one year MRI shows C2 nerve and Occipital Nerve entrapment

[Mei Mei]

Here is a link from Aetna.com that has a review of the literature on the topic.  It was sent by Erin.   There is a review of several of the doctors including Dr. Ducic.


http://www.aetna.com/cpb/medical/data/700_799/0707.html

Mei Mei

[staypoz]

Mei Mei,

Many of us were given options to choose from for the treatment of our AN and had to choose among them; you are now having to do the same thing about the treatment of your head pain.  While it's good to do due diligence, at some point you reach information overload and that gets you nowhere.  Whatever you decide will be the right decision for you. 

staypoz 

[Mei Mei]

Thanks, StayPoz!   I'm still waiting for some input from my doctors and some other doctors.   Have been out all day and none of them have written.   These things move slowly.   Saw a movie this afternoon with a friend:  Made in Dagenham
I highly recommend it.   It's very uplifting and a break from our worries and woes.
Hope to see you tomorrow morning.
Mei Mei

[Mei Mei]

Here is yet another lit. review by United Healthcare.   They didn't review Dr. Ducic as Aetna did.

https://www.unitedhealthcareonline.com/ccmcontent/ProviderII/UHC/en-US/Assets/ProviderStaticFiles/ProviderStaticFilesPdf/Tools%20and%20Resources/Policies%20and%20Protocols/Medical%20Policies/Medical%20Policies/Occipital_Neuralgia_and_Cervicogenic_Headache.pdf

Dr. Niparko called an left a message of concern on my cellphone.   I was so surprised.   This is the first time he ever called me.   He said he would call today.
Mei Mei

[Janet]

Hi Mei Mei,

Look on page 6 paragraph 5. You will find Dr Ducic's study results. Thanks for posting insurance reviews. It is a handy way to compare studies.

Janet

[Mei Mei]

Thanks for pointing this out to me.  I must be getting cross eyed from researching all this stuff.    It's the same study on Aetna showing 12 patients have both nerves cut.   Did you have both nerves cut?    He is suggesting three nerves to cut for me.

MMA retrospective chart review was conducted to identify 206 consecutive patients undergoing
neurolysis of the greater or, less commonly, excision of the greater and/or lesser occipital nerves.
Of 206 patients, 190 underwent greater occipital nerve neurolysis (171 bilateral). Twelve patients
underwent greater and lesser occipital nerve excision, whereas four underwent lesser occipital
nerve excision alone. The investigators found that 80.5% of patients experienced at least 50%
pain relief and 43.4% of patients experienced complete relief of headache. Minimum duration of
follow-up was 12 months. (Ducic et al., 2009)

[Larry]

Wow,

Info overload, it does take time to properly analyse this stuff but very useful.

Mei Mei, whilst taking Voltaren, make sure you take a stomach med like Losec otherwise prolonged use of Voltaren will cause an ulcer.

laz

[Janet]

Yes, Mei Mei. I did have the nerves cut.  I am not one of the patients in Ducic's study. The study was completed, before I sought his help.

Janet 

[Mei Mei]

Dr. Niparko finally called and I was so happy to talk with him.   He was against the surgery and wants to see me.   His secretary called and gave me an appointment for next Friday at noon and 2 pm for Dr. Tamargo.    He asked who said the nerve is entrapped and I said the radiologist and the Neurosurgeon Dr. Ammerman.   I also said my neck hurts and he said he would rather take out the Titanium mesh than cut the nerves.  He said they have never had to do this at Hopkins before.   I told him that Dr. Ducic told he he has done this surgery on Hopkins patients before.   He said this was very irresponsible for him to talk like this and he wants names of these patients.   Tell him to give you the names.   I said I can't do that;  it is private.  You need to call him and talk with him about it and get the names from him directly.  He said again this has never happened to Hopkins patients and I'd like to see you.   We can take out the Titanium  mesh if your neck is hurting you.   I said my primary care said that can't be done and your brain needs the protection and I replied who would do it.  He said he would and it is an outpatient procedure and that the bone has begun to grow back.   He also said the cutting of the nerves is a big procedure and I said the doctor said it is a two hour out patient procedure. 

Now who to believe?   Is is a difficult procedure?    Do I take out the mesh that is entrapping the nerves?   Are the nerves permanently damaged and should I try to take out the mesh and then cut the nerves six months later should taking out the mesh not be enough?   At least I'm doing my homework, but the bottom line is that I have to make the decision and I'm not a doctor.   I don't know where to start.   My gut instinct is to go with Niparko and take out the mesh first and continue taking the Nortryptolene as needed and discontinue the Voltaren.

Anyway, that is the update.

[staypoz]

Wow, Mei Mei.  Dueling doctors!  Ducic told me he had operated on Hopkins patients also, fyi.  It surely can't hurt to see Niparko and Tamargo again since they did the original surgery.  I will be interested to hear why they think it's the titanium plate that's the problem.    Good luck and keep us posted.

staypoz

[Mei Mei]

I know.   What do you do with dueling doctors?   I'm not a doctor?   I don't know who to believe.    Dr. Li, Dr. Ammerman and Dr. Ducic think I should cut the nerves because they are damaged.   Dr. Niparko is concerned about Dr. Ducic fixing Hopkins patients and he has never heard of him before.   I didn't want to get in the middle.   How would I know the names.   He said to get the list of names for him.    I can't do that.   There are privacy laws.   They had better handle it with each other.    I'm going to Gtown at 2 for another nerve block and have switched to Nortryptolene.   

I'd rather try taking out the mesh and seeing if that works and go for the excision with Ducic if all else fails.

Dr. Niparko told me to try yoga which I am already doing and he said the headaches will go away in time, but people in our local group have had them as much as 10 years.   I'm in year one going on two and don't want to go to ten.
Hugs,
Mei Mei

[nancyann]

Hi Mei Mei:  I'd go with Dr. Niparko on this one too - sounds alot easier to remove the mesh & see what happens then 'cut' the nerves.  Good luck with the appts. tomorrow.
Always good thoughts,  Nancy

[jennifer7]

Oh wow Mei Mei I can't believe his assistant would say that.  It would definitely make me reconsider my opinion of a doctor if his assistant doubts whether he'd remember to show for surgery.
Go enjoy dinner, let your blood pressure and headache relax and think about all of this tomorrow. 
Sorry you couldn't get the block and I hope your appt with the Hopkins drs goes MUCH better tomorrow.
Jennifer

[yardtick]

Mei Mei,

Damn I feel so terrible for you!!!  I hope your dinner out with your father for Chinese New Year was what you needed to lower your blood pressure and pulse.  Happy New Year to you and your family.  Speaking of family, do you know Diane Morrison on facebook is my cousin?  She lives in Michigan and had surgery in the fall trigeminal neuralgia.

Anne Marie

[Mei Mei]

I didn't take him.   He was so happy in bed, but we are taking him at noon today.   I hope he likes it.   He's just so happy to be here concentrating on his Soduko puzzle in the newspaper.   

Diane Morrison...I didn't know.    Did she have an AN too?  How did she get the neuralgia?

By the way, I really loved the workup in the Georgetown Neurology Dept.   They were the first people of all to worry about my drug interactions and lowered the Cymbalta, eliminated the Alleve and added Indomethcin.   They were worried I'd get Serotonin Syndrome and end up in the ICU.   It's really serious and all of us here on the Forum should be aware of this.   I looked it up on the internet and we should demand that the docs pay attention to the drug interactions.   I've seen about a dozen doctors and given them a list of my drugs and these were the first people to be genuinely concerned about Serotonin Syndrome.

I'll look up Diane on FB and send her a message.
Mei Mei