I have to go to Mass General on Thursday to talk with a neurosurgeon. I am most likely going to have to have spinal decompression surgery and I am not very happy about that. Has anyone had this, or know someone who has gone through this?

By Dawnk777 on Tuesday, March 25, 2008 - 11:29 am:

{{{HUGS}}}

By Dana on Tuesday, March 25, 2008 - 01:23 pm:

I've never heard of it, but I will say a prayer for your health and your caregivers.

By Yjja123 on Tuesday, March 25, 2008 - 01:35 pm:

((((hugs)))) You are in my thoughts and prayers!

By Karen~admin on Tuesday, March 25, 2008 - 01:47 pm:

Colette, exactly what type of surgery are they talking about? What problems have you been having?

I've had 2 back surgeries for ruptured disks, and they fall into the category of *spinal decompression surgery*. Both times I had a diskectomy and lumbar laminectomy. However, there are several other procedures that are considered spinal decompression surgery.

By Ginny~moderator on Tuesday, March 25, 2008 - 02:50 pm:

I'm really glad you are talking to a neurosurgeon. I am assuming you have tried conservative treatment first. I am not a big fan of back surgery, but in some cases there comes a time when there is no reasonable alternative, and all you can do is pick the best neurosurgeon you can find.

By Bemerry84 on Tuesday, March 25, 2008 - 03:12 pm:

Colette posted on the prayer thread about a cyst that they have been watching that has grown significantly.

No back surgery experience here only HUGS.

{{{{{{COLETTE}}}}}}}

By Colette on Tuesday, March 25, 2008 - 03:16 pm:

I have a chiari 1 malformation w/syringomyelia. I am hoping that they decide to just monitor it instead of surgery because the symptoms I have are just minor annoyances at this point.

By Mom2three1968 on Tuesday, March 25, 2008 - 04:27 pm:

Hugs and Prayers sent your way!!

By Crystal915 on Tuesday, March 25, 2008 - 05:01 pm:

((((Colette))))

By Karen~admin on Tuesday, March 25, 2008 - 06:08 pm:

Wow, that sounds like *much* more serious stuff than I've ever dealt with. I don't know much about it at all, other than things I have heard or read periodically. Many prayers for you Colette - a good neurosurgeon is definitely the route, and a second opinion would be a good idea too. Please let us know what they tell you.

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

By Tunnia on Tuesday, March 25, 2008 - 06:32 pm:

I have no knowledge of what you are going through, but I wanted you to know that you are in my prayers.

By Colette on Thursday, March 27, 2008 - 02:59 pm:

I just got home, the surgeon is suggesting surgery would be best, but he wants me to go to another hospital and get a second opinion. He said there is no rush on the surgery.

By Debbie on Thursday, March 27, 2008 - 03:54 pm:

I think it is a great idea to get a 2nd opinion. {{{hugs}}}

By Karen~admin on Thursday, March 27, 2008 - 06:59 pm:

Colette, I'd definitely get the 2nd opinion. What specific surgery has he suggested? How invasive and involved is it and what is the prognosis and recuperation period?

By Colette on Thursday, March 27, 2008 - 07:06 pm:

I don't know how to make a link, but this kind of explains the whole thing in layman terms. I have total confidence in the surgeon. Mass General is rated #4 in the country for this surgery and the surgeon is the top guy - doesn't even accept new patients, but my best friend's husband works with these surgeons and got me in.
He did tell me that I don't have to have surgery but there is a chance that the nerve damage could worsen and that he may not be able to fix it.
http://www.conquerchiari.org/newly%20diagnosed_files/frame.htm

By Dawnk777 on Thursday, March 27, 2008 - 11:34 pm:

Medical Info

Ditto on the 2nd opinion!

By Colette on Friday, March 28, 2008 - 07:50 am:

Thanks for the link Dawn, I can't quite get that down.

By Karen~admin on Friday, March 28, 2008 - 07:10 pm:

Wow. That's more serious than I realized. When are you getting the 2nd opinion? How soon do you think you would have the surgery??

By Colette on Friday, March 28, 2008 - 08:39 pm:

My friend whose husband works with all the surgeons in New England, is getting me a name to call for the second opinion. The surgeon said no rush for the surgery, the only symptoms I have that I noticed are my fingers fall asleep often, also when he held a tuning fork to my legs, I could not feel the vibrations, which then led him to stick me with a pin that I definitely felt. I would however, like to get it done before school gets out, so that I can recover at home, while the kids are at school. Also, I have rented two cabins at the end of July for a vacation up at Prince Edward's Island (a 600 mile drive) and I really want to be able to go, I have promised the kids forever and every •••••••• year some crisis comes up and I have to break my promise. The surgeon said it's going to be about 3 mos before I totally heal.

