More surgery (2) needed for me.... NEW UPDATE !!!post 42

[Maya & Inka's mommy]

In March this year the surgeon removed a hernia on my spine, which got a nerve pinched. Our hopes was that the freed nerve would heal and give NO more pain.....
It is 5 months ago now, and that nerve is hurting more than ever. I've even tried out a new promissing medication; but no use again. The only way to treat this pain is surgery called SCS (=Spinal Cord Stimulation).

Let's explain this a bit. SPS is a medical therapy for people who suffer from a certain type of chronic pain. A small implanted device is used to generate tiny electrical impulses : these replace the feeling of pain with a tingling sensation. This is NOT a cure for the pain: the objective with this therapy
is to reduce pain to a manageable level.

So I will get surgery on september 5th : I will receive local anesthesia, and then my doctor carefully inserts the lead (a special insulated wire) through a needle in the mid-back.
http://i4.photobucket.com/albums/y144/berlut/ssst7.gif
During the screening test, the doctor or nurse asks questions about the location and intensity of the stimulation, or tingling sensation. This is the reason why I have to stay alert during this operation.This process continues until they have found the best pain coverage.
After the lead is inserted, the test period may continues for 1 month. The screener, which is still attached to the implanted lead, is sent home with me. During this time, I will test the system by adjusting the screener to meet my pain management needs.

After this trial period, I have to get permission from the National Health Service. This period mostly takes from 1 to 2 months; The shocking thing is that during this waiting period, the device will be unplugged. This means that the pain will come back , even more intense than before :eek: .

Then during a 2nd surgery, the surgeon implants a non-rechargeable system which uses a battery beneath the skin. This will happen somewhere in november.
http://i4.photobucket.com/albums/y144/berlut/neurostimulator.jpg
The battery needs to be replaced every 2 years, depending on how much I use the device.

There is a very good video which explains it all better. Go to this link
http://www.back.com/treatment-pain-neurostimulation.html and then scroll down to where it says "play video"

I am looking forward to this with mixed feelings. What I will need most, is good-luck-vibes from all my friends here on Pet Talk!!

[sasvermont]

Gosh, this sounds complicated and a bit stressful, especially during the "off" time while you are waiting for round 2. I trust this will give you relief. Oh my. Please keep us posted on your progress. I am sure you will.

We will all be thinking of you, and wishing you only the best of outcomes.

[Laura's Babies]

Wow! I think I would like this route rather than taking drugs! I would be scared to death but I know when you suffer in sever pain with no relief, you are willing to do just about anything to have some relief. Actually, this sounds scarey but I could see where it would be the better option..... no side effects, no worry about becoming addicted, or having to use drugs long term, just a number of things where I see this as the better option.

Good Luck and I hope you get the best possiable results and can go on and lead a normal, pain free life.

[Daisy and Delilah]

I'm so sorry, Lut. You've been through so much. Best wishes with the surgery and a life free of pain in your near future.
{{{{{{{HUGS}}}}}}}

[pitc9]

I wish you all the luck in the world that these surgeries help ease and END your pain!

My prayers and thoughts will be with you.

[sirrahbed]

That was very interesting to read all about. It sounds scary but VERY encouraging. This pain must be so depressing and so exhausting for you to bear. The device sounds like it is jsut for you though! It seems you meet all the criteria. You may be feeling so much better by Thanksgiving or Christmas!! Then, 2008 can be a very happy and comfortable year.

((((LUT))))

[Catty1]

Oh, gosh Lut - I was so hoping that the last surgery was just taking time to heal!

This sounds promising!

Stupid question - but one would almost wish they could just remove the nerve itself! Or cauterize/laser it!

Can you apply for permission from National Health BEFORE the trial period?

BIG prayers for you and that everything goes well. As long as you get relief! That is the most important!

HUGS, SIS!!!! XOXO

[lizbud]

You have my positive vibes and prayers for a sucessful surgery and
also a speedy recovery from both operations. :) This does sound like it
just might do the trick. here's hoping & praying for a final release from
the pain.

[Catsnclay]

Hope this is a little encouraging news, my FIL's neighbor had this proceedure done to him, he was pretty much bedridden, he is now up and walking around! So, hopefully this will work for you too! :D



Catty1 - FYI - You cannot remove nerves, but you can 'burn' them closed for 6-12 months, with a proceedure called: Radiofrequency Lesioning. But nerves grow back and the hopes with this is that when they do grow back, it will take another path, which keeps you out of pain. This proceedure can be done over & over - sort of like 'training' the nerves to grow the path you want them to take.

They just did this proceedure on my lower back, and I am 6 weeks past - so far I am getting relief, but the days I feel good I tend to over-do and then next day I feel worse :rolleyes: But it is getting better - slowly! (too slowly for me, but then again I'm impatient!! :) )

Good luck with the up and coming surgery, Lut!!! - I really do hope it helps with you, I know what back pain feels like!

