Hi Brian,

I can't be of much help to you. But, wanted to let you know you and your wife are are not alone. My 12 yr old son just had bilaterial pial synangiosis surgery done on May 31st in Boston (we live in Philadelphia). He is covered by 2 insurances, and hmo under my husband from work and one through our state (because he has disabilities). The hmo denied us and we appealed 5x and they still denied us. We are not allowed to go out of state for care unless it is an emergency and/or there is not a dr within the covered area who can perform the same surgery. Finally, my son's state insurance covered the surgery, but now we are starting to have problems with this insurance because due to complications, we have been back to Boston 3 times since June.

We could never have afforded to pay for the surgery ourselves. We are having a hard time paying for travel expenses going back n forth to Boston. We recently receivied a copy of the bill from Boston children's Hospital and it was a little over $73,000 for a 6 day stay in the hospital. This does not include the day we had to go to have test performed before the surgery.

I would appeal the denial and find out if the neurosurgeon who did not offer treatment would refer her to Stanford for treatment, this might help you fight the case with the insurance company.

Best of luck to you and your wife.

My son had his two surgeries at Stanford last April.  We also have an HMO and it wasn't a sure thing that we would be approved to go.  I would suggest that you ask for a case manager from the insurance company.  Then you will have only one person to talk to each time and nothing will be lost.  Also, get the local doctor (in the case of my son it was his pediatrician--his PCP) to send in the referral to Dr. Steinberg.  For us, the case went to a review that meant they sent the information to three or four separate specialists to determine if he needed the treatment Dr. Steinberg suggested.  That review came back saying that he did.  I talked to the case manager many times during those few months.  Finally the insurance approved us.  After that, it still wasn't a sure thing because the lawyers from the hospital had to meet with the lawyers from the insurance company and work out a contract.  That meant that for Daniel's stay, Stanford was considered "in network". 

I wish you and your wife well.  Don't take no for an answer.

My wife actually has an appointment with Dr. Tamargo next week. She is currently under the consultation of 3 neurologist, so I am somewhat relieved she is finally seeing a neurosurgeon at JHU. I've been upset at how long this has been taking for us to potentially receive treatment. The neurologist from JHU (I'll leave unnamed) thinks my wife is not in need of treatment and does not believe any of her symptoms are serious. I think he is so wrong because she is noticeably weaker and has numbness on one side of her body several times a day. Last week we believe she had a focal seizure during a Perfusion MRI test. A neurologist from the radiology group and her other neurologist from University of Maryland believes she was having a seizure but our (un-named) JHU neurologist thinks it's just a reaction to the contrast. We were explained by the other neurologist that focal seizures are common among Moyamoya patients and that a reaction to the contrast would affect the entire body...not one side. Also, white spots from her MRI looked like she's been suffering from TIA/mini-strokes according to Dr. Steinberg from Stanford and our other neurolgist. Again, the JHU neurologist says white spots in an MRI image does not mean a stroke spot.

I don't understand why the JHU neurologist thinks we should wait for a devastating stroke to occur. He does not seem to believe this to be a progressive disease, regardless of how long she's lived with it and how slow the progression. There is no medicine that will treat MD from what I've read, and I don't think the fact that she has adequate blood flow through collateral arteries should delay treatment.

I hope Dr. Tamargo's opinions are different than his colleague's and will do something us...I've read nothing but good things about him.

(Sorry for the rant.)

I'm so sorry your wife is going through this (and you, with your wife!).  I am praying for her health and future.  Please let us know how she is doing when you can.

Hello Brian,

I'm sorry to hear about your wife and all that you are going through to get her the appropriate treatment she not only needs but deserves.

To answer your question, it is difficult to get referred out-of-network to a specialist through a HMO. That said, it is highly unlikely the HMO has a qualified specialist in moyamoya disease and treatment simply due to moyamoya being considered rare and most neurologist don't specialize in moyamoya. Some have never heard of moyamoya.

The problem is the HMO has time on their side. Having gone through this I can share my experience and what I had to do to get my brother treated at Stanford.

