ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: Mei Mei on January 03, 2011, 01:31:33 pm
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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you have been thruough so much. i'll be thinking about you on the 18th.
Sally Richie :)
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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
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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
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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
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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(http://i235.photobucket.com/albums/ee60/Captdeb_photos/panda22.gif)
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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!
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All the best Mei Mei
Anne Marie
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;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
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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
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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
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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
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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
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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
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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
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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
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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 >:(
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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
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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
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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
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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
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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
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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
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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
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Here is a link from Aetna.com that has a review of the literature on the topic. It was sent by Erin. There is a review of several of the doctors including Dr. Ducic.
http://www.aetna.com/cpb/medical/data/700_799/0707.html
Mei Mei
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Mei Mei,
Many of us were given options to choose from for the treatment of our AN and had to choose among them; you are now having to do the same thing about the treatment of your head pain. While it's good to do due diligence, at some point you reach information overload and that gets you nowhere. Whatever you decide will be the right decision for you.
staypoz
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Thanks, StayPoz! I'm still waiting for some input from my doctors and some other doctors. Have been out all day and none of them have written. These things move slowly. Saw a movie this afternoon with a friend: Made in Dagenham
I highly recommend it. It's very uplifting and a break from our worries and woes.
Hope to see you tomorrow morning.
Mei Mei
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Here is yet another lit. review by United Healthcare. They didn't review Dr. Ducic as Aetna did.
https://www.unitedhealthcareonline.com/ccmcontent/ProviderII/UHC/en-US/Assets/ProviderStaticFiles/ProviderStaticFilesPdf/Tools%20and%20Resources/Policies%20and%20Protocols/Medical%20Policies/Medical%20Policies/Occipital_Neuralgia_and_Cervicogenic_Headache.pdf
Dr. Niparko called an left a message of concern on my cellphone. I was so surprised. This is the first time he ever called me. He said he would call today.
Mei Mei
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Hi Mei Mei,
Look on page 6 paragraph 5. You will find Dr Ducic's study results. Thanks for posting insurance reviews. It is a handy way to compare studies.
Janet
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Thanks for pointing this out to me. I must be getting cross eyed from researching all this stuff. It's the same study on Aetna showing 12 patients have both nerves cut. Did you have both nerves cut? He is suggesting three nerves to cut for me.
MMA retrospective chart review was conducted to identify 206 consecutive patients undergoing
neurolysis of the greater or, less commonly, excision of the greater and/or lesser occipital nerves.
Of 206 patients, 190 underwent greater occipital nerve neurolysis (171 bilateral). Twelve patients
underwent greater and lesser occipital nerve excision, whereas four underwent lesser occipital
nerve excision alone. The investigators found that 80.5% of patients experienced at least 50%
pain relief and 43.4% of patients experienced complete relief of headache. Minimum duration of
follow-up was 12 months. (Ducic et al., 2009)
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Wow,
Info overload, it does take time to properly analyse this stuff but very useful.
Mei Mei, whilst taking Voltaren, make sure you take a stomach med like Losec otherwise prolonged use of Voltaren will cause an ulcer.
laz
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Yes, Mei Mei. I did have the nerves cut. I am not one of the patients in Ducic's study. The study was completed, before I sought his help.
Janet
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Dr. Niparko finally called and I was so happy to talk with him. He was against the surgery and wants to see me. His secretary called and gave me an appointment for next Friday at noon and 2 pm for Dr. Tamargo. He asked who said the nerve is entrapped and I said the radiologist and the Neurosurgeon Dr. Ammerman. I also said my neck hurts and he said he would rather take out the Titanium mesh than cut the nerves. He said they have never had to do this at Hopkins before. I told him that Dr. Ducic told he he has done this surgery on Hopkins patients before. He said this was very irresponsible for him to talk like this and he wants names of these patients. Tell him to give you the names. I said I can't do that; it is private. You need to call him and talk with him about it and get the names from him directly. He said again this has never happened to Hopkins patients and I'd like to see you. We can take out the Titanium mesh if your neck is hurting you. I said my primary care said that can't be done and your brain needs the protection and I replied who would do it. He said he would and it is an outpatient procedure and that the bone has begun to grow back. He also said the cutting of the nerves is a big procedure and I said the doctor said it is a two hour out patient procedure.
