Surgery scheduled for 7/14, feeling strange

[Valkry]

Well the big MVD day is scheduled for 7/14. I'm feeling confident about my neurosurgeon and the hospital I'll be treated at, both are highly respected.

I've had TN only since mid-May. The attacks were almost daily and lasted for about 5 weeks. Then, either the medicine (neurotin) started working or I went into remission. I hate the neurotin, made me tired, depressed, gave me headaches, crashed my car falling asleep at the wheel. I slowly took myself off the medicine and feel OK now.

I made the decision to have surgery due to the facts that 1) TN pain was unbearable 2) I didn't want to have to go from one drug to another for the rest of my life or have to continually up the dosage while trying to manage the pain.

So, I decided to just treat the problem and get on with my life. Did a lot of research and chose MVD. Vascular compression was confirmed by two sets of MRIs and two neurosurgeons, one who specializes in skull based surgery the other is a vascular neurosurgeon.

The surgeon also believes I might have Geniculate Neuralgia as some of the attacks were centered deep in the ear and left me with tinnitus.

So, I guess what I feel strange about is that I haven't suffered very long with this illness and now that I'm in remission I feel fine but I'm scheduled to have surgery. It seems a bit crazy to have surgery when you're feeling OK.

My surgeon doesn't think I'm crazy (or he wouldn't do the surgery) he just thinks I'm taking a preemptive strike to an illness that will come back.

Its easy to think TN will never come back when you're in your first period of remission.

Sorry for the long post. I guess I'm looking for comments, moral support, suggestions, ???

Thanks all.

[Fizzbw]

Heya,

I can see that that is a difficult choice and position to be in - I don't envy you. But if you are sure of the route you are taking then that is the right one. It's only a period of remmission after all and will come back.

I had my first surgery after 6 months of it starting - no remmission at all, but a clear compression. The surgeon was confident it was the best treatment for a young person who was anxious to be back at work and life!

Best of luck with it - the biggest downside to having an MVD during a remmission is that you won't have confirmation of success - you may be waiting for an attack hoping it doesn't come for a while. I'd be inclined to talk to your surgeon about this aspect of it for reassurance.

Niki x x x

[Valkry]

Hi Niki,

Thanks for your post. I guess most of us are in a position of making difficult choices; drugs that may or may not work for how long?? or surgery that comes with its own set of risks and potential side effects.

You mentioned your "first surgery". Did you have a second MVD?

[Fizzbw]

Oh heck - I'm a pro on difficult choices - but you usually know when its the right thing to do, or rather once you make the decision you commit to it come hell or high water.

I've had three MVD's, one Pulsed RF and am soon to have motor cortex stimulation - its my aim in life to be the case of a lifetime for my surgeons.....

seriously I'm buggered, its no reflection on the condition.

You will let us know how you get on won't you?

Niki x x x

[ella138]

Obviously, I can't decide for you, but I have always been of the mind "if it ain't broke, don't fix it". I know the pain of TN is horrible and I know only to well that the meds are no better, but what's the rush? If you are in remission then why have such an invasive surgery and take the risks that come with this surgery? Is there a reason your surgeon can't do the surgery if and when the TN returns? No one has a crystal ball, but hey...YOU'RE IN REMISSION! Is the surgeon sure you have a compression? Did he see it on an MRI or is he just assuming this because of the pain? Ask him if there is a reason you can't book it at a later date, if it comes back. Sorry I'm not being supportive of you doing the MVD in your situation, but I just can't justify drilling into your skull and moving your brain and playing around in an area that is very delicate when you don't really need to right now. Hope I haven't made things worse for you by piping in.

[Valkry]

Hi Ella,

No worries, its always good to get different opinions.

As mentioned in my original post, 2 MRIs and readings of both of those with two neurosurgeons confirmed a clear compression. In addition I had an audiogram with reflex and tympo done which showed slight hearing damage and lack of reflex on the affected side. The surgeon I'm having surgery with suspects other nerves are affected (Geniculate Neuralgia) due to the deep inner ear pain, tinnitus, hearing loss and negative reflex. (did I mention that I'm an audio systems and acoustical engineer, so my hearing / career is being tampered with).

