Monday, February 11, 2013

The Florida Experience (Health News & Photos)

We thoroughly enjoyed our week in Florida.  

I always thought it was sort of corny that every Canadian on the east coast dreams of wintering there, but now it all makes sense. 

I never tired of this view (which never looked the same twice as the light changed):

I have a lot to report on the health front.  

I'm providing this mostly to help others, so don't feel compelled to read all this if you are not a headache sufferer!

(tall enough for ships to pass under and sorta scary to drive across)

If you recall, I went to see the famous Dr. Mark A. Piper, a world-renowned oral/maxillofacial surgeon who specializes in TMJ surgery.  He trained at Harvard as a dentist and Vanderbilt as a surgeon.  If you have any jaw problems (or bite issues or bruxism) and related head pain/discomfort, he is your man.

The session with Dr. Piper cost $1800 and the CT/MRI was $955.  I was in his office from 7:15 am to 3:30 pm and had a whole range of analyses done, as well as a long meeting with Dr. Piper and his assistant Julie to discuss my issues.  

Several other patients were in the clinic at the same time, so Dr. Piper and his assistants were in and out all day.  I had to leave the clinic for my CT and MRI, which took about an hour.  After that I was given 1/2 hour for lunch.

Palm trees outside Dr. Piper's office in downtown Saint Petersburg on a balmy February day.

Dr. Piper was thorough, kind, and patient (he took time to read my entire 4-page health history very carefully and asked me many questions).  He did not jump to conclusions and took a lot of time to listen, evaluate, and gather all the information he needed to help me understand what might be causing my headaches and in particular if it could be related to my jaw.

Palm trees at The Pier downtown.  This is Tampa Bay!

He took about an hour to review my MRI and CT scans and sat with David and I to review them.  He found that:

1.  I have some TMJ disease but not enough to warrant surgery.  My TMJ disks are not in perfect shape but they are both pretty good.  I was level 3a on his Piper TMJ classification system, which goes up to 5b.

2.  My TMJ disk may still be contributing to headaches, so he did some nerve blocks (marcaine injections) to see if they helped.  More on this later.

3.  I don't have a normal cervical spine!  C1 and C2 have anomalies which may be contributing to headache (cervicogenic origin).  He said I could see a specialized chiropractor who addresses this area but was not sure it would help as I have a bone spur on C2 that is really limiting my neck mobility.

4.  I don't have any other head pathology (e.g bone) and my sinuses are perfect (i.e. not sinus headache).

5. I do, however, have an enlarged pituitary, which needs to be addressed immediately (I am seeing my GP on Wednesday).  He said this may or may not be a pituitary tumor, and it can be contributing to the headache.  

Since I'm not experiencing really unusual non-headache symptoms, this may be a non-secreting tumor (doesn't affect hormones) but can cause serious issues if it  continues to grow.  It can press on the optic nerve and cause blindness or can bleed out and cause sudden very serious issues (like inability to maintain your blood pressure).  It needs to be evaluated and watched.  

(I will let you know.  As you can imagine, I'm a bit worried!)

6.  To deal with the bruxing (grinding/clenching), he prescribed a new medication Trazodone (which affects serotonin).  I'm supposed to take this in lieu of my current headache med (which is very sedating).  However, I took it the past two nights and laid awake until 4am the first night and 2am the second night before getting up and taking my usual med (which helps me sleep).  I will have to call Dr. Piper to see how to proceed as I can't take this and not sleep.  Sleep is a problem for me after being on sedating meds for many years.

7.  I need a thicker bite guard (splint) to wear at night. The thicker-than-normal splint prevents the jaw muscles from getting a good grinding position. I will just look like a hockey player at bedtime.

Our amazing beach (that's David).  There was no public access so it was lovely and peaceful!

Lastly, Dr. Piper did some nerve blocks in my head and neck.

Nerve blocks are injections of analgesic into nerves (and are a bit unpleasant as the needle goes in pretty far and can ZAP the nerve (oww!) and the needle stays in there and wiggles around).  AAHHH!

The first day he did 4 nerve blocks on the right side.  The first was in my neck, the second and third behind my ear, and the fourth in my right TMJ.  The reduction in my headache on the right side was about 30%, so not very significant.  That means the nerves and muscles in that area are not creating all the pain in my brain but are contributing some.

I came back the second day for one more nerve block, this time in the left TMJ.  He did two injections (very painful but brief!) and instantly my headache improved maybe 75%.  This suggests much of my headache is coming from the TMJ on that side.  I was shocked and amazed.  

