one year MRI shows C2 nerve and Occipital Nerve entrapment

[staypoz]

Hi, Mei Mei.  Severing the nerves sounds pretty extreme.  Have you asked to talk to any other patients who have had that surgery?  You might also want to check in with your neurologist or primary care doc to get a second opinion.  Given all you've been through, I'd want to be sure I fully understood the surgery and any potential side effects. 

Cheers!
staypoz

[Mei Mei]

I'm going to talk with Dr. Ted Li, but already talked with Dr. Ammerman and he said to do it because that is the best thing to do in my case as the three nerves were damaged.   He said he has a call in to him to discuss it.   I also wrote to Janet.   This was the second surgery Janet did the year after.   I'm not sure but I think her first surgery was the decompression.

Mei Mei

[Mei Mei]

Hello All,
A friend sent me a lot found on the internet tonight with Blogs and papers showing cutting of the nerve yielding bad results after awhile when the nerve regenerates.   I sent all these papers copied and pasted to a document and am faxing it to my primary care in the morning.   Have already written to my ENT doctor ... Dr. Feldman for his input about severing the nerves.   Also wrote to the Ehlers Danlos doctor for her input.   She is considering my records before she'll give me an appointment.   I want to know what she thinks in light of the fact that I have Ehlers Danlos and Myogacial Pain.   There's so much to consider.

Now I'm torn because of what I've read.    Dr. Ducic is a reputable doctor and wouldn't just cut the nerves if there were other choices.   They've said over and over how careful he is.   I don't know why he doesn't do the decompression for me.   Iguess it is because I haven't responded to the Nerve Blocks.   He said that was a predictor for success for decompression.

Any advice?
Mei Mei

[Mei Mei]

Here is a link to one site of Ken Follet's book on Pain:


http://books.google.com/books?id=_iroSVcTaNIC&pg=PA89&lpg=PA89&dq=occipital+neurectomy&source=bl&ots=f_HqE-3mE-&sig=SOIulK8E-bxevXM_rI2VX_E9grc&hl=en&ei=OzU2TbvCOsSp8AbSqf3QCA&sa=X&oi=book_result&ct=result&resnum=9&ved=0CDAQ6AEwCDgK#v=onepage&q=occipital%20neurectomy&f=false

[staypoz]

Mei Mei, you are already doing the right thing in doing your research.  It's prudent before any surgery and what we all recommend to each other.  Only you can decide what to do.  Would it help if you could talk to a couple of patients who have had this same kind of procedure?  Perhaps the doctor can give you some patients' names. 

staypoz

[jennifer7]

Hi Mei Mei
I understand why you want to have the surgery quickly to end the pain but why does Dr Ducic want to schedule the surgery within the month?  That just seems so quick.  I don't want you in pain one day more than you have to be, not one minute more but would it help with your decision if you didn't feel the pressure of time in making your decision?

Good Luck with making your choice
Jennifer

[Captain Deb]

I had splitting, awful, mindnumbing headaches for 2 1/2 years after surgery, on a daily basis. At year 2 1/2 I started to get a little relief, whether it was from the meds, maybe about the 10th ones I tried, I have no idea. Gradually, the headaches came less often and somewhat less severe.  I went off the meds in favor of nerve blocks and then Botox.  Right now I'm going cold turkey off Botox just to see what my headache pattern is like.

I can tell you right now that given the option of having a numb head or living like I was living at year one, I would have taken the numb head.

Big difference between us Mei Mei, is that nothing showed up on my MRI that the docs could see was causing my pain--so I toughed it out. 

Why some of us end up with this headache phenomenon is the luck of the draw I guess.  For instance what I'm going through now--who ends up practically crippled from having a hysterectomy?  My low back pain in the morning is beyond belief--I wake up and lay in bed crying until the 2 Percoset I have to take 1/2 hour after I wake up kick in.  (I have to take my thyroid replacement when I first wake up on an empty stomach and wait 1/2 hour--that is a really loooong 1/2 hour)

I know Ducic is at the top of his field--what else are we supposed to do but trust the best?  Making life-altering medical decisions for yourself is a total *****.  We are here for you, my dearest one!!!

