted
"selma"

[cfinniss]

I have 4 children of my own.  I have had surgery for a prolapsed bladder, however, maybe it is prolapsed again?  I will keep trying the PT for a few weeks and if it does not get better I am going to see my neuro surgeon to see if he will send me for a Lumber MRI.  I have never had one.  The only MRI my surgeon did was brain and c-spine.  I was a little disturbed that he did not do a full spine to check for a srynx.

Thanks for all your help.
cfinniss (cathy)

[selmaS]

Hi Cathy,

It sounds like u could have TC- I would ask for a urodynamics test- it is not fun...but it will determine it for sure.

Have u had MRI's of the lumbar spine?

The other thing they did ask was how many children u gave birth to....to see if u might have a prolapsed bladder from child birth.---I only had one, so it wasn't that!!

Ask for the tests
"selma"

[cfinniss]

PS - I do also have a little bladder problem but that also could be normal for my aga.

[cfinniss]

I have two dimples my lower back where the pain seems to generate from one on each side of the spine.  The pain & pressure starts in that region and my whole buttocks is very sore like I have done a huge work out in those muscles, but have not, and pain down the back of my legs and muscles in upper legs are weak walking up stairs and my feet have been really burning and sometimes in the night they go from burning to feeling like they are ice.  mostly burning though.  I have begun PT for this problem this past week to see if it helps if it does not I will bring it up to my neurosurgeon who did my chiari surgery when I see him on May 12th.  He also determines May 12th if I can try to go back to work.

I do not know if the very obvious dimples in my lower back one on each side of the spine where my pain and pressure generates from is normal or not.

Let me know what you think.
Thanks Selma
cfinniss (cathy)

[cfinniss]

Thank you!  I appreciate your help.  My niece as it ends up does not have chiari after all thank God!  I pray they can find out what is wrong and that it will not be major.

[rogi315]

dr michael roszner, hendersonville nc

[selmaS]

U r welcome.

Yes it is possible, but if u have other issues below the belt such as bowel and bladder issues then I would say deff.

Also, check to see if u have a dimple where ur buttocks pain eminates from...if so there would be no doubt.

Let me know
"selma"

[cfinniss]

Thank you so much for your help Selma!  I appreciate it very much.

Wanted to ask you another question.  I have been having lower back and hip pain as well as stiffness and pain in buttocks and down back of legs and burning feet.  
Can that be signs of tethered cord?

[selmaS]

Dr. Michael J. Rosner Fletcher, North Carolina


This was on our list...in the specialist thread. I do not know nething about him, so please check him out.

"selma"

[selmaS]

Hi...I am not sure about NC, but do check the chiari specialist thread we have here...and as always research the drs...this list is comprised of drs that our members have used and liked.U should always check into the dr and see if he/she is right for u.

Sorry to hear about ur niece.

"selma"