Unfortunately, I had an adverse reaction to the injection (which can happen) and the left side of my face became totally paralyzed for 8h.  It looked like I had a stroke.  

My left eye would not close for 2h ( was WIDE open) as the motor muscles were paralyzed, so I had to either close both eyes (it would only stay shut if the other eye was also closed) or hold it manually shut when the other eye was open.  So we came straight back to the apartment and I went to bed until the motor function came back.  Ugh!  

But it was not too hard to lay in a quiet room with the ocean waves crashing on the beach outside.


The good news is that the nerve block worked!  Although it has worn off, my headache has been a lot better since, maybe 4's and 5's instead of the usual daily grind of 8's and 9's and 10's.  He said that the nerve block can help to re-set the nerve and some people get relief for a long period of time.  I pray this is me!

I will repeat the various nerve blocks with my neurologist (I think a surgeon has to do them) to see if they work again.

This may give me a tool for controlling pain.

So the bad news is that there is no magic bullet to totally cure my headaches (like jaw surgery, as I was hoping), but I have more understanding of my head issues and the nerve blocks helped.  

Now, there is just this pituitary thing to fret about...
Critters sunning themselves...

Have a nice week and thanks for reading.  

I will resume my regular posts soon.


  1. Honey I think this was amazing that this doctor was so thorough and was able to pretty much figure out bit by bit all the things that could be catalysts, contributing factors to your migranes. I'm sorry that you had such a scary reaction but it sounds like he wil help you on the road to finding a solution. I shall pray every day for you dear. Think positively. Healing is on the way. God bless you.

  2. Anonymous8:25 pm

    I cannot imagine living with the pain that you are enduring and not have an end in sight. You are so much stronger than I will ever be. Keep the faith and soldier on.

  3. A lot to think about, Terri. You are one brave lady that's all I have to say. I am very excited to think that you've had a significant lessening of pain levels, though I would like the headaches to just be gone. And you say that getting the pituitary situation resolved could also mean getting more relief? Now that is good news. You keep chipping away at this health concern until you have satisfactory answers. Be fearless. I truly believe that you'll find relief. As always, you're tucked into my prayers.

    And, my dear, you take the most scrumptious photos. You make me want to go to Florida.

  4. That's a lot of information to digest for you. I am glad the doctor took the time to be thorough with you. So glad the nerve blocks helped. I hope the pituitary issue is soon resolved as well. So glad to hear this update, and I'll be keeping you in my prayers.

    That white, white sand - so gorgeous! Was it hard to come back to winter?

    1. Yes, very hard to come back! Thank you....!!!

  5. I'm so happy to hear of some relief for you Terri. I hope it's long-lasting. I too wear a splint and look like a hockey-player at night time. Blessings and good vibes going to your pituitary gland...we want ALL of you well.

    The photos are lovely too. Very peaceful.

  6. oh my your pictures are wonderful, wow that dr. put you through it all, I am so glad he cared so much and that your feeling even just a bit better...
    I had a major headache on the third morning of my colour class this pass week (took some time but when away) I thought of you the whole time, I cannot image living this everyday. thanks for sharing your life with us, your very brave thats for sure...
    looking forward to getting together again soon, just let me know when and I'll be there.
    Love Carol Anne

  7. First, it sounds like you received a lot of information and a good bit of relief from your visit to Dr. Piper. That's wonderful! Try not to fret about the pituitary issue until you know more. I know that's hard to do. Keep us posted. You sure did have a beautiful spot to rest and recuperate. The sand on that beach is amazing. I've never been to a beach with white sand like that. I've only been to Florida once -- Orlando for a conference -- and I'd really like to see the Keys or Sanibel Island. I'm glad you had a good trip overall, and thank you for sharing the details.

    1. Was so impressed with Florida. Thanks for your kind words. You are right about not worrying before I know more...!

  8. More than anything, I imagine it's comforting to feel like you've been listened to and taken seriously. Some of the news sounds promising, some is certainly concerning. I guess it's a good thing to have found the pituitary issue now and hopefully it's something that can be dealt with quickly and effectively so you can move on with treatments that provide some relief. It's always nice to get away in the middle of the winter. Don't you feel like the sun just thawed out your bones?

    1. You have no idea how much I needed a good baking in the sun...
      It was perfect!

  9. terri, you are so much further along the road to finding out the right solution for you. so glad you had the means and opportunity to see this doctor. although, I can not imagine what it would have been like losing your feeling/movement in your face like that.

