Recovery after surgery - advice needed

[jcandpcb]

Hi Everyone!  I was dx with Arnold Chiari Malformation in August after 3 years of constant back pain, abdominal pain, nausea, vomitting, fatigue, weight loss.  I've always had migraine headaches so that was never a chief complaint and probably one of the reasons it took so long to get a dx!  

Anyways, have had a ton of issues trying to get in with a Surgeon in my area.  I finally had an appt with one 19Sept and he told me the surgery is endoscopic, outpatient or at the worst maybe 1 to 2 days in the hospital.  None of my research said the PFD surgery is outpatient!  I'm trying to get an appointment with Dr. Coulture at Wake Forest Baptist in NC asap.  My husband is due to deploy at the end of this month and we had hoped I could have surgery during his "block leave".  If that happens, how hard is the recovery?  We have 4 kids - 5, 7, 8 & 14 yo.  I have family less than a mile away but they have serious health issues themselves and can't help out.  Will I be able to Drive?  Would you think my husband should see if he can stay and join his unit in a little while once I was "out of the woods" in terms of complications?  I am also deaf, so making phone calls, communication in general is harder for me.  I do know that after last week - I had a horrible sick week - pain every day, unbearable headache, nausea, vomitting that by Friday I had no reservations about having surgery as I can't continue to live like this - not knowing if I'll have a good day or be in my bed unable to move.  I'm really nervous.  I'm double jointed too, have gastroparesis (when your stomach doesn't digest food normally) and I know EDS is something we should rule out or consider during this process.  Any help or advice would be greatly appreciated!

[Viva001]

Have you tried Dr. Rosner in Hendersonville?  He might take you as an emergency.  He also works out of a small, intimate hospital.

This condition is a Big Deal, and the operation needs to be done and monitored by a specialist.
There doesn't seem to be any way to predict recovery.

Good luck.

[selmaS]

  Hi and welcome to our Chiari forum.

I am so sorry u r feeling so poorly, but getting the right Dr is key and u were right to know that the first Drs suggestion was not a good one, especially ifu have EDS like u suspect.

For EDSers we r more likely to reject foreign matter like the synthetic, bovine and cadaver dura patches...so we need to have our pericardium harvested to be used. I also did not have staples or stitches they used glue and sterri strips instead as EDS skin can tear more easily as well so stitches may fail and then u have a CSF leak....and rejection of these patches can develop into ICP.


With EDS we tend to heal slower then most....so make sure they look at u for other related issues like disk issues and tethered cord, ICP, POTS, syrinx,sleep apnea,....

  U will need help for quite a wile with a brood like that.

I am 3 yrs post op and still am not driving bcuz of other related issues...so, it is not an easy thing to answer....

Please make sure u see a true Chiari specialist who is going to make surgical adjustments for ur EDS., and rule out other related issues b4 suggesting surgery.

Do u have to go to a Dr with the military?