3 months post surgery

Dayna is back to being herself.

The headache in the center of her head is not there.  (Although, she has had a couple headaches that have gone away.)  The shooting pins have stopped.  She still has a “headache” around her temples.  She is scheduled for nerve decompression on those nerves in December.  We knew at the start of oll this that more that one procedure might be necessary.  Dr. Ducic works on the area with the most pain first.  Thankfully, the frontal surgery took care of both her headache and the spkes of pain she was experiencing.

Occasionally, the nerves tingle in her forehead.  She has mentioned just a couple times since her surgery.

It is wonderful having our daughter back.  She has submitted her college applications.

 

Teena

I am Dayna's mom.

6 Comments

  1. Thank you so much for sharing your story! I am a 30 yr old female, wife and mother of a 7yr old precious little boy. I have never had a headache in my life, at least not one severe enough that I would even take advil or tylenol for. I started having headaches Feb of 2011. Within a week or two, the pain was constant and severe, 24/7. I couldn’t open my eyes, the pain was so severe. I spent my days crying in a dark, quiet room. That began the cycle, which for the past year has turned into Dr after Dr, er visits, hospitalization for DHE-45 treatment, which did NOTHING but make me worse. I have seen many different Neurologists, had an MRI/CT SCAN, two spinaltaps, tried Imitrex, Frova, Topamax, Indocin, Neurontin, Amytriptaline, DHE-45. There may have been more, its hard for me to keep up with it all. I finally made it to the Headache Care Clinic in Springfield, AR. Dr. Dexter seemed to think I was dealing with Occipital Neuralgia from the get go. (Which amazes me BC I asked three other Neuros about that diagnosis bc I couldn’t even lay my head on a pillow, the pain was so severe. They all told me that couldn’t be my problem.) I have pretty much survived on Excedrin migraine and Percocet for the past year. Those are the only things that even take the edge off of the pain. I have not been able to be the wife and ESP the MOTHER that I need to be, that I WANT to be, as this pain and the meds have taken over my life. Dexter did a series of nerve blocks and for the first time in a year, I was pain free for about 6 hrs. It was the BEST 6 hrs!! Unfortunately, there was no long term relief from the injections. I am in the process of getting on the books for nerve decompression surgery with Dr.Perry/Dr. Blake in Houston, TX. I am VERY nervous about the surgery and the recovery, but I am hoping to see great results, like you have! I was wondering how your pain started? They think mine was caused by a viral sinus infection that settled on those nerves, causing neuritis. They said that my nerves probably go thru my muscles, instead of around them, and that was fine, until that virus inflamed them and they swole up. Now they are trapped within those muscles, swollen and inflamed. Sounds far fetched, but I have had no other relief so I am willing to trust these guys. Just wondering how your pain started and if it was anything similar to mine? Thanks again for sharing your story…and some HOPE. I just want my life back…

    Charity

    • Hi Charity,
      I hope nerve decompression is the answer you are looking for.
      We don’t know what caused Dayna’s nerves to be compressed. But, what you said about the sinus infection is very interesting. You see, Dayna had a very bad case of mononucleosis just before the onset of the bad headaches. Maybe that was the start of it all. We may never know.
      I asked Dr. Ducic recently what patients should be asking their doctors that offer these surgeries. It seems that there are a few more each time I search the internet. He feels very strongly that the surgeons should have training in peripheral nerve surgery. A fellowship in peripheral nerve surgery would even be better.
      This was his detail response to my question:
      “In my humble opinion the safest and most predictable outcomes can be expected by those doctors who have specialized training in peripheral nerve surgery. That would include neurosurgeons and peripheral nerve surgeons, like myself. Plastic surgeons as the part of microsurgery training, get exposure to nerves, but no official peripheral nerve surgery training is received (with very few exceptions), unless they would do one year or peripheral nerve surgery fellowship, as I did. Considering that in this great country a doctors holding license to practice medicine and surgery (= this is what state MD license for any US state reads on its front page), anybody can claim they are peripheral nerve surgeons and anybody can do migraine headache or any other kind of nerve surgery. I do know that there is an explosion of “self proclaimed experts” doing migraine/headache nerve surgery, even regular peripheral nerve surgery, especially since economy is poor so “normal“ plastic surgery procedures are somewhat down.

      The end result is existence of several major issues: one is that patients unfortunately are not asking their surgeons do you have peripheral nerve surgery fellowship training, rather they are asking is there anybody nearby me doing these procedures, so they can save on travel/lodging expenses. So patients are choosing convenience over safety, expertise and experience. As far as doctors, anybody can end up doping these surgeries. Ultimately, failure of surgery to help, complications and other will generate so much doubts in neurologists and pain specialists, that they will say, surgery is not helping, or can generate complications. Not to say, that medico-legal issues will flourish as well. The exact same, historically looking, happened with treatment of diabetic neuropathy (where who is doing surgery, when, and on what patient determined success vs. failure). Once this gets to insurance career ears, as they will easily see due to incoming bills, they will start declining coverage and patients will find themselves in even bigger troubles.

      This all is what patients do not see “advertised” on front page son internet pages, and this is what doctors across the country do not like to hear, actually would find very arrogant and offensive from my side, as someone’s entitlement often overrides safety, experience and expertise.

      So this is a long answer for your simple question, so you can share that with your friends, and help them.”

      If you have not already, look for Headache Hope, occipital Neuralgia & migraine and occipital neuralgia on Facebook. There is much discussion about the surgery and ON on these pages.

      If you have any specific questions, please ask!

      I am glad you found our site to be helpful,

      Teena

  2. Hi- I had occipital surgery with Dr. Perry in Houston, Thank you for sharing your story. There is a facebook group called headache hope full of people like us. You should check it out.

  3. I have seen your name in the forums.
    How has your recovery been? When was your surgery?
    Teena

  4. I’m so happy that your daughter “got her life back”. That is the best news!

  5. Thank you for all the info on NDS. I have had migraines sixnce I had a hstorectomy at age 26. Now at age 66 the headaches are 24/7. Over the years I tried everthing medical & alternative available. I am now trying Botox injections which haven’t given me any relief so far. The NDS that your daughter had is not covered by medicare but I am willing to pay if I could be reasonably sure the operation would help. I am told if Botox doesn’t give relief neither wil NDS.

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