    I know it is hard, but try not to fret about the pituitary issue. don't worry until you know there is something to worry about. just think of how you are conquering these headaches, one step at a time.

    best wishes! donna

  10. very interesting! I'm so glad you found some relief from the injections. When I read about your pituitary issue, I wondered about Cushings disease. In dogs, anyhow, it can be caused by a benign tumor in the pituitary. This form, however, is considered the 'good' form as it is benign and easily managed with medication. Symptoms in dogs are increased thirst, increased urination, poor coat and a round belly (due to muscle deterioration from excessive steroid production). I am sure you are fine as you are not showing any other symptoms, and it is so great that they found this now. Makes me want to get a CT/MRI. You know, just in case something shows up. I had a CT once (for migraines, but nothing like yours) and all was ok then.
    So glad your trip was a success. I'm getting sick of this white and brown terrain of ours and could sure use some sand and warmth myself!

    1. Well, I am getting the round belly but I think it's from chocolate. :D

      You are right, there is Cushings in humans also. I will see if he sends me to an endocrinologist or just wants to monitor witth MRI's. It can be a ticking time bomb and I totally agree that a screening MRI every once in a while doesn't hurt. This might have saved my life.

      I know - it was hard to come home to boring old Calgary.

    2. jeanne5:43 pm

      I agree with Andrea, if it is an issue with your pituitary than it is a blessing you had an MRI now and can follow up with it. As she stated you do not have the other symptoms. Hang tight, I pray that you have 100% relief as you seem to be on the right path. Everyday is a gift and I am glad for you that you had time to spend in the warmth, take care, jeanne

  11. Dear Terri,
    It sounds like the trip was worth it. At least you have more understanding of the problem, and the pituitary issue may be addressed. Hang in there.

  12. Anonymous6:16 pm

    Hi Terri, Your consultation with this specialist was so productive & to find out so much info without waiting weeks or months. I will keep you in my thoughts & prayers regarding your enlarged pituitary. NB in Ontario

    1. Thanks NB. You're always so kind. xo Terri

  13. That sounds like a lot of information to swallow! I hope the stress of it all was eased by that beautiful beach.Good luck with continuing relief.

  14. Hi there ... my best friend has suffered with headaches for her entire life. She had a surgery here in Houston a year ago and it has helped her dramatically! Some that have this surgery are completely headache free afterwards after having daily headaches for years. I am definitely not saying this is your issue but if you want to shoot me an email, I can give you her info and you guys could chat. I have such empathy for you and the hard life of being in pain. I have witnessed it with my friend. Good luck to you! Vikki xoxo

  15. Hi, Terri - I'm catching up here. Have been sick with a bad cold / virus. In addition to the beautiful setting, I'd say your trip was worth it. You have gathered so much information from Dr. Piper. Thank you for breaking it down for your readers. I'm sorry you had an adverse reaction to the injection - that must have been quite scary. I once lost 100% of hearing in my right ear for a month (while we were in Provence). The right side of my face felt paralyzed and really heavy. Miraculously, my hearing came back. Take care, and keep us posted!!!

  16. PS - Happy Valentine's Day!! :)

  17. Oh, those nerve blocks are rough. But it helped! Yay! I'm so glad.

  18. Anonymous10:14 am

    I have only recently "discovered" you, and love reading your thoughts on decorating our homes. In the midst of your headaches, you share such calm and beautiful thoughts and photographs. Your blog is impressive. You are, without doubt, more in tune with things in life that are truly beautiful. I do hope and will pray for you to be able to get rid of these headaches. I love your Windlost blog. Thank you very much and all the very best to you! KT

  19. Anonymous3:55 am

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    Woollahra Dentist

  20. Hi, I stumbled across you post because I am considering a consultation with Dr. Piper. My TMJ specialist in NJ highly recommended him. One of my concerns is the cost. Was any or the $1800 and $955 covered by insurance?If so, Did you have to pay up front and then get reimbursed? Thank you in advance. I appreciate how thorough your account of how the consultation process goes.

  21. Hi! My name is Lidia, I'm from Spain and I'm suffering from TMJ issues and headaches. I'm thinking about visiting Dr. Piper but I'm worried about the cost. Apart from the cost of CT and MRI, how much it costs to block your nerves? And how many days did you have to stay there?Are the hotels very expensive? Please, answer me because I'm desperate! :( Thank you so much in advance. My best wishes to you

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