New Neurologist, New Hope!

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New Neurologist, New Hope!

Post  KimbaK on Mon 18 Nov 2013, 9:37 pm

Hi All,

I just wanted to drop in and see what is new.  For me, life has been a 10-year-old daughter with a broken left humerus.  Life's been interesting around my place!!  I have some news I want to share. I tried to include the links to the articles I want to share, but they don't open.  I guess if you want to see them, you will have to copy them into your browser.  I think this is very worthwhile and something that may offer new hope to those of us who aren't responding to treatments.    

I had a new neuro apt.  I am impressed.  She is not only brilliant, but is a good people person as well.  She listened to everything I had to say, made eye contact, asked questions that let me know she is listening and respected everything I said.  She asked me before she did any kind of hands-on exam and washed her hands before she put them on me.  After the exam, she sat down with me and explained what she thinks I have.  She had a diagram that she used to show what and where she feels I need to have worked on.  

As I've been diagnosed with Occipital Neuralgia, Cervicogenic Headaches, Migraine, etc.. and tried all the preventive meds, Botox, nerve blocks, etc...  she thinks I am a candidate for a Nerve Decompression surgery.  She explained that the trapezius muscle which is involved with pretty much every movement involving the upper body and head may be irritated or inflamed.  The occipital nerves pass through this muscle so that when it tightens up, it puts a tremendous amount or pressure on the nerves.  She explained that every person has a unique system of nerves. Some grow through the muscle which is bad in terms of migraines and head/neck pain.  The surgery to manage that condition involves a plastic surgeon opening the back of the head to the muscle, not all the way to the skull, and removing scar tissue and removing minute parts of the muscle to free any nerves that are being compressed.  

I'm not explaining it perfectly, but if you look it up for you can read the articles about it and even see a clip of a Good Morning America where Dr. Blake and Dr. Perry (the plastic surgeon who has the most experience with performing the surgery) explain what it is and how it works.  The clip shows a 30'ish mother of 2 who had the surgery and has had a tremendous improvement and a 16-year-old boy who is also having a terrific amount of relief.  

Since my Medicare is now active, I plan to have the surgery in January.  That is after my daughter is out of her sling and back to her independent self.   The surgery is out-patient in Houston and the recovery time seems fairly short.    This is one thing I haven't tried that sounds like a viable option.  

The doctor I saw is Dr. Pamela Blake of the Headache Center of the Northwest (Memorial Hermann Medical Group.)  Address is 1631 North Loop West , Ste 640; Houston, TX  77008   Phone:  713-426-3337  mhmedicalgroup.org

She has been patient recommendations from 2008 through present.  I can't remember how I found her, but the patient recommendation system is what convinced me to see her. She is worth it.  I know nothing is guaranteed and individual responses vary, but I just have a good feeling about this. I haven't had a good feeling about any doctors in a long time so I'm going with my gut on this one.   She did not tell me about the GMA clip, I found it myself while researching the surgery. I like that she didn't brag.

Here are the links.  I can't get them to open so you will have to copy them into your browser manually.  I hope they open.  The information is very good.  And seeing the Good Morning America clip really validates the surgery in my opinion.

www.headache-hope.com/NerveDecompressionSurgery.html

abcnews.go.com/GMA/OnCall


Good Luck All!!
K

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Re: New Neurologist, New Hope!

Post  7777Trinity on Tue 19 Nov 2013, 2:31 pm

Kim
YES!! That is the surgery I am going to have, Nerve Decompression surgery. I hope to have the consultation with my Doctor, William Gerald (Jay) Austen, Jr. M.D. in January if not sooner. He is in Boston, MA and we will have to travel there for the surgery, however our daughter lives there so we will have a place to stay Smile

I am just waiting for the call back that they have received all of my medical records.

I am excited about this, something new and it works from what I understand!! So glad you found a good Neuro!!! Wow!! Can she recommend anyone in Henderson/Owensboro area of Kentucky??

Keep me informed on how everything transpires!!

Trinity
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I'm so glad for you!

