Shrinking after decompression

Tuesday will be 11 weeks since my pfd. I had my follow up with Dr.Oro on Friday and I am desperately needing advice. I was 5’7 3/4" when I was around 18. At about age 27, I found out that I was only 5’6 1/2". No one could ever explain how this happened. At my initial appt with Dr Oro, in October 2013, they also measured me as 5’6 1/2". I had her do it twice just to be as accurate as we could. On Friday, using the same ruler attached to the same wall I was only 5’5 3/4". I had her again measure me twice. I almost broke down. I brought it up 2 different times with the Dr and he had no answer nor did he even appear to want to discuss it. He pretty much said that without having been there both times, he would tend to blame human error. You’ve got to be kidding. I asked about CCI and cranial settling and he said that was a long process that happens over time. Since about 6 weeks post op, I’ve started to have Chiari headaches again. In fact, on Friday, I told my cousin that had traveled with me that I felt exactly the same as I did before surgery. No better. Actually worse right now because I have weird and painful things going on in my head that I’m hoping is just normal healing. My plan is to try my best to get in with Dr Henderson. Has anyone else had this happen? I can’t seem to find anyone losing height in the discussions. Oh and also, I have a feeling that EDS is possible as well. The PT that I saw a few times said that I was very lax from his standpoint and I have a few other symptoms. Please help!

Hi Aggie,

I have read somewhere before about people with CM shrinking can't remember if it was related to those who have had surgery. I think I read it on the WACMA (world arnold chiari malformation association) website and there was if I remember correctly a few people who had this issue.

Aggie, I have shrunk too. I used to have a barely detectable scoli and felt and looked straight as a board but now I have an undeniable full on scoliosis curve- I can feel it when I walk I’m definitely crooked. Cranial settling is a possibility - do you have rheumatoid arthritis? But I think scoli is probably more likely. Causes could be Chiari, EDS, syringomyelia, hydromyelia, and I’m sure many other neural tube defects. Maybe ask your PCP for a T- spine xray so you can keep an eye on things. If you think you have EDS and your symptoms continue, I would try the cervical collar that restricts the forward and backward motion of your neck and start thinking about seeing Chiari surgeon who also diagnoses and fixes CCI. I hope and pray these symptoms are temporary and you heal out of this- which is totally possible!

Hugs, Jenn

I had decompression on 12-16-13, and I was 5'7" before surgery. After surgery, i am now not even 5'6". I have lost an inch, and I know that it has to be from decompression. I had read where others had made comment about shrinking due to laminectomy, but I was told that they were not going to touch the C1. Unfortunately, I was so plugged in the foramen magnum and the fourth ventricle was completely blocked that my neurosurgeon had to remove the C1 in order to get the tonsils out. So here I stand, an inch shorter. :) Not too happy about it, but at least it was only an inch. I also know that I am having cranial settling and crainial cervical instability since decompression, so we shall see just how much it affects my heighth in the long run.