Symptoms coming back after Decompression Surgery?

Have a question about a symptom, procedure, medication, diagnosis, research, or coping? Ask questions and share what you know with others

Moderator: pmaxwell

Symptoms coming back after Decompression Surgery?

Postby JaxonNTaylor0408 » Wed Sep 21, 2011 9:15 am

I had decompression surgery in June 2011 for a Severe Chiari Malformation. My NS said that i would feel better every month but that it can take up to a year for my symptoms to go away. I felt better at first but now Im finding that my original symptoms are coming back and im starting to feel like I did before I have the surgery. Anyone have any idea why this is happening and is this normal? Should I be worried? Any responses are welcome! Thanks Everyone!
<3 Casey <3
CM 22mm. Decompression Surgery June 8th, 2011.
JaxonNTaylor0408
 
Posts: 16
Joined: Mon Apr 18, 2011 8:44 am

Re: Symptoms coming back after Decompression Surgery?

Postby gunflint » Wed Sep 21, 2011 2:18 pm

I'm about 3 weeks away from my decompression surgery. From what I understand, the best I should hope for is to keep my current symptoms from getting worse and not to expect improvements. I know that some people do improve and some people actually get worse. Most of my symptoms were on the left side but as my symptoms are now accelerating my right side is starting to show some of the same symptoms as my left and I'm just hoping to stop the degeneration. I don't expect any improvements.
gunflint
 
Posts: 266
Joined: Tue Jun 14, 2011 8:10 am
Location: Duluth Mn

Re: Symptoms coming back after Decompression Surgery?

Postby pmaxwell » Wed Sep 21, 2011 2:42 pm

When people feel better after surgery, sometimes they tend to overdo. The other thing you have to consider is that before surgery everything was compressed. Now it is starting to comeback. example: If you lay on your arm it goes to sleep and is numb. When it wakes up, you feel tingling (pins and needles).

Surgery is not a cure but hopefully it does correct the issue and allows for healing. But you can't just depend on surgery to make everything right. You have to take care of yourself both mentally and physically. Eat healthy foods, get plenty of rest and exercise. Don't overdo. Know your limits and build slowly. Keep a journal of your symptoms you might discover a trigger that will help.

Stress increases symptoms so try to relax and find things in life you enjoy.

best wishes for a complete recover!
Together We Can...
pmaxwell
 
Posts: 152
Joined: Mon Jan 31, 2011 2:20 pm

Re: Symptoms coming back after Decompression Surgery?

Postby dtyree » Thu Sep 22, 2011 8:03 am

Yes surgery can bring a halt to the damage of the neurological system CM causes. Have you had any follow up CAT scans or MRIs? In my case, symptoms did come back due to hydrocephalus, too much fluid on the brain. There could also be a csf leak causing symptoms to return. You might want to get in touch with your doc about the returning symptoms.

Peace,
David
Been called a "walking medical dictionary".
dtyree
 
Posts: 1383
Joined: Sat Nov 03, 2007 8:43 pm
Location: Nashville, TN

Re: Symptoms coming back after Decompression Surgery?

Postby StephMoore » Thu Nov 03, 2011 5:04 pm

I had surgery for Chiari I in January 2010 and within months, all my syrinx were either gone or reduced in size by at least half. The pain seemed to get better after surgery, but then all the pain started coming back (although the other symptoms are gone) and is getting worse. I've gone back for several MRI's and now my Neurosurgeon says my cervical spine is curving towards my spinal cord instead of away and she 'thinks' that's where my pain is coming from but cannot be sure.
I've asked several times if the pain could be from damage to my spinal cord from having the syrinx for (what she believes) many years. Her response "There's no way to tell".
I'm a healthy 30-year-old mother of one child and would love to have another child....but cannot go without pain meds! If I cannot go without pain meds/muscle relaxers/Lidoderm patches...I'll never be able to have another child. I'm robbing my child now of many fun things now because I'm in constant pain.
The thought of living the rest of my life in pain is so stressful! I don't mean to whine and I know many people in this world have far worse things, but I don't know what to do!
Has anyone found anything helpful?! PLEASE help
StephMoore
 
Posts: 11
Joined: Thu Nov 03, 2011 4:44 pm

Re: Symptoms coming back after Decompression Surgery?

Postby gunflint » Thu Nov 03, 2011 6:16 pm

This is what really tears my heart out about this challenge that we have been given. When I read about children and young mothers or even young adults with our affliction I realize that I'm one of the lucky ones. I didn't come down with symptoms until my mid 50s after my kids were grown. I hope that relief will come someday to all.
gunflint
 
Posts: 266
Joined: Tue Jun 14, 2011 8:10 am
Location: Duluth Mn

Re: Symptoms coming back after Decompression Surgery?

Postby StephMoore » Thu Nov 03, 2011 6:21 pm

Most of what I'm reading are messages of 'hope'... Please don't get me wrong because I do thank you for your reply! But is there only hope for this? :-( I'm just so lost
StephMoore
 
Posts: 11
Joined: Thu Nov 03, 2011 4:44 pm

Re: Symptoms coming back after Decompression Surgery?