Sending lots of headbumpies & wet kisses your way.......... ;)

[petslover]

Oh Lut, You have been through so much! This surgery sounds really positive. Please give us updates.

hugs!

[cyber-sibes]

I can see where you're having mixed feelings, Lut. But hopefully this procedure witll give you relief from pain for a long long time! Sending you positive vibes & prayers for a successful surgery & quick recovery!

[krazyaboutkatz]

Lut, I'm so sorry to hear that you're still in a lot of pain and will have to have more surgery.:( This does sound very promising and I hope that everything will work out well. I'll continue to keep you in my thoughts and prayers. Please take care. (((HUGS)))

[phesina]

Dear Lut, I am so sorry for all you have gone through and now this.

I hope the surgery will be successful and you will not have to suffer this horrible pain any longer.

Saying prayers that all goes well and sending loads of love and good wishes,

Pat, Peony, Sydney, Poppy, Elmer, and Priscilla Angel

[Maya & Inka's mommy]

Can you apply for permission from National Health BEFORE the trial period?



No ...! That would be perfect, hey! The docs have to be sure that the system works for me !


Thanks everybody for the sweet thoughts and the positive vibes :) . It feels so good to know I have so many caring friends here :)

[chocolatepuppy]

Oh Lut, I'm sorry you have to go through even more surgery. :( I hope this all works out for you and eventually no more pain! My prayers will be with you.{hugs}

[anna_66]

Dear friend,
Through the years I've known you you've had to endure such terrible pain. I really hope that this procedure does the trick for you and keeps you feeling better for many years to come.

I'll be keeping you in my prayers Lut.
(((HUGS)))
Anna

[Maya & Inka's mommy]

* b u m p *

[Pawsitive Thinking]

I am sorry you have to go through more surgery Lut but will be with you all the way :D

[Karen]

That looks completely scary, but the result sounds promising, long-term. We'll be thinking of you the whole time, and expect Indra to keep us updated when you are in the hospital - she did such a good job this last time!

[Randi]

Lut, I'm so sorry you have to go through more surgery, but let's hope that it helps this time. If you can be free of pain, it will be wonderful! :)

I'll be thinking of you and sending lots of positive thoughts, and headbumpies from Fister.

Will Indra keep us updated? Hope so!

[Catty1]

You cannot remove nerves, but you can 'burn' them closed for 6-12 months, with a proceedure called: Radiofrequency Lesioning. But nerves grow back and the hopes with this is that when they do grow back, it will take another path, which keeps you out of pain. This proceedure can be done over & over - sort of like 'training' the nerves to grow the path you want them to take.

Lut - is what Cats'n Clay had above an option for you? I don't want to mess anything up...just wondered if your docs had mentioned this to you.

HUGS!

[JenBKR]

Lutje you know I have been praying hard for you. I hate that you are still in so much pain, but I am glad that there may be a solution. The drugs seem to work for a little while, but not a good enough solution. Neesy, Kazzie, and I will be with you all the way! ((((hugs))))

[rg_girlca]

Oh gosh Lut, how I pray that this procedure will work for you. It breaks my heart knowing that you are still in so much pain. It's not fair, it's just not fair at all. You are such a sweet, loving and caring person, that you shouldn't have to spend the rest of your life in sever pain.

Prayers and positive vibes on the way that these tough times will end for you once and for all. Just know in your heart that you don't need to go it alone. We will always be here for you.

{{{{{{HUGS}}}}}}

[Logan]

Lut, I'm so sorry that you have continued to have this pain. :( I do hope this procedure will be successful, my friend.

Hang in there, and know that you will be in our prayers.

Logan

[Maya & Inka's mommy]

I sure hope that this method is helping in my case. I've heard lots of negative reactions on a "painforum".....
Today I am feeling miserable. Only 4 vacation days left for hubby, and we haven't managed to do a single one excursion :(
Next saturday is our 28th anniversary. I hope I will feel well enough to celebrate it (is difficult, because I can't sit during 1 hour on a restaurant chair :o :(

[Logan]

Lut, as I read your comment about not being able to sit, I just started thinking that you and hubby need to find a resort where it is warm and you can "sit" in a nice swimming pool and drink fruity drinks and there would be no pressure on your spine! I've seen pictures of those places in Mexico, but I have never been.

Do you have access to anywhere there is a warm swimming pool or hot tub so that you could move around comfortably? I wish you could find some place to get comfortable and enjoy yourself!

Logan

[Maya & Inka's mommy]

Mexico is to far away for me (the flight is way to long) :( :D

I don't know about a hot pool nearby; but I wouldn't be able to get in anyway :( My leg is to weak to get in that tub. I don't know if I ttold this already here, but I CANNOT do steps, not even 1 :(

[Killearn Kitties]

Three weeks to go now Lut. I so hope this will make a difference to you.
The girls will, of course, be keeping their furry paws crossed for you throughout this lengthy procedure.

