one year MRI shows C2 nerve and Occipital Nerve entrapment

[Mei Mei]

Hi!  I got a message from my primary care to go and see Dr. Ducic.
He said that MRI reports show an opportunity for entrapment by the
Titanium mesh of the occipital nerve and C2.  At least I don't have
tumor regrowth.  It's a blessing.
I dropped off the CDs at the Neurosurgeon but forgot to bring the x
ray from Monday.  The neurosurgeon should call this afternoon after
looking at the MRIs.   I don't know if I have to really go back and
see him unless he wants to address the cervical stenosis and give an epidural
for that.   It will be interesting to see what he has to recommend.
More later.   Wish I knew this sooner.   Famous last words!
Mei Mei

[Mei Mei]

Just got a phone call from the Neurosurgeon who said that the MRI shows a neuroma.   I'm so glad I finally have a diagnosis and some direction.   Now what to do about the neuroma.   He of course wants me to go to Dr. Ducic.  I wrote to Janet a few times and she's doing well after her two surgeries with him which is a plus.   I'm not going to get up hope but I feel some light at the end of the tunnel.   Had another killer headache last night, but here's hoping there's an end to them!
Mei Mei

[Jim Scott]

Mei Mei ~

Although I have trouble with the concept of congratulating you on having a neuroma, I'm pleased to learn that you're getting some answers and are on track to finally obtain relief from the headaches you've been suffering with for so long.  I trust that 'light at the end of the tunnel' will grow brighter for you in the days and weeks ahead. 

Jim

[Mei Mei]

Thank you, Jim.   I too have trouble finding out that it is another neuroma, but at least there is a solution after almost a year spent trying so many drugs with upsetting side effects.   Thank you for your kind words.   I will think of the light getting brighter.  That was such a lovely thought.

Mei Mei

[Tod]

Gee whiz, Mei Mei, I am with Jim on this. Really tough to say I'm glad you found the cause at last, but another neuroma? Seems unfair, to say the least. Anything that can help end the headaches, has got to be the right way to go.

-Tod

[Mei Mei]

True, Tod.   I won the lottery on neuromas.   Hope that's it for awhile!   Feel at peace that I have a diagnosis at last so we can stop fooling around.

Mei Mei

[cin605]

Holy ^&^% MeiMie.
So all this time you figure out that all the pain and suffering is all in your head....
Now....is this left over neuroma?or a whole new one?
Grr...Call Me!
Hugs!Cindy

[Mei Mei]

Very funny, Cindy.  Yes it's all in my head and everybody else's on this forum.  I don't know.  I have to wait and hear from the doctor when I see him on the 18th.  I feel good to know now what is wrong with me instead of playing around in the dark with all those medicines I tried for five months with the neurologist.   Will keep you updated as to what I hear.

Sincerely,
Mei Mei

[Captain Deb]

Yeay--it isso great when you get a REAL diagnisis instead of a "guess" when dealling with these brainwrecks..
 Ducic is the man ti see ti free upthat occipital nerve and give you relief!!!

Good Luck and thanks for thinking for me and Eric.

Love,

Deb

[Mei Mei]

Yes, I'm looking forward to freeing up the nerves.   It was my pleasure to think of you and Eric.   We here all care for each other.   You will never be alone!
Mei Mei

[bell]

Mei Mei,
I am so sorry to hear of your neuroma, how much can we take. I wish you many prayers and thought to figure this out. From one headache sufferer to another I hope you find relief. The 18th will come soon I am sure it seems like forever, keep positive.  Hope you have found a good neorosurgeon and neurologists.
Bell

[Mei Mei]

Dear Bel,
Thank you so much for your caring wishes.   They mean so much to me to keep hanging in.  I'm having another MRI tomorrow.  The radiologist wrote a note that having the MRIs of the head and neck left a gap of vision connecting the head and neck and he would do that at no extra charge.   People are really coming around for me.

I also see the Rheumatologist tomorrow morning to follow up on two weeks ago for the Voltaren RX he gave me.  I don't like its side effects in that it damages the heart.   My neck has been in extreme pain all weekend and now I can't sleep with it.   Nothing calms it down.   I have ice on it right now.

Had a titration sleep study on Friday night with a mask as a followup to the study I had done on Dec 8th.   that said I have mod. to severe sleep apnea.   This apnea also causes cluster headaches.

My neurologist just gave me all kinds of drugs none of which worked and had horrific side effects and withdrawal.   The new neurosurgeon ordered the MRIs that showed the real problem.  It's nice to have a diagnosis besides a headache...It's nice to know what's causing the headache so I can have some direction in my treatment.

Will try to sleep now.   Take care and sleep well....
Mei Mei

[tenai98]

Wow Mei Mei
I sure hope you do find relief in all of this....you have been thru alot.  Prayers going out your way
JO

[Mei Mei]

Thank you, Jo.
I am grateful for the kind prayers and I for all of us do pray.
I saw the rheumatologist this morning and he is continuing me on Voltaren 75 twice a day and started PT for neck and head twice a week.   I noticed on the RX that it has Parrafin treatment which sounds nice.
I am gettting an additional MRI this afternoon because the radiologist offered at no cost to me to do a study of the sub Occipital area connecting the head with the neck.
Will keep you informed.
Sincerely,
Mei Mei

[Mei Mei]

I got the MRI today but had to wait around for an hour and a half
because I went across the hall to make a follow up appt with the Sleep
Study doctor which coincidentally is on the same floor as my
radiologist.   I  got back to the MRI place and they called the next
patient even thought the secretary told me it was OK to go.   Anyway I
sat around Starbucks for awhile and read your email and some others.

It was a very touching and validating experience today for the first
time at a radiologist's office.   We never really ever get to have a
patient doctor relationship with a radiologist and Dr. Perlmutter was
the first one who ever wanted to speak with me.   After the MRI he had
me back into his office and thanked me for returning to do the extra
study that he requested on the last two reports of the head and neck.
 He had said he wanted to do the area between the head and neck (sub
occipital) to make the study more complete.  He also said he could
tell from the studies how much I've been suffering and that "it's all
probably driving you pretty crazy, isn't it?"   I couldn't believe my
ears and was just so thankful for him taking the time to care and
express this to me.   He actually noticed what's been driving me crazy
since last January.   He also said since my MRIs on 12/28 he's been
researching this on the internet and trying to find what kinds of
studies he can do to best help me.   He said when he got the RX he
knew this was a very unusual study and wanted to do well by me.  He
also said the techs didn't actually know how to proceed because this
was so unusual.    He asked if I still had my hearing and if I were
trying nerve blocks.   I explained to him the background and what
happened in Cleveland.   He took Dr. Ducic's name and said he would
also send a report to him and look up his procedure on the Georgetown
website.

I told him I didn't think my headaches with the Titanium mesh are that
unusual since I chat daily with people that have them on the ANAUSA
Forum and he said he would look into it.

I left there with a totally wonderful feeling of support from another
dimension of the medical community and knowing that you are also
interested and care about my outcome as well.   It's been a long
journey and there's more to come, but I've met so many nice people
along the way.

Another thing that happened is that the tech stuck wedges on both
sides of my head so that my head wouldn't move at all and put a foam
wedge beneath my knees.   I was totally immobile in the MRI tube and
it felt so comfortable that I almost fell asleep.   When I got out, I
was totally refreshed and felt as if I had slept a great uninterrupted
10 hours sleep when it was only 20 minutes.   I think I'm going to
wear my neck collar tonight and put my foam wedge under my knees
tonight to duplicate this afternoon's situation.

Looking forward to getting the report for this one as well.
Take care all of you and good night!
Mei Mei