Chiari expert Nashville TN help

Question

I have chiari malformation 1 with 1cm herniation and saw one neurosurgeon. I'm just having a lot of second thoughts about decompression surgery. Has anyone had surgery in middle TN? Who's the best? Besides headaches, ears ringing, tripping a lot, trouble with swallowing, and insomnia, I have extreme hypoglycemia. Does anyone else?

selmaS · Answer

Hi and welcome to the Chiari forum.

 We do have a list of Chiari drs by members that have been to the Dr and liked them...the list is not a referral nor an endorsement....http://www.medhelp.org/health_pages/list?cid=186

I know there is a Dr in the Nashville area as several members were treated by the same Dr.

 It is best to see a few Drs and have more testing as it is not just the length that is important but if u have a CSF obsruction....over crowding and ne other related condition like syringomyelia, tethered cord, ICP, POTS, sleep apnea and ehlers -danlos.

 Have  u researched ur family history for the hypoglycemia?

frankie_rush · Answer

I had all the same systems you have except the HYPO.  I live in Knoxville.  I went to UT to the diagnose of it all.  I went to IU to have the surgery only cause he reconmedation from the doc, cause he did his residence there.  I had alot more wrong from herinated disc to tethered cord.  But if they are recommending surgery you have got  some obstructed or crowding some where.  I would talk with the doctor and make sure you feel comfortable.

velvettn · Answer

I too live in Knoxville and just got diagnosed with CM1.  I saw a neurologist who is treating me for migraines and made that diagnoses based on the MRI.  He did not order any more tests...when I left I felt chastised and confused.  I am waiting for the neurosurgeon to call, but if surgery is recommended, I am going to Nashville to see Dr. Cheng at Vanderbilt.  I have seen a few recommendations on here for him.  Also, MUSC in Charleston, SC has a couple Chiari neurosurgeons.  There is a Chiari clinic in Kentucky as well, and Cincinatti has a clinic.  It just depends on where you are located.  To raise money, do a google search for "crowd funding."  You can start your own campaign and maybe raise some funds so you can get treated with less monetary stress.

velvettn · Answer

P.S.  I contacted the specialists that I am interested in interviewing and got my GP to give me a referral.  They will often look at your records and give you an idea whether they want to see you or not.  Remember that most specialists won't say they want to do surgery if it is not necessary, they have enough surgeries to do and are often overbooked.  So, with that being said, if you like the Dr and have faith in their abilities, then you may want to heed their advice.  If left on it;s own, it can cause permanent brain, nerve and spinal damage, as well as a myriad of other serious complications.  The prospect of someone cutting my head open is a scary and big decision, but the effects of taking no action are potentially worse.  Amazon has a few chiari books and if you visit your local library or used bookstore, pick up a couple anatomy books so you can familiarize yourself with the terminology that your Dr is using.  If you arm yourself with knowledge, it is no so scary.  Knowledge is power.  Also, you will know what questions to ask, be able to understand the answers, and make an informed decision.  Make sure that you like your doctor, this is imperative.  They're going to be cutting your head open, you MUST trust your surgeon otherwise you will have a negative attitude going under and that is not good.  If you don't have faith that your doc will do his 110% best and has your best interest at heart, then find a different doc.  I hope this helps!!

desertstorm2009 · Answer

WELL SAID! I agree 100%

Shane99 · Answer

I had decompression surgery at Baptist Hospital 6 years ago. Dr Gary Strickland is my neurologists and Dr Carl Hampf is my neurosurgeon. I recommend them highly and without any reservations! 

I understand that the idea behind having your brain operated on seems like of the worst possible scenerios ever, but don't let fear keep you from getting the help you need. I don't regret my decisions. Its been a hard few years, but I most likely would either be dead or paralyzed from the neck down had I not proceeded.

Rachybaby79 · Answer

Hi I'm Rachael I'm 34 and have been suffering with headaches for 10 yrs. Iv been treated for migraine tension headaches where I had acupuncture  in the end I gave up and tried to cope. But 2 years ago I was so miserable I couldn't laugh, sneeze, cough or even go to the loo without being in agony. 
So I went back and saw one of the new doctors at my surgery, she listened to my symptoms and said she said what she thought it was and was referring me for an MRI scan. I went and the results were I had cm1.. I'd never heard of it. They said they would refer me to a neuro surgeon. 
While waiting for the appointment I was in a+e twice with the pain of the headaches. I got my appointment through and we discussed the symptoms and he said he wanted to operate. Said he will do the decompression then scan me to see if that restores the flo, if not he will do the other part.. ( can't remember dr the name ) Iv got my date and I go in on the 10th march 14. I'm scared to death but I can't cope with the pAin anymore. I have headaches all day everyday. I have swallowing problems sleeping problems balance problems memory and concentration problems.. While I know it's not a magic wand I do hope surgery helps with all the problems

selmaS · Answer

Hi and welcome to the Chiari forum.

 Goodness, u may  need to go back?.....could he have said he would do a bony decompression and if that did not restore flow to go back and open the dura?

 Have u had ALL related and non related conditions ruled out? It is very important as surgery is only a means to restore CSF flow, it may not help all ur symptoms as they can be from other issues.

 Some of these other conditions can have an effect on how u heal and feel post op so it is best to know b4 surgery.

 We do have a thread for those that would want a prayer thread, post ur surgery date in that thread so we know u will want one.

  Know u r not alone <3

Rachybaby79 · Answer

Hi, I'm sorry I have not replied. I had my surgery on the 10th of march so I'm 2 weeks post op, and to date I'm still not seeing any benefit.. If anything it's more painful when laughing coughing and straining... I also had blurred vision when turning my eyes sideways. 
The past few days I had noticed a lump at the top of my incision site, today I can feel 3 lumps other 2 smaller than the 1st but it's a little worrying.. Is this normal do you know? X

selmaS · Answer

Hi...sorry we didn't know about ur surgery...we do post prayer threads for members when they have surgery....

 What pain meds are u on ?

 U need to keep on a schedule and not wait until u have pain other wise the meds do not help.

 How large a lump are they?

 Sometimes u  can have an ingrown hair....

But do let ur Dr know if the lump is painful or oozes.

Rachybaby79 · Answer

Hi I'm sorry iv not been on in a while. My scar has healed really well, my hair is growing and the headaches had eased.. Until today, iv had pain all over the top of my head and behind my left eye, and inside I feel like I'm on fire.. But I have no temperature. I was seen last week by another neuro  surgeon ( I went on the wrong date ) and has my head pain had eased I was discharged!! Was a little concerned has it wasn't the man who operated but was happy things were finally looking up.
I still had the pain when laughing and any thing else that caused blood to rush to my head but he said the operation wouldn't change that, but was just to take the edge off.?? I went thro all that just to take the edge off and now this today..!! I'm 10 weeks post op now, is it normal? Will I now continue to have headaches again?

selmaS · Answer

Hi Sweetie....I am so sorry....and confused, u were discharged as a patient?...and u r only 10 weeks post op?...I was a patient until one yr post op and had a MRI at that point to make sure all was ok...since u are having symptoms u may want to talk with ur original NS.

 Keep in mind, it is normal to have some symptoms return as u heal...they should not last as long, or feel worse then prior to surgery.....

 If it is new, u need to let ur NS know.

  Surgery is not a cure and may not relieve all of ur symptoms...and with some it may take time until u see the benefits....I am now 5 yrs post op and have experienced new benefits with each yr that passed.

 May I ask, did u have a dura patch placed and if so what type...and was EDS ruled out?