MVD Scheduled Nov. 22nd

[Robyn6447]

Hi ya'll! Some of u may remember me from a year ago. I'm afraid I haven't been on here even looking much this past year. My husband left me for another woman and part of it was because of this horrible disease. U know, not much fun, can't plan anything cause u never know how u will feel that day, sleep alot from the meds etc, etc. Anyways because of the stress maybe my pain escalated really bad. My gp and I ran out of meds to try. Even narcotics. It came to a head one day not long ago when I told my daughter that either something happens or I was going to kill myself because I couldn't go on and on with this pain. I had had 3 nerve blocks and they did absolutely nothing for me except have me in agony during the procedure and I mean agony!!! Then I was in terrible pain for about 3 days afterward. Sooo I decided to bite the bullet and have the "surgery" I knew Pittsburgh was the place to go for me and we (gp and myself) got things going. He called and got me in 5 days later. I met with Dr. Horowitz at the University of Pittsburgh. I read his bio and he worked under Dr. Peter Jannetta for 6 years. As those of u know he is "The Man" about mvd surgery. I feel very comfortable about that. He works with Dr. Kassam now. He told me I have atypical which I already knew. The percentage rate for success is only 40% for this kind and after a 5 year follow up only 35% of those were still pain free. But u know I have to have faith I will fall in that group. He said if the mvd fails then they can try experimental procedures after that. He said like the motor cortex stimulator. Instead of being afraid of the surgery as I was before, I had swore I wouldn't have it. I am so excited and can't wait to get it over with. To be able to talk to people without being in pain from talking, having to cover my ear up whenever I go outside and not having to take these stupifying drugs would be a Godsend. Really being able to talk will be the best! I feel in my heart when he gets in there he will find arterys wrapped or lying on my nerves. It is just a feeling but one thing I have learned in this horrible ordeal is that u learn your body and what it tells you. Just a quick synopsis; I have had tn for only 3 years but it escalated very quickly and I haven't had any remission in the last two years. I have been on every anti-convulsant and narcotic under the sun with no relief. I envy those of u who have had remissions. I also pray for each and everyone that one day your pain ends and you are able to live life like it should be lived. Pain Free!!!

[ella138]

Hey Robyn
Your story is a difficult one, but you are being very proactive and you and your gp have done your homework. You have an experienced excellent surgeon and your chances improve because of that alone! Fortunately you don't have too long to wait before your MVD. If you have any questions please feel free to ask. I had mine in July/05. Hang on for a little while longer and try to keep the stress level down. Stress absolutely plays havoc with TN.

[Fraalan]

robyn I am 5-6 days post op with Dr. Horowitz.
I was a-typical with all three branches going off at different times.
I was told 60% success rate by Kassan and Horowitz himself. This may be due to your severity and extended time frame.
I was 13 months or so into this ****.
Also if you come out of surgery with some stingers or achers the first few days don't sweat it, from what I read tonight some people take 3 months to be fully healed.

Feel free to ask any questions, pm if necessary.

[southerngirl]

Sorry to hear about your situation, I know its hard for our other half's to hang in there for us, this is a horrible desease and my hope for you is that you have a great success rate and you come out looking better than going in. Then you can start your life over again, and things will look bright for you.
Many people have come through this pages from your doc's office and have had nothing but praise for him. So we know you are in good hands, so you go on the calendar for that day and will be in our prayers, until than take it easy and try not to worry too much
Catherine

[Artist1]

Hi Robyn,

I had an MVD on July 15. I was diagnosed with atypical TN about a year ago, but when I met with my Neurosurgeon he said that he suspected other nerve compressions. My symptoms were primarily in my ear. Nothing ever showed up on an MRI or CAT scan. Well, I did have a severe compression on my 7th nerve as well as a small one on my 5th. Both were wrapped in teflon, and I can say that I no longer take the horrible drugs and I am TN pain free now. Although I have a complication now, spinal fluid leak, it is still better than what I had before. I just had an MRI Wednesday to see if that needs to be fixed. As everyone has said, don't rush the healing. I think I may have brought this mess upon myself because I did feel so good, and I should have rested more/tried to work less. Listen to your body and rest!!!

I was given a 65% success rate and it did work. I did not completely go away immediately, it took an additional 3-4 weeks before I didn't have any more TN pain, so be patient.

Also, you might have a underwater feel in your ear. This is normal and goes away after a few weeks.

Good luck and I'll be praying that you get to smile and talk and be drug free!!!

Kellie

[irishchick]

HI Robyn, hang in there! I had a successful MVD March 2005, but it took 6 months to be relatively free of pain (to the point where I stopped all TN meds).
Don't stop taking your tn meds even if they tell you to, I was told to stop the day after the surgery, and I did, and major flare up. They can't assume you will be fine right away.

I don't regret my decision for a minute, i felt better the minute the appointment was booked. Life is too short to suffer in pain, if there is another alternative which you can live with. I had TN for 10 years, and was discouraged from surgery until I found this site. My neuro at the time told me people don't miss work for this condition, after I had been off for a month. Mind you half of that time was because I was so high from the meds!!

After the surgery you will have to take it easy, it throws your body for a real loop. Even having a shower was a big accomplishment.

At your pre-op appointment make sure you know what the surgeon's pain relief policy is, I was told I would be kept comfortable, only to find out after the fact that my surgeon gave out minimal pain meds after this surgery. It is specific to the surgeon.

Also make sure you will be discharged with pain meds, not just TN or nausea meds (I was sent home with no pain meds). Oh- bring a pillow for the ride home to support your head in the car. I discovered that the hard way, as we travelled over streetcar tracks.

GOod luck, I will be thinking of you.

Karen

[Heismjoy]

Hi Robyn

I also am scheduled for Nov 22.. we should pray for one another. How sad about your marriage breaking up. Do you have children? Who will help care for you after?

Martha in INdiana

PS I will indeed be praying for you each time I am overcome by anxious thoughts and fear.. as I seek the strength and faith I get from God's Word.. I will pray the same for you

[EE03]

You seem to be in good hands from all the positive feedback your doc gets. Take care and try to remain positive. I'll add you to my ever growing list of good wishes!

Please post as soon as you are able to let us know how your doing.
Ellena

[NattyNat11]

We are all rooting for you. It's time your pain ended. I had weird things all come to a head with friendships and an ex right before my surgery and let me assure you, you will come out of this stronger, more positive and hopefully pain free. Namaste. Stay positive.

[baywatcher]

Imagine a pain free drug free life. You'll be ready to move on. I'll be thinking of you, Nancy

[Jeanette_A]

Hi Robyn,

I am praying for you! Let us know how things go ok? I just signed up on this board today. I'm so glad that I found it! I'm trying to find a Dr. who has lots of MVD experience in my area (San Francisco). I'm very scared of the surgery but as I read other people's experiences (not just online text book info), I'm feeling like I may be able to do it. It's got to be better than this TN pain.

Good luck.

Jeanette

[Robyn6447]

Hi everyone, I want to thank each and everyone of u for the kind words and thinking of me as my big day gets closer. We leave tomorrow for Pitt. My pre-testing is Tuesday morning so we will spend the nite tomorrow. I am having to rent a short term apartment for the 12 days I am having to stay there. My friend and my daughter with her 2 children are going and we need the space for all of us. I think it's crap that my insurance will not pay for housing even if the dr. orders that I have to stay 7 days after I am released from the hospital. So just another added expense I guess. Renting the apartment is actually cheaper than a motel. Anyways thank u once again for keeping me in your thoughts and once I am up and about I will post an update on what is going on with me. Take care and please be pain free for the holidays.
Robyn