I'm reaching out to anyone who has neurologists, neurosurgeons, and/or pain doctors that you would recommend in Arizona. I was diagnosised in November 2009. I got a second opionion in January 2010. I had my decompression surgery on February 11, 2010. I have had a totally of 8 surgeries since then--7 chiari related and my gallbladder (that was the icing on the cake!!) I didn't have a neurologist before my surgery. I was sent straight to a neurosurgeon. It's difficult to find a doctor who understands or even knows about Chiari malformations. It is even harder getting a doctor to see you once you have had surgery. I was assigned a different neurosurgeon for the last 3 surgeries, but he was only here for a year. He was absolutely wonderful, but he is now in Florida. I thought I had finally found a neurologists that would work. He saw me on a consultation basis as a favor to my absolutely wonderful primcary care physician. He has politely refused to see me again stating that I was too much of a liability. I have a vp shunt that was placed at the wrong angle and then later determined that I never needed it in the first place. I started seeing a neurologist in July 2011. I have seen him four times and spoke with him on the phone more times than I can count. I am having symptoms of a csf leak again. I am miserable and have only been able to work 5 days since January 3 of this year. Everytime I go to him, I feel like it is the very first appointment. This last Tuesday he was looking at my last scan and made the statement that it looked like I had a foreign object on the right side of my head and then asked if I had a hair clip in my hair during my scan. The foreign object was my shunt. He at least knew about the Chiari, but I had to remind him about the shunt, prior csf leak and psuedomeningeocele. I have to do this everytime. I have to trust my life in this docs hands, but he can't remember the most basic information about my case. He has never looked at my scans. I have brought them to every appoinmtent. I can't trust him to make a medical decision if he doesn't have all the facts--even though the facts are right under his nose in my very thick file.
I can't financially afford to go out of state. I have to find someone in the state of Arizona. Any names would be greatly appreciated.
My gf is also looking for a chiari specialist in AZ. We live in Gilbert and she has been being treated at Foothills Neurology for over a decade, misdiagnosed with migraines. She recently saw a spike in the frequency and intensity of her headaches and got an MRI just to eliminate any type of foreign growths. The doctors at Foothills said she had a normal MRI, nothing to worry about, but when she showed them to her chiropractor, he said chiari was a likely prognosis.
If anyone has any referrals or advise, please let me know!
He was the only listing for AZ on the Chairi International Association page.
Right now, we are in the process of strategizing what the next steps for us are, and selecting a NS is right at the top of the list. The names we have been given here are Dr. Ajo Joy, Dr. Vikram Kumar, and Dr. Kris Smith, and Dr. Peter Nakaji and Dr. Vargas.
I guess wee will just spend some time making phone calls and asking some questions.. please keep the info coming if anyone has updates.
The referring doctor's office should fax (602-406-6398) patient demographics and medical records, including a copy of the patient's insurance card, a recent MRI (date of the MRI must be within the past 3 months) and a referral if required by current insurance company(s).
If the patient is a self-referral, then he or she is required to provide all of the above records from the most current physician or the physician who referred the patient to BNA. The records can be mailed, faxed or hand carried to us.
The referring physician's office should contact Dr. Nakaji's office at (602) ■■■■■■■■, then fax (602-406-3257) patient demographics and records, including a copy of the patient's insurance card, recent imaging, and a referral if required by current insurance company(s).
If the patient is self-referring, then he or she should provide all of the above records from the most current physician or the physician who referred the patient to BNA. Dr. Nakaji will see patients who have had previous surgery(s), and he will provide 2nd opinions. He will see workers' compensation patients on a case-by-case basis, and patients who have been involved in motor vehicle accidents using private health insurance only.
Thank you for time you took to offer this response Susan.
We spoke briefly about this list yesterday and had decided to reach out to Dr. Smith, and Dr. Joy, and had Dr. Little on our short list as well. She has had such a crap run of mistreatment with her current NL, at Foothills NL in Awahtukee, that we are in search of a replacement who actually knows something about CM, and doesn't think it is a myth or imaginary. So if Dr. Joy can be that guy, great.
I try to go to every one of Allison's appointments, I just want to know everything i can about what we are facing and dealing with. I appreciate the tactical advice on how to get to the right person at Barrows. We are going to try to wrap up some supplemental insurance this week, and then we will be looking for an NS. We have talked about going out of state for this, and may yet do that. I have learned more personally about CM at this site and Allie and I have talked about the potential of trying to get to Dr. Oro in Aurora if we do go the surgery route. http://chiaricare.com/
Your help and support is extremely valuable and we both thank you for your effort.
I assure you Susan, Allie is the most wonderful woman I have ever known, and I am the lucky one. =-)
I absolutely love this site. I have learned more and feel more empowered when going to the doctor about what I need to ask. The other two I have more recently joined. They are both facebook sites. The Arizona (Syringo) Chiari site is striclty AZ based. The group meets face to face 4 times a year. I have only gone to one. The other facebook group Kelli's Chiari Friends has members from across the world. It is a lot like this site only on facebook.
If anything I have gain validation that there are other people out there in the world who know what I'm going through. I hope this info helped. The Arizona (Syringo) group took a bit longer for me to get a response, but Kelli responded right away.
Susan, I see Dr Smith and do really like him. He did my surgery. He referred me to Dr Flitman (same as Adam) and boy he knows a lot about Chiari. He has made me feel so much better about EVERYTHING!
