Had surgery for mechanical neck issues, no TN or ON 2 wks postop!

Hi All! I had a cervical anterior fusion C4-5 and C5-6, and I have occipital neuralgia and tn. (and systemic lupus) but anyway, that was two weeks ago. My surgeon used adult marrow stem cells for disc material. My specialists, neurologist, orthopedic surgeon, pain mgmt doc and GP all concurred that alot of my issues come from the mechanical problems in my neck which are magnified by my lupus which causes inflammation in the surrounding nerves and blood vessels.

That said, it took me YEARS to come to this surgery and doctors that agree. It wasn't easy to get here.

So I'm two weeks postop, I'll include some pics. I haven't had more than a twinge of any nerve pain from the surgery and the on and tn are QUIET!!!!!! If it keeps on this way, my surgery can be considered a success in that area. For any doctor that doesn't think that inflammation and cervical spine issues can cause ON or TN..I may be walking proof that they can.

If you have any questions about this surgery, here is a link to that, http://arizonaspinedoctor.com/stemcell/orthopedic-stem-cell-therapy/stem-cell-therapy-for-spine/ and I'll repost this as a new thread, as well.

If you have any questions of me, please ask away. Whatever I can do...Love and HUGS, Julie






Yay. Pain free. Keep it up.

Keep us posted on the progress.

Smash

Who are all of your doctors what are there names I live in Phoenix and have neck problems and TN and gn . I hope the surgery continues to work it would be nice for you to be pain free. Please give me the name of all of the doctors I have a hard time finding doctors who give a S...........!

I'm in PHOENIX TOO!!!!!! Here is Dr. T's contact: /http://arizonaspinedoctor.com/stemcell/orthopedic-stem-cell-therapy/stem-cell-therapy-for-spine/

My pain mgmt doc is Dr. Todd Turley at Pain Center of AZ and here is a link to them: He has given me some relief with procedures like radiofrequency ablations, nerve blocks, and cortisone shots: http://www.thepaincenter.com/contact-us/

Nice to meet you Kat!!! :)

Oh wow Julie, that’s awesome!!
Continued healing and well being, please keep us updated on your progress!
Going to check out the link you provided!
Huge (( hugs )), Mimi xx

Hi Julie, I am so excited for you and happy you are pain free! Do you think the problem is originating in the neck and the pain is being referred to the jaw, teeth, ears etc? Wishing you a speedy recovery!

shawna

I think the problem in my neck (herniated discs with spine impingement) was causing inflammation in the area-which inflammed my blood vessels and nerves (I have systemic lupus and inflammatory arthritis, and am prone to it) and it caused inflammation in the brainstem which triggered the TN. I also have GN, ON and bouts of temporal arteritis. Believe you me, my first TN attack was a whopper from all 3 branches of the nerve. That wasn't referred, lol-that was headed straight on to me from the trigeminal nerve, LOL. :)

I am quietly jumping for joy. I don't want to get to excited just yet ...... very happy tho. A blessing. ;-)

TY, that's exactly the attitude I have. It's a wait and see. I don't even know yet if the stem cell treatment will take..My surgeon is not happy I have lupus, which has already caused a discoid rash in the area. So, yep, we'll see. Time will tell.


SO SO happy this is working for you!!!

Do you have a neurologist that you go to that is good



jujubeee said:

I'm in PHOENIX TOO!!!!!! Here is Dr. T's contact: /http://arizonaspinedoctor.com/stemcell/orthopedic-stem-cell-therapy...

My pain mgmt doc is Dr. Todd Turley at Pain Center of AZ and here is a link to them: He has given me some relief with procedures like radiofrequency ablations, nerve blocks, and cortisone shots: http://www.thepaincenter.com/contact-us/

Nice to meet you Kat!!! :)

SO happy this has helped you! My neurosurgeon fused my C-2 through C-6 with a cadavor bode in hopes of giving me relief but if failed...however, I WISH he had gone the route your Dr.s did - using adult stem cells - I really believe this makes the successful difference!!! :) And you are absolutely RIGHT - inflamation & other cervical spine issues CAN & often DO cause or at least greatly contribute to ON & TN - that's where all of my pain began with this nightmare I can't wake up from...I had the similiar situation as you with herniated discs & nerve impingment thoughout the C-spine. Now I have bony growths on the plates, screws & all over the cadavor bone...:o/ My neur. says their is nothing that can help with the severe pain that has returned...

