Arnold Chiari Malformation and herniated discs in cervical spine

Question

How many Chiarians needed neck surgery for bulging discs in addition to the decompression surgery?  My daughter is 18 mo. post op for the decompression, her syrinx at level C4-5 (approx.) is very much improved, however she's is terrible pain from the bad discs.  She's not crazy about having another surgery, but none of the medications she's taking for pain are helping.

selmaS · Accepted Answer

Hi....I was told at my 1 yr post op visit I should see an orthopedist, I have yet to see one as my DD's wedding was in the planning stages at that time and I did not want to deal with another surgery.

 My disk shifted from 6 months post op to 12 months to the point it is obstructing CSF flow just like the herniation did...no fun and I know it can be very painful.

 The disk issues can be related to Ehlers - Danlos, does ur DD have that as well?

  Was she checked for cerviocranial instability?

  This is one more issue that could be causing her pain.....

   Has ur DD returned to "normal" activities?

     "selma"

katydee · Answer

Thank you, Selma.  It's such a relief to know you had a good experience there.  We won't see Dr. B until sometime in Nov.  I'm not sure what we'll do if he recommends surgery as we have Horizon BC of NJ which they don't take.  We'll cross that bridge if we get to it.

selmaS · Answer

Hi.,..sorry I have not been online for a few days....the list can be located by using the search this community feature or go to the Health Pages....http://www.medhelp.org/health_pages/list?cid=186

Yes, I went to TCI in Great Neck....and Dr B was not my Dr but was in the OR during my surgery....I was so happy I choose to go there as I know I had some of the best care that is out there for Chiari and Chiari related conditions.

 I also had to pay out of pocket for the initial visit, but it was not bcuz I was out of state it was the NS's did not participate with INS when I went, I understand that many of them do now.....

 I will say it was well worth paying out of pocket and the care I got was worth driving there too.

katydee · Answer

Hi again,

I just read your post from Dec. 15, 2011 and you mention going to the Chiari Institute.  Was that the one on Long Island and what did you think?  We'll be seeing Dr. Bolognese.

katydee · Answer

Hi Selma,

My DD is 3 1/2 years post decompression surgery and is still struggling with pain, chronic exhaustion, and inability to sit for long periods.  She's taking a break from college for now.  We're taking her to the Chiari Institution in New York (Long Island) but will have to pay out of pocket for the consult since we live out of state.  I can't seem to find the list of providers you've posted in the past.  I'm looking for a dr in New Jersey who knows what he/she is talking about.  Can you post the list again?  Thanks.

selmaS · Answer

Yes, the problems do sound different, the solution tho sounds the same, I was told I needed a fusion, and that is what cash had....

 I went to The Chiari institue and the NL there did an eval for EDS and they were the ones to tell me I had it.

 There are ways to test for it, and I will look for the link to those tests and post them for u.

   "selma"

katydee · Answer

Is there a definitive test for EDS? None of the doctors have mentioned it so far, so I wonder if it's well-recognized or do I need to have a lot of info ready for our next appt. with the neurologist. It sounds to me like your disc problem comes from EDS, but "cash242" had a ruptured disc which seems like something different. I may have to look into a Chiari institute to get all the answers - I think there's one or two in NY. Do you know if they are good or should I look into the one "cash242" mentioned. It's far away, but I hear references to that one a lot.

selmaS · Answer

Thanks : )

cash242 · Answer

No I don't have eds that I know of, a friend of mine that has had the fusion 3 years ago said the only time she notices a limit in rom is when she is driving and backing up, I agree I feel like I have almost full rom already but it is only one level, my neck does feel more stable than before surgery so I am excited to see what full recovery leaves me with...will keep you posted.

selmaS · Answer

I did not have the details as to what to expect other then a fusion and y I needed it, so I was curious as to the particulars that were involved for urs.

 Did it limit ur range of motion? This is a fear so many have with fusions, and I am sure which disks get fused can affect this too, just wondering.

  And do u also have EDS?

   "selma"

cash242 · Answer

Sorry smart phone not so smart anyway...recovery for neck is similar as far as strengthening and building back endurance. Recovery is between 4 and 6 weeks. At two weeks I almost have the full rom I am left with which is alot. I hardly notice I have anything in my neck! It takes 3 to 6 months for the fusion to be complete. I am definetly glad I had it done, yes I have had some headaches but much better than before and neck feels so much better. Hope that helps please let me know if u have any ?s. Shannon

cash242 · Answer

I only had the rupture at c5c6 they made a incision at front of neck and went in and cleaned out the damage, then used an artificial disc with my bone marrow from hip. There is a plate on outside holding it together. Hip pain isn't bad, usually ur in hospital 1 or 2 days, sent home in neck brace that you wear for 2 weeks. Pain is minimal bet much like pfd surgery as far

selmaS · Answer

Very true, those with instability will find they have more pain and issues post PFD....so it is important to know all of what is going on, and know the pain may be something other then chiari.....

 Cash- can u explain the surgery - what exactly u had done?.....I am considering if and when I may have it done now that DD's wedding is behind us and I know it is an issue for me.....thanks
 
   "selma"

cash242 · Answer

I had my decompression surgery in feb and am 2 weeks post op from fusion of c5c6. I went to chiari inst and dr oro said decompression surgery can make a weak neck worse. my disc ruptured and was taking up space near my spinal cord among other things. I did this surgery because my ha was getting worse every day and I knew it wouldn't get better until I fixed it. This surgery was so easy compared to the other one. Good luck!

selmaS · Answer

EDS could explain all the disk issues....and y I mention it...soooooo many with chiari do have  both, but the disk issues are a good indication that there is some problem with the connective tissue holding them in place......

 I would also check her vitamin and mineral levels.....Vit B12, D and magnesium and potassium....low levels of magnesium and vit D can cause fatigue....

  I will post ne updates I get on Molly....

    "selma"

katydee · Answer

Thanks for your reply, Selma.  No, my DD isn't able to return to her "normal" activities.  In fact, she's taking a leave of absence from college for the spring semester because of the pain and sleep problems.  She's having a sleep study done after Christmas, but so far none of her doctors know why she can't stay awake.

I don't think she has EDS, but I'll bring it up to the neurologist during our Jan. 5 appt.  I think her neck pain comes from the two bulging discs - I just wondered if other Chiarians had bad discs too, or if it's just a coincidence.

I was so sorry to hear that Molly is back in surgery.  I'll be checking the site for any updates.  Thanks, Selma