I have a way forward! (cervical & lumbar surgery with Dr. Pimenta, Brazil)

[Carson]

The long version will be out in print or movie within the year :D Thanks for asking....it has been a giant battle and only came about through the networking on this awesome site. Thanks to all.

Well if people want to see a REAL tale of stamina and observe the strength of the human spirit than I think your movie would outsell Avatar.

Thank you so much for relaying your story in this thread. I have always been curious about your condition and others. I assume when you hurt your back in 2001 you affected your lumbar and cervical all at the same time. I'm not sure but very happy to read you have a path now.

That is torturous when trained professionals suggest numbness is "carpal tunnel" or some other unlikely condition. I understand we're all flawed and I feel we too easily vent on doctors at times but when a doctor comes up with "carpal tunnel" it makes you wonder if it's a deliberate blow-off as it's so far off base. It's really concerning when I hear doctors getting it wrong and friends on internet forums advising you to get tested for allergies getting it right.

Amazing to think you went from "eh.. it's carpal tunnel" to "one wrong fall and you could be quadriplegic". I bet that was a wonderfully relaxing night of sleep the day Dr. Bitan explained it. Glad he got it right, though. Thank you for helping others and me through your story.

[Katie]

Carson, you are a hoot :D "All I really knew until now is that you were one of the sisters. I think the other sister is Katie Bear or Cindy Bear; I'll get it figured out."

KBear (Kathy) is on here, and so is Cindylou...both are sisters in crime Or at least as stubborn in their own way as I am, if that's what you mean

I thought I'd post an update. Dr. Pimenta's assistant, Rafael is just back from vacation and contacted me, saying he will get back to me with the details I need to start booking the trip.

Thankfully, yet again, another person on here has given me some invaluable advice. She recommended that I check about documents that will be necessary to enter Brazil. She had tried to go there while on vacation a few years ago and was denied because she didn't have a visa.

I was pretty surprised that you would need one, and not just a passport. So I checked on line yesterday and sure enough, we will need not only visas for each of us, but also proof of employment, like Income Tax returns for example. Do that many people really try to dodge immigration and just stay there when on the pretense of being on vacation?

All of this is going to take time of course, but luckily we live in the nation's capital where the Embassy is located, making this much easier. The timing is going to be tricky. We have to apply for and get the visa and also enter then leave Brazil all within 90 days. Good thing my hubby is the organized one with this sort of thing :D

With the temperatures here being about -35F with the windchill over the past two days, I'm thinking that the temperatures of +35 in Brazil will be welcome, if we can just get down there soon enough. Even their 'winter' weather is beautiful though. The Mardi Gras there is mid-February, so I think we may miss that with all the paperwork still needing to be done.

It's funny; now that I have the go ahead, the push, the pressure is gone. Except from my husband. Lists, he keeps saying...build those 'to do' lists!

[Fuzzy]

I am glad you hear you will get the help you need, and soon.

May I suggest to consider that if you decide to only have one of the treatment to have the cervical first. The myleopathy is very important.

I too was a case for a double surgery. Everyone told me not to do it for several reasons. One was simply that you will not know how each surgery effects your symptoms.

Even though I had severe back and leg pain it was suggested I have cervical first but I ended up had the lumbar first and then 2 years to have the cervical. I liked the spaced out timing but I wonder about the order as my cervical symptoms worsened steady. Its ok how it turned out but right now my feet are tingling like crazy again sitting on the computer and I can't help to wonder how I would feel if I had done the cervical first, 2 years ago. I hope this damage is not permanent. Spinal chord damage is notoriously hard to reverse. Maybe both at the same time is a way to "get it over with" but it willl not be easy. You wil be hurting in 2 places at once. I for one will be watching this place. Even if I don't always write, I am here and am very interested in your progress and I wish you the best :thumpup:.

[Katie]

Fuzzy, your words mean an awful lot. Thanks.

I don't think I actually have much of a choice when it comes to deciding which level to have done first. Every surgeon so far (except for the Canadian one) has insisted that the cervical be done asap. "You are a mess" is a common comment.

It appears to be far too critical to leave, and I've been told to do the lumbar first would be too dangerous; that the surgery itself now could cause problems with the positions they would put me in, etc.

I know I am going to be in a world of hurt, but the trip itself is going to be big and very uncomfortable. I would rather not do it twice. And I cannot afford first class...it would be thousands upon thousands for two of us to go that way. There are worse places to recuperate though, than summer or fall in Brazil I hope we can stay an extra week or two and take it easy.

I was amazed when Dr. P said I would be out of the hospital in three days and able to go home in a week to ten days, even after that extensive surgery. Perhaps because he excels in minimally invasive techniques, there is less damage to tissue, less to heal.

Dr. Bitan and others have said that they cannot reverse the damage done so far, that the best I could expect would be to stop the advancement of more problems. I guess I have to live with this, but I really wish it could be better. Honestly though, I am just so happy to have found someone who can treat me, and do it well.