Please bear with me while I learn how to respond and navigate on this site. I think I tried to write stuff this morning that didn't get out. I tried to make an appt with Dr. ORO today. They said because I saw another neurologist in their office, Dr. Root, I couldn't change. They have a "no change" policy. I couldn't believe it. I told them I saw the guy for two years and he never looked at my MRI results and they told me I would still have to have him as my doctor and he would consult with Dr. Oro if he needed his advice. Give me a break. I hung up. I am now getting a referral to Dr. Bert Vargas at Mayo Clinic in Scottsdale. Does anyone know him?
Well, after yesterday, scratch Dr. Joy off the list of preferred Neurologist's.
He basically shrugged off Allie's continued worsening of symptoms based on the report of radiologist who looked at her most recent contrast MRI and reported that it her brain was "unremarkable". "Dr." Joy claims that you can't make a treatment plan without physical evidence. I'm glad he knows so much... snicker... Like we would lie about the loss of memory, inability to find words that are part of daily conversation, lack of energy, inability to sleep consistently, worsening coordination, constant excruciating headache and neck pain.. i could go on....
When we asked him to do a Cranial Fluid test to see if fluid was circulating as it should, he said he had no reason to suspect that it wasn't and therefore would not be able to justify ordering such a test.
So, we are on the search for another neurologist in AZ.
On a better note, we have started up with a pain management specialist, Dr. Kuppasami. While his methods have not proven to be terribly successful as of yet, we have gotten him directly on the phone and he seems to genuinely CARE, which Dr. Joy very obviously didn't.
We do have an apt. With Dr. Kris Smith of Barrows Institute on the 23rd of Sept. Let's hope that we get a little care there...
Susan, My Primary Care doc who I who I have been to once, is leaving the practice and my insurance wont be accepted where she is going. She is the first person since 2006 to look at my 2 MRIs and tell me this diagnosis. I don't trust anyone anymore either. Who was the nuerologist you talked about here? Who is your primary care physician? Thanks.
I've been going to Dr Joy and for a while maybe a year, it was going well or okay. Well... I've been boycotting him and arguing with him more than anything. I appreciate that we get along that I can talk real with him, (even to the point of confessing that I had tried for the first time in 28 years, cannabis and how I went 37 hours of no pain or symptoms- for a person who has suffered for 20 years, that is AMAZING!) and it has hit an almost dead end with him. I just think, we have exhausted all options with dealing with this on a symptom basis with medication and I don't want Botox.
Hi, my 18 yr old son had decompression surgery at barrows in sept. 2013. His surgeon is dr. Zabramski. We really liked him a lot. We had a very good experience with the hospital and would recommend him. I also wanted to mention I heard good things about a NS that is associated with John C. Lincoln / AZ brain & Spine Dr. Yusupov.
Yes Barrows is a teaching hospital, but that is why the very best surgeons are there. But no matter how good they are you need to feel confident with your Dr. So my best advise is go with your gut instinct.
Hi Rachel,
Sorry but I have not been on here in along time. So I haven’t seen your post till now.
Have you seen dr. Nakaji yet? My husband and I both liked him a lot.
He did a great job on my surgery. I had a large syrinx, so I opted for the surgery ASAP because I was so afraid that I would become paralyzed. I just had my first MRI since surgery which was nov. 25 2013, so it has been almost a year. I had the MRI done here in Silver City, NM and the film will be sent to Dr. Nakaji? After he reviews he will call me so I don,t have to all the way to Phoenix.
Hoping that my syrinx has shrunk a lot.
So far, I feel better…hardly no headaches. I still have tingling and numbness in hands and arms but hoping that goes away in time.
Let me know what is going on with you…
Good luck and I will keep you close in my prayers.
Lisa
Rachel Trulove said:
Lisa,
Did you have a good experience with Dr. Nakaji?? I am sscheduled to see him in October. How are you doing now??
Hi, I just recently joined and saw this post. I am an Az native and have chiari and syringo. I have also worked at Good Sam hospital and had my first decompression at Barrows. All can can say is over the many years I’ve suffered with chiari and syringo I’ve found it quite difficult to find good quality docs here in Az. I do however like my neurologist that I currently have now. Her name is Holly Yancy and her entire staff is very helpful. I’ve seen some of Kumar patients pre and post op and his bedside manner seems to be pretty good. There is also Jose Menendez and Byron Willis. Menedez I would say has a much better bedside manner. For surgical needs though I chose to go out of state.
Hello everyone …
After years of suffering, and made to sound like I’m either crazy or attention seeking (at best) and drug seeking (at worse) finally been Dx CM1(March 13th, 2017 … Although I recently saw results going back to 12 that said same thing, but no Dr informed me, while I’m not impressed with that whole situation, I can’t help but think that is my fault for not asking for scan results for myself,so I will have to chalk it up to lesson learned. I was referred to Dr Andrew Little, has anyone had any experience with him? Any information would be helpful, I had a “surgery consult” on 3/29/17 with Deborah shepherd (nurse practitioner), which is Dr Little’s nurse. I just am not sure as to why a “surgery consult” is not with Dr doing surgery, but I’m new and don’t know as to how things work… While I have 7mm CM1, and have broken my back (thoracic spine) several times do to sleep walking, something new within the last 5-6yrs along with a 2+page list of symptoms that only just began in the same frame.
The nurse called last Friday, saying she discussed My case with the Dr and that I really need to have a cage fusion for C6-C7 “4x10mm” disc herniation that has began to pinch into my spinal cord,; however the Dr didn’t think I needed any Chiari surgery because there are no spinal fluid block, it’s extremely difficult to find words to explain my issues Without