Surgical Solution

[Captain Deb]

Just to expand on Janet's quest for a solution to her headaches and her trip to Georgetown and appt with Dr Ducic and upcoming appointment in February I've been researching a few things and have come up with some interesting information on cervicogenic headaches:
http://scholar.google.com/scholar?hl=en&rls=GGIC,GGIC:1970--2,GGIC:en&q=author:%22Jansen%22+intitle:%22Surgical+treatment+of+non-responsive+cervicogenic+headache.%22+&um=1&ie=UTF-8&oi=scholarr

and thishttp://www.springerlink.com/content/w8l0g41t3v1511r6/

http://www.neurosurgery-online.com/pt/re/neurosurg/abstract.00006123-199607000-00014.htm;jsessionid=HpCMq9hy8tWnrYBMlG1TvPvk8T8T2jMZ4VYNbyZM3nD6BmRCGkyd!1609592453!181195628!8091!-1

http://www.jaoa.org/cgi/content/full/105/4_suppl/16S

Symptoms sound familiar to anyone?

Capt Deb

[ppearl214]

interesting links, Capt'n.  Thanks for sharing. I read the Springerlink with total facination.  Doesn't apply to me but hoping that others here may find answers with the links you shared!

Great job, Capt'n! 

Phyl

[Captain Deb]

And here's another link to the Biondi article with a better view of the headers:

http://www.painmanagementrounds.org/crus/painmgt_08.pdf

Capt Deb

[Captain Deb]

Got my neck MRI finally and before the 1st so my ins co finally actually paid for something for a change. They haven't paid for any of my Topamax or Imitrex since May!  I see a spine specialist on Jan 11 to check out cervicogenic possibilities as one possible origin of my headaches. Even though they have dissipated in intensity and frequency considerably , it has taken them 5 years to do so. I am still seeking out the source in hopes that others may be spared the pain, loss of income, depression, suicidal thinking, medical expenses, and downright grief I went through for so long. Wish me luck!

Capt Deb

[trhoads]

Captain Deb,

Are you really going to a spine clinic for the evaluation of cervicogenic headaches??  I am currently seeing a doctor at a spine clinic, and was thinking about looking into a referral to a headache clinic.  But maybe I should just print off the information and take it to the spine clinic at my next appointment. 

What do you think? Any advice would be very helpful.

Tonya

[Janet]

Tonya and all,

I've been fighting headaches since April 2004. The following is info that I learned from seeing different doctors that offer different treatments. Different specialties can do different things but are limited to treat within their scope. Ultimately, you are the consumer and are in charge.  It takes patience, trial and error, educating yourself and a willingness to do whatever it takes. (That includes taking on debt, if needed!)

I've highlighted diagnosis and treatment offered from different specialties that I have been to.

I have been to a headache neurologist and my headaches have been fairly successfully treated with Indomethacin, Botox and Maxalt. The symptoms are being treated but whatever the cause of the headaches is not being treated. As soon as I stop taking the medication the headaches are back in full force. I can't take these medcations forever. My doctor at the headache clinic thinks it is migraine triggered by the occipital nerve. Hemicrania continua describes how my headaches feel. Concern of long term use of Indomethacin forces me to keep looking. (Tried 2 anti-seizure meds which didn't touch the headaches and took away my energy.)

Last week I went to a pain clinic and had an occipital nerve block. I had total relief from pain and pressure for 2 days. I did not take any medication during the 2 days. It was heaven and I felt like 20 years old! The doctor speculated the pain originates from the occipital nerve at the facet joint. The instant relief from the block showed that it is the occipital nerve, but where the exact problem starts is still in question. They have proceedures to treat this that included nerve stimulators and ablation of the nerve. This shows how the different specialties have a very different approachs.  He thinks it is from the neck position during surgery.

My neurosurgeon couldn't offer an explaination but warned against touching the occipital nerve as some proceedures can worsen it. I had a normal neck MRI.

I went to a peripheral nerve surgeon from the plastic surgery department (across country) who seems to be successful in treating occipital neuralgia by making more room around the nerve so it isn't being constantly irritated. He doesn't touch the nerve only structures around it. He won't make you worse and has an 80% rate of making you better to varying degrees. I also have an obvious scar neuroma from the lesser occipital nerve at my suture line that he could fix with a different proceedure. His surgery doesn't burn any bridges, so if this didn't work, you could still have something else done down the road. He works closely with a headache neurologist.

Personally, my symptoms seem to resemble occipital neuralgia rather than cerviogenic. I don't feel comfortable touching the occipital nerve without reassurance they won't make it worse. I think at this point ,the surgery offers the most to gain and the least to lose. I'ts still a crap shoot!

Any thoughts?