Hugs and more hugs,

Capt Deb

[Mei Mei]

Thank you, Deb.   I'm working on a letter to my Primary Care tonight with lots of links stating that cutting the nerve is not a good thing to do and that the nerve regenerates and forms dendrites.   Reading all this is making me really nervous.  I don't want to make a mistake.   Erin's doctor says he reserves severing a nerve for end of life situations.   Geez!   Dr. Ducic wants to do this.   My neurosurgeon said to listen to Dr. Ducic because he really knows what he is doing.   There is some study on the Aetna site about Dr. Ducic.   I will post it here somehow.
Mei Mei   

[Mei Mei]

Below is the letter I put together for my doctors and my Primary Care Dr. Li in DC:


I need some input from my doctors.  Please have them call me.
 I need to make a decision.


To      Dr. Theodore Li
From    Seroun Wang
Subject Surgery is being scheduled
Message

Dear Dr. Li,Yesterday I met with Dr. Ivica Ducic and was very happy
with meeting him.  He recommended an excision of three nerves:
Greater and Lesser Occipital and a third nerve off to the left towards
midline which I forget right now.   He wouldn't let me use a tape
recorder.   After leaving and telling my friends on the Acoustic
Neuroma Assoc.  online Forum, they had many questions which I didn't
think of.   I did ask him what about decompression and nerve ablation.
 He said no to the decompression and I don't know why.   The
conversation was moving too quickly.  He said that nerve ablation was
a waste of time.The questions coming up now are what happened to the
original question from the MRI of the entrapment of the Occipital
Nerve and C2 nerve (causing pain in my neck) and what is to be done
about the entrapment by the titanium mesh?The other question that
keeps coming up is that excision of the nerve on the blogs and in
quoted textbooks on Google Books show many problems after the surgery
as the nerves regenerate, grow dendrites and cause as stated by the
patients "excruciating pain".   This is the very surgery now being
scheduled for me and Dr. Ammerman said to listen to him because he is
the specialist in the fine area.   I am very nervous about this and
have below selected some of the information sent to me.   Please call
or write and let me know what you think I should do.   I've also
called Dr. Schlosberg my neurologist who followed me for four months
and my two surgeons at Hopkins:  Dr. Niparko and Dr. Tamargo and my
ENT - Dr. Feldman.Here are the links sent to me:


http://books.google.com/books?id=_iroSVcTaNIC&pg=PA89&lpg=PA89&dq=occipital+neurectomy&source=bl&ots=f_HqE-3mE-&sig=SOIulK8E-bxevXM_rI2VX_E9grc&hl=en&ei=OzU2TbvCOsSp8AbSqf3QCA&sa=X&oi=book_result&ct=result&resnum=9&ved=0CDAQ6AEwCDgK#v=onepage&q=occipital%20neurectomy&f=false

Dr. Ducic is mentioned here in a review of the literature:

http://www.aetna.com/cpb/medical/data/700_799/0707.html
Says may result in neuroma formation:

http://books.google.com/books?id=lg7sIgP9D3kC&pg=PA129&lpg=PA129&dq=excising+occipital+nerve&source=bl&ots=gddEZuUz5z&sig=K9TXko8IRZRBdsSX6xrfaZ1X5wg&hl=en&ei=n3

Dr Jho's C2 surgery in Pittsburgh

http://drjho.com/

I don't want to have more pain from regrowth that is reported here and
neuroma formation.