[Felicia's Mom]

Lut, I am sorry you are going through this pain. You will be in my prayers.

[Alysser]

I really hope this finally relieves your continous pain. This surgery sounds complicated, but if it helps you get better then hopefully it will work. I wish you alot of luck and send good vibes your way. :)

[Catty1]

Lut - did the doctors mention the 'burning the nerve' method? I wonder if anyone on the pain forum had it done.

Altavista tells me it is "Radiofrequentie Lesioning" in Nederlands, and "Hochfrequenz Lesioning" in German.

("lesion" = Letsel, Verletzung. Just in case it helps on the pain forum).

I hope this other procedure works for you, Lut. I just don't think the 2 month waiting period is fair...maybe Bernard can have a good rant at your local politician?

HUGS!

[joycenalex]

lut, i saw this just now. many wishes for good results and what did you and your hubby do for the rest of the vacation? sometimes for me, being at home is a vacation

[koxka]

Lut, I'm sorry you cannot get pain relief without surgery. :(

[Maya & Inka's mommy]

I've had my last appointment before the surgery today. When I left, the surgeon said: "see you on september 5th"!!
There is 2 more weeks to go now; I wished it was sooner, because the radiation pain in my leg is worse than ever. I cannot sit for longer than 5 minutes before having pain; so I have to lay in bed during most of the day... :( , or walk around a bit.
My favorite activities now are reading comic books, and watching the cats play (and nap :p )

[Pawsitive Thinking]

I can't begin to imagine what this must be like for you but hang in there - 5 September will arrive before you know it (try crossing each day off the calendar).

Big hugs from me and the gang in the UK

Your friend, Denise

xxxxxx

[kimlovescats]

Bless your heart, Lut! I pray that these 2 procedures will be what finally works for you and relieves your pain!

Hugs,
Kim

[JenBKR]

I can't even imagine how frustrated you must be. I know you are so ready to be up and moving around already, but in two weeks you will be getting some relief. Take care of yourself, and know that we are all with you every step of the way. ((((hugs))))

[Pawsitive Thinking]

*bump*

Our friend needs cheering up

[caseysmom]

Hi Lut, I'm sorry I missed this thread before. I went through 2 months of pain and it was horrible, I can't imagine living with it as long as you have. It seems like european medicine is more ground breaking than here, I have never heard of that. I hope it helps you with the pain. {{hugs}}

[lizbud]

I am so sorry that you are in such pain right now & pray that this next
surgery can give you some needed relief. :)

[rg_girlca]

Lut, how I pray that this surgery will finally put an end to the terrible pain that you are in.

You are still in my prayers.

[Maya & Inka's mommy]

UPDATE on my surgery !

Surgery of Sept 5th is over. The doc said that bringing the elektrodes in my epidural space, was NOT painfull. All I would feel was a big pressure there.

:mad: %$*µé@ , no pain, he??? It was VERY painfull; I screamed out loud, and I hope they could here it in Tokio.... :mad: . It isn"t fair, is it! Why not tell people the truth?? What the doc also "forgat" to tell me, was that the surgery would take 2,5 hours, and that I had to lay on my tummy all the time :eek:

Oh well, the surgery was a succes! There is a white cord coming out of my back and this is connected with a portable neurostimulator.
http://s4.photobucket.com/albums/y144/berlut/th_ne1.jpg http://i4.photobucket.com/albums/y144/berlut/ne2.jpg
The cord is really long, so I can carry around my "boxie" in a shoulder bag
http://i4.photobucket.com/albums/y144/berlut/ne3.jpg

On the second pic you can see a battery that is almost half empty. On top you can see how hich I turned on the frequense. I can also turn it of, by pushing that red button.

I may test this thingie during 1 month. When the doc and I decide it is okay to implant a defenite box, we must fill out an application. They also HAVE TO remove this box I have now.... . So the waiting period will be rather paiful... :( . I hope to get the final stimulator in December.
It looks like one of this
http://i4.photobucket.com/albums/y144/berlut/neurostimulator.jpg

[Pawsitive Thinking]

Glad to see such a positive and upbeat post from you young lady!!!

You know we are all keeping everything crossed that you have finally found a way to get rid of the pain once and for all :D

[kimboe]

Wow, I hope your feeling a bit better and will get better soon. You have such great strength. Hope everything goes through as planned :)

[JenBKR]

I am so glad that things are working so far with your boxie. Lots and lots of prayers that it keeps working!!

[Catty1]

It would be nice if the boxie left some relief after it is removed...

Can your doctors write a letter about your pain, and have the approval hurried? It seems too long to wait!

Glad this is working for you now...you must feel so relieved! :)

HUGS!