I appreciate knowing that you are still on the board. I actually was disappointed when I hadn't heard from you in awhile, and hoped you weren't disappearing on us

[Fuzzy]

Sorry for the sort of poorly written post above, I was running out of battery power.

Since we share a similar condition you know I agree with the surgeons on your cervical problems. They will all say they can stop the progression but cannot guarantee any improvement as spinal chord injury is such a difficult diagnosis. I was told that when if have symptoms left there would be no way to really know why I still have problems with my feet as they could have been caused by the lumbar injury also or in part. And they were right, I still have problems but alas, noticebly less. I am still amazed my hands are much better and obviously the surgery did what it was supposed to.

I have done a lot of flying with strong backpain before my surgeries and of cause made 2 return trip after 2 surgeries. On this last trip my wife she carried my lighweight backpack and she was hurting afterward from lugging that stuff arround the airport. We packed next to nothing and I borrowed clothes in Germany from a friend and bought a couple of things from a really cheap store. I carried a little "net book" computer. I will strongly suggest you stay as long as you can or at least until you feel good walking comfortably because airports are challenging, no matter how gentle you try to be. Then there is the trip itself. Your tummy should be healed up and feeling good. No matter how minimally invasive your surgeon works there will be some trauma with the anterior approach. So please, at least 2 weeks post surgery, at least. As you may remember I stayed longer then that, both times as I did not want to take chances on my health due to silly airline personal. Make sure you take the trip without change of planes if at all possible. I had 2 neck pillows with me, 1 tempurpedic one and another of the same style but it was very lighweight and came from Brookstone. This one was my "life saver". I had to rest my neck but could not ever do it against the tourist class seat back itself, without that pillow it would have been next to impossible, it was a painfull trip and that was 4 weeks post alas not much pain meds (my bad, I hate them).

2 years ago with my lumbar surgery I flew business class and I was so gratefull as at 5 weeks post op it still hurt real good.

[KBear]

Katie-
I am soooooo HAPPY for you! That is awesome news! Your perserverance (stubborness/hard headness) paid off! Funny you mention the hard head, you know I'm definitely stubborn and hard headed and then my kids will do it and I'm like "where did they get that from?" Not even realizing, duh, it's me! LOL
My brother in law just traveled to Brazil for work and I know he had to get tons of documentation. I also know that he got his bags stuck in customs and had to buy new stuff, he was there for a couple of weeks and never got it! I'm not sure what the hold up was? I will talk to him and see what all documetation is needed (just in case there is something you haven't heard of yet) and see if I can find out why his bags got stuck. I will also ask for any travel tips.
I also wasn't able to fly first class; but I was fine. Because of weather and missing the first flight, I spent 3 hours in the airport and then 9 hours on a plane! The flight attendants were helpful,, refilled my ice pack often and were super attentive. I just told them that I had just had back surgery and they were more than happy to help. I would get up and stretch and walk up and down the aisle (yeah, people stared; but oh well, I don't know them and will probably never see them again). Would love to chat with you, call me sometime!
Love you!!!
Kathy

[Maverick]

Katie I am so happy for you. This research has been a journey in itself. Hugs, Maverick

[Maverick]

Hello everyone, especially my friend and partner in research KATIE...WOW girl you are on your way. I'm so happy that everything is finally moving forward for you and you will have one, or more, of those famous artificial discs..Love you Katie. It has been minus 20 and 25 here so send me some of that warmth when you get there.

Have enjoyed reading some of your stories. Will chat more later. I am still trying to navigate my way around this site. Maverick:D

[Katie]

I am so, so happy that you are finally here! As I just explained in a PM, my computer is giving me grief and I don't have access to your address So an even better thrill to see you here.

Ha! You better be talking about the warm weather in Brazil, because it has been -35 with the wind chill here this past week It's warming up slightly now, but still not balmy. But yes, I'll ship the Mardi Gras heat your way, if I can get down there fast enough. We are getting stalled a bit with paperwork, etc. right now, but nothing major. It looks like it will just be one ADR in my cervical and three fusion in the lumbar, because there just isn't a metal free ADR available for there. We'll deal with any complications later, and by then new technology will be there for me.

So we need to talk, and catch up on your life. This is one talented and strong lady here guys. Wait till you hear her story

[Carson]

sorry, my joke about 'sisters' was just reference to an old thread here when you and KBear were laughing about being on similar cleansing treatments / barium at the same time. '__ sisters', etc. Gave me a laugh last summer :D

If I may ask quickly, Fuzzy, if you were to do it over again you say you may have opted to do cervical first, then, after a healing period, address your lumbar secondary? And done in that order with respect to myelopathy. Is it generally advisable to address cervical issues first for patients with both regions affected or just a matter of which ever discs need addressing most urgently? Thanks