Talk recovery to me

General
1

Last I wrote I needed convincing to get surgery. Not 5 day later my hands/arms started getting oddly numb/cold and very weak. Great, thanks body for making me shut up and listen.

My surgery is now scheduled for 9/25 but my pre-op apt is not until 9/10 and meanwhile all I can think about is recovery. I'm sure there are already posts (you can point me in that direction or links) about recovery. I want to hear as much as I can, and I need to plan as much as I can in regards to my participation with my (will be at that point) 2 and 4 year old kiddos.

What kind of pain meds and for how long?

Restrictions on lifting, driving etc....

THANK YOU!!!

2

Beary,

Please stay positive and try not to be afraid, even though that is normal.

Recover is subjective. The more complex your CM situation is or your surgeries may be the longer the recovery. Some Members have great surgical & recoveries.

These are some cm surgical success stories:

http://www.chiarisupport.org/forum/topics/success-stories-wanted

We also have negative surgical outcome stories. The Discussion Search still is not working so I can't provide any links. If you would like I can give you some Members names you can message if you have specific questions.

To Abby's list I would add....

1. Stay Hydrated

2. If you don't feel like eating drink protein shakes.

3. Rest when you feel like resting and don't push through pain. It will cause a set back. Listen to your body.

4. Call the Dr. on call if you have a fever, or problem with your incision or if something just doesn't feel right. You should never feel like your questions or issues are insignificant.

5. Try Arnica Gel for neck & shoulder muscle pain or even headaches as soon as possible after surgery. I have even been known to smear it all over my head and face. I buy Arnicare at Walgreen's. It does help & only costs about $12. It is homeopathic and doesn't interfere with any medications or have side effects. Ask your Pharmacist or Dr. if you have any concerns. It has been a Godsend to many on this forum. It took me about three days applying it 3 times a day to feel a difference. I am probably the biggest skeptic on this Forum about pain treatments.

6. VERY IMPORTANT: ASK YOUR DR. FOR A STOOL SOFTENER TO TAKE WHEN YOU GO HOME. MIRALAX IS AN OTC THAT WAS TAKEN OFF PRESCRIPTION STATUS IN THE PAST COUPLE OF YEARS. IT'S A WHITE POWDER YOU MIX WITH WATER AND TASTES LIKE WATER. IT WORKS WELL. MY DR.'S RECOMMENDED THAT IF YOU DO NOT HAVE A BOWEL MOVEMENT IN THREE DAYS YOU NEED TO TAKE SOMETHING. YOU CAN GET A FECAL IMPACTION VERY EASILY WHILE TAKING PAIN MEDS, PLUS EXPLOSIVE HEADACHES FROM TRYING TO GO.

7. Walk every day as much as you are comfortable with.

8. Ask you NS to recommend a Neurologist or Pain Management Dr for you to follow up with. After a certain point your NS will not provide your follow up care. I hope your headaches resolve, if not you definitely need post surgical follow up from a specialist.

9. Don't be upset if your recovery is slower than you think it should be or you can't do something that you could pre surgical. Everyone recovers at a different pace. There are even times we have to change the way we do things post surgical. At times we have limitations we didn't have pre surgical. It's not bad .....just different.

3

This recovery is like nothing I’ve ever been through and I’ve been through a lot of surgeries.I have been up and down and it is like being knocked off a high horse,In the beginning I thought,I’ve got it made,this is finally over. In 2 months of improvement it seemed as if things were so good,then I had my first set back it hit me like bricks,that was terrifying!I have learned this thing is so unpredictable,but I still would do it all over,it has changed my life for the better,my journey started 28 years ago and after finding a specialist,finally!!! The decompression is a God send and I am excited to see what will happen.My surgeon said it would take a year to start to see all the changes,this is not said to discourage you,but to prepare you.Hopefully you will not have this roller coaster of symptoms,not all of us do.We are so different and each case is different,good luck keep us informed.

4

Hi, I am 4 wks post op and have good and bad days. Unfortunately, more bad than good, but that’s to be expected at 4 weeks, according to dr and talking to patients here. after home I felt better, he had me on a round of steroids, but when I came off, there was a huge setback, they told it would happen since he steroids pump u up a little. I am a dental hygienist, so he has told me 12 weeks recovery because of our horrible posture and need to use our head and neck during work. So I know I am looking at a long recovery.
I second the miralax! It is needed, you don’t need any additional discomfort. Also, I had to purchase a memory foam pillow, with only about a 4" depth, too tall is uncomfortable and puffy pillows did NOT work. Ice is a lifesaver. Soup is all I can handle sometimes because swallowing doesn’t come back so easily, especially when 1st home. For some reason, ice cream or frostys help with my headaches. I hope some of these help you. I wish you good luck and success.

