hello all I've missed you!

[gidge]

Hi everyone, boy have I missed you! I tried several times to get on the site after it was back up but couldn't log on, have now finally re-registered and here I am.

Hope you are all doing ok, I am still recovering from my MVD and disappointingly am still on tegretol :(

I tried and tried ( so many times can't count) to decrease but each time the pain would return and was unbearable, finally my GP said to stop trying to decrease as it made no sense since I was having breakthrough at my current dose and it just seemed to be making matters worse and I would see the surgeon in a month or so anyways and we could re-evaluate then..

this was very hard emotionally I felt like I was failing and that there should be something more I could do, my GP has to keep telling me over and over again that this is not something I can control and that it's not something you can "work harder at"...everyone heals at their own rate and it's just a "wait and see".

then about two weeks ago all heck broke lose at my current dose and the pain just wouldn't quit so after trying hard to endure for over a week I went back to the GP and we agreed to increase my tegretol by 50mg....again I feel like a failure and am super sick from side effects but slowly the pain is getting under control....at this point I have been able to reduce my meds twice since surgery and that is it....all the same some improvement is some improvemnt right?

I see the surgeon again for follow up tomorrow and terrified he'll find me a failure...I feel like I should've done better but I can't control this darn pain and believe me if I could be off this darn med I would the way it makes me feel and the things I do, first I put my hand in the garborater while it was still running and then a few weeks ago I grabbed my flat iron thinking it was off to put it away and it was still on.....2nd degree burns on my hand...

oh and work called to see if I had a date when I was coming back, not "how are you" just when are you coming back (this is after 9yrs of dedicated service) and I had to say I had no idea because I don't and they have hired someone to fill my position now.....apparently they cannot let me go while on sick leave but I just don't know what to make of it all and there is nothing I can do I can't work the way I am between the pain and the meds I'm a walking disaster zone!

well I think that is the update for me, I sure hope the surgeon is helpful when I see him because my neuro was flaky as heck when I saw him and doesn't want to see me for a year! In my OR report it says that the same scar tissue that was all over my 5th nerve is also all over my 7th and 8th nerve but it was left I wonder if it would help to remove that? Anyways I've missed you all and would love to hear what any of you think about how it's going for me and am sending big hugs to you too!:)

[Silver Swan]

you are NOT A FAILURE!! Forgive my raising my voice, but you have to realize that none of us are in control of the outcome of any surgery.

I am sad that you are still having TN pains and hope that things will improve for you and I know that everyone who reads your messge will feel the same.

Big cyber hugs to you, very carefully of course!

Shirley H.

[baywatcher]

gidge, I've missed you and been worried about you, this has been such a long time and I was hoping that you were ok. So your post brings us all up to date, and as you know we will all be pulling for things to improve. It's ok to feel disappointed, as you must, but for heaven's sake just erase that word failure. That would be like me thinking I'm a failure because I can't hold a 75# barbell out in front of me and leap up into the air! Heck, my daughter can - so why can't I? No, life just happens to us, the good and the bad, the deserving and the innocent. And you do deserve better, on a better timetable, but hard as it is to be patient maybe that's what it will take. Don't let your doctors off the hook, (see you in a year? yikes), you aren't in this alone.

Keep us up to date, now that you've found us, and watch for all the huge cyber hugs headed your way. Nancy

[ella138]

Hi Gidge
Am I ever glad to hear from you. I have been wondering about you and asked around if anyone had your email, but no one did. Anyway, I think you are using the word "faliure" out of context. Your surgery may have been a failure, but YOU CERTAINLY ARE NOT A FAILURE!!! You did not take a test that you failed at. You are simply a person trying everything in her power to resume a normal life and in my books that makes you a WINNER! You are very brave. You did this very scary surgery totally on your own, you recuperated while living alone, you are someone to be admired. Stop being so hard on yourself. If the surgery didn't work to your expectations then ask the surgeon tomorrow why and what your next step should be. Ask if there is still a chance you are not finished healing and is there a possibility it could still get better. If not, ask him if he thinks you might do better on a med other than Tegretol. There are so many choices out there these days, if Tegretol doesnt agree with you, maybe there is something that you could tolerate better. In any case, I'm really glad to hear from you. Let us know what the surgeon says tomorrow. You're a real trooper!

