Hello again, I had a decompression surgery in June of 2012 and so far so good for the most part. Of course I've had my fair share of issues but the last few days I have had some very concerning issues and was wondering if anyone else has experienced such problems,,,,
I seem to have developed a bump on the right side of my neck (next to my scar) which is very sore and it could very well be just a stress-related mass or a mass of scar tissue, I'm not too overly concerned with that. But oddly enough since that thing has popped up my vision has gone blurry (in and out) and the right side of my face and right eye squints upwards and has a lot of pressure in it. It looks like my left side is drooping but it's not, it's my right side tightening. It can last anywhere from a few minutes to a few hours and then comes and goes. Nothing seems to trigger it, it just comes on. I've had a migraine come and go with it and I lose feelings in my legs and feet too. It all seems a bit too related to ignore.
I'm one of those people who would rather wait for it to go away than call the dr. but before I had the surgery my head would get this tingly feeling and I know it sounds weird but my brain would feel "hot" on the inside. I was never warm on the outside and I didn't have a fever but my insides always felt like they were on fire, hard to explain and even stranger to hear I'm sure but it's how I felt. That feeling went away since the surgery but now it's back with a vengeance.
So here's my question, has anyone else had anyone of these issues pop up post op? I'm going to call my neurologist on Tuesday but I have to say I'm a little freaked out at this point. Sometimes just knowing someone else out there has gone through it makes it easier to handle. Thanks as always :)
I have had old symptoms pop up post op, but besides the headache my symptoms are different from yours. Off the cuff I would also guess they are related to the Chiari. I’m glad you are seeing your neurologist so soon. I might even put a call into your NS office to see if you can see them too. You deserve a new mri too. A lump is concerning and so are the symptoms of numbness. I’m sorry you are dealing with this. Let us know what your NL says tomorrow. Hang in there.
Thanks for the input. I'm glad to hear that you would both go to the Dr. I'm not one to usually go but I think this warrants a visit. I thought it odd that my NS didn't give me an MRI after the surgery so I don't think it would be too off the wall to ask for one now. Thank you for the kind words Beeba, It means a lot to me. I don't feel that I am "tougher" than anyone else, and believe me you are strong! Anyone who deals with any sort of ailment is strong. It's not easy being handed what we have been, but I think we're all doing a pretty good job. Sure we all have our off days, but I say we deserve them :) I hope everyone continues to heal well. I'll let you all know what the dr. says. (they were all off today - Labor Day). Have a great night everyone :)
I have had my surgery 10months ago,one of my old symptoms has returned,it’s not exactly the same as yours.My chest is where I have a weird feeling,it starts to feel warm and tingly right down into my breast then I get hot all over and sweat profusely.My appointment is Sep.9th sure hope my Doc. can shed a light on this and other symptoms left behind after the decompression.It is a good,thing that you have a app. This chiari is so strange the symptoms can be difficult to explain ,so many mixed up feelings sure hope you can find answers you’re not alone in this.I thought it would be over after the surgery…NOT!! I still feel a lot better than before,and maybe these things will be solved.You will be in my prayers!I understand how you must be feeling,it’s two steps forward then one back.
Lynn, one of the things that my doctor pointed out to me that the surgery for Chiri is a 'treatment" and not a cure. My understanding is that one of the main purposes of the surgery is to restore brain fluid flow and to decompress the brain stem. So, I never expected to be perfect or cured after the surgery. Hopefully doctors will explain to their patients that there is a percentage of people with various outcomes after the surgery; some will be much bettter, some will not have improement and some will have minimal improvement. It varies from patient to patient. Part of it depends on getting a good competent neurosurgeon who knows how to treat Chiari. Fortunately I live near Dr. Fraser Henderson who seems to be able to work miracles.....I'm so lucky to have found him. However, I've had some symptoms return too although they aren't as bad as before. It's been three years and I just recently started having a little more dizziness. and occasionally will get some numbness in one of my hands. I knew in advance though that might happen.. It's been three years since my surgery and for the most part I'm much better than I was before the surgery. I have felt that it's important that I help raise money for the Chiari Foundation so hopefully their funding of research efforts will help find a "cure" for Chiari.. Prayers for you that you get relief from your symptoms.
Hugs. Shirley
Lynn Messer said:
I have had my surgery 10months ago,one of my old symptoms has returned,it's not exactly the same as yours.My chest is where I have a weird feeling,it starts to feel warm and tingly right down into my breast then I get hot all over and sweat profusely.My appointment is Sep.9th sure hope my Doc. can shed a light on this and other symptoms left behind after the decompression.It is a good,thing that you have a app. This chiari is so strange the symptoms can be difficult to explain ,so many mixed up feelings sure hope you can find answers you're not alone in this.I thought it would be over after the surgery..NOT!! I still feel a lot better than before,and maybe these things will be solved.You will be in my prayers!I understand how you must be feeling,it's two steps forward then one back.