SML (Scarlett's) updates

[NancyMc]

Hi, Scarlett.
You sound very upbeat, and that makes me happy for you.  But you still have an awful lot to deal with and continued treatments, so I'm sorry for those troubles.  But as you say, it could be much worse.
I've had my three-month follow-up canceled three times, and it's been 13 months at this point.  I guess I should call and get an appointment with both Barker and McKenna and get the MRI out of the way.  Somehow, I just don't feel like it.
I hope you're feeling better every day.
Hi to Rich,
Nancy

[Kaybo]

Scarlett~
So glad that you got a good report & that things seem to be getting better.   Hopefully you can get these headaches under control &/or gone forever!

K   

[EJTampa]

Hi Scarlett (and Rich  ).
 
I hope those headaches resolve themselves eventually.  Nobody wants to be on pain meds all the time.  My headaches peaked in June and have since really toned down a lot.  I still get pretty bad ones if I do a lot of physical activity, but a Tylenol before starting is all I need.
 
I'm glad you finally got to talk to your surgeon about some of your other concerns.  The eye thing is strange.  I'm sure it's related to the AN surgery though since it only occurred after.  I wonder if that could be the catalyst to some of your headaches?
 
Dr. Bartels first told me that I would only need an MRI every 5 years.  Unfortunately after seeing the results of the one year MRI he decided I should have them done yearly.  There is some linear enhancement which is most likely just scar tissue, but he wants to be on the safe side.
 
Hope you are doing well and enjoying the change of seasons up in New England!  I miss that very much.
 
Ernie

[ppearl214]

 

What do I say Scarlett?   "Day by day, inch by inch.....".  Glad to hear the meds are starting to help the cause... and thrilled to hear you are hanging tough!  Pls give Dr. Klein my best (I need to book a follow up with her) and sending those massive healing hugglez to you and that fine dood of your's!!!!!!

xo
Phyl

[leapyrtwins]

Scarlett -

glad things are looking up and you've turned that corner.

Congrats on the clean MRI 

Jan

[Captain Deb]

So you tried Topamax?  That med takes weeks to kick in and you have to start with a very small dose (12mgs) and work your way up.  A lot of people give up on it too soon.  I had pretty good results with it and it let me drop my gabapentin intake from 2700mgs down to a screaming 1800 mgs.  It can have a lot of side effects, though--it made me real emotional and weepy at first.

I've done some research about gluten-sensitivity, inflammation and migraines over in the headache section.  I'm going to be the guinea pig for a gluten-free diet.

Hope you continue to make progress, Scarlett dear.  I know it can be frustrating.

Hugs,

Capt Deb

[yardtick]

Scarlett,

Happy the first year MRI is fine, but very sad about the headaches.  I have one now so I do feel your pain.  I've been on and off topamax, tegretol and gabapentin for the last few years.  HATE THEM with a passion!!!  The side effects are nasty. There is a drug I haven't tried baclofen, so I think I will give it try with all of my fingers and toes crossed.  Some days I honestly feel none of these drugs do a dam thing other than make me foggy and more miserable.  I don't have any answers.  I can't even enjoy a drink or a glass of wine because of the drugs and knowing the booze is a trigger.  HICUP

Anne Marie

[wendysig]

Scarlett,

Congratulations on the clean MRI, but I'm sorry to hear about your headaches.  I hope you get some relief.

Best wishes,
Wendy

[Lizard]

Scarlett,
I just wanted to say I agree and it does seem you have turned a corner.  Hopefully you keep trending upward and remain that way until the pain is gone.  Congrats on your 1 year mark...nothing better than starting fresh in a new year, how's the Lyrica working on the headaches?

Thank you for the update,
Liz

[SML]

Thank you everyone.

I just had a 5 day stretch without having to take anything besides my daily Gabapentin/Lyrica. I was not headache free by any means, and with the help of my trusty ice pack and heating pad, pain levels were well within the tolerable levels. A stressful day yesterday is what I believe triggered this mornings headache.