Postby gunflint » Fri Nov 04, 2011 2:25 pm

StephMoore,
Hope is a wonderful thing to have. I know several people right now that have health issues where there is no hope. I'm not trying to be harsh but very few adults die from SM. It then becomes a pain management issue and a possibility of paralysis. I googled "pain meds and pregnancy and found that there is a lot of info available. It can be done. There are some elevated risks involved but do some research and you may feel a little better. I have no idea about your C spine curvature and I imagine the pain is excruciating. I don't understand if your question is related to pregnancy or child raising or both. It seems to me that you can take pain meds during pregnancy (under strict doctors supervision of course.) And who knows maybe once your pregnancy is over you'll be able to find a pain specialist who can keep you more comfortable than you are now. I certainly hope so. You don't say who you've seen for pain management but if you're relying on a NS or a GP you should look into a pain specialist. It's obvious that you are a caring and loving person and your concern has more to do with the quality of your children's upbringing than your pain.
gunflint
 
Posts: 266
Joined: Tue Jun 14, 2011 8:10 am
Location: Duluth Mn

Re: Symptoms coming back after Decompression Surgery?

Postby StephMoore » Sun Nov 06, 2011 12:52 pm

gunflint: Thank you. I am very concerned with my pain affecting my child's life and possible future pregnancy. I imagine if I do choose to be pregnant again, I'll deal with the pain without meds...I could never risk my unborn child's life for anything, regardless of what I have to go through.
I guess my biggest challenge in this right now is living in a very small city with limited options as far as doctors and my health insurance. Hopefully I can branch out to find a pain specialist somewhere relatively close by...thank you for the suggestion!
I truly appreciate you taking the time to 'talk' with me! I hope all is well with you!
God Bless!
StephMoore
 
Posts: 11
Joined: Thu Nov 03, 2011 4:44 pm

Re: Symptoms coming back after Decompression Surgery?

Postby pmaxwell » Sun Nov 06, 2011 1:49 pm

In addition to fighting pain with medication you could also consider other therapies like bio-feedback, massage, exercise, mediatation, accupuncture, etc. Some people have been able to greatly reduce the meds.

Patricia
Together We Can...
pmaxwell
 
Posts: 152
Joined: Mon Jan 31, 2011 2:20 pm

Re: Symptoms coming back after Decompression Surgery?

Postby StephMoore » Mon Nov 07, 2011 8:51 pm

pmaxwell wrote:In addition to fighting pain with medication you could also consider other therapies like bio-feedback, massage, exercise, mediatation, accupuncture, etc. Some people have been able to greatly reduce the meds.

Patricia


Patricia,

Thanks for the suggestions! Just had more MRI's & XRays today... Don't go back for the results until beginning of December, but I did load the disc on my home computer and can still see some syrinx :x
I'll have to research the bio-feedback and accupuncture...hopefully one will be within my budget.

Again, I really appreciate all suggestions and comments! Nice to 'talk' with people who understand!!!

God bless!
-Steph
StephMoore
 
Posts: 11
Joined: Thu Nov 03, 2011 4:44 pm

Re: Symptoms coming back after Decompression Surgery?

Postby gunflint » Tue Nov 08, 2011 2:31 pm

StephMoore,

Maybe we should start a new thread as I think that we are wondering away from the original post. Again you have brought up a valuable point that I forgot about and that is small town health care. When I read that along with your last post that it's going to take weeks to get results from MRI's taken in the last day or two I think that maybe you should think of finding a center that is fairly close that is familiar with SM. I am fortunate enough to have a small town GP who is smart enough to know what he doesn't know and is willing to refer me to anywhere that I ask. He also has a great attitude when it comes to pain management. I'm not saying that you should travel hundreds of miles every time you need to see a doc but maybe there is someplace fairly close that can work with you doctor or local NS.
I live in a small city of about 100,000 and there isn't a NS here that I would let treat me for SM.
gunflint
 
Posts: 266
Joined: Tue Jun 14, 2011 8:10 am
Location: Duluth Mn

Re: Symptoms coming back after Decompression Surgery?

Postby StephMoore » Thu Nov 17, 2011 6:41 pm

Gunflint,

My next NS appnt is December 8th (to see results of MRI) and if she cannot/will not do anything different to help me I will definitely be going elsewhere. Unfortunately, I've missed a lot of work because of pain and side effects from different meds, so I don't have any 'vacation/sick time' left for this year...I'll have to wait until January to go Doctor searching. I live about 1.5 hours from Duke and am hopeful that I might have better luck there (although I'll still be traveling a lot).
I've stopped taking so many meds now and have been trying Lidoderm patches...nothing great. Just trying to back-off from the meds and all to see if I can deal with the pain before we actually get more serious about the possibility of getting pregnant.
StephMoore
 
Posts: 11
Joined: Thu Nov 03, 2011 4:44 pm


Return to All About Chiari, Syringomyelia, and Related Disorders

Who is online

Users browsing this forum: No registered users and 6 guests