Input please, big decision to make

General General TN & GPN (Old Site)
1

Hello to All

I flew into Vancouver yesterday and have had two meetings with my neurologist and also a spinal tap today (which went really smoothly and now in bed at a friends being waited on hand and foot:-)

So here’s what I need to think about: I am on a waiting list to see the top NS at UBC for consult for MVD. It will still take quite awhile to get into him.

But, my neuro has recommended that I consult with a a much younger NS who is quite excellent and has recently performed an MVD on one of my neuro’s good friends and it has been a big success.

This NS was a couple of years behind my neuro at school. I said, oh my god, how old is he because you look about ten! And she laughed and said if that’s what you think, then he will only look about five!

I really like and trust my neuro a lot. She would like me to have the MVD sooner rather than later. And of course, just because I consult with the young NS doesn’t mean I get taken off the list with Dr. Honey, the UBC NS who is at the top of his game right now.

Any thoughts from anyone?

2

Hi Bellalarke:

I am in the same boat as you!!! Just walked in the door from a consult with a NS in Kelowna. As I have been waiting to confirm that I was even on the list to see Dr. Honey. (love BC Medical's referral system)

So that is my question: I can have a MVD with Dr. L in Kelowna in the next month or two or should I continue to purse trying to get to Vancouver?

In Dr. L favour I spoke with one of his patients who has TN and had the MVD done in 2004 with excellent results. He said Dr.L is little quiet and not to chatty but an excellent doctor.

I am so overloaded with thoughts right now, all the doctors I have seen regarding my TN had told me that it would be a year or two to see a NS and then many months after that due to the bed shortages at the hospital to have a MVD.

So, for us in BC do we go with a young doctor? a local doctor? or wait years for the top doctor?

I am unable to work and have no income; taking huge amount of drugs and still having pains.

Oh dear, I am rambling now. I am going to take this evening and reflex on what this NS offered me today.

Thanks,

Honeybumps

3

Wow, Honeybumps, isn’t that an interesting coincidence! We’re in competition for the same NS. Yikes.

I am not working outside my studio either and am getting, as the old saying goes, “poor as a church-mouse” as the days go by. I get a bit of drawing done but haven’t got the get up and go to organize an art show, and even then, wouldn’t make much…

I’m also taking loads of meds and still in pain unless I stay “quiet as a church-mouse” and the weather and god knows what else cooperates!

Needless to to say, it’s not my natural state to be mousy!

I am inclined to go with the young guy…

Please let me know how your night of reflection goes.

Thanks for letting me know about,your situation too.
Bellalarke

4

May I ask why a spinal tap? That scares me more than MVD!!!!

Devil's Advocate Here:

Things to consider - knowing nothing about how your health care works:

***Can you consult with them both/ get a "feel for who to use" - and then decide?

***New Dr: ..... recently performed an MVD, but we know it takes a year

to heal and even though no major complications at the time, maybe not sure if it is a "success"--has it been a year?

AND even then -- can leave remission in year 2, 3 or 10.

***MVD rates are more successful sooner than later -- how long have you been with the TN Curse??

***Can you find out how many MVD's both have done, "success rates"???

***Is either one of them on our recommended list here??? More than once?

***On a scale of 1-100 how is your average pain in an average day and is it progressing?

(1-10 is NOT for TN) How long a wait are you looking at for #1? Big Factor.

If you were my sis, and Let's just say you are : ) these are the things I would ask you to ask yourself!

I might have to make the same type decision one day -- Dr. Casey is bound to retire within the decade or less - so I have my eyes on Dr. Lim at Baltimore -- I hope that's a decision I don't have to make soon. Dr. Casey also travels extensively -

So I'm just trying to get beside you in your head of every thing I would consider.

But we here get em done faster here -- I emailed Casey in Aug...and on the table in Oct. 2010. (Maybe not better, but faster)

When I can't make a decision I litterally draw a line down a piece of paper and put pros and cons of each

- you will need 4 columns! But you don't have to go thru all that tonight.


Let us know - think out loud and post as you go..... we are here for you!

I'm posting this at 9:05 pm Central time -- what time is it there - when it is this time here??