Hope this helps,
Take Care, Janet

[Captain Deb]

My headaches are accompanied by intense neck pain and the migraines I get rather frequently are preceded by several days of excrutiating and debilitating neck pain, so why not? I've been searching for the source of these buggers for 5 years.
Oh, by the way, folks, I had by appt and he spotted a possible Chiari I malformation which I am really doubtful about considering all the previous MRIs I've had for the AN--I mean how could that have been missed before. However, I have had neck problems and headaches for years prior to surgery, but NUTHIN like I have now, and I do have leg weakness, but that's just from being out of shape because I can't get in shape because I get a flipping headache just from taking a walk.

So I guess I'll get more poking and prodding and depleting of the bank account due to huge deductible. Yay! So I got referred back to my good old original neurologist I've had for 5 years. Poor guy, I've been his most challenging patient. I'm waiting for him to refer me to the psychiatrist next because I just must be nuts, right?

Capt Deb

[trhoads]

Captain Deb and Janet,

Thank you for the information.  So far, I have read the information on the cervicogenic headaches, but I need to look up occipital neuralgia.  However, I too was told that all the neck pain is from the positioning during the surgery, and that I need to "give it time."  (But is has been 8 1/2 months, and I am running out of money trying to treat the pain.)  The pain is at the top of my spine/base of my skull, and at varying times, I have shooting pain up the back of my head.  That is in addition to when I also get a headache.  But whether or not I have a headache, I ALWAYS have the pain in my neck and base of my skull. 

I've been to a spine specialist, who also ordered a MRI of the neck, which showed a buldging disc between C6 and C7, but all of my pain is much higher than that.  The doctor thinks that the buldging disc is most likely from pulling due to the neck spasms.  About 10 days ago that doctor injected the top of my neck with some cortisone and lidocaine, but I have not felt any relief from that at all.  But I honestly do not know if it was just into the muscle to help stop the spasms, or if he did a nerve block--I will have to call and ask. 

I have yet to get a referral to a headache clinic and/or neurologist.  I am pretty much done with the neurosurgeon since he does not even try to help at all.  As listed above, I keep getting "give it time."  Janet, do you mind me asking you who/where is the peripheral nerve surgeon that you talked to?  I live in Albuquerque, NM.

Captain Deb, I can relate with the inability to do any form of exercise, other than a casual stroll.  If I try to walk fast to get a little more of a workout, I get a bad headache.  I can barely make it through my 36 hours/week of work--which is why I am trying to find some help before I do serious damage to my stomach, kidneys, liver, etc. from all the drugs (mostly Ibuprofen/Motrin).  And I have only been going through this for almost 9 months.  If this continues to last forever, I will be in a mental institution!!

Thank you so much for all the info,

Tonya

[Janet]

The occipital nerve decompression surgery I mentioned in my last post is at Georgetown University in Washington DC. The doctor is I Ducic. If you Google Georgetown Ducic Occipital you'll find it.

Janet

[Captain Deb]

Tonya,
There is an Albuquerque Pain and Headache Center here:
http://maps.google.com/maps?sourceid=navclient-ff&ie=UTF-8&rls=GGIC,GGIC:1970--2,GGIC:en&um=1&q=headache+clinic&near=Albuquerque,+NM&fb=1&view=text&latlng=35144872,-106583080,13216837360900363870

I didn't find a website, only this address.

Capt Deb

[Captain Deb]

My headaches are accompanied by intense neck pain and the migraines I get rather frequently are preceded by several days of excrutiating and debilitating neck pain, so why not? I've been searching for the source of these buggers for 5 years.
Oh, by the way, folks, I had by appt and he spotted a possible Chiari I malformation which I am really doubtful about considering all the previous MRIs I've had for the AN--I mean how could that have been missed before. However, I have had neck problems and headaches for years prior to surgery, but NUTHIN like I have now, and I do have leg weakness, but that's just from being out of shape because I can't get in shape because I get a flipping headache just from taking a walk.

So I guess I'll get more poking and prodding and depleting of the bank account due to huge deductible. Yay! So I got referred back to my good old original neurologist I've had for 5 years. Poor guy, I've been his most challenging patient. I'm waiting for him to refer me to the psychiatrist next because I just must be nuts, right?

Capt Deb

OK now I'm quoting myself! Just to reassure anyone who's following this thread, this spine doc was way off base with his Chiari I diagnosis, according to my local neuro. What is up with these docs? Another confliction diagnosis in the wonderful world of medicine!  Where is Dr House (from the TV show) when you need him?

Capt Deb

[ppearl214]

you KNOW how I feel about the lack of Chiari 1 diagnosis... 

xoxoxoxooxoxoxoxoxxoxoxooxxo and all that good stuff.
Phyl