Decompression Question

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Decompression Question

Postby AFleming05 » Wed Jun 20, 2007 8:50 am

How do you determine if you were not decompressed enough?

I am coming up on a year from my first surgery and I still have DAILY headaches and the doctors have tried several medicinal routes, but nothing has helped and many of them had too many harsh side effects that landed me in the hospital. I have had a fever for almost a year now and have undergone several other tests, but the only problem appears to be with my head (haha).

I am meeting with a new neurosurgeon next week because the neurosurgeon who preformed my surgeries lacks communication skills and I am sorry, but I think as his patient he should invest a little of that. I had an external spinal fluid leak from my wound and was terrified and he was called, but he never called back. Thank goodness, I was in rehab so there were medical personnel able to help me. That was really the last straw.

I am still having problems. Nerve damage that I don't expect to be repaired. My neck is still stiff, I have daily headaches that vary in intensity and duration, a fever that fluctuates and fatigue that just seems oppressive. I just feel deep down that it has to get better than this. So, like I said I am off to meet with a new neurosurgeon. Is it possible that I still have headaches that aren't controlled by these neuorpathic pain killers because I was not decompressed enough? I have been trying to research this online, but I am having a hard time finding any material.

I am very appreciative of any help/advice you may offer.

Many thanks and many blessings,
Mandy
AFleming05
 
Posts: 40
Joined: Wed May 16, 2007 2:15 pm
Location: Massachusetts

support?

Postby prism » Wed Jun 20, 2007 12:08 pm

Hi Mandy,

I just wanted to offer you some support. It sounds like you've been through a lot. Way too much. :!: I sure hope you land a neuros. who can help you and treat you with the respect you deserve. I hope you find some answers here too. I can only offer you a hand to hold along the journey... take heart... and blessings to you as well~
prism
prism
 

Postby mac » Wed Jun 20, 2007 12:20 pm

Hi Mandy...

I am so sorry to hear about how you are feeling. I think you ask a very valid question. I would be questioning the success of the surgery myself. One thing they always seem to tell us is that the surgeries are to halt the progression of symptoms and if we get some improvement, that's a bonus. Do you feel your sx are worse now than pre surgery?

Also...the majority of decompression surgeries done at TCI are "do overs" of PFDs done by other surgeons elsewhere. Where did you have your PFD done a year ago, I'm sorry, I forget.

I just feel so darn bad about all you have to deal with after going thru the surgery and recovery! I have read here that you will reach the best you are going to be at around a year post op. That is frustrating and disappointing for you, I'm sure.

I'm glad you ditched the surgeon if he can't care enough to call you when you are suffering with a CSF leak! I hope the new guy will be able to help you. And I wish I could do more to help, too. But I'm praying!

mac
mac
 

Postby kiminfla » Wed Jun 20, 2007 12:31 pm

Mandy, I'm sorry to hear of your continued struggles. I don't know anything about how you know if you're decompressed enough but I hope the new NS can give you some answers. I've heard the one year stuff too. My NS said 75% improvement at one year, maximum benefit of the surgery for me at 2 years post op. His nurse said they don't make any definitive conclusions about the surgery until one year post op. This is probably only making it more confusing but the way I understood it for me is:

At one year post op they'll be able to determine how successful the surgery was, at two years post op the symptom relief will be as good as it's going to get.

My one year post op will be in Sept and I definitely still have issues I'm struggling with so I'm right there with you! I'm certainly interested in finding out what the future holds for me: more surgery, more improvement, more whatever. As I said, I hope you can get some definitive answers from the new NS. Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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temp

Postby hayla2 » Wed Jun 20, 2007 12:42 pm

I don't have a whole lot of explanation but as for the fevers, my daughter's doc explained her fevers on the body reacting to pain. Doc said it is normal for the body to run an elevated temp when there is consistant pain in the body. I know that when my daughter's pain is up, so is her temp. And she always has an elevated temp. Hope this helps. Melissa
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Postby AFleming05 » Wed Jun 20, 2007 11:01 pm

thank you all for your responses. You have all been a pivotal source of comfort and knowledge in this chiari battle. Know of my gratitude

I wish resolution for all of us. Wouldn't that be nice, huh?

many blessings,
Mandy
AFleming05
 
Posts: 40
Joined: Wed May 16, 2007 2:15 pm
Location: Massachusetts

Postby AFleming05 » Wed Jun 20, 2007 11:12 pm

mac wrote:Hi Mandy...