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Thanks so much KC!
You are 9:05, I am 7:05.

I had my first attacks on Nov. 5/09. Lasted 24 hours then disappeared until Jan./10. Intermittent the following for months. Been with me daily since May/10. Had a couple of wrong diagnoses. Set me back. It’s getting worse all the time. No, I don’t have to make an overnight decision. Just wanting to get working on my “four columns” for decision making.

Thanks for your input.

6

Dear Bella & Honey, (( hugs ))

First Bella,
I hope you allow and enjoy being looked after, you deserve it. Lay flat for a few days and minimize how often your upright to avoid the horrid headaches that can occur after a spinal tap.
I would go for the consult, if it doesn’t change your position in line with Dr. Honey then no big deal, always better to get more than one opinion before deciding anyway. Do you have a consult date yet with Dr. Honey?

Honeybumps,
I think it’s important to go with your gut but also equally important to consider your quality of life and how much longer you can reasonably wait.
I think it’s really important that this surgery be done by someone experienced, who has performed many of them.

I was in a similar situation last October. It’s such a personal decision.
Trust your instincts, don’t do anything out of desperation, and everything will fall into place.
There’s a trust in the Universe vibe I’m sending your way my BC neighbours! <3
Thinking of you both,
Mimi xx

7

Hi Mimi

Thanks for your valued input.
I certainly am enjoying being looked after my my dear friend:-) she came with me today to the hospital and laid on the bed with me to help hold me still while Dr. Dilli performed the spinal tap. I went into a very quiet one-point meditation and didn’t feel a thing except when the first needle for the local anesthetic went in and it was smooth sailing after that. I was so relieved and expect now that I will not have the killer headache.

No, having the consult with the young NS doesn’t change my position on the wait list for DR. Honey. I only have experience to gain! But it is helpful to know all the questions to ask.

And, I am in the process of making my own appeal to Dr. Honey (as we discussed) and getting a detailed document together and have four good letters of support from family and friends.

We all want someone who is experienced…but there is only one way for them to get that experience…it’s a conundrum

Hope you are resting well too. How is your pain?

Xo Bellalarke

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The importance of finding the best neurosurgeon in MVD is in my opinion of critical importance. My advice would be to contact each of their secretaries and find out their statistics covering MVD only, make sure they include the following:-
How many performed.
Success rate <2 years from diagnosis and >2 years as the stats will differ
% of cases where long term difficulties arose
I also asked specifically for % of cases where brain fluid leak had been experienced.

You can also conduct searches online to see if any previous patients have posted anything on the surgeon’s ability.

Good luck!

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Good Luck Bellarke. You need to go with a neurosurgeon you entrust and feel completely and totally comfortable with. We struggle sometimes with doctors, whos the best will he make me pain free? I am sure you like all of us research, research, research. Thats a good thing. Happy for you that you have decided to take the leap and give yourself a chance to being pain free. Keep us posted Bellalarke on tests results and when you will be having surgery. Wishing you nothing but the very best and sucsess.
My best
Joannexo

10

Thanks so much Quickie and Joanne

I do know that the top surgeon has an impeccable record and is at the top of his game but it will take longer to see him.

I will check with the you gets one’s office for stats, thanks for that idea. He has a excellent Internet patient ratings. Still lots to find out though.

11

Hey Everyone,

Just to let you know, I have decided to go with the NS in Kelowna who is located only 2 hours from me. He has been doing these surgeries for over 12 years. The more I read I realize I have had TN for at least 2 and half years for sure and I simply can't deal with the unknown of the day to day life of not planning anything, pain, drugs and crying everyday.

He agreed that having it done in the first 5 years has better results, and other than this I am in good health. Also, he noted the my pain is only in my left cheek, right on top of my sinus area (and where I had my tooth removed). I have only noticed some teeth pain in the last few weeks, so it has just started to move. Again suggesting sooner than later for me. I can't say I have any burning sensation that some of you talk of or pain in other areas.