Inch by inch, Phyl!

Doc, I’m happy to hear you’re ready to turn that corner too. It’s a good feeling to actually see (and feel) some progress. See you there!

Nancy, I hope you do call for that MRI. I know you’ve had a lot going on in your life since surgery, but don’t forget to take care of yourself as well. I missed you at the brunch and hope to see you and Dave at the next one.

Ernie, It was great to meet you at the brunch. I hope you can make it to more of them. If you plan on coming to the fall ones, you’ll be able to enjoy some of the season changes you miss so much. There is nothing like Autumn.

Capt Deb, I’ll be watching how the gluten free diet works for you. Trying the Topamax was to appease my insurance company. My doctor wanted to go right to the Lyrica, but since it is so expensive, the insurance company wanted to try the other neurontin first. By the 4th day of feeling horrible, I was ready to give up on it. My dosage was 25 mg once a day.

Speaking of diets… I need to get on one myself! This sedentary year hadn’t helped my waistline any! I’ll have to join the “Let’s walk! or run! or something…” thread.

Anne Marie, my wish for you is that you are able to find a right combination of treatments that will work for you. Don’t give up, there is always hope. Have you tried Lyrica? I really don’t know if it’s that or the PT for my Trapezius muscle (and Craniosacral therapy) since all started on the same day, but maybe it would be something to try as well?

Liz, as stated above, I’m not sure which treatment was the force behind getting me around the corner, but I plan on sticking with them all for now.

I thank you all (Doc, Nancy, K, Cheri, Ernie, Phyl, Jan, Capt. Deb, Anne Marie, Wendy, and Liz) for your well wishes, and know that I wish everyone on this forum pain free days!

Scarlett

[NancyMc]

Thanks for your concern and encouragement, Scarlett.  I called today to get the MRI scheduled.  Too risky not to.  Wishing you well, N

[moe]

Dear Scarlett,
Congrats on your clean MRI!

Sounds like you have had quite the busy year- :ot is sometimes a full time job just taking care of ourselves isn't it? I applaud and understand your perseverance and dedication to getting yourself to feel better and getting rid of those headaches. Our lives will never really be the same. Sometimes it's like walking a tightrope. So fragile. Small triggers can affect everything.
No matter if it's headaches, tinnitus, wonkyness, paralysis. It's like we all have our own unique burden to bear.

Wishing you only better days, now that you are past the one year mark. I would imagine the cranio sacral therapy is helping a lot along with PT.
Acupuncture is also a good idea, but not for everyone. Let us know how your headache progress is coming along:)
Maureen

And Nancy, congrats on making your MRI appt!

[Jim Scott]

Hi, Scarlett ~

My apologies for initially missing your latest update (I've been incredibly busy) but I'm delighted to learn that not only are you seeing some progress in resolving your various issues (balance, headaches) but also that you received an encouraging 1-year MRI report.  Thanks for your post and your kind words.  May the next 12 months see even more progress for you and a return to the normalcy you deserve. 

Be sure to say "Hi!' to Rich for me. 

Jim

[SML]

Nancy, I’m so glad you got the MRI scheduled. Please keep us posted. Hope you and Dave have been enjoying this nice NE weather.

Thank you Maureen for your kind words. It certainly is a tight rope we’re walking! It’s all about re-learning what works for you and what doesn’t anymore. And then as more time passes, to re-learn it again, as things get better and better. Patience is a virtue!

Jim, thanks for the well wishes. No need to apologize for missing a post. You’re always there for me and for so many others! Hi to Tina.

Scarlett

[Keri]

Hi Scarlett,
I've been away from the forum way too long and don't know much of what's going on. I'm so glad that things seem to be going better for you! I'm really glad you feel like you've turned a corner. And I wish I could make it to another brunch!

Take care! You and Rich are very encouraging to others here!
Keri