Capt Deb's research file

[Captain Deb]

Hi folks,

In accordance with the agreement I made with my new pain doc, Dr Mark Hines, I am doing research on the various therapies he has recommended.  I might as well save them here as on my private computer.  These are the papers/websites I am looking at regarding ridding myself of the head pain I have been experiencing for the past 8 years.

First one--on pulsed radiofrequency ablation of the greater occipital nerve for occipital neuralgia:

http://asra.com/display_fall_2007.php?id=14

Notice the patient is an acoustic neuroma patient!

Capt Deb

[Captain Deb]

Another on radiofrequency ablation--this is an option for my sacroiliac pain as well.

http://www.medcentral.org/body.cfm?id=352

Capt Deb

[cin605]

I am going for the radiofrequency ablasion November 10th...they say it could take five weks to work but hey whats five weeks when i been suffering for 2 1/2 years!
Also on new muscle relaxer Tisanidine

[staypoz]

Capt Deb and cin605:  i have heard that the nerves can regenerate after the procedure and that the pain can return.  What have you both learned in your research? 

staypoz

[Lizard]

Capt Deb,
Thanks so much for posting, I'm again at a dead end with my treatment and I'm seeing the headache specialist tomorrow.  I will mention both of these articles as well as the other research I've done on scar neuromas.  Keep em coming : )
Liz

[Captain Deb]

Capt Deb and cin605:  i have heard that the nerves can regenerate after the procedure and that the pain can return.  What have you both learned in your research?  

staypoz

Yes they can and the procedure may be repeated and "tweaked" in a few weeks if they don't get all of the painful part of the nerve the first time.  It is not a permanent fix and can last from 4 to 16 (?) months. However with some people it lasts even longer.

Capt Deb

[cin605]

My Dr. informed me of this also but atthis point any relief is good relief no matter how long....if i can have a life for 3-12 months i will take it....Like captain Deb said they can do a reapeat after it wears off.Lets all say our prayers now.....

[Captain Deb]

I may see if I can get a "twofer" for this procedure on both my sacroiliac and occipital nerves.  May feel like being in the Spanish Inquisition torture chamber,  but HEY! I had 5 days with a chest tube--I am one tough wench and can stand just about anything as long as they give me a little happy juice first! Zap! Zap!

Capt Deb

[Kathy M]

I've got a medicine cabinet full for whatever ails me - better living thru chemistry!!!! Love your attitude, Deb!!!!!

[cin605]

My Dr said i will be sedated for the proceedure....temporary abnesia...the drug is called Versad.Very strange...but if i can not recall the pain i guess thats good!

[Captain Deb]

I saw my wonderful new GP today and presented her with the written up treatment plan from Dr Hines.  She herself had a facet nerve ablation in her lumbar spine (Mine may be in cervical 2-3).--she said her pain went away and has never returned and that was 2 years ago.  She also says I should get my head fixed first, because a bad headache is more intolerable than just about anything.  I'm calling tomorrow to set up an appt and get this show on the road.  I sure wish I had done this 7 years ago!!  $5000 deductible insurance and unable to work is one reason. Hopefully I'll get to be the guinea pig for the rest of us with neck/occipital pain that leads to brainwrecks!

Hugs,

Capt Deb

[Captain Deb]

Paper on C2-C3 dorsal rhizotomy, another alternative.  Note the allusion to patients who had previous skull base surgery:

http://www.ncbi.nlm.nih.gov/pubmed/14625243

Capt Deb

[staypoz]

Keep us posted, Capt Deb.  I hope it works for you!!

Just this week I had another consult to get approval to have the neurostimulator implant.  We'll beat these darned brainwrecks yet!!

staypoz

[Mei Mei]

I hope so, Staypoz!   I went to my neurologist today and he told me to stop taking Lithium cold turkey and that I didn't need help with the withdrawal.   Here goes.   

He recommended that I try the nerve stim. implant from Medtronic that you are applying for.   I'm having reservations about that since I haven't yet tried Botox.   I asked about Dr. Ducic, but he wants me to get some nerve blocks at the Washington Hospital Center's Pain Clinic with Dr. Kodgi.   They didn't have an opening until Jan 14 so he asked to speak with Dr. Kodgi himself and explained my case.   The doc. said he'd see me sooner without a new patient appt. and they called me and gave me Nov. 23 at 7:30 in the morning.   It's scheduled for the O.R. and I'll be sedated which is way different from Dr. Dombrosky and my accupuncturist who did it right in the office with no sedation.   I think they mean business there.   My friend's wife who is a retired Hopkins doctor said don't go to Hopkins for neuro, that the best neuro around is at the Washington Hospital Center.   I found that to be true for my father several years ago and I'm getting those vibes now.   Dr. Schlosberg, my neurologist said if the nerve block works, then it's an indication for the surgery with Dr. Ducic.   At least now I feel I have some direction and a plan.   Now all I have to do is wait until Nov. 23.   Hopefully it will be a Thanksgiving to be thankful for.

Mei Mei

[cin605]

Sound like you may be getting somewhere Meimei......maybe Captain Deb or I can tell you how our nerve ablasion goes before then.