Thanks for sharing this with all of us - it always gives us hope that there are new treatments available & other ones just around the bend!!! :D Take care of yourself & keep us updated on your progress!!! Thoughts & prayers - Lori

Oy Vay Lori!! (for lack of better words right now).. You've got bony growths on the plate and screws and cadaver bone? This goes to show how many different things can happen. Yow.. Are you going to need another surgery then to get that cleaned out? You know an orthopedic surgeon may be a little better fix for you than a neurosurgeon. It was an easy choice for me to pick an orthopedic surgeon. Noone wanted to operate on me or touch my problems because I have lupus! My orthopedic surgeon was the 4th specialist I saw who said I needed surgery and soon but the others ran the other way when they heard or remembered I have systemic lupus.

Thanks for your reply and nice to meet you, I'm JUlie. And I agree, I don't see how the inflammation from our spines can help causing nerve problems..Idk why the doctors are so wishy washy about it either. :(

Love and HUGS, Julie

Julie -so great to meet you! And again, I want you to know that I'm SO happy you are feeling good these days!!! I've often wondered if an orthopedic surgeon might be worth getting another opinion from...thanks for the suggestion! I have to share a really great thing that happened to me yesterday - I finally got around to calling Johns Hopkins Hospital Neursurgery Dept. because I really want to get another opinion before having a 2nd MVD done (the 1st one was done 9/13/11 I failed to do anything but increase pain in all 3 branches of my trigeminal nerve - only was affecting 1 branch prior to the surgery, cause me to lose a substantial amount of hearing in my right ear & vision in my right eye among many other totally unexpected side effect results that I won't go into right now, but the good news I got yesterday is that Dr. Ben Carson - THE Dr. Ben Carson, expert neurosurgeon in the areas of pediatrics AND Trigeminal Neuralgia procedures, agreed to take MY case immediately! His assistant called me back within an hour of my call to them & he said "Dr. Carson would like to take your case." I about fell off my chair!!! ;) I know he specializes in difficult cases, but I never imagined I would get the chance to have him go over mine, & actually treat me if there is anything he thinks he can do for me! Now it's the waiting game...waiting for my neurosurgeon here to get my records transferred, but the hospital already faxed all surgical reports to him 1st thing this morning! They were really happy for me & are doing everything they can to move things along! Anyway...just wanted to share some good news tonight! :D Take care - love & hugs to you too!

THE BENJAMIN CARSON? Are you kidding me? How fantastic and wonderful!!!! I'm speechless. I think he is an amazing man. I have his book and its next on my reading list. (I might have to read it first now!) Wow, are you lucky!!!!!!!!!

REALLY? Really? Just can't get over it..I can't wait to tell my husband, he is a GIANT FAN of Dr. Carter. We fell in love with his ideals and storytelling (and his politics). This is a wonderful opportunity! Of course, he's lucky to have such a good patient as well. It sounds like he truly wants to help you. I firmly believe that when you have two who want the same thing-that you are driven to good results. I think this is really terrific!

So glad you let me know, and I have to hear ALL ABOUT HOW IT GOES!!!!!! I think you are in for a very positive experience and a life-changing one. He's like a real life "House"!!! I'm so excited, you absolutely made my day! I'm sure your records will be there pronto and so will you., lol.

I'm just thrilled for you Lori!!!! This is the beginning of something BIG!!!!!!!