[gidge]

wow that was close I had to try three times before my log in would work, I was afraid I wasn't going to be able to get back in here! Wonder what that was about?

thanks so much for your replies I really appreciate it and it means alot to have your support and to talk to others that have been through the same sort of thing!

I have tried all the other meds that I know of so far and am very sensitive to alot of meds and had reactions to them all, in the end tegretol was the only one I could tolerate that worked for the pain.....as much as I hate it, at least I have one that works and I am greatful for that I just wish it didn't make me so darn sick, I'm going to ask tomorrow if he knows of something else I can take for the nausea, I take gravol with it and it helps but I am still nauseated on top of it , can't tolerate Maxeran and my GP says he isn't aware of anything else??

I am going to try and go in there tomorrow with my best attitude and just tell him like it is, like you guys say it's not like I can control it, I din't feel quite so bad until my neuro appt and all he kept focusing on was that he didn't think I had MS (his speciality) and that I needed to decrease the tegretol....which I couldn't/can't do as pain allows...and that he'd see me in a year...it was a super frustrating appt and that is why my friend is coming with me to the surgeon tomorrow so if he gets flaky like my neuro she will be there to help me vocalize how I feel, it's so hard on the meds to get your point across sometimes plus you forget half of what you want to say!

well wish me luck, very happy to hear from you all and know I'm not alone!:)

[MarleneW]

Gidge,
It's good to finally hear from you. So sorry you still aren't feeling so good.
It's so disappointing, isn't it?

Since I have heard from you last I had another surgery. As you might recall I had 2 MVD's in 2003 and 2004. Both of those surgeries failed , after the first surgery I started to get pain from the base of my skull up to the top of my head,so in June my surgeon decided to do a decompression of the occipital nerve as he diagnosed occipital neuralgia also. When he got into my head he said he knew it would also be a failed operation as I had too much scar tissue to decompress all the branches of the nerve that was involved. The branches that he couldn't decompress he severed. The numbness that it caused was very painful. At times it felt as though there were fireworks going off inside my head. On September 21 I had a surgery called a C2 ganglionectomy, I guess this is an operation of last resort for occipital neuralgia. This operation requires a c1 and c2 laminectomy. That is they remove the bony part of the vertebrates then they drain spinal fluid and actually go into the spinal cord and dissect the branches of the nerve then they actually remove the nerve root. There is no chance of the nerve growing back. There is research done that this surgery may also help trigeminal nerve pain as the trigeminal nerve has 3 nuclei and 1 of them is big and it actually intertwines with the c2 nerve root. It sounds complicated but it was worth a try.
The muscle spasms after the operation are **** as they have to strip the neck muscles away from the spine. This was the most painful operation I ever had, but with muscle relaxers, neurontin, valium, and lots of heat and ice, my face hadn't felt so good in 6 years. But two weeks ago it all returned along with more pain in my forehead area that I had before. The pain in my head also returned, and now it feels like needles are sticking all around my ear. I haven't been allowed to lift more than 5 lbs., not allowed to lift my arms out in front of me or above my head. No house work,cooking or anything until I see my surgeon on Nov. 1. He said then we would see. I have to start rehab for my neck in 2 week to try to get some range of motion back. This is all so hard with 3 kids, but they have been wonderful.
Just wondered if any of you have tried baclofen. I am taking 60 mg. a day.It just makes my so tired, and I don't know when I will ever be able to quit taking it. I am trying to cut back on the valium, I haven't had any for 2 days, I felt better when I was taking it though.
Didn't mean to depress anyone with all this, but Gidge I certainly do know how you feel. You try anything to try to get better and it's just so disappointing when you try your best and it doesn't work. I feel for you , I try to keep thinking there is always tomorrow on our side. Some day someone will figure this thing out.
Marlene

[gidge]

well it just took me 3 tries again to log in....very odd!