I am trying not to think about the things that can go wrong with this surgery, but it's hard and surgery could make matters worse - which is downright scary. I am trying to comfort myself with the fact that the surgeon I am going to is really, really good.

other things I am obsessively worried about is my youngest dd, who is joined at my hip and has seen way to many people she loves die for a little kid, I am so worried about her, I think it's my prime concern. The other one, and it's totally vain, and I know it, but I have really long hair and I don't want my head shaved. That one is stupid, I know, but I saw a woman at the hospital yesterday, looked fine from the front and the whole back of her head was shaved.

I guess I just really wished he had said that if the symptoms were not bothering me, then to do a wait and see approach.

By Yjja123 on Saturday, March 29, 2008 - 01:46 pm:

I am sorry you are going through this!

I understand not wanting to lose your hair. I have very long hair also. I have cut it off twice to donate to Locks of love. Perhaps you could do that prior to them shaving your head. That could give it a more positive spin (your donating your hair to someone that has none). Both times I cut it to chin length and I was amazed how quickly it grew back.

((((hugs))))

By Karen~admin on Sunday, March 30, 2008 - 01:05 pm:

Colette, I really understand not wanting to have to lose your hair! But I think Yvonne has an excellent suggestion! Maybe you can try to see it as a way to *try something new*. I have to say, if it were me - and it's NOT, I realize that - I think I'd cut my hair as short as possible and donate as much length as possible, and then shave my head just prior to surgery. Then your hair will all grow in the same length and you'll have the opportunity to experiment with different funky short hairstyles that you never would have otherwise done. I know you all are probably thinking I'm just saying that because it's NOT me and *I* don't have to deal with it. But since having a chemo buddy with brain cancer who had brain surgery and chemo and had to shave her head/and lost her remaining hair, I've done a lot of thinking about it. That, plus seeing my mom when she lost most of her hair due to chemo and radiation. I truly believe that's what *I* would do! :-)

But, you have every right to be upset about your hair - mine used to be down to my waist, and most of my life I had LONG hair, it was part of my identity, part of how I saw myself, so I hope I understand your feelings about that.

Is there a specific reason they do not want to do a wait-and-see approach? I actually googled your condition and read a bit on the symptoms and the surgery. There is no doubt it is a serious surgery. I think I don't fully understand exactly how they treat the cyst?

I know this is probably little comfort to you at this time, but think about it - there are risks with EVERY surgery. And with anything that involves the entire spine, there are risks of nerve damage. I have permanent nerve damage from previous ruptured disks in my back. The surgeries further traumatized the nerves, and following surgeries, I had more nerve related symptoms, but IT IMPROVED. The damage that was done pre surgery is there forever. My neurosurgeon told me that nerves regenerate a millimeter a day (?) - it's slow, and supposedly the progress within the first year following surgery/surgical nerve trauma is what you end up with. BUT - after physical therapy, over 4 years after my first back surgery, and 3 years after the point where I wasn't supposed to see any more improvement in the nerve function in my right leg, when I went in for the 2nd disk surgery, there was *significant* improvement in my right leg and the neurosurgeon said he'd never seen that before. I'm telling you this to let you know that the negatives don't have to outweigh the positives, and that recovery is an individual thing. I hope it doesn't offend or upset you, I am saying these things with the intent of reassuring you. Does that make sense?

Obviously I have never had a surgery as serious as what you are facing. It would be really easy for me or anyone else to tell you to try to be positive and expect the best outcome. Realistically, I know it's not that easy for YOU to do.

If you have the surgery before school is out, by the time you take your vacation the end of July, you should be a couple of months post surgery, right? So with some help, you should be able to enjoy being with your family, and you can take it easy.

Please let us know what the 2nd opinion is all about! You are in my thoughts!

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

By Colette on Sunday, March 30, 2008 - 02:43 pm:

I am trying to be positive about this. My surgeon told me that I do not have to have surgery but if I do a 'wait and see' the damage that occurs could be permanent and when I asked him what he would do if it was his brain/spine he said he would have surgery. I am already seeing minor nerve damage in my hands and with my sense of touch in my legs - he held a tuning fork on my legs and I couldn't feel it at all, he then stuck me with a pin and I felt that just fine. I am waiting for the name of a surgeon from my friend's husband, should get it today or tomorrow and then make the appointment for the second opinion, but the first surgeon is the top guy in Boston, so I pretty much trust that he's right.

I am a little less freaked out about my hair, I guess they only shave the smallest area possible so it hopefully won't be to bad. I also read that you can't shower for TWO weeks, and I am hoping that's not true. I am trying to talk about it with the kids so they are less frightened. Ds said he's going to put a sign up on my room saying "baldie's room".

So right now, while I wait, I am trying to focus on getting my body as healthy as possible so I hopefully will heal quickly.

as far as the cyst goes, picture a regular drinking straw and then put a shish kebab skewer in the hole, there is a space around the hole. The staw would be the spinal column and the skewer your spinal cord - the space between is where your spinal fluid flows, my brain goes into the space, disrupting the flow of fluid, so it goes into the cord and created a cyst. When they fix this the fluid will be able to flow correctly and the cyst should drain....I think that's how he explained it, but he didn't use the straw and skewer example - I tried to create a visual for the kids at home and that's all I had on hand. Thanks for the good thoughts.