Much LOVE, HUGS, JOY and PROMISE!!!!!! Love Julie

Lori (Lefty) said:

Julie -so great to meet you! And again, I want you to know that I'm SO happy you are feeling good these days!!! I've often wondered if an orthopedic surgeon might be worth getting another opinion from...thanks for the suggestion! I have to share a really great thing that happened to me yesterday - I finally got around to calling Johns Hopkins Hospital Neursurgery Dept. because I really want to get another opinion before having a 2nd MVD done (the 1st one was done 9/13/11 I failed to do anything but increase pain in all 3 branches of my trigeminal nerve - only was affecting 1 branch prior to the surgery, cause me to lose a substantial amount of hearing in my right ear & vision in my right eye among many other totally unexpected side effect results that I won't go into right now, but the good news I got yesterday is that Dr. Ben Carson - THE Dr. Ben Carson, expert neurosurgeon in the areas of pediatrics AND Trigeminal Neuralgia procedures, agreed to take MY case immediately! His assistant called me back within an hour of my call to them & he said "Dr. Carson would like to take your case." I about fell off my chair!!! ;) I know he specializes in difficult cases, but I never imagined I would get the chance to have him go over mine, & actually treat me if there is anything he thinks he can do for me! Now it's the waiting game...waiting for my neurosurgeon here to get my records transferred, but the hospital already faxed all surgical reports to him 1st thing this morning! They were really happy for me & are doing everything they can to move things along! Anyway...just wanted to share some good news tonight! :D Take care - love & hugs to you too!

I am so pleased for you! Like you I agree that TN can be triggered by Autoimmune problems and inflammation. Take Care, please let us know how it all progress's. xxxx

I tried to reply with my phone email but I see it did not go through so I will try from my home computer. I got a call this afternoon that since Dr. Carson is retiring in June, he will not be able to take my case after all...BUT his associate, Dr. Lim will be going over all my records to see if there is anything he can do & will be calling soon to set up a consultation...I am extremely disappointed about not seeing Dr. Carson - I guess it just wasn't meant to be...however, I know that Dr. Lim is highly regarding in the field of neurosurgeons treating TN so I'm thankful at least SOMEONE is willing to see if there is anything that can be done to help my condition. Will keep you up to date! Let me know how you both are doing as well!!! Our load is less heavy if shared! You are in my prayers! Take care! ~ Lori

That's fine! I would certainly trust his associate Lori!!! Definitely! I think Dr. Carson is retiring to make a run for president in 2016!!!!! I am not kidding!!!!!!

And absolutely, you will be in the next best hands than Dr. Carson. He might even be consulting with him behind the scenes.

Thank goodness!!!!!! I'm so happy for you I could bust! LOL

Keep me updated!!!!

Thanks! So far so good and I'll keep an update. How could it not be influenced by ai issues and inflammation!!! Much Love, Julie

elstep said:

I am so pleased for you! Like you I agree that TN can be triggered by Autoimmune problems and inflammation. Take Care, please let us know how it all progress's. xxxx

I have been thinking about what Dr. Carson will be doing once he retires from neurology, & I'm with YOU - I believe he is entering the politcal arena! Woot Woot!!! :D Sure hope so! I listened to an interview with him on the 700 Club this past week & he had so much wisdom to share, really common sense ideas that we as a country need to get back to! Will be watching & waiting...;) Btw, did you know I worked for a congressman in CA for several yrs. & then began working as a campaign consultant?! I LOVE it!!! Once it gets in your blood, you can't shake it!!! ;D Been doing it for 27 years! Right now I'm managing my husband's 1st run for our local city council - this is a 1st for me having a family member as a "client!" ;D Our general election is April 2nd. Just thought it might be fun for you to know what I do part-time from home for a "hobby" now! :)
xoxo ~ Lori
jujubeee said:

That's fine! I would certainly trust his associate Lori!!! Definitely! I think Dr. Carson is retiring to make a run for president in 2016!!!!! I am not kidding!!!!!!

And absolutely, you will be in the next best hands than Dr. Carson. He might even be consulting with him behind the scenes.

Thank goodness!!!!!! I'm so happy for you I could bust! LOL

Keep me updated!!!!