one year MRI shows C2 nerve and Occipital Nerve entrapment

[cin605]

Wow MeiMei!
Happy New Year!Here is a toast!
sorry you are having so much difficulty w/ these Drs and Neuros...I hate nothing more then the run around...
HUGS!

[Mei Mei]

My primary care changed his mind
and is now recommending removal of the mesh instead of the cutting of the three nerves.
He spoke with my Hopkins surgeon Dr. Niparko and realizes this step is much less invasive.  I wish he had called him last month so I wouldn't have had to go through all this research on my own.   Had I not called Dr. Niparko and insisted to talk with him, I wouldn't have had the support of my doctors in refusing to do the surgery.   My daughters, my friends, everybody was worried about this upcoming surgery.
Seroun Wang
From   Dr. Theodore Li
Subject   RE: RE: RE: Georgetown Neurology visit today
Message
Dear Ms. Wang,   I spoke with Dr. Niparko today.  I think the issue can be somewhat easily settled.  As you indicated, Dr. Niparko indicated that the surgical mesh can be taken out - in which case it is easier to remove the mesh (and thereby remove the likely source of nerve irritation) than to individually take out the three superficial nerves.  I was happy to here that there's been sufficient healing so that the mesh can be safely removed.   Dr. Niparko also suggested trying some maneuvers to see if the pain can be alleviated before resorting to mesh removal.TL


From   Dr. Theodore Li
Subject   RE: RE: RE: RE: RE: Georgetown Neurology visit today
Message
Dr. Niparko did not think that the mesh would be difficult to remove and that its removal would be less delicate that trying to individually extricate the peripheral nerves.  I'd hold off on the maneuvers and try the lidocaine injections.TL


Thank you dear friends for being there and listening to all my stories throughout this decision process.
Mei Mei

[Jim Scott]

Mei Mei ~

The road to ending your headache agony has certainly been long and arduous.  I'm very pleased to learn that relief is very likely to come, soon, and without the nerve surgery.  Congratulations.  Your research and,  just as importantly, your persistence has paid off.  I wish you a speedy resolution for your seemingly intractable headaches.  You have definitely earned it!

Jim

[Mei Mei]

Thank you, Jim.   I appreciate your genuine care and support.   With each turn I thought I was close to a solution, but then there was another turn.   Hopefully this is the last turn and the real light at the end of the tunnel.

Hope to see you in Cinncinati in June.
Mei Mei   

[Denise S]

(Please help me.  I am a 31 year old female who had a 3 cm AN removed during an 8 hour operation last April in NYC. I spent 22 days in the hospital for extreme pain!!!!!! I still have a lot of pain and I went back to see my neurosurgeron about two weeks ago and he said that the pain is originating from the titanium mesh plate he inserted to close the skull and recommendes removing the plate since the skull has reformed. I too feel a scushy, cracking, moving spot in my skull where I am convinced the pain originates from and spread to my left eye on the AN side that is so intense and severe. I believe it is due to positions since I always get it upon awaking in the moring. I don't know if removing the plate will eliminate the headaches. He couldn't guarantee it but seemed confident it was worth a shot. I can't bear the thought of another surgery. I have been working with a pain management neurologist for the past 11 months and getting no where.
Can anyone please help me?
Lauren)

Mei Mei,  I know I haven't been around for awhile, but I hope you get this before Friday.  Anyways, I knew I had seen posts before about having plates or mesh removed and I was able to find one so I copied a comment above.  This was all I could find was the comment wher her dr. mentioned it.   It was from like 2006, and she didn't post after as ti if she had it done.  BUT, I also posted becasuse I know someone frome Michigan that had Middle Fossa (yeah a bit different) that about a year after surgery had her titanium plates and screws removed because of pain she kept having and they thought it was from that....for her it was that she had a problem with major scar tissue.     

I know we discussed that before about your situatio and scar tissue.   Seems like if your doctor says the mesh can be removed, you may want to start there befer messing with the nerves?   THe mesh is there to hold th bone back on place while it heals.    Of course hopefully they could clean up any scar tissue while in there and we will pray you will come out feeling much, much better!!!!???

I think of you so much, and am sorry I have not been in touch.   

Thinking of you & Hope you feel at peace and feel 'rest asured' after your appointment.

Denise

[Mei Mei]

Thank you for posting this Maureen.   I am in Boston Logan Airport waiting for a flight back to Baltimore.   My daughter presented a paper yesterday and I had to babysit her daugther 13 months old yesterday and this morning.    She's going to publish before the end of the month on  genetics and atherosclerosis.

I will be at Hopkins tomorrow morning.   I hope that the mesh gets taken out soon.   The headache was horrible last night and the night before.   I am also seeing a geneticist that specializes in Ehlers Danlos Syndrome and Chiari in Baltimore.   People come from all over to meet her.   I had to fill out a 32 page online form before she would consider me as a patient.   After six weeks I was given an appointment for March 28th.    Her name is Dr. Fancomano and they rate her very nicely on the internet.    Maybe you should go to her for the Chiari.  I hope you are doing well and thanks for writing.   Take care!
Mei Mei  

[Larry]

Good luck Mei Mei

I really hope this procedure works because "The Headache Club" is not looking for members.

Just goes to show that AN's and all the various options now available for tretament do need researching on a case by case basis. This is a constant message sent out by the senior posters on this forum.

Looking forward to a positive post from you soon

cheers


Laz

[Mei Mei]

Thanks, Larry!   It's a club full of really great people, but I wish we could have met under better circumstances.    My appointment with my surgeons to discuss the headaches that they weren't supporting all year long is tomorrow at noon for the Neurosurgeon and 2 pm for the ENT who said he is the one to take out the Titanium mesh at Hopkins, so the surgery for the cutting of  the nerves is cancelled.