Thanks Marlene for sharing that....boy you have been thru it haven't you? I pray that things get better for you....what I've been doing is just getting thru one day at a time.....yes I've been doing it for 15mths now, while waiting for surgery and now recovering from it and it blows my mind when I think so much as changed in other people's lives while mine has been at a standstill....but there is nothing I can do to change that, we get what we get and we just have to try and get thru it right? Someone told me once that "life is hard get a bloody helmut"....now I know why you need the helmut at least!

when the nausea and the pain gets too bad I work on getting thru the hour and if that doesn't work I get thru each minute....it's all we can do....I just pray that my surgeon understands how hard I've been trying to decrease my tegretol and get better but "trying super hard" doesn't seem to have much effect on this condition!

I did take baclofen prior to surgery when the pain would get bad plus I was having little spasms under my eye on the TN side...it did wack me out even worse but stopped the spasms....haven't had a spasm since the MVD....at least there is that!!

that is my other thing I need to take care of I need to find a neurologist that deals with TN mine is mostly a MS doc cause we thought that's what I had at first...but here in Canada I could wait 6-12mths just to get in so I"ve been waiting until I see the surgeon to see who he suggests.

well I'm off to bed and scared to death about tomorrow...think good thoughts for me everyone, I'll keep you posted...sure hope the problems I'm having loggin in stop!!

[macy]

Dear Gidge,
Sorrry to hear the He*L you are going through. I have not had any surgery, but I have have had my share of Medication adjustments and I know each time I have had to increase it I have gotten depressed. Sometimes Tegretol alone just will not work no matter how much we take. I was put on Lyrica in July along with a small amount of Tegretol and it has worked miracles. I was having breakthrough pain several times a week. I have not had a twinge since going on the Lyrica.If you have not tried that one ask your doc about it. And oh yes, you need a new Neuro for sure.
As for the Nausea, that is my specialty. I have Vertigo and it seems I have spent most of the past 20 years with my head in throw-up bowl and most of the anti-nausea drugs have stopped working for me. This past week I saw a wonderful doc in the ER who prescribed ZOFRAN. My insurance company put up a fuss because it is so expensive, but they finally approved it. WONDERFUL stuff. Stopped my nausea almost immediately (it had gone on for 8 hours that day). Zofran is for cancer patients who have nausea from taking Chemo. But if your doctor will insist that you need it or you will be hospitalized you should be able to get it. I have only had to take one this week. It makes me feel good just to know I have it.
Now about you being a failure. That is not true. You need to get that idea out of your head. It is not your fault that the surgery you were brave enough to undergo did not stop the pain. If you need more meds take it. Just stay away from things that can hurt you. I was the same way when I took a lot of Tegretol. I once put my shoes in the fridge,. Its funny now, but at the time it frightened me to death. But the most important thing you need to remember is: Stop the pain.We all worry too much about taking the meds when that is the only thing that will help.
I hope one day soon you wake up pain free. You deserve it after all you have been through. I am too chicken for the surgery and most of the doctors think I have too many other health issues anyway. + my age is a consideration.
Sorry I did not mean to go on and on. Just wanted to tell you about about Lyrica and Zofran. Good Luck to you.
Macy

[sharralin]

Gidge,
Sorry you are disappointed with surgery results. Some good yet may come of it. For nausea there is compazine and phenergan. But, the gold standard is ZOFRAN! If you cannot get the zofran, there's another one, older, also used in chemo, that is also very good, KYTRIL. They are both about $50 per pill, hope you have insurance or medicaid. Good luck, I'm sending you good wishes,
sharralin

[stefanies]

Reglan as well...it makes your stomach empty faster. But Zofran is the best. It's $35 a pill in the states, but my insurance covers it. In fact, I just took one! Love that stuff. Only pill that works for me.
Good luck and don't be afraid to ask for meds!

[gidge]

hello everyone and thanks for the info on nausea drugs I'll have to see if we can get those here in Canada??