Thank you!
Sincerley,
Mei Mei

[Mei Mei]

Here is the doctor's response to my letter from last night:


Dear Ms. Wang,   I don't think there is absolute certainty prior to
the procedure that the pains will permanently stop.  But excision of
the three peripheral (greater and lesser occipital) nerves holds the
best chance of stopping the pain for at least a long time.   My guess
is that decompression is technically not feasible because the
compression appears to be related to the titanium mesh and not
amenable to adequate and safe decompression.  I agree that ablation is
not a good idea.  The cortisone injections in the area were
unsuccessful and that suggests ablation would not work.  And even if
ablation did stop the pain, the nerve tends to regenerate within 6-24
months.    I can't tell you what the likelihood of nerve regeneration
or neuroma formation is after excision of the peripheral nerves.  But
I believe the likelihood of pain recurrence is lower and would take
longer to happen.  I don't think the C2 nerve root is affected because
that is closer to the spine and below the level of the titanium mesh.
Also, when you are examined, the tenderness correlates with the
peripheral nerves - in particular the greater occipital nerve.  That's
why I had Eline call you to suggest seeing Dr. Ducic.   So I think the
peripheral nerve excision is the best option.TL

[bell]

Wowww Mei Mei,
You have your work cut out for you. I am so pleased that you found a physician that is actually looking further into your case. I think we all wait patiently for your outcome and we pray it is good. I am so impressed that you are so forward and well prepared for your physician, you have to be, and this will only increase your knowledge of what you are doing.  The best of luck in your decision.
I wait everyday to see if someone has been given the "miracle" cure for these headaches, but I really think it will be a life long challenge.
Bell

[Janet]

Hi Mei Mei,

Have you considered that the horrible pain you have been feeling since surgery is from already having the nerve cut or severely damaged? 

Janet

[Mei Mei]

Yes, Janet.   That is what Dr. Ducic told me that I was unfortunate to have these three nerves damaged during surgery.   He used i think the word "Unlucky" 

Here is his response to my questions this morning giving me 85 percent chance of success:

You can see MS Maureen Moriarty at Georgetown Neurology (202-444-2339) for nerve blocks
Please inform her you have no bone in the back, only titaniumm mesh so issue with injuection you had should not repeat itself.

PAtients whose nerve block was efeftive had higher succes of surgery thnn those without block response (this is true for any nerve related procedure)

Once nerve is cut, it is implanted so it would not regew in painfull neuroma, something internet "forgets" to teach people

Based on your presenattion, fell some 85%+ chance for you to be helped with surgery, but failure and continued pain nobody can exclude/guarantee not to happen

[Larry]

Mei Mei,

From a fellow headache sufferrer, I empathise with your predicament.

personally, I have now got a fear of surgery (even repair surgery) so i put up with the pain, but thats a personal choice. I do watch the outcomes of procedures to get rid of headaches such as janet's and the many attempts by Deb with interest.

reading this psot, I am getting a sense that you want the initial approach given to you as a solution and you want to go for it. However, following further research and comments from fellow posters, there are doubts lingering as to the initial very confident solution given to you. The more you ask and query the medicos the more information comes back your way. This can be good and bad.

Quite frankly, and remember that i have an aversion to surgery, I would do more research and perhaps even get a set of second opinions. The risks of them doing more damage to you appears to be increasing and the chance of success seems to be decreasing every time you ask pertinant questions.

I know you want the pain to stop but I'd hate you to go through all this and still have the pain.


laz

 

[Mei Mei]

Thanks Laz and Bell and Janet.   He did so well for Janet and Janet had her nerves cut and seems to be doing OK.   I wouldn't want to take Lyrica.  I took it for a month and didn't respond to it at all.   Right now I am taking Voltaren twice a day but it doesn't control the headaches.  I had another one in the middle of the night.  I asked my doctor about taking out the Titanium mesh since it is causing entrapment.   Here is his answer:
The titanium mesh needs to stay in place to create a protective cover over the surgical defect resulting from your acoustic neuroma surgery.  Also, scar tissue becomes intertwined with the mesh (as it is supposed to) to create a sturdy structure; it would be difficult to remove.  As I recall, the last nerve block went too deep and caused problems.  It's a tricky business administering the blocks in proximity to the mesh and no hard skull bone underneath.TL

Probably taking out the Titanium mesh might cause brain damage in the process.
Mei Mei