By Colette on Sunday, March 30, 2008 - 02:45 pm:

Geez, sorry, I am repeating myself a few times in this post.

By Karen~admin on Sunday, March 30, 2008 - 03:18 pm:

LOL I get the part about where the cyst is - so what happens is, when the space is opened up so your brain doesn't protrude into it, that is what allows the cyst to drain...........right?? They don't actually try to do anything to the cyst itself? Sorry, I am feeling a bit dense right now. :-(

If they just shave a small area, and your hair is thick enough, then you can probably get away with not shaving it. Good for you!

You probably can't get the surgical area wet for 2 weeks, which would mean not washing your hair, and not showering. Doesn't mean you can't bathe though, does it?? THAT is what would drive ME nuts - not washing the hair. When I had back surgeries, I couldn't get my back wet for 2 weeks following each surgery. We were able to wrap a plastic garbage bag around me and use packaging tape to tape all around it so it didn't leak. But that was lower back, not head/neck. You will do whatever you have to do, right?

I think what you're doing to prepare the kids is great, and your focus on getting as healthy as you can is right on.

I see now why they don't want to wait and see. I am learning something new here.

By Tayjar on Monday, March 31, 2008 - 01:40 pm:

Colette - I think my DD's friend has had this surgery. Here is a site that talks about Whitney's surgery.

http://www.chiaribracelets.com/page2.html

It's been 4 since her surgery. She still has headaches but overall she is doing great. If you didn't know she had this condition, you'd never tell it by looking at her. Email me at dp 4 softball at yahoo dot com if you want more information. I know her mom, Rebekkah, would be more than happy to talk to you about the surgery. They are very nice people.

By Colette on Monday, March 31, 2008 - 02:30 pm:

Thanks Dora, she has a much more serious form than me, but it is the same surgery either way. I will be emailing you.


trying to find a dr for second opinion, first two I checked out both had a successful, recent, malpractice suit against them. argh..

By Tayjar on Monday, March 31, 2008 - 05:06 pm:

colette - here is a site you might want to check out.

http://www.northshorelij.com/body.cfm?ID=6407

By Colette on Friday, April 11, 2008 - 10:34 am:

I went ahead and scheduled the surgery before getting the second opinion so that I can get this over and done with. I am still getting the second opinion but I know it's going to be the same result, so this way I can schedule when it's easiest for me to have someone here to help with the kids. So...May 5th is pre-op testing and May 7th is the surgery. Surgery is going to be 5-6 HOURS.

I thought I was nervous before...

By Yjja123 on Friday, April 11, 2008 - 10:56 am:

You are in my thoughts and prayers!!!!
Many ((((((hugs))))))

By Annie2 on Friday, April 11, 2008 - 11:33 am:

Colette, you are at one of the best hospitals in the US. My dad went there when he was diagnosed with multiple myaloma. His prognosis was three years but the drs were able to keep him functioning and enjoying life for an additional two years.
Keep the surgery appt but keep trying to obtain the second opinion in the interim. You have a very hands on husband which will relieve alot of stress for you while recuperating.
We will all keep you in our thoughts and prayers.

By Colette on Friday, April 11, 2008 - 11:36 am:

Thanks - I do have the appointment for the second opinion - it's on May 1st at a different hospital in Boston, but I know the dr is going to say the same thing.

By Karen~admin on Friday, April 11, 2008 - 12:28 pm:

Colette, I watched Extreme Home Makeover last week and the mom and her 3 daughters had chiari malformations, the mom and one daughter had had the surgery. I was telling DH about you, and we were discussing this. I didn't know that this was genetic.

You are definitely in my prayers. I'm sending you tons of healing, positive vibes. I know you are very anxious - this is serious - but I know you are going to be fine, as you recover.

{{{{{{{{{{{{{{{{BIG HUGS}}}}}}}}}}}}}}}}}}}}}}

By Debbie on Friday, April 11, 2008 - 02:01 pm:

{{{Hugs}}} I will be thinking of you. It sounds like you have a good plan! Keep us updated.

By Bobbie~moderatr on Friday, April 11, 2008 - 02:02 pm:

Colette.. (((((((BIG HUGS)))))) You are in my thoughts and prayers.

By Dawnk777 on Friday, April 11, 2008 - 02:47 pm:

{{{HUGS}}}

By Tarable on Friday, April 11, 2008 - 03:45 pm:

WOW!! Colette you are in my thought. I can't imagine going through all that.. Well I couldn't until about 2 days ago when I went to a neurosurgeon because my arm and hand is starting to hurt again after the epidural steriod shots i had at the end of last year. They did an x-ray and see a cyst.. Now that you have told me all this i am really scared! But hopefully mine isn't like yours.

I hope all goes well for you.