Saw the surgeon yesterday and things didn't go as expected...while he feels that things could still improve his general impression at this point is the MVD failed...I was very shocked because surgeon's never want to admit these things and he had just told me at last appt that it could take a year....unfortunatly the minute he said that I kinda lost it and was not of much use after....:o

the scar tissue that is on my 7th and 8th nerve that is ALSO being impinged by the AICA artery he says not to worry about as those nerves don't cause pain...and I was sure that some people I have read about had something done to theirs....and while he is sure the scar tissue he removed on my 5th nerve has reformed since he put the teflon in it he is sure it should be ok....so he doesn't recommend a repeat MVD.

He said the only other option would be the rhizotomy but he had told me in my very first appt he did NOT recommend that for me because most of my pain was in my eye....and he now says that we could do it my eye would be numb but we could do it....so I said that I had heard of so many failed rhizotomys and bad outcomes with anesthesia doloroso that I wasn't comfortable with something that might make me worse and he said that I had all my life to think about it, at least until he retired and that is was certainly my decision whether I wanted to manage this with meds or surgery.

he asked how much tegretol I was taking and how I was feeling before we discussed this last bit and I told him and he said "so you are disabled by this" and I just looked at him I was so shocked and he said "you are disabled by this you can't function normally" and I said yes I won't even use the phone after lunch because I never know what I'm going to say (but I have been like this for a year why are you saying it now? but I pray it makes it to my letter to my GP because his opinion is important)

he wants to do another MRI he feels that my double vision and tremor (which he didn't want me to demonstrate this time) and numbness in left leg and arm plus the fact the MVD hasn't worked so far is very MS reminicent (my Mum has it) which isn't to say I have it but they will screen for it when they do the scan and they can also look and see if anything has changed since the MVD...he didn't say he would bring me in after the scan but my girlfriend that went with me seemed to think that was the case....he said to think about my options oh and then I rememberd to tell him that it's all itchy around my ear and incision still under the skin and he said "again you are very unique most people don't have that after the first month or so , so.. maybe you are still healing"

I asked about seeing another neuro for TN as my guy was MS and he said "what for? and I said to manage this as it seems to be ongoing and he said "I'm your neuralgia guy, stick with me" which I found odd for a surgeon but nice...so then I asked about nausea meds and he said "well I'm not a nausea dr but there are some stronger meds I could recommend in my letter to your GP" so...wants to be my nueralgia guy but doesn't want to prescribe......I'm more then confused at this point.

so I guess at this point I wait for the scan and pray that I still get better I asked about still trying to decrease meds and he said only if I was feeling great and it didn't cause me pain....I don't know what I tell work etc I guess I will wait for his letter to get to GP and speak with him?? I am sad today and confused I am getting so much conflicting info from him and he is the best in this part of my country! To get a 2nd opinion I will actually have to leave the province to see the only other guy that knows more then mine? And then I don't want to tick my guy off by doing that......I just wish he hadn't of said he thought it failed..I really didn't expect that one:(

[MarleneW]

Gidge,
So sorry things didn't go as you wanted them to. But maybe he is right and you are still healing. I didn't realize how long things really take to heal until after my last surgery. My head had to be put in a Mayfield clamp to hold it still and in one spot i had 9 staples from where the screws went in and that isn't even healed up yet. And then to think what it must look like inside after they get done doing what they need to do, I think sometimes we expect too much too soon. It's so hard to be patient though.
At a support group meeting I went to Dr. Casey said he went to a conference one time with a lot of other doctors and one of the doctor's said he couldn't understand why patients complain so much on these drugs. Dr. Casey said why don't you try just a low dose sometime and you will see. He said and maybe you should take a few days off when you try it. I think that is the problem a lot of physicians have, is if you haven't been in the patient's shoes how can you know?
Thank God for this forum because I for one don't know what I would have done without it. At least here you know you are not alone, and you can always find someone who has walked in your shoes.
I will continue to pray for you and hope you will find some answers soon.
Marlene

[gidge]

thanks Marlene yes I agree the neuro's should have to try the drugs then they would know what it's like!

