Chiari Doctor in Omaha

[trdofpn]

Does anyone have any experience with or know anything about Dr. Mark Puccioni in Omaha, NE?  I have been diagnosed with a mild Chiari Malformation after  a whiplash injury.  I have been to so many physicians, neuro doctors, ortho doctors, pain doctors - you name it and I have probably been to see them.  I was told that because the Chiari is mild it is not causing any of the symptoms I have and that I need to just live with my symptoms.  I have no quality of life!  I finally found a Dr. who says he is confident that the Chiari is causing my symptoms and he can do surgery to fix it.  I just want to know that he has a good track record like Dr. Oro in Denver!

[selmaS]

Hi and welcome to the Chiari forum.
  
The fact u get temp relief when the chiro pulls on ur head shows u may have an issue with cranial instability....but it is not something u want him/her doing if they r not familiar with chiari.....as they may cause u more issues.

It seems many of us have gone the same route u have...many drs  and many meds and no answers....but one common factor...chiari.

A true chiari specialist is who u need next....did u have a CINE MRI done?...rule out issues like a syrinx, tethered cord, ehlers-danlos, sleep apnea, bulging disks.....?


We r happy to have u join us, but not happy with the reasons that bring u.

  "selma"

[SAM35211]

I have a mild Chiari 1, 5mm. I went in a year ago for bad headaches I had been having. I've always had headaches, they just got really bad. I've been to a few primary doctors, a consult with a neurosurgeon, someone else had mentioned Thorell at UNMC, a headache specialist, a chiropractor, massage therapy, and even acupuncture. I've been on prescription anti-inflammatories, anti-seizures, anti-depressants, blood pressure meds, anti-biotics, about anything that can be prescribed for headaches. Nothing has worked. My symptoms sound exactly like other posts - pressure, dull pain at the base of the head and neck, some between the shoulder blades, sharp pain on the sides. Problems with balance, speech, ringing in the ears, visual disturbances, dizziness, nausea, pain from sneezing, can't exercise, light-headed when I stand up, scalp is super sensitive - I've cut my hair really short hoping it would help - and my head pound when I bend over. I've lost weight, lost quality of life, and had to withdraw and take incompletes in school. I called my primary care doctor this morning and said I wanted to be referred to a Chiari specialist, wanted my MRIs to be looked at again, and wanted them to take more if they needed (though I can't really afford it). How long of a wait will it be to see a specialist? If I have to have the surgery what can I expect for recovery time, I know its different with insurances, but how much does it cost flat out? I'm looking for a specialist in Omaha, but I'm from CO, so I may try to see Dr. John Oro.

The one thing that has given me ANY relief from pain was my chiropractor - I don't get spinal adjustments from him. I will lay flat and he will hold my head up and out, away from spine and neck. My boyfriend has been reading about Chiari since my diagnosis, and when he saw the chiropractor do that he pushed me to get second opinions. He had read holding the head up a certain way can give temporary relief for Chiari. The Chiropractor also does some soft tissue work (called Graston Technique) which helps loosen up muscles, and is relaxing but doesn't help with pain.

[selmaS]

  If the MRI was just of ur Brain then they can not rule out a syrinx had formed or if u have tethered cord...u need a MRI of the cervical spine as well as the thoracic and lumbar spine...to be sure that u do not have  one of these related conditions adding to ur symptoms.

  "selma"

[manders148]

my brain

[selmaS]

  
   What area was the MRI of...ur brain, ur cervical spine, ??? thoracic and or lumbar spine?

[manders148]

i got the results back from my MRI they said things havent changed since my last one then what do i do about all of the symptoms im having?

[selmaS]

Well not that u want a shunt and many times with age and meds this can correct on it's own., and many times not...I am sure they did what they felt was best given the info they were given by the drs....

Shunts r not a definite fix either...they malfunction ...clog ...and just plain stop working so many times u have multiple surgeries to adjust the flow....

I am sure since u were still growing it was considered to be best to wait and see......and if u had more severe symptoms they would have had to resort to the shunt sooner.

Wondering if ur low lying tonsils r the result of the IH or if the IH is a result of the low lying tonsils.....

"selma"

[manders148]

i am on diamox for the ptc and no they never offered the shunt alls i ever had done was the spinal taps that is why im upset i am just now finding out i have all this and they ( my foster parent)  new the hole time i was a ward of the state from when i was 13-18 so they made my decisions till i was 18

[selmaS]

And what meds r u on  for the PTC...and did they ever offer to shunt u?.....I am confused as to how or what treatment u were offered if they knew u had all this for sooooo long????

"selma"

[manders148]

yes i have chiari also

[selmaS]

Well I know there are meds to help with the CSF production and pressure....I do not have PTC so I am not up on all the meds, if ur interested I can get u in touch with others that do have this condition.

Some of our members here like Molly have it as a result of her PFD surgery....and some have it with no known cause...it is then idiopathic...

DO u know do u also have chiari...or low lying tonsils???

