Chiari Doctor in Omaha

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.

I am so sorry u r having such a rough time...it seems too many of us get this run around with this condition.

I do not know of a dr in ur area, nor have I heard of this dr. Ne NS can do chiari surgery,but I would try to get to a true chiari specialist. After a look on the net I found that the Dr u mention is a pediatric NS...no mention of chiari, HOWEVER, I did find a dr at the same facility and he is focusing on chiari a William E. Thorell, M.D......please research a bit more
http://www.unmc.edu/neurosurgery/bios.htm   He appears to be the only dr out there at this location that mentions chiari in his bio.

U may want to try one of these drs and get another opinion by one like Dr Oro.....and go with whom u r most comfortable.

Many of us do need to travel, so do bear that in mind : )

Glad to have u join our little family here, but not for the reasons u had to seek us out.

Good luck
"selma"

[trdofpn]

Thank you!  I am on a waiting list to see Dr. Oro but because my Chiari is mild, I could be waiting a long time.  There is no consideration that I also had a whiplash that has caused the symptoms to increase.  I am considering traveling to Mayo Clinic in MN but I haven't checked that out yet.

[selmaS]

HI...Mayo is great for many things, unfortunately...I have not heard ne good reports on finding chiari drs there.

By mild, what do u mean?...what do the drs mean?

Was ur whip lash treated with PT?....do u have ur natural curve of the lordosis?

"selma"

[trdofpn]

When they say mild, I think they mean that it is small but I don't remember the size.  I have read some that are like 12mm and mine was not that big.  

After the whiplash injury I did PT and am still doing PT.  The accident was almost a year ago!  My pain Dr. sent me to a chiropractor and that is when things really got bad.  It was after he tried to do a manipulation turning my head.  I had immediate pain that was horrible and then I started getting all these other symptoms.  I then went for an MRA that showed the Chiari.  

I talked to my PT about all this and he thinks it all makes sense.  He also said that he has had patients of Dr. Puccioni after decompression surgery and they do very well.  He said that although he is primarily a peditric neurosurgeon, he does adult neurosurgeries also.  

I have no quality of life right now so I am hopeful that this will help me get my life back.

I do not know about the curve of the lordosis.  I have degenerative disc disease with minor underlying spina bifida occulta.  I have had back surgery for lower back and since that time I was doing great - playing sports and doing everything I ever wanted to do!

[*Stormy*]

Hello and Welcome,

If they are using the term "mild" because you have a smaller herniation, please bear in mind that it really isn't the length of the herniation, it is how much blockage is occurring. I don't think my herniation was huge (my NS never told me the measurement) but what he was more concerned about was the foramen magnum was so overcrowded that there was little space for the CSF to pass through. THAT is what a Chiari specialist will look for and if your dr isn't considering that fact then you really need to move on to a true specialist.

I have heard that chiropractors can be very dangerous for people with Chiari, especially if they work on your neck. As for PT, I found it to be helpful for awhile but my therapist was very aware of the Chiari and was very careful.

Also, I have heard of several people who have spina bifida occulta and Chiari so there seems to be some kind a link there as well.  I know there is at least two members here with that issue.

I totally understand what it feels like when you lose your quality of life...it is a very hard thing to stomach. But that is something that you need to consider, with your life being that affected, you really need to push to get the right kind of care and to get someone to take you seriously.

Good luck!
Carolyn

[amyjo738]

Hi all, my son was diagnosed with Chiari in September 2009 after he took a hit to the head in football and the headache was so bad we took him to the ER. We have seen a Neurologist, neurosurgery, pain specialist and chiropractors. The neurosurgeon says his symptoms are not from the Chiari but we do not believe that to be true. He is 16 years old with no other health issues. We were just referred to Dr. Puccioni in Omaha but nobody that I know seems to know anything about him either. I am so frustrated because my son has no quality of life right now, he is 16 and should be hanging out with his friends but instead he is at home with headaches with mom standing over him with a blood pressure cuff and his migraine meds. What kind of life is this? If anyone knows anything else we can do to subside the pain we are open to suggestions! Thanks

[selmaS]

Hi and welcome....

I responded to ur other thread unaware of this posting....I would suggest u look into to a true chiari specialist...keeping in mind u may need to travel to get to one....we r not all blessed to have one in our area.

Many NS will offer to operate, while many will say it is not the issue, but u want one that feels the benefits outweigh the risks.And will do a complete check up to rule out other issues including related conditions.

At 16/17 I too was at home far too much with HA's...unfortunately for me my dx came very late in life so I had to learn to cope....ur DS is lucky to at least know what is causing his pain.
We do have a list of anti inflammatory foods that can help some...and reduce the NSAIDS needed to help relieve pain. Most will   agree that pain meds do not touch a chiari HA.

Since u mention a BP cuff is he having high BP?..when he stands?...while seated?

I would keep away from chiropractors until after u see a chiari specialist.

"selma"

[amyjo738]

Thanks for the advise! We are will be going to see that Dr Puccioni that was mentioned above on Tuesday! He feels very strongly that my son IS a surgical candidate! All I want is quality of life for my 16 year old son and for him to be able to be back on the ball field next year for his Senior year in High School because it means so much to him!

We got a list of foods from his neurologist not sure if it would be the same list?

His blood pressure is only high when he has the really bad headaches not matter what he is doing! But when he is

[amyjo738]

My daughter hit the post button sorry! HA

I was saying when he is having a good day he doesn't have any problems! The neurologist is the one that sent us to the chiropractor but he is bound and determined that he has migraines NOT DUE TO THE CHIARI ugh! He is not currently seeing the chiropractor because it didn't change anything and it is too expensive to keep going! I am keeping my fingers crossed that this doc can do something for him!

[selmaS]

I had drs that said I had migraines too...that went on for yrs...with no improvement.So it is not surprising to me that is what u r being told...many other members here also have been thru this migraine dx....it is possible to have migraines along with chiari HA's...but to blame it all on migraines is being blind in MHO.

I hope this other dr is open to new views of chiari..and he orders a CINE MRI to see if there is a CSF blockage....there r many other ways to review Brain MRI's too....so, do go in and listen carefully...but do not allow this dr to upset u...keep pushing for answers.

Please keep us posted

"selma"

[trdofpn]

I have done a lot of research on Dr. Puccioni and have found he is the best neurosurgeon in the Midwest.  I have talked to people who have experience with him and I am very confident that he will do a very good job for me and for your son!

Are you open to communicating outside of this forum?  If not, please keep me updated on here!!

[trdofpn]

They thought I was having migranes (migraines) 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!  

[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]

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.

[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?

[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"

[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.  

[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....

[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]

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...

[manders148]

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

[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

[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]

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]

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]

yes i have chiari also

[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]

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]

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 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]

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

[manders148]

my brain

[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"

[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]

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"