Author Topic: one year MRI shows C2 nerve and Occipital Nerve entrapment  (Read 59143 times)

Jim Scott

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Re: one year MRI shows C2 nerve and Occipital Nerve entrapment
« Reply #15 on: January 11, 2011, 01:11:10 pm »
Mei Mei ~

Thanks for letting us know about your very agreeable consultation with the sympathetic Dr. Perlmutter.  I'm so pleased to learn that your metaphorical 'light' is really growing brighter, after all.

BTW: the MRI techs I've dealt with always use the positioning procedures you've described (using head and knee wedges) so I assumed this was standard procedure, everywhere.  Apparently not - but at least now you know what to ask for should your next MRI tech neglect to position your head with wedges.  You have my best wishes for continued positive developments.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Mei Mei

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Re: one year MRI shows C2 nerve and Occipital Nerve entrapment
« Reply #16 on: January 11, 2011, 04:13:03 pm »
Thank you, Jim.   I am very hopeful now for a great and healthy 2011.   Yes, the light is getting brighter.  Hopefully I'll have to get out my sunglasses next week.
Take care,
Mei Mei   ;D
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Mei Mei

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Re: one year MRI shows C2 nerve and Occipital Nerve entrapment
« Reply #17 on: January 12, 2011, 07:39:49 pm »
Dr.  Ammerman this afternoon was wonderful.   I brought my laptop
because I couldn't print out my MRI reports...something's up with my
Dell upstairs and it won't send the print message...so I brought the
entire laptop to his office and he went over all the terminology in my
reports so that I could understand it better.   He showed me
everything in the x ray in my neck and brain that was of concern to
him and why I am getting pins and needles in my arm and hand.   He
said that the discs are misaligned from wear and you could see them on
the x ray.   I'd have to show you in person to see what I mean.   He
wants me to come back in six months to test my arms for strength and
wants me to call him when I get out of Dr. Ducic's appt next Tuesday.
 I said but isn't Dr. Ducic going to call you.  He said, yes, but I
want to hear from both of you.   What a sweetheart!   He said I want
you to have a much better 2011 than you had last year.   You have a
lot taking care of your father and you're a saint...etc.   He said Dr.
Ducic should do exploratory surgery to see if the occipital nerve
needs to be cut (ablation) or should he widen the area around the C2
and occipital nerves without cutting the occipital nerve.   I said
won't I need the Occipital nerve?  He said no, not at all and
especially if it was slightly damaged during the surgery.  It might
have been nicked during the surgery last year.   Today happens to be
my one year anniversary of the surgery for AN.  How ironic that I was
in his office still working out the problems on the anniversary.    I
asked if he would close up after the exploration and then have me back
the following week.   He said that would be between him and me.
There's so much going to be decided then.

He also felt badly that the C5-6 was taken when it didn't have to be
because the fact that two discs were taken instead of one back in 1988
by accident makes me have a stiffer neck and puts pressure and pain
below the neck where the C 6-7 was also fused.   We are all so connected.  He also said that there was scar tissue indicated by the radiologist and you could see on the MRI.  It is around the occipital nerve but you can't see things clearly enough on the MRI which is why he said it would probably be starting out as an exploratory surgery.  There is scar tissue he said because the body is reacting to this foreign thing in the (Titanium mesh) and doesn't like it and is irritated, thus the scar tissue.   No doctor has ever spent
this much time explaining so carefully to me.  It is always a pleasure
to see him.

Will update you more on Tuesday night when I get home from Dr. Ducic.   He is at Georgetown which concerns me because it is a teaching hospital and this is where my neurosurgeon back in 1988 let the resident operate on me and took the C 5-6 disc instead of the C 6-7 disc so now I have two levels fused instead of one and my neck is very stiff.

Talk with you friends soon.   I am so hopeful these days!
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

jennifer7

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Re: one year MRI shows C2 nerve and Occipital Nerve entrapment
« Reply #18 on: January 12, 2011, 08:51:08 pm »
Hi Mei Mei
I am so happy to hear about your progress.  It has been a painful year but I'm with you on making 2011 into a better one.
Last June I bought a water pillow from my chiropractor's office to help with my neck and I can't sleep without it now.  It supports my head and neck and cradles them wherever I move during the night.   It is made by chiroflow if you want to check out more info on it.