Post  KimbaK on Tue 19 Nov 2013, 6:23 pm

Hi Trinity,

I'm so glad you are going to have the surgery. I can't wait to have it done. I couldn't believe that there is actually something I hadn't tried yet. I went expecting to have medications added or adjusted. I hate all this medication. Its great when it works, but I still spend a lot of time worrying about what the meds are going to do to my body as I get older.

I also had 4 steroid injections to the back of my head at the appt. She felt my head and any place I said was tender, she did an injection. She said if the injections work, then I may not need the surgery. It triggered a migraine afterwards, but she warned me of that first. I've had 2 days of minimal pain since the injections, otherwise pain is same old, same old.

Were you able to see the info I tried to include in my post. The GNA thing really impressed me. I always try to research any procedures or medications before I try them. The fact that the surgery is well=known nationally is even more comforting. I have been complaining of neck and shoulder tension for so long and no other doctor ever addressed it.

I wish you could come to Texas to have your surgery. Maybe then we could have it done on the same day and meet for lunch or dinner. I know its outpatient, but I still plan to get a hotel room and stay overnight. I'm about 2 hours out of Houston but I still want to be closer to the doctor for at least 1 day.

I'll ask Dr. Blake if she knows any doctors in Kentucky at my next appt.

I guess we just have to hang in until January. I'd do it tomorrow if I could, but its just not doable. Dr. Blake said that all her protocol is for a patient to see a neuropsychiatrist before a procedure. Since its a plastic surgeon is the one who performs the surgery, I think a psych consult is required. I haven't even called to schedule an apt yet. I also have to see both of the surgeons to pick the one I want. Or in my case, the one who takes my Medicare.

K

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Re: New Neurologist, New Hope!

Post  7777Trinity on Wed 04 Dec 2013, 6:10 pm

Kim
I just heard back from the doctor in Boston, after reviewing my medical records they have decided I am a candidate for Nerve Decompression surgery. My Appointment with them is January 23rd, 2014!! So happy Smile The nurse said the surgeon will examine me and make a surgical plan, then that gets presented to our insurance company. If they agree to pay, my surgery will be sometime in February.

I am praying this will be approved!!!

Trinity
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Re: New Neurologist, New Hope!

Post  Sara79 on Wed 04 Dec 2013, 11:16 pm

I'm hopeful for you both! I'm nearing the Botox debate myself. I've responded well to steroid and lidocaine shots into spots that are so tight they're causing the migraines to be more frequent/more painful, so I've had my docs say I'd be a decent candidate. I've seen mixed reactions from migrainers, and I'm hesitant to go to it; but, I don't want to rule out something without giving it a fair chance.

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That's wonderful!!!!!

Post  KimbaK on Fri 06 Dec 2013, 9:50 pm

Laughing 

That is terrific!!! I had my follow up with the neuro and the consult with the plastic surgeon this week. No changes with neuro and she did the cortisone injections again. Slightly less painful this time. No major migraine this time. Still feeling pretty good, too.

The surgeon told me that the surgery is still considered "Experimental" although it has been done for over 10 years now. He will draft a letter to Medicare and try to get them to approve the surgery. Once he hears from them, he will let me know what they say. If yes, we schedule the surgery and get it done. If no, appeal the decision and all the normal stuff I've had to do to get other procedures approved in the past, then go from there. I still have to have a psych consult prior to the surgery. Oh well, maybe there are some loose screws rolling around in my head...

It may be premature, but I still feel more hopeful than I have in a very long time. I don't always realize how depressing this diagnosis is, but since learning about the surgery I feel light and cheerful. Yay.

And my Christmas shopping is almost done.... And I hung my lights up in the yard tonight. Now if I could just wrap the gifts already!!!

I wish so much that all of us could have this hope of relief and the actual relief itself.

Kimba

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Re: New Neurologist, New Hope!

Post  Cluelesskitty on Sun 08 Dec 2013, 6:37 pm

That is great news, Kimba! Hopefully it will all go thru without a hitch. Please let us know how it goes.
I am keeping my fingers crossed for you! yay!

Risa

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