5

I’m 25 y/o with boys ages 5 and 6. I had my decompression surgery done on 7/11 at Duke in NC by Dr. Muh. (She’s a pediatric neurosurgeo, but specialized in Chiari 2 so I got referred to her). My surgery was 4 hrs long. The tonsils were down 2.5 cm. Instead of cutting through the muscle she peeled back (which promotes faster recovery), cut into the dura, took out the c1 vertebra, disected the tonsils off my spinal cord and applied heat to the bottom to make them retract up and put in the patch. I went into the hospital Thursday and was out Saturday evening. The first night after the surgery I stayed in the ICU with the lovely pain button they give you and you can push it very 6 mins along with other pain meds they give you as needed. Then Friday I went to a regular room and they took my button away but they still continue giving IV pain meds. You’re definitely extremly stiff. My surgeon recommended to keep brain activity minimal and I chose not to tell my boys until I got home what I did. I was sent home with a steroid, valium (for the stuff muscles), and hydrocodone for the pain. The first 5 days out of the hospital were not fun but they were horrible. A lot of sleeping! I actually got outside and walked down the road a couple days to get rid of cabin fever and fight depression. (You sit couped up too long feeling sorry for yourself depression hits hard). It’s now 12 days post op I’m completely off the hydrocodone and only take over the counter stuff for pains and the valiums if its going to be a busy day. Please feel free to inbox me if you want. I’ll give you my email and facebook info. I know some people have horrible experiences but don’t let that scare you.

6


TracyZ said:

Beary,

Please stay positive and try not to be afraid, even though that is normal.

Recover is subjective. The more complex your CM situation is or your surgeries may be the longer the recovery. Some Members have great surgical & recoveries.

These are some cm surgical success stories:

http://www.chiarisupport.org/forum/topics/success-stories-wanted

We also have negative surgical outcome stories. The Discussion Search still is not working so I can't provide any links. If you would like I can give you some Members names you can message if you have specific questions.

To Abby's list I would add....

1. Stay Hydrated

2. If you don't feel like eating drink protein shakes.

3. Rest when you feel like resting and don't push through pain. It will cause a set back. Listen to your body.

4. Call the Dr. on call if you have a fever, or problem with your incision or if something just doesn't feel right. You should never feel like your questions or issues are insignificant.

5. Try Arnica Gel for neck & shoulder muscle pain or even headaches as soon as possible after surgery. I have even been known to smear it all over my head and face. I buy Arnicare at Walgreen's. It does help & only costs about $12. It is homeopathic and doesn't interfere with any medications or have side effects. Ask your Pharmacist or Dr. if you have any concerns. It has been a Godsend to many on this forum. It took me about three days applying it 3 times a day to feel a difference. I am probably the biggest skeptic on this Forum about pain treatments.

6. VERY IMPORTANT: ASK YOUR DR. FOR A STOOL SOFTENER TO TAKE WHEN YOU GO HOME. MIRALAX IS AN OTC THAT WAS TAKEN OFF PRESCRIPTION STATUS IN THE PAST COUPLE OF YEARS. IT'S A WHITE POWDER YOU MIX WITH WATER AND TASTES LIKE WATER. IT WORKS WELL. MY DR.'S RECOMMENDED THAT IF YOU DO NOT HAVE A BOWEL MOVEMENT IN THREE DAYS YOU NEED TO TAKE SOMETHING. YOU CAN GET A FECAL IMPACTION VERY EASILY WHILE TAKING PAIN MEDS, PLUS EXPLOSIVE HEADACHES FROM TRYING TO GO.

7. Walk every day as much as you are comfortable with.

8. Ask you NS to recommend a Neurologist or Pain Management Dr for you to follow up with. After a certain point your NS will not provide your follow up care. I hope your headaches resolve, if not you definitely need post surgical follow up from a specialist.

9. Don't be upset if your recovery is slower than you think it should be or you can't do something that you could pre surgical. Everyone recovers at a different pace. There are even times we have to change the way we do things post surgical. At times we have limitations we didn't have pre surgical. It's not bad .....just different.

YES!!! Stool softeners are a must!! My doctor recommended Colace and it didn’t help much. 4 days post op I got a gravy biscuit from McDonald’s (thats some of that gokd southern stuff for the northerners that dont know :wink: ) and I finally went. And afer that it was another 5 days before I did again!!! It was horrible and painful and Colace did not do what it said it would do.