Now who to believe? Is is a difficult procedure? Do I take out the mesh that is entrapping the nerves? Are the nerves permanently damaged and should I try to take out the mesh and then cut the nerves six months later should taking out the mesh not be enough? At least I'm doing my homework, but the bottom line is that I have to make the decision and I'm not a doctor. I don't know where to start. My gut instinct is to go with Niparko and take out the mesh first and continue taking the Nortryptolene as needed and discontinue the Voltaren.
Anyway, that is the update.
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Wow, Mei Mei. Dueling doctors! Ducic told me he had operated on Hopkins patients also, fyi. It surely can't hurt to see Niparko and Tamargo again since they did the original surgery. I will be interested to hear why they think it's the titanium plate that's the problem. Good luck and keep us posted.
staypoz
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I know. What do you do with dueling doctors? I'm not a doctor? I don't know who to believe. Dr. Li, Dr. Ammerman and Dr. Ducic think I should cut the nerves because they are damaged. Dr. Niparko is concerned about Dr. Ducic fixing Hopkins patients and he has never heard of him before. I didn't want to get in the middle. How would I know the names. He said to get the list of names for him. I can't do that. There are privacy laws. They had better handle it with each other. I'm going to Gtown at 2 for another nerve block and have switched to Nortryptolene.
I'd rather try taking out the mesh and seeing if that works and go for the excision with Ducic if all else fails.
Dr. Niparko told me to try yoga which I am already doing and he said the headaches will go away in time, but people in our local group have had them as much as 10 years. I'm in year one going on two and don't want to go to ten.
Hugs,
Mei Mei
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Hi Mei Mei: I'd go with Dr. Niparko on this one too - sounds alot easier to remove the mesh & see what happens then 'cut' the nerves. Good luck with the appts. tomorrow.
Always good thoughts, Nancy
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Oh wow Mei Mei I can't believe his assistant would say that. It would definitely make me reconsider my opinion of a doctor if his assistant doubts whether he'd remember to show for surgery.
Go enjoy dinner, let your blood pressure and headache relax and think about all of this tomorrow.
Sorry you couldn't get the block and I hope your appt with the Hopkins drs goes MUCH better tomorrow.
Jennifer
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Mei Mei,
Damn I feel so terrible for you!!! I hope your dinner out with your father for Chinese New Year was what you needed to lower your blood pressure and pulse. Happy New Year to you and your family. Speaking of family, do you know Diane Morrison on facebook is my cousin? She lives in Michigan and had surgery in the fall trigeminal neuralgia.
Anne Marie
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I didn't take him. He was so happy in bed, but we are taking him at noon today. I hope he likes it. He's just so happy to be here concentrating on his Soduko puzzle in the newspaper.
Diane Morrison...I didn't know. Did she have an AN too? How did she get the neuralgia?
By the way, I really loved the workup in the Georgetown Neurology Dept. They were the first people of all to worry about my drug interactions and lowered the Cymbalta, eliminated the Alleve and added Indomethcin. They were worried I'd get Serotonin Syndrome and end up in the ICU. It's really serious and all of us here on the Forum should be aware of this. I looked it up on the internet and we should demand that the docs pay attention to the drug interactions. I've seen about a dozen doctors and given them a list of my drugs and these were the first people to be genuinely concerned about Serotonin Syndrome.
I'll look up Diane on FB and send her a message.
Mei Mei
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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!
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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
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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
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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 :)
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(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
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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 :)
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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
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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
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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
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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
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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
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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? :o
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;D 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
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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
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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
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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. ;)
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:) 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
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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
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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
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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
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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
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Mei Mei, I agree with Larry.
Sending you every good wish that you find the relief you deserve!
staypoz
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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
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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
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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