So, I am "broke" so to speak.

Its not the surgeon who doesn't want to wait, its me. At the end of August my daughter goes back to school and I go back to working two jobs, one as a senior level engineering consultant and the other as a college professor. During the fall I work 70 hour weeks with approximately 25 hours of drive time per week and a child to take care of. Not a great time to either have an attack or fall asleep on the meds. In the spring I go back to having only one demanding job and a child to take care. This leaves me with waiting until next summer to have a "clear" shot at getting surgery. So, I was a bit worried about playing Russian Roulette between attacks and meds waiting for my next surgical window to open.

Also seems that there is a lot of medical evidence that states there is no "if" when TN pain comes back, it is always "when".

UCSD's website even mentions:

"An Alternate Strategy

Instead of waiting for the pain to become intractable or the medications toxic, an individual with trigeminal neuralgia has the option to request early surgery. This has a number of potential advantages:

* Avoid years of medication and intermittent pain
* Avoid facing surgery when old or infirm
* If the person has a vascular loop, early microvascular decompression will increase the possibility of a successful operation with decreased risk of recurrence (evidence suggests better outcomes and lower recurrence rate the shorter the interval between onset of symptoms and nerve decompression)"

Again, its always good to get various opinions of one's situation as it will either make you question or strengthen your choice. Either one is good.

Thanks for your input.

[ella138]

I see you have thought this thing through from every angle. Good for you for making yourself as informed as possible. Good luck and keep us posted.

[1Lily]

I agree - good luck, you do sound like you have made an informed decision, and maybe you just needed to think it through out loud. We're a big family here, so please stay in touch and let us know how it goes.
Lily

[JeanC]

Like Ella, I was going to suggest waiting a bit to see what happens, but wasn't clear that the GN was so active and wasn't aware of the impact on your career. It does sound like you've done your research, so go for it! We'll all be thinking of you and sending good thoughts your way next week!

Is your surgeon at UCSD? Dr. Alksne? Or did you find someone in LA?

Wishing you and your team the best and an easy and speedy recovery.

Hugs,
Jean

[Valkry]

Thanks Jean,

I appreciate your, and everyone else's comments. I had looked at having the surgery at UCSD but the proximity to my home north of LA would have been hard on my family and I knew I could find a good doctor here in LA. I choose Dr Schievink at Cedars Sinai. He is the director of the microvascular neurosurgery department and specializes in several vascular issues of the brain along with cerebrospinal fluid leaks.

So far I've been very happy with him and his staff, who have been both informative and supportive. Like UCSD, Dr Schievink and the staff at CS agree that in younger, active people there is a compelling reason to go for MVD right away to save years of experimenting with medications and the distinct posibility of having the pain return.

This is obviously not the correct route for everyone. My husband and I met with Dr Schievink and his surgical assitant for about an hour to discuss all the options, my experience with the medication I was taking, what my life is like, my expectations for surgical outcome, risks, etc, etc. I've even spoken with his surgical assistant further over the phone to continue to ask questions. She told me they treat many people like me; first attack, hate the medication, understands the risk of surgery, wants to get on with their life. I felt a lot better when she told me that. I felt a lot less "crazy" for my decision.

I think I am a lot less nervous about surgery than some folk because I've undergone many surgeries in the past (all "disposable" organs are gone, emergency c-section, septoplasty, knee and shoulder rebuild, etc) and I know that carefully choosing the right surgeon and best hosptial really lowers the risks involved. I'm an engineer, we're anal that way!

Anway, sorry for the long post.

I would like to post my pre-op prep and post op in hopes that it will help others.

Take care and I hope all of you are having a good day.

Cheers,
L

[Grant Howes]

Hi,

I hope your MVD went well and you'll be able to post soon!

In the mean time, rest well!

Best wishes,

Grant