Found My Way Back but Not With Good News

[Rudy's Mom]

Hi Everyone. I found my way back to the original Brain Forum, but I don't have good news to report. As those of you who have been reading the other Forum know, my MVD was not successful. I had it done May 30th after a failed Gamma Knife on Feb. 22nd. I saw the surgeon today, and he has scheduled me for another MVD on Nov. 13th. He said that when he got in there the first time, the vein, nerves, and artery were all tangled together. He had trouble keeping the Teflon in place. Perhaps the Teflon has shifted and is causing the pain again. If this isn't the case, he said they would check everything over and maybe "beat up" the nerve so that it will not cause as much or anymore pain. They don't like to completely sever the nerve because of the extent of the numbness afterwards. He said I have not been the "text book" case from day one. My pain never went into remission, and the meds only help a little. I do have a lot of faith in my surgeon, but I have to admit that I am really scared of having the surgery done again. The first one left me with double vision and loss of balance. I walked with a walker for over a month and just started to lose some of the double vision within the last couple of weeks. Any encouraging words will be greatly appreciated as will your prayers. Thanks to everyone for all the support you have shown me in the past too. Sheila

[gidge]

Sheila you know I am rooting for you and am so sorry that you have to go through this again...I like you have been told my case is "unique" but my surgeon will not consider going back in because all I had was a few smaller veins pressing on my TN nerve...the big guy is on my 7th and 8th but he says they don't cause pain...??

hang in there and know we are all here for you and praying for an excellent outcome, the good news is he is doing it soon although I"m sure you are very busy trying to accomodate that happening so quickly! (PS hope this all makes sense as it's late in the day for me for meds and sometimes I just prattle one!)

remember I'm rooting for you!:)

[EE03]

Shelia, I wish you didn't have to go through this all again but perhaps you'll have a better outcome and it will all have been worth it. Big hugs to you and I'll be rooting for you all the way!

Hang in there, Ellena

[jenlw]

Hi there,
I'm so sorry to hear that both of your surgeries were unsuccessful. I know how you feel, although mine wasn't as major as your it's still so disappointing, especially when you really think it is going to work. Stay strong and try to stay positive, I wish you the best of luck for the next one. We are all behind you 100%
Take care,
From Jen

[Fizzbw]

Heya,

I'm a "recalcitrant" case as well, ditto with the meds and the surgeries. I've just had a teflon removal mvd which might have worked - the teflon was certainally distorting the nerve root heavily. Worth considering?

Most important of all - regardless of treatment options - get yourself on a pain management course, preferably residential - I'm a different person than I was 18 months ago thanks to this, and in general my pain is worse - but I'm working on getting an ordinary life back!

Talk to me soon about it, I'm still bit dozy post op at mo, but think on it!

Niki ***

[MarleneW]

Sheila,
I'm sorry your operation was not successful, and I know we are all different but my second MVD went a lot better than the 1st. Beside a very plugged ear there didn't seem to be as much post-op to go through. Hopefully this will be true for you also. My thoughts and prayer will be with you.
Marlene

[irishchick]

Sheila, I hope this one has a better outcome for you than the first one! I remember my surgeon saying sometimes just fiddling with the nerve did the trick. My MVD took 6 months to work, but work it did. I will be thinking of you!
Karen

[JeanC]

I saw the surgeon today, and he has scheduled me for another MVD on Nov. 13th. ...

Hi, Sheila,

Just wanted to wish you well on your surgery and hope your surgeon can get things straightened out and relieve your pain. You take it easy and be good to yourself and come back when you're able - we'll hold you in our thoughts till then.

Best to you!

Jean

[argye]

Trust your instincts! Most definitely get another opinion. Also ask your surgeon why he didn't massage the nerve when he saw all the tangles, because massaging the trigeminal nerve would have brought you some temporary relief from TN. Finally, I would ask the surgeons what are the chances of your developing Anesthesia Dolorosa after so much surgery.

I had a severe TN attack at the beginning of June and now I am almost cured, about 95% cured, without surgery. Two neurologists and an ophthalmologist strongly recommended an MVD, but I knew that I would recover without any surgery, and I did.

Argye

[Silver Swan]

Hi friends:

E-mail last evening from Sheila's friend Barb. Sheila was still in ICU and doing well. Getting morphine drip and having nausea. Again, the doctor said things went well. One hour of surgery. Barb will keep me updated and I will post whatever comes to me.

Thanks for continuing to pray for Sheila. She is having considerable pain after surgery.

Shirley H.

[Silver Swan]

HI everyone:

I am waiting for another update from either Barb or Jean who are two of Sheila's friends. As soon as I get an e-mail I will post the information. I am assuming that "no news is good news".

Shirley H.

[jaztsd]

Sheila - sending positive thoughts your way, and hope you're doing better!

Love,
Jan

[Silver Swan]

Here is the e-mail from Barb that I just received at 5:42 Central time:

Hi Ladies:

I talked to Sheila this morning! She sounded like herself but a little shaky. She had been very itchy from the antibiotics; this morning they finally gave her some Benedril. She was so happy not be be itching.

Clear liquids today but they promised something a little better for lunch. She was out for a walk yesterday and was scheduled for another this morning. Indications are that she should be home this weekend. Her kitties miss her and she misses them.

I sent along all your good wishes and prayers along with others from around here. My Mom lit a candle for all day Monday. She has great support.

Tom and her son Kevin have been here all week. They are still staying tonight - may come home tomorrow night. They sounded tired too.

Thanks for all your notes and good wishes. I know she can't wait to get back online.

Barb

P. S. this took 2 tries - my cat, Katie, was rubbing up to me and turned off the Internet connection.

[ella138]

Thanks for the update Shirley, It sounds like Sheila is recovering quite well, considering all she's been through. She'll do much better at home in her own bed with all her family and friends. Love has a way of healing. Hope this surgery worked for her pain. I noticed barb did not say a word about that. Wonder what that means :confused: :confused:
Give her our love and let her know we are thinking of her.

[Silver Swan]

Hi Ella:

I wonder if it is too soon to tell if Sheila's TN pain has been taken away? would she still be taking meds for the surgical effects? I don't know. Hope I will hear soon whether the TN pains are gone.

Shirley H.

[Silver Swan]

E-mail from Sheila's friend Barb - Sheila got home about 7:30 last evening. She is very glad to be home. Barb said Sheila was very quiet on the drive home and maybe was having pain and didn't want to worry anyone.

Her darling dog Rudy is so happy that she is home. The kitties too, no doubt -Sheila has five kitties and they are all so beautiful.

Hope Sheila can be on the Internet very soon so we can hear from her in person how things are going. In the meantime, continued prayers will be wonderful.

Shirley H.