"selma"

[manders148]

i haven't had one recently but i have had 3 in the past and am looking at getting another one done if things don't get better and i do have PTC I've had it since i was 10 i was just never told what it was until now cause they thought i was to young to know but I'm a little irritated now cause i could've been getting the treatment that i need

[selmaS]

HI, most meds will not help the HA's u get from chiari or pseudotumor cerebri....take the meds, and if u r comfortable with this dr...continue to see him...otherwise, get another opinion.

May I ask did they do a LP on u?....or do they just think u have PTC?

"selma"

[manders148]

OK so yesterday i went and saw a neurologist his name was dr. habib from Carroll Iowa he don't seem like he knows much about chiari also found out i also have psuedotumor cerebri but anyways they are setting up an mri and we will go from there he said he put me an amatriptaline to help what do i do now

[manders148]

ok what do you take for these migraines i have been taking execdrine migraine medicine and they just wont go away

[manders148]

thank you for your advice i appreciate it very much i see a neurologist on Monday to see if things are progressing I'm very nervous i will update everyone once i find out how everything is going to turn out once again thank you...

[selmaS]

Hi ...it is possible that the childbirth has triggered some of ur symptoms...I would deff talk to a chiari dr to get more info and testing to see what options u have at this time.

U do need to pace urself,....avoid lifting.,..especially ur little one from the ground...that is too much straining for u especially if u r having that many symptoms and issues....call ur dr and get in to see him .

Rest as much as u can, I know with the Holidays and a little one that is easier said than done.,,..sleep disturbances r typical for chiarians and u should rule out sleep apnea.

"selma"

[manders148]

lately i have been in so much pain i don't get enough sleep so I'm really exhausted i have a 7 month old and he just want to play and play and play i feel bad because i just don't feel good at all i just want to go to sleep my head is pounding my eye hurt and feel like there about to explode i feel like I'm in a cloud i feel like i am sick to my stomach i just want all of this to go away so i can be myself again please anyone have any advice....

[Roy902]

There are several doctors at the Neb. Med. Center at the North tower 6th floor that work with Chiari Patients.  The neurologists are very knowledgeable with this condition.  

They do Chiari surgery's their are 2 other surgeons that I know of that do these one of them is Dr. Follette and the other is Dr. Surdell.  I have talked to both Dr's before and Dr. Surdell told me last spring that the risks just do not warrant doing my surgery at that time.  He told me that they do more Chiari surgery's than one realizes there, but they ( the hospital )   is not really know for Being Specalists in Chiari.  

[selmaS]

Hi and welcome to the Chiari forum.

No u r not wrong to feel like that, but unfortunately this happens bcuz most drs feel chiari is an incidental finding...meaning that u had it since birth it wil not cause u ne issues....

Well we all know that not to be true...many will also say chiari is a rare condition...the only rare is well informed Drs....there r way too many of us for this to be rare.

U need to go to a true chiari specialist to see how this is affecting u....and if u r a candidate for surgery at this time...surgery is the only treatment for chiari...and it is not a cure or a fix, just a means to slow progression and restore CSF flow.

U need to have testing to see if u have related conditions like syringomyelia, tethered cord, Ehlers-Danlos, sleep apnea, intra-cranial hypertension, CSF blockage and overcrowding.

Medical schools do not teach what many of the chiari researchers( which also happen to be most of the chiari drs we go to see), techniques, or even what they have found that helps.

This can be a bumpy frustrating ride, but know u r not alone : )

We r happy to have u join us here, but not happy for the reasons that bring u.

"selma"

[manders148]

i have been having many problems lately and just found out myself that I've had Chiari 1 malformation since i was like ten years old and im now nearly 21 I'm so irritated that I've been through all this and no one tells me till now that i have this i was in foster care and they didn't ever say anything about what it was now I'm looking for a good Dr to go to to get this all figured out... am i wrong for feeling this way?

[trdofpn]

I had my surgery on September 20, and I am SO glad I had it done.  Dr. Puccioni was awesome!  I had it done at the Midwest Surgical Hospital where they only do surgeries and it was an awesome place.  The nurses are very good, it is quiet so you can get the sleep needed.  I would recomend to everyone.

[ClaireBear111]

As far as Dr. Puccioni goes... My daughter had a brain tumor two years ago and he did the surgery.  It was pretty much an emergency so we didn't have a choice, but I was so thankful he was the surgeon.  He is well know in Omaha for his cares.  I talked to many nurses and a doctor doing her residency who stated that we were in good hands.  I know that a brain tumor in a child is different then your situation, but I can say his bedside manner was awesome and he was always willing to listen to our questions.  He was a blessing to our family.  Hope all goes well for you...

[trdofpn]

They thought I was having migranes as well.  It wasn't until I saw Dr. Puccioni that I finally felt someone was listening!  His Physician Assistant is very nice too.  I did hear from someone in Moville Iowa who had her surgery done at CNOS in Sioux City but I don't think they do very many decompresson surgeries.  

I feel for your son.  I can't imagine living with this at that young of an age!  Dr. Puccioni said that he did surgery on someone who had gotten hit in the head with a ball and started to have symtpoms of Chiari (found out he did have Chiari) and after 6 weeks he was back to normal!  There is HOPE for your son!