one year MRI shows C2 nerve and Occipital Nerve entrapment

[Denise S]

Mei Mei, I am SOOO sorry what you are going through.   It has to be so extra hard when you have doctors not agreeing on things.  It's like where to start??  UGH? 

 I can undserstand some of what you are going through.   I still have chronic pain.   Mine is NOT on the side of my tumor surgical side and the Chiari specialist center I seen isn't totally convinced it is due to the Chiari (which is actually a great thing).   Head & Neck pain is very, very tricky though!!       Like that specialist told me:    The base of the skull opening is the 'housing' to where the brainstem falls,  starting the spinal cord and ALL of the beginning to the main parts of our nerves.  (then there are little fibers from that)   Sometimes it is soooo hard to see what is really going in there until a neurosurgeon really gets in there.  MRIs, etc. can only see so much and so deep and around so much, etc.  OH...and NOOO this doctor did NOT want to cut me open  He is very converservative, unless he feels it is at that point.   I do feel he gave a good point though explaining why I keep getting a variety of 'diagnosis' for my base of skull and neck pain {don't forget all, I had Middle fossa surgery and this is on the Opposite side of surgical side....but started right after surgery.....weird?

I just wanted to let you know I am here thinking of you!!  Hopefully you can soon get some kind of an answer that you can feel at peace with!!

Take care,  Denise

@Jennifer...I am the one with Chiari Malformation, from Ludington, MI....we PM'd back months ago.   

[Mei Mei]

    Dear Denise,
Thank you for all the kind supportive thoughts.  I has been especially difficult for the last two weeks or so when I started talking to my original surgeon and he didn't agree with the surgery proposed for Feb 16th.   We cancelled it and now I've found a great nurse practitioner in Neurology Dept at Georgetown who is taking really good care of me.   She is going to write to all the doctors and ask them to write her an email of their recommendations and then she and I will figure it out once she's collected all the thoughts of the doctors involved.   My aunt's friend says to take out the mesh and wait and then cut the nerve if things still hurt.  I'm glad I finally have an advocate in the community that can find me help.

I am also going to see Dr. Francomano in Baltimore.   She is a geneticist and I am seeing her for my Ehlers Danlos Syndrome.   The only reason I am bringing her up is that she also has a specialty in Chiari.   You have to fill out this long 32 page questionnaire and it takes her a month to get back to you and let you know if you are suitable for her practice.   Let me know if you want to visit her.


I'm just feeling badly today for the Congresswoman  rehabbing in Houston.   I doubt very much whether she can go back to Congress.   I'm in much better shape than she is and have to remind myself of that   It could always be worse.   I'm thinking a lot about her.....and my AN friends.

Mei Mei

[Larry]

Mei Mei,

Without trying to pressure you in any direction, I think you have made the right decision to defer at this point. The conflicting and changing nature of the medicos decisions was a concern to me. This is not like preparing a set of accounts and then finding an error which is easy to fix. This is your health and one thing that most of the experienced posters here have learned is to research, research and research. As tiring and frustrating as it must be for you, you have to go into surgery convinced its the right thing to do and when in doubt - DON'T.

I'm sure it will work out for you


laz

[Mei Mei]

Well I've been to three neurosurgeons and they all say cutting the nerve is easier than taking out the mesh.  The plastic surgeon and the neurosurgeons explained that the brain, scar tissue and dura have grown together with the mesh and that taking it out at this point is a problem.
Regarding the Myofacial Release Therapy that I've been having for the last two weeks...it's great!   I  am getting a lot of relief.   The first week made me uncontrollably sleepy.   The second week this didn't happen and they were more aggressive since they got a lot of the knots out of my neck.   Michael and Scott felt the C2 nerve entrapped by the scar tissue (adhesions) and were working hard to get them loose.   I felt really numb this time from those sessions and got a horrific headache in the middle of the night both times last week but the lump is disappearing in the neck.   I think I sent you a post on Myofacial release with the picture of the guy that is famous for it.   Michael called to reschedule my Monday appointment and I couldn't make his times.   Then I came in on Tuesday for an appointment with Scott at 10:45 and it was really at 10:30.   I got it confused with my doctor appointment in the afternoon at 1:45 so I haven't had any Myofacial therapy this week at all and am missing it.   I am going to another place for frozen shoulder therapy and that's helping too.   

It's a long hard road as Janet has said and many of us here all know.   My Sleep Apnea doctor recommended not taking out the mesh and to go see another neurosurgeon that she sends her own family to.   His name is Dr. Fred Schwartz in Chevy Chase and he did an acoustic neuroma the day before.   He, like Dr. Friedman in HEI recommended Middle Fossa and NOT the retrosigmoid that I had for the small tumor.   He repeated there are more headaches with retrosigmoid and said he would open up my incision and line it to protect the brain from the Dura.   He said this is an old procedure and has been done since WWII.    Dr. Friedman at HEI said he has little experience with headaches and that's why he recommended the Middle Fossa for me.   Well it's water over the dam.   Everybody except Dr. N is recommending the cutting of the three nerves.   Saw Dr. Ducic yesterday and we are now rescheduling the excision surgery.   I'm waiting for a call from his nurse to schedule it.

Take care all,
Mei Mei

[Larry]

Mei mei,

Lets hope this decision is the right one but the big thing here is that you have multiple opinions that are recommending this treatment so you can move forward positively knowing that you did the research and didn't knee jerk to the first view offerred you.

I'm sure it will go well.


Laz

[Mei Mei]

Thanks, Larry ....  I am feeling good about things.   Just waiting for the call to tell me about the date.

One day I will visit down under and get to meet you.
Sincerely,
Mei Mei

[staypoz]

Mei Mei, I agree with Larry.

Sending you every good wish that you find the relief you deserve!

staypoz

[Mei Mei]

I thought I had better post here as well since the topic is entrapment.   My doctor who did the excision surgery said that when he opened up he found my nerve completely entrapped in scar tissue so he had to work on that before he could isolate and do the excision and then implant the nerve endings into the muscle.   He said all that scar tissue was what was making the horrific headaches.   The cleanup and excision only took two hours so if you can find someone near you that does this in a plastic surgery dept, then by all means go ahead.

My accupuncturist was saying it was scar tissue that was causing the problem and opening me up proved him right!   I'm so happy I have a great team!
Mei Mei

[Janet]

Hi Mei Mei,

I agree. I would add, that finding an experienced surgeon is important. Much like finding and experienced AN surgeon provides better outcomes, I believe the same to be true about surgeons doing peripheral nerve surgery.

I traveled across the US for Dr Ducic's expertise. I could not find anyone else that has done so much research on post-op surgical nerve pain and surgical experience.

Last month, I was contacted by one of the Fellows at Georgetown University. They are specifically gathering information on AN patients that have had nerve repair and scar revisions because of headaches suffered after AN surgery. It is encouraging to know that someone is taking an interest in this very specific problelm. I am happy to say that I gave a lot of positive feedback.

Janet

[jennifer7]

This sounds like what I am going to have done.  The Dr said he is going to remove the scar tissue and wrap the nerve in fascia, possibly cutting the nerve, it will depend on what it looks like when he gets in there.  Along with that he is adding a layer of cushion between my dura and muscle.  I hope it is as successful for me as it has been for you guys!!
It is so encouraging to read that you have had something similar and it has helped so much, the Dr I am having is very experienced so I feel comfortable with him.  Now I'm starting to get a little excited about it (just a little I'm still terrified of surgery).
Jennifer