I hope you have continued blessings with your healing
Jennifer
retrosig 2/10/10 1.2cm
headaches, facial weakness, tinnitus
hearing preserved :)

Mei Mei

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Re: one year MRI shows C2 nerve and Occipital Nerve entrapment
« Reply #19 on: January 13, 2011, 08:02:58 am »
Dear Jennifer,
Thanks for the information on Chiroflow.   I used to have a water bed for many many years and after the third mattress and leaking I finally switched over to memory foam like Tempurpedic.   I have a Tempurpedic pillow but will try Chiroflow also.   My time in the MRI machine was so relaxing on Monday because of the wedge pillows to the neck and knees.   I felt like I just woke up from a full night's sleep which goes to show that my neck really needs something more.   Will let you know how Chiroflow does for me.
Thanks again!
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

staypoz

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Re: one year MRI shows C2 nerve and Occipital Nerve entrapment
« Reply #20 on: January 13, 2011, 08:38:35 am »
Mei Mei, good luck next week with Dr. Ducic.  If you decide to have surgery and G'town is a concern, I think he also has privileges at Sibley.  I encountered students there myself, but that was several years ago before they affiliated with Hopkins. 

staypoz

Mei Mei

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Re: one year MRI shows C2 nerve and Occipital Nerve entrapment
« Reply #21 on: January 13, 2011, 06:53:14 pm »
Thanks.  I was going to ask him about Sibley.  It is the only hospital I'll go to.   He also has an office in McLean.
It was a horrible experience back in 1988 having a resident operate on me and then the chief neurosurgeon told me the next morning that he saw a disc that needed to be taken out 4 or 5 years from then so he decided to do me a favor.   The anesthiologist told me the true story and I also read the real scenario on the Op Report.  He must have thought I couldn't read.  I was so angry.

Yes, I'm really very worried about going back to a teaching hospital, but then again, I went to Hopkins and that is also a teaching hospital.

I'm not looking forward to this, but am looking forward to a solution.
Hugs,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

richiea

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Re: one year MRI shows C2 nerve and Occipital Nerve entrapment
« Reply #22 on: January 14, 2011, 11:53:24 am »
you have been thruough so much.  i'll be thinking about you on the 18th.
Sally Richie   :)

Mei Mei

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Re: one year MRI shows C2 nerve and Occipital Nerve entrapment
« Reply #23 on: January 14, 2011, 02:40:30 pm »
Dear Sally,
You are so sweet and kind to say that.   Unfortunately, all of us here on the Forum have been through so much which is how we understand each other so completely.  It's something that binds us together in support of each other.
Hugs to you and to all,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

kraynok2

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Re: one year MRI shows C2 nerve and Occipital Nerve entrapment
« Reply #24 on: January 15, 2011, 08:25:34 pm »
Mei Mei, you have been through so much.  You are a courageous person.  Good luck on the 18th.  I will be thinking of you and praying for you.  Sandy

Mei Mei

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Re: one year MRI shows C2 nerve and Occipital Nerve entrapment
« Reply #25 on: January 16, 2011, 09:02:49 pm »
Dear Sandy,
Thank you for your compliments and empathy.  It's been a long road, but I feel closer to the end and am hopeful.   I think all of us on this Forum have had a difficult path to follow.  Having this Forum has been my saving grace.  I am grateful for any prayers and hope that Dr. Ducic has something to offer my pain.   Had another bad headache this afternoon while napping.   Lying down always does it.
Will be in touch with all of you on Tuesday when I get home from Georgetown.
Hugs,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Captain Deb

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Re: one year MRI shows C2 nerve and Occipital Nerve entrapment
« Reply #26 on: January 17, 2011, 07:50:16 pm »
Best, best, best of luck tomorrow, my dear friend, Mei Mei.  I will wear my pirate sox all day just for you and will be sending you good vibes and positive thoughts.  Go get CURED!!!!

Love xoxoxox

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Mei Mei

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Re: one year MRI shows C2 nerve and Occipital Nerve entrapment
« Reply #27 on: January 17, 2011, 11:03:00 pm »
Hey, Deb,

Thanks for the great wishes!   I'm so touched by all this fanfare.    I couldn't sleep because I'm so excited about tomorrow morning so I logged on to find this wonderful wish...go get cured.   I'll walk in there tomorrow carrying those words as my Mantra!

Hugs,
Mei Mei
PS   I love your little  Pirate!   How adorable!
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

yardtick

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Re: one year MRI shows C2 nerve and Occipital Nerve entrapment
« Reply #28 on: January 18, 2011, 01:02:53 am »
All the best Mei Mei

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Mei Mei

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Re: one year MRI shows C2 nerve and Occipital Nerve entrapment
« Reply #29 on: January 18, 2011, 11:01:08 am »
 ;D   Thank you all my friends!

I'm home and sending emails and calling everybody.  Dr. Ducic and his
residents were so nice.  He said the ablation is a waste of time and I
can't do a nerve decompression.   He said the retrosigmoid cut was not
in the usual way.   He said three nerves were damaged during the
surgery and he has to schedule to cut these three nerves:  Greater and
Lesser Occiptal and another the name of which I forget right now...it
is over to the left in the middle.   His nurse wasn't at work yet
because of the ice storm but she will call me to schedule when she
gets in.   The sooner the better to get rid of all this horrific pain.
 He said he wants it done within the month.

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh