Tethered spinal cord after chiari decompression

[BB11]

.  I had decompression w duraplasty and laminectomy Jan '12.  after my surgery I began experiencing a lot of back pain. Still have headaches and the numbness 2 days/week. An MRI was ordered of my spine and was just told i now have a tethered spinal cord at L1. Surgery is recommended. However, i'm not really sure i want to go thru with another surgery. I have some incontinence issues as well. Was told yrs ago after hysterectomy i needed bladder suspension so i figured it was from that. However i have had a handful of times with bowel incontinence (not quite making it to the bathroom in time. My surgeon said she thinks blood from my decompression ran down my spinal cord causing the tethered cord  My question is how common is this? Does anyone else have similar experience?  Im also looking for some important questions to ask my surgeon before i decide if i should go ahead with it  The thought of another surgery depresses me and im concerned about the risks which she said are spinal leak, nerve damage or not getting better. As a side note,  Its interesting to hear so many say not to see a chiropractor after chiari decompression (both here and elsewhere)  I specifically asked my NS if i could and she said i could.  At my follow up after my mri , my surgeon said there is plenty of room now since she removed the tonsils and she's not worried about me seeing a chiro.  Still hesitant. I do have EDS and constantly feel the need to crack my joints. My husband wants me to just get the surgery. He just wants me better. The last 2 yrs have flipped our life upside down. My chiari was discovered after i knocked myself out with a car door. Apologize for rambling but this is overwhelming for me. Any advice or suggestions (selma?  I see your comments a lot. Would love to hear from you).

[BB11]

Thank you. They're waiting for a bed in cardiac unit for him so i came home to rest on heating pad n take meds before heading back  Those chairs are not good for pain. Any word on Molly?  

[selmaS]

  Oh my I am so sorry ...sending Prayers he is ok.....

  I am glad u enjoyed the threads and links : )

  take care of ur DH and ur self <3

[BB11]

Boy ive been busy with the links you provided. Lots of great info. The fribble thread is great. Thx so much  

Now im in hospital. DH having chest pains. Dr sent us to hospital. Its gonna be a long day.

Xoxo

[selmaS]

  We have a list of Drs the members here have been to, u can use that list to research Drs.....I had it on this first page, but u can also locate it in our Health Pages.....http://www.medhelp.org/health_pages/list?cid=186

  That sounds like a great machine ...same one that they use on Project Runway....lol...a Brother....

When I got my machine 30 some yrs ago, I had free lessons from the place my DH bought it...it recently broke....I can not change the stitch...so not sure what is wrong, so I have my mom's old White sewing machine..and it is so old it does not work right, the screw that holds the needle in loosens as u sew, then the needle falls out or breaks...ugh...what a mess, and the bobbin winder does not work on that machine, so I use mind to wind bobbins, and hers to try and sew.,..lol....

Yes, Molly has been thru a lot, too much in a short time....but she is a very strong girl and she will get thru with out prayers and all the love of her family and friends. <3

There are 2 Drs down that way, MD and NC so u would have a choice depending where ur friend lives.....

Check out the Friday Fribble thread : )

[BB11]

Thank you. I understand about recommendations. My dd stopped breathing an hr after i brought her home from the hospital. Thankfully her pediatrician was a respiratory specialist. He was great. Doesnt care about ur feelings. He cares about his patients and doing the best for them. That is the type of dr i want. Someone that knows their stuff but isnt such a know it all that they think theyre God. i learned to trust my gut with hosp drs with my dd  Just bc they say something doesnt mean thats the way its gonna go. I have a friend that lives in NC. If the drs there are good that may be an option. Could you msg me the names. You dont have to say who to go to bc i'll do my own research but it could give me a starting point to see who can read my mris and records.

Sewing machine is a Brother XR 1300. 130 built in stitches. I havent used a sewing machine since 7th grade. Im going to see about taking some classes at JoAnns w my machine or some other place bc i need to learn how to use it first, get some basic sewing down then start on quilting. My cousin was a seamstress for many yrs. she recommended what kind i should get. Unfortunately her circumstances have changed so she cant teach me but i'd love to have something creative to do. Love my dogs but having a creative outlet to pass the days would be great.

Praying for Molly tmrw. I will be thinking of her and sending healing energy all day!  Omg 18 surgeries. I cannot imagine.

[selmaS]

  Since we r all different and u have to like and trust ur Dr too, I feel u have to choose ur Dr, so I do not suggest Drs, NY, CO, MS, NC....have some of the better Drs for Chiari....

I did travel out of state as it is more important to have a well informed and experiences Dr then  to have one close to home that is MHO.

I love to sew and I do make quilts and our Friday Fribble thread we do talk about what projects we r making.....

What type of sewing machine did u get? I want a serger.....and my machine fixed....I miss my machine, I ma using my mom's old one right now and I am  going nuts as it has issues....lol...