I am so sorry to hear about how you are feeling. I think you ask a very valid question. I would be questioning the success of the surgery myself. One thing they always seem to tell us is that the surgeries are to halt the progression of symptoms and if we get some improvement, that's a bonus. Do you feel your sx are worse now than pre surgery?

Also...the majority of decompression surgeries done at TCI are "do overs" of PFDs done by other surgeons elsewhere. Where did you have your PFD done a year ago, I'm sorry, I forget.

I just feel so darn bad about all you have to deal with after going thru the surgery and recovery! I have read here that you will reach the best you are going to be at around a year post op. That is frustrating and disappointing for you, I'm sure.

I'm glad you ditched the surgeon if he can't care enough to call you when you are suffering with a CSF leak! I hope the new guy will be able to help you. And I wish I could do more to help, too. But I'm praying!

mac



Mac,

Thank you for your response. You are always so willing to offer up opinions, suggestions, and stir conversation - know that I am grateful for your support.

I don't feel that my sx are worse, but they don't seem to be getting better. I started having the fevers after my first surgery - so I am guessing that they are an adverse development post surgery. I sure feel like I have been poked and proded to see if they are related to anything else.

I had my PFD at Metrowest Medical Center and I had the additional procedures and surgeries there too.

Thanks for the prayers. I am certain they come in handy! Know that mine are with you as well.

Many thanks and blessings,
Mandy
AFleming05
 
Posts: 40
Joined: Wed May 16, 2007 2:15 pm
Location: Massachusetts

Postby mac » Thu Jun 21, 2007 1:05 am

Thanks much, Mandy.

Where is Metrowest?

And what all surgeries have you had? I"m sure you've said but you know how all of our memories are, right?

About not being decompressed enough, have you had a CINE to determine your flow post op? That might be something to suggest to the new NS next week. IF the new NS is someone who doesn't mind a learned patient, if YKWIM.

Know what I'd do? I think I'd start a new thread here and ask, sort of a poll, how many people still have/had headaches 1 yr post PFD. That might narrow down some and you might find some interesting answers.

The neck being stiff....I know you've been to PT...have you stopped going? Perhaps you can ask for a referral back if you have stopped, saying you still have a stiff neck and need to loosen it up some. I'm just guessing here, don't take my word for it! And also massage, as so many people have posted recently. But that might be contraindicated, I don't know. Just brainstorming and trying to throw ideas out there.

thanks for the kind words. Backatcha 100%.

hugs
mac
mac
 

Postby AFleming05 » Mon Jun 25, 2007 3:20 pm

mac wrote:Thanks much, Mandy.

Where is Metrowest?

And what all surgeries have you had? I"m sure you've said but you know how all of our memories are, right?

About not being decompressed enough, have you had a CINE to determine your flow post op? That might be something to suggest to the new NS next week. IF the new NS is someone who doesn't mind a learned patient, if YKWIM.

Know what I'd do? I think I'd start a new thread here and ask, sort of a poll, how many people still have/had headaches 1 yr post PFD. That might narrow down some and you might find some interesting answers.

The neck being stiff....I know you've been to PT...have you stopped going? Perhaps you can ask for a referral back if you have stopped, saying you still have a stiff neck and need to loosen it up some. I'm just guessing here, don't take my word for it! And also massage, as so many people have posted recently. But that might be contraindicated, I don't know. Just brainstorming and trying to throw ideas out there.

thanks for the kind words. Backatcha 100%.

hugs
mac



Hi Mac,

Sorry I haven't gotten back to your supportive post. :oops:

Metrowest Medical Center is in Massachusetts

I've had a C1-2 laminectomy, duraplasty, cranial decompression, spinal dura graft repair, fascia lata graft complex, and microdissection of the cervical spine.

tomorrow is my visit to the NS. Here's hoping that he'll be the key!

Thanks for all your support!
AFleming05
 
Posts: 40
Joined: Wed May 16, 2007 2:15 pm
Location: Massachusetts

Postby kiminfla » Tue Jun 26, 2007 7:51 am

Mandy, Praying your appt goes well today! Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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Postby mac » Tue Jun 26, 2007 2:41 pm

Keesha, your post on neuropathic pain killers here really helped me. I didn't know this. And I"m becoming a mess. I think I need a SCI center pain mgmt guy/gal. THANKS

mac
mac
 


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