Write everything down.
Determine who the decision maker is.
Appeal a denial.
Appeal a denial to regulators in your state. Who is the regulatory agency in your state? It could be the department of insurance as an example. Who is in charge of complaints?
You can complain to the accrediting organization of the HMO like NCQA, URAC and JCAHO. They don't like complaints.
You can contact your state representative or senator.
Never take no for an answer
Do not be intimidated.
Find out time lines. Most states have regulations establishing a timeline within which a treatment decision must be made. Don't allow this to drag on.
A medical doctor advocate is always helpful.
Get a lawyer if you need one.

In a nutshell, the HMO is on the hook for the medical costs. It's corporate - it's a business decision. As cold as it may sound, they are not working in the best interest of the patient.  They most likely don't have a moyamoya specialist. Just because a neurologist has performed a bypass doesn't make them an expert in the treatment of moyamoya. Some neurologist won't perform a bypass. That''s why you need an expert or at least a neurologist who truly understands moyamoya and has treated moyamoya patients surgically. Without the proper treatment, the internal carotid arteries continue to narrow and the collateral vessels aren't strong enough to carry the needed oxygen and nutrients to the brain. The bypass puts a moyamoya patient on a level playing field. If Dr. Steinberg feels your wife needs immediate medical attention because her situation is severe, that should be enough and says it all. Dr. Steinberg is one of two leading moyamoya specialist in the USA.

Do not let this fizzle. Keep after the HMO even if it means contacting a state regulatory agency, state representative or senator or even a lawyer until your wife gets the treatment she needs.

Please don't hesitate to contact me if I can be of any assistance in helping to get your wife properly treated and soon.

Warm regards,

Lore
   

Thanks for all of the advice and support. A few things have happened since I last posted so I will update.

My wife was discharged from Johns Hopkins after 3 days in the hospital. The discharge report was very unprofessional in my opinion. She continued to have spells of uncontrollable jerks and movements of the arm and leg even when the doctors came in to tell us her EEG was normal and that she can return home. I was shocked they would release her but her vitals were good and all of the tests they performed were normal... nothing else they could do for her. Her seizure like spells could not be explained other then stress as a probable contributor, so they prescribed Lexapro. The only restriction in the report was no alcohol but no mentioning of driving restrictions. My family and I think it would be devastating if she had her spells while driving, because she becomes weak on one side of the body. 

We met Dr. Tamargo on Sept. 19 and he recommend EDAS surgery after 10 mins of questions. I was so excited that finally someone from Hopkins offered to treat her. I then fired off some questions I had prepared, such as how many surgeries he performed, why EDAS vs. direct bypass, life limitations after surgery and maintenance medications. When we got to medications I asked if she needs to continue Verapamil. He pause and quickly changed his mind because he thinks her spells and symptoms are due this blood thinner/pressure medication. His recommendation was to stop use and meet back in 6 weeks. Well it's been over a week off the Verapmil and my wife is still weak and occasionally would have the spells of uncontrollable movements. Her other 2 neurologist thinks she is still better off on Verapamil to aid with blood flow.

I am tired of waiting as it's already been 3 months and my wife deserves treatment. She is now on medical leave and we canceled our HMO insurance from her employer. We're going to get a PPO plan under my employer and we're going to see Dr. Steinberg ASAP once the insurance change is complete. From my research on the board it seems like her symptoms are very common among MMD patients. I will continue to update. Hopefully, soon from Stanford.

Dr. Tamargo is really excellent in my opinion and with my experience. I still think so and believe. Every case is different. Hopkins has always been the #1 hospital in the US for the past 21 years. Especially in Neurology & Neurosurgery.

Specialties

Praying for your wife and you.. sorry your having such a hard time.  I understand your furstration.  there is no NF (neurofibromatosis) muldisplianery clinics in my state and my state medicade wont let me go out of state so i'm stuck with seeing 7 to 10 different doctors yearly for my daughter.  she is 15 y old and had a stroke in dec.  and had one EDAS surgery in april and one in may.. I just found out last week her moyamoya was getting worse and the back of the head atteris were now starting to close off and we are waiting for more test to be done to find out what they will do for her.  she too as sez. due to moyamoya.  she eyes go blury on her and she gets right side weekness and her pupils get as big as her irris of her eyes and stays that way the entire time the sez is gong on.  she at times gets the confussion and not able to answer questions but as she comes back from it  she is able to answer questions.   praying for all.  ((hugs)))

Brian T wrote on Oct 7^th, 2011 at 8:46pm:

FANTASTIC news Brian!