At my appointment in Georgetown neurology I had a comment from Maureen Moriarity who just left Hopkins for Georgetown where she was before.   She said the follow up is a problem and that's why my surgeon didn't know that Dr. Ducic is operating on Hopkins patients.   The patients don't get the support and pick up their CDs and x rays and start shopping.   There should be some kind of firm follow up that is entered in a national database so that we have a real picture of what is going on instead of taking a stab in the dark.   Some of these docs are members of the ANAUSA and should log on and digest what we are saying.   Many of us get forrific post operative headaches and need some real help with this instead of  going down an unguided path and feeling helpless.    The last time I saw my surgeons one of them said it would go away in two weeks and the other gave me a packet on Yoga stretches.   With what I have going on, it just wasn't the best advice for such well known surgeons.   When you have a big problem, you don't want to have a pacifier put in your mouth.  

Will be posting tomorrow night when I get home from Hopkins.

Have a headache free night one and all!
Mei Mei

[Mei Mei]

I went to see Drs. Tamargo and Niparko today.Dr. Tamargo said the radiologist was incorrect and there is no entrapment of any nerves.   He does not think that removal of the mesh will help.   He said very few patients report feeling better after removal of the mesh.  He said he had no problem with cutting of the three nerves.   He wants me to come back for my two year visit in Jan 2012. Dr. Niparko also said that the radiologist was wrong and that there is no entrapment.   He said that radiologists are motivated by finances and they need to report more problems.   He said it's complicated and didn't elaborate further.He used a technical term which I forget right now but means that I have pins and needles on my scalp and have tenderness on my head.   He said the right side of my neck is bulging and he disagrees with Dr. Tamargo saying that removal of the mesh is known to be successful in relieving pain.   He said he would consider it during the summer and wants me to practice yoga like a guru, which I am already doing.   He said he would call me in Mid March and wants a copy of the report from Dr. Francomano on her assessment of my Ehlers Danlos Syndrome.   Maureen Moriarity said she will talk with Dr. Ducic next week on choices I now have in keeping me comfortable (Blocks or Botox). I fear the end of my headaches is not near.   I keep having them every night and every day.   I am now using Indomethecin to stop them.   In the middle of the night I take Tylenol PM with the Indomethecin.

I fear the end is not near for my headaches.   The light at the end of the tunnel is dimming.
Mei Mei

[Jim Scott]

Hi, Mei Mei ~

I'm sorry to learn that, once again, doctors are offering you conflicting opinions that leave you adrift with no real solution in sight.  I urge you keep fighting for answers and don't allow despair to take over.  Others (the intrepid Captain Deb comes to mind) have endured a similar struggle and emerged victorious.  You will, too.  You're in the thoughts and prayers of many, including me.

Jim

[Mei Mei]

Thank you, Jim.    That is very encouraging.   I like Deb who is still suffering from headaches perservere, but the roller coaster ups and downs are troubling.   There's no clear solution and in the end I have to make the decisions and I am not a doctor.   There needs to be more research and follow up on the AN patients so that there is a protocol of what to do and not write us off to find the solution alone.

We have to push for that for future ANers.
Mei Mei

[jennifer7]

Hi Mei Mei
I saw mention of Chiari malformation a few posts up, that causes miserable headaches too.  Have you had a MRI for this?  It tends to bother people worse as adults.
I am so tired of the brain!!!!!!!!
My 4 year old daughter has Chiari, fortunately her headaches are very few, she also has no ear canals and will eventually need surgery to open them, more head surgery.  "They" say she has minimal risk for post-op headaches and her facial nerve shouldn't be involved--just like me.  And I have to find a dr who I believe will do the (safest?) surgery, just like you have to decide which dr you now believe.
The head is so incredibly complicated, wouldn't it be nice if we could live without it?

[Mei Mei]

    Interesting concept, Jennifer.   Just like the headless horseman!


I don't have Chiari but I have an appointment with a very good doctor in Baltimore that sees Chiari patients.   She also sees Ehlers Danlos patients which I am.   She is a geneticist and I've known I and my daughters had this for over 10 years now.  I want to follow through on it because my daughter and two grandchildren have the cafe au lait spots which is one outward sign.   Genetic counseling and testing is what I am looking for with her.   She was one of the original doctors on the start of the Genome Project at NIH.   I also applied for the study at NIH on Ehlers Danlos.   See if you can find one on Chiari.   

I'm using the Chiro pillow you recommended and love it.   Thanks for the suggestion.
Mei Mei with a hole in the head

[staypoz]

Hi, Mei Mei.  I don't think your options have shrunk, it's just that the doctors you've consulted have different opinions on what would work best for you.  It would be nice if there were a clear-cut solution to treating these  headaches, but there doesn't seem to be, unfortunately.  And your doctors are probably looking at the problem and how to solve it from their vantage points as experts in a particular specialty.  I don't know if you saw any doctors other than surgeons before you had your AN removed, but I did and my head spun for a while as I tried to sort out which of the treatment options available would be the best for me.   

As hard as it is to deal with this information overload, if there is any good news in this it's that all of them are offering you their very best opinions on how to find relief. 

Hang in there!

staypoz

[Mei Mei]

Thanks for the lovely note.   I consider it a sweet Valentine.

My Primary Care just sent me an email and flip flopped.   Last week he told me to cancel my Feb 16th surgery and said it was better to take out the mesh.  Today he sent this mail to go ahead with the surgery and cut the three nerves.   It's very annoying that he's changed his opinion three times.   It's like the rug is pulled out from under you.   I thought we could lean on our primary care for advice.   It doesn't seem right to change your mind so many times when consulting with a patient with horrific headaches.

Sincerely,
Mei Mei