I was very lucky to speak with someone at great length who has TN and has the same neuro and Dr. L. He had the surgery in 04; after he came off the drugs and the healing time about 4/5 months. He has had no pain and no drugs since then; so that has help greatly. I am on the list for surgery with Dr L and now I just have to wait for a bed the hospital. As the receptionist said, a month or two or three... Love BC Medical - wait times for everything.

Thanks for all the input and posts. We are all so very very lucky to have this forum to support each other. I may not post a lot (typing is a wee bit tough with all the Tregal-Dull in the system). But I check and read almost everything at least twice a day.

Thank you,

Jenny

12

Way to go Jenny!
Glad you made a decision you’re comfortable with, and with a great reference to boot from a previous patient. I hope a bed opens up quicker than you anticipate and the days ahead fly by with little pain.
Wishing you nothing but the best,
(((((( hugs ))))) Mimi

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Do you guys need a bed builder.? I was in ICUS one nite and hospital room one night… I’m glad u r getting closer!!!

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Hi Jenny,

We have all these tough decisions to make through the fog of meds and and the grind of pain. Congratulations for making yours. Being able to speak with someone who has successfully taken the same route sounds like it ws key for you. I hope that bed opens up sooner rather than later and that you come out of surgery with flying colours and the best outcome. Please keep us posted. Wishing you the very best.
Peace and Happiness
Bellalarke >


Honeybumps said:

Hey Everyone,

Just to let you know, I have decided to go with the NS in Kelowna who is located only 2 hours from me. He has been doing these surgeries for over 12 years. The more I read I realize I have had TN for at least 2 and half years for sure and I simply can’t deal with the unknown of the day to day life of not planning anything, pain, drugs and crying everyday.

He agreed that having it done in the first 5 years has better results, and other than this I am in good health. Also, he noted the my pain is only in my left cheek, right on top of my sinus area (and where I had my tooth removed). I have only noticed some teeth pain in the last few weeks, so it has just started to move. Again suggesting sooner than later for me. I can’t say I have any burning sensation that some of you talk of or pain in other areas.

I was very lucky to speak with someone at great length who has TN and has the same neuro and Dr. L. He had the surgery in 04; after he came off the drugs and the healing time about 4/5 months. He has had no pain and no drugs since then; so that has help greatly. I am on the list for surgery with Dr L and now I just have to wait for a bed the hospital. As the receptionist said, a month or two or three… Love BC Medical - wait times for everything.

Thanks for all the input and posts. We are all so very very lucky to have this forum to support each other. I may not post a lot (typing is a wee bit tough with all the Tregal-Dull in the system). But I check and read almost everything at least twice a day.

Thank you,

Jenny

15

Haha KC! We need a system fixer along with the bed builder. I know it’s hard for us to understand each others systems (Canada/USA). Seems we all have some pluses and minuses. Right now in Canada we are experiencing a disgraceful wait time for some surgical procedures but we are all covered and don’t have the insurance middleman. />


Kc Dancer Kc said:

Do you guys need a bed builder.? I was in ICUS one nite and hospital room one night… I’m glad u r getting closer!!!

16

Hi Ladies,

Just to follow up I got the call for my MVD for July 19. Just got home from my pre-op appointment and have my wrist band on. Makes it feel very real!

So glad this is happening, switched meds two weeks ago and the new ones aren't keeping up with the pain right now.

J

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Pleased for you!!
perfectly normal to be nervous…that was the worst part of MVD for me…the 3 weeks before my surgery. I hope you know, I’ll be thinking of you that day.
Sending positive vibes for a successful surgery & recovery!
(( hugs )), Mimi xx

18

Hi Jenny

Wow, I’d be nervous too. It must feel kind of surreal real. Out of curiosity, what are the meds you’ve been switched to?

My thoughts and prayers sure will be with you on Friday. Are you going in the morning?

I’m nervous just thinking about my consult with new hotshot NS on Aug. 6 ( still wishing it was with top-of-his-game NS Dr. Honey…I know you were hoping for the same thing.)

Big Hugs
Wishing and praying for super outcome and speedy summer recovery.

Peace and Happiness
Bellalarke

19

Just got bumped to Monday July 22...geesh!

20

Oh geesh indeed. One more weekend to go…and I hear it’s really hot up your way. Hang in gently.