Hello, I am 4 years post correction for CM-1. I have several other medical issues, which are for the most part controlled, but I've started having headaches again here and there, neck pain, dizziness, and scalp pain and sensitivity.
I've done a lot of internet digging and found plenty of information about what to watch for immediately after surgery, but can't find anything about what to watch for/how to determine if something is related to the surgery or condition and when to see someone about it. If anyone can help me by providing links or information on this, I'd really appreciate it.
I am in the same boat...my decompression was 4 yrs ago this mth and all though I have felt some relief, I am struggling with leg pain and gait issues...still searching for answers. I went to a NL and he was of no help...would not order an MRI to rule of SM..that is why my pain doc referred me to him in the 1st place.
I called my NS who is in another state (I moved 6 hrs away 2 mths after surgery)..anyway..he thinks I should have a brain MRI and a C-Spine MRI to 'start with'.....Well....my doc up here seems to be afraid to order any costly tests..even though I have good insurance! My doc here had his secretary call me and say.."Maybe your RI surgeon should order the tests?"
I am in limbo now...
Hopefully , others here will chime in and give us both advice and their own experiences. Good luck and keep us posted on how you are.
Glad I'm not alone, but sorry to hear you're having problems, too. I also have had an increase in leg pain and am having problems lifting my feet when I walk. I had a great amount of relief after my surgery, and it has just been since I had my thyroid removed 2 years ago that things have started to get worse. I did ask my rheumatologist- who originally found the CM- about doing some type of imaging to see if there was something new going on, but he wants to wait.
Here's to getting some answers and feeling better! :)
I just read "having problems lifting my feet." What exactly do you mean by that and was that ever addressed and diagnosed as a symptom of Chiari or SM? I had that prior to surgery and now it is starting to happend again. My docs are blowing it off, but that is one of my sx that really concerns me.
It is so hard for me and most of the others here to get someone that they can really depend on. It is trial and error, it seems. I would try to get someone to do an MRI. It is always better to be safe than sorry. Maybe it would end up being a simple fix. Lol...Like DS was a simple fix huh. Hope you all start feeling better soon!!!
Martha Linbo-Terhaar said:
Lori,
Glad I'm not alone, but sorry to hear you're having problems, too. I also have had an increase in leg pain and am having problems lifting my feet when I walk. I had a great amount of relief after my surgery, and it has just been since I had my thyroid removed 2 years ago that things have started to get worse. I did ask my rheumatologist- who originally found the CM- about doing some type of imaging to see if there was something new going on, but he wants to wait.
Here's to getting some answers and feeling better! :)
I'm so sorry to hear that you have recurrent problems. I am 9 months postop and have also been having recurrent problems. Headaches, lightheadedness, vision problems, memory problems, cognitive issues, pain in my neck and shoulders and down my spine, but my NS had a new MRI done and says that everything looks ok. I understand the imagining looks fine, but its not a real live picture, and we all know how our bodies are feeling. If you get any answers, please share with us, because their are obviously things that can occur post op, but we don't know how to get answers on getting relief. Praying that you feel better!
I had my decompression in 2001. I got some relief but had a terrible time recouperating from surgery. It took almost 2 years. Then I started to steadily get worse again. I went to a nl for years who was very reluctant to do any tests even though I had great insurence or look into why I was going down hill.
I did have several MRI's of the brain and neck over the years and I was told they were "fine" I never thought to look at them or read the reports. I became aware of a CineMRI and asked my nl for years if she could order one to see if my CSF flow was blocked. She refused, so 2 years ago I fired her and started to look for answers. It took me a long time and a lot of doctor visits and a lot of pain to find someone but I did. I found an amazing Chiari specialist and she did a CineMRI along with a lot of other tests.
My CSF flow is blocked at where C1/C2 from scar tissue build up from my first surgery. She said that it would have happened about a year to a year and a half after surgery. She also showed me my brain MRI and I gasped. My patch is loose and it has created a "sink" that is holding an egg shaped pocket of fluid and there is a noticable protrusion at the base of my skull on the left side because of it. Now that I know it's there I can feel it when I compare it to the right side.
Scar tissue build up may or may not be what is going on with you but I want people to know that it's a possibility so that maybe they can get help quicker than I have. I am going to have a revision to remove the scar tissue and tighten the patch hopefully soon. However, she has given me no guarentees as to my set of symptoms because it has been blocked for so long and undoubtably has done permanant damage.
I have terrible burning pain especially in my legs. I have a very hard time walking and picking my feet up to walk. I am exhausted all the time but have wicked insomnia... plus all the head, neck, face, and left arm pain. When I first went to see her and told her what I was going through she rattled off at least 5 things it could be. She also said that some patients just develop other symptoms after surgery without a good reason. I would ask for a Cine to see if there is a blockage anywhere and anytime you have imaging done I would look at it and read the report. This may be a "no brainer" to some but it never crossed my mind all those years. I'm not an expert but my brain MRI looked far from "okay" I share my story also as a cautionary tale as "What Not To Do" I gave up and suffered in silence for many years because I had such awful experiences with medical professionals and I was afraid to switch doctors.
I hope that you find your answers and feel better soon.