I'm going to try and keep my chin up, see my GP this week and talk someo with him about it and wait for the scan.....I forgot to tell the surgeon that I was having this burning feeling in my cheek lately too.....

hang in there and I will too!

[gidge]

just as an afterthought...I know my surgeon has said my case is unique due to the scar tissue that was all over my brain (due to possible childhood undiagnosed meningitis) but I wonder if I'm starting to sound like a "atypical TN case" as opposed to "'typical" and would that change anything?

I guess I"m just having a hard time accepting that my MVD didn't work and am now dealing with a possible lifetime of "this" and am sstarting to think ahead, any help would be appreciated and hope some of this makes sense as I"m typing at night which I try not to do as I take more tegretol then and don't make sense sometimes!:confused:

[ella138]

Saw the surgeon yesterday and things didn't go as expected...while he feels that things could still improve his general impression at this point is the MVD failed...I was very shocked because surgeon's never want to admit these things and he had just told me at last appt that it could take a year....unfortunatly the minute he said that I kinda lost it and was not of much use after....:o


Hey Gidge
I know how devastating hearing it out of the surgeon's mouth must have been. You waited for so many months and put all your hope into this MVD. It was your hope for putting this horrible chapter in your life behind you. By him actually verbalizing it, it brought it right back home, to square one where you started. There is no doubt that you have to take time to absorb everything he said and to think things through. Once that is done, you (along with you doctors) will come up with a new, better, more individualized plan of action. Now that you know a few things, like the scaring from your childhood, at least you and the doctors have a better idea of what you're dealing with.
One important thing that came out of your appointment is his recognition of your disability. Maybe at least now you will be able to put this whole work thing, that's been hanging over you like a lead weight, to bed. I think it's appauling that you have to deal with your work politics at the same time you are trying to cope with just getting through every day with the least amount of discomfort as possible. Hopefully, your GP will act on that.
You are most likely more atypical than typical, seeing as that they found all kinds of other issues in there. All that means, is you have to keep looking for the right answer, maybe a different combination of drugs, maybe something alternative like acupunture, maybe neurostimulators. The point is, you are not at a dead end and there are still things to try to get that quality of life back to a decent level. Lots of (((((((((cyberhugs))))))))))) form the other side of Canada.

[gidge]

thanks Ella....geez the site is doing some funny things I just had to log in 3 times again to get in and then I started typing my response to you and then it went out again and came back to a clean page like I reset the fields...?

I agree with you , I have spent this whole last 15mths waiting to have surgery and telling myself it was going to work and all was going to be well again and then having the surgery and recovering from it telling myself the same thing, even when I saw him last time he said it could take up to a year and then to get whalloped with it in this last appt I wasn't expecting....but he did say at the end of the appt when I told him my head was still itchy under the skin all around my ear that "you really are unique most people don't have that feeling at all this far out maybe you are still healing...I have to believe there is still hope.

I've really had alot of anxiety and been upset for the last few days because my brain is trying to accept the fact that I have now had brain surgery and it has possibly failed...what does this mean, where do I go from here, my friend keeps telling me that nothing has really changed except now I'm having another MRI and we go from there to try and bring it down to there...and I am worried about what sort of update I give work and and she said that I have been far too kind and helpful where they are concered giving the temps phone support and to just not worry about it for now and to concentrate on me and not being stressed about this!

I'm going to wait a week or so and then see my GP and see if he has received the letter from the surgeon and talk to him about it all...like you say at least he is recognizing that i am disabled by this situation and maybe this is when we let work know that and at least get that one huge worry off my back the fact that they have continued to bug me all things considered has always blown me away!

thanks for talking with about this you all, it really has thrown me for a loop and I hope I make some sense I just never expected this , I knew it could happen but did'nt expect it! I need a pile of cyber hugs so thanks for yours Ella!

[RStapler]

Welcome back Gidge and Cherie. Good to see you here.

I have the same problem with logging on, but persistence always gets me here. I find I can get past the login faster by hitting the "Check here if your browser does not automatically redirect you" link. Probably has something to do with cookies or certificates.

Bob S