|Member Since||05/14/2008 10:16 PM|
|Last Online||12/04/2013 10:45 AM|
|A little about me:||I am the mother of a sixteen year old daughter with a two year old headache. Her headache began March 19, 2006. It was the last day of her Spring Break and she had just gotten over a stubborn sinus infection. She woke up feeling ill and her headache began later that evening. She had no history of migraines and had only normal occasional headaches before. She has had numerous medical tests and fortunately/unfortunately? everything has come out normal. We have tried a long list of medications but unfortunately her pain level fluctuates around a seven. After about four months she started having neck and back pain from her headache and has now been diagnosed with fibromyalgia. She has started having constant stomach pain since this last October. She seems to have some type of pain syndrome with the stomach pain, as if the headache wasn't enough! For her headache we have tried acupuncture, biofeedback, botox, diet, vitamins and supplements, chiropractor, and massage therapy. She had headache treatment in a hospital which included IV treatments. She has had occipital blocks and even sinus surgery for a deviated septum that was thought to be related to her headache.
Because of her headache my daughter is unable to attend school and is on the homebound program, taking less than half the normal number of classes. It is practically a full time job for me taking care of her, dealing with teachers and administrators, helping her with her school work, and doing all the things that you all do - researching,dealing with doctors and medications, and trying to stay organized. I am happy and willing to do anything to get my daughter well, but I daily have to deal with the frustration of not being able to relieve her pain.
My daughter is an amazing person and is surprisingly, holding up pretty well. She misses school, being with her friends, and wants to be able to drive and have her life back. She's a really good sport and is always eager to try anything that might help her.
I have enjoyed reading the entries in this forum for a long time and it has been very helpful in giving me ideas to research and ask our doctors about. I finally have decided to join in.
We are now in a state of "guarded hopefulness" concerning a surgical procedure my daughter will have in June. It is a procedure done for occipital neuralgia. I had come across this condition in my research and thought that my daughter's symptoms didn't match, especially since she didn't respond to occipital blocks. (Apparently this is one of the normal determinations.) Someone who had the surgery encouraged me to take my daughter to see her neurologist who specializes in this condition. The doctor thinks my daughter is a good candidate for the surgery. I was especially encouraged to speak to one of her patients by phone whose headache started one day just like my daughter's. The surgery greatly reduced the pain of this patient's six year headache and she doesn't even take anything for the remaining mild headache.
The surgery is called nerve decompression surgery and it is considered minimally invasive.
Here are some links that you might want to check out. This one is from a recent local news report. I'm sure non Texans will enjoy the accents. The "raw video" is especially informative.
Then do a search for "New procedure gets rid of headaches forever"
If Dr. Blake, a neurologist, determines the patient is a good candidate for the procedure she sends the patient to Dr. Carlton Perry, a plastic surgeon for the minimally invasive surgery. His website has a link to their spot on Good Morning America.
This next website is from the hospital where Dr. Blake used to practice in Washington D.C. Dr. Ducic and his colleague also perform the procedure there.
Then do a search for "Revolutionary Migraine Treatment"
Although the sinus surgery was not successful in improving my daughter's pain,it might be the answer for someone else. Here's her sinus surgeon's website. (I've also read about a doctor in New Jersey, I believe, who is onto the same idea.)
Hope this information is useful to you. I look forward to visiting with you in the forum.
Update on Lisa: Day 2 after surgery. Lisa's surgery went well. The surgeon said he found the same things that he finds in all of his occipital neuralgia patients: scar tissue from continued inflammation, compressed nerves, and on her left side the nerve was branched with muscle running in between the branches. He freed up the nerves and thought that she would have a good result from the surgery. She has a pain pump going directly into the back of her head so at this point she has no headache. A couple of hours after her surgery she got a frontal headache. She took a Toradol and the headache went away. That was a new experience for her as it usually just took the edge off! The first of next week her pain pump will be removed and I guess we will learn the immediate effect of the surgery. We are supposed to wait two to three months to determine the full effect. At that time it will be determined if she needs the same surgery in the front. I think about half of the patients need the second surgery. So for now she is enjoying being headache free and we are hopeful from the surgeon's findings that this will at least decrease Lisa's pain but hopefully get rid of it entirely. Thank all of you for your concern and especially your prayers.
New Update on Lisa: Lisa had her three week post surgery appointment with her neurologist. We were concerned that she is still having some headaches but the doctor reassured us that everything sounds normal and that it is still "way too soon to determine the full effect of the surgery". She explained that it just takes time for the nerves to recover from the surgery and also from being compressed for such a long time. For now she is having frontal headaches most, but not all days. Sometimes medication gets rid of them but sometimes it just reduces them. The headaches range from 2-5/10 on the pain scale. This in itself is a big improvement from the sharp pounding headache that stayed around a 7 or 8/10 and effected most of her head. After our appointment we are relieved and encouraged and we will try to be patient to wait the next two months to determine the full effect of the surgery. We hope that many of you out there could benefit from this procedure.
|Hello everyone, I'd love to announce the first online MSIDS Support Group here on MDJ!!! Come find us!!!
|Hugs to all the wonderful Lyme Forum members... Remember, you are not alone. We have such a wonderful group of compassionate people. blessings and light ~ purple
|Just sending out a quick hug to everyone. I know the struggle can really wear you down, but there is always a light at the end of the tunnel...you can and will get better...should you fall...we will help you dust yourself off and pick yourself up...You are each and everyone of you worth it...Lots of love to everyone...
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