As you can tell In my title of my post I am having a rough time. Yesterday I was in a TON of pain and My foot went numb just laying on the couch...I called my advice nurse and she told me to go to the ER. I got pissed and asked her why if the DR's are only going to give me pain meds and send me home and I told her this isn't anything new to me it is just more severe than normal....I don't think she liked me much lol....To say the least I didnt go. I want advice for you guys. I have mild facet joint degeneration in my lumbar spine and mild disc bulging. I had the decompression surgery in october had a hiccup a week after and fluid build up and am still recovering but trying to deal with the new issues. My body has been getting random muscle spasms all over and now today my right hand and foot are numb and tingly. I also have a headache and neck pain along with back leg and hip it feels like deep muscle pain. I have tried accupuncture, physical therapy, and TRY to go on walks or strech but cant do it consistently due to the pain it causes and the pain I usually have before. I have an appointment with my dr wednesday who will listen to me but usually only does half way work and is kinda quick to give a prescription but I am not going to let him get away with that I plan to go in there with some battle armor on. One time I saw him and he was scared to do anything cus I had just had the decompression surgery. He is good though cus he researched chiari before I even met him and he told me I am his only chiari patient which is good and bad....Sorry for the venting I am just starting to get frustrated and mildly depressed. Any advice anayone/?
Hi...wow, u poor thing...I know how frustrating this all is...but, it sounds like ur disk may have shifted and may no longer be classified as a mild bulge?
Mine was a mild bulge as well even b4 surgery...but it shifted and now causes a CSF blockage just like my tonsils did and I also have numbness and tingling in my leg and foot.I also get it in my left hand...it seems to always be my left side that is affected.Even my face it is the left side....
I would suggest u r seen by an orthopedist to recheck ur disk issue to see if that is where ur issue lies......
No worries on the venting...I totally understand : )
I'm sorry to hear that things aren't going well...
What popped into my mind is that you sound like you are progressing the way I was BEFORE I had the surgery. From what I remember, they already did MRI's and everything is ok? I wish I could help you more but it seems sometimes it is so hard to get answers to the why? regarding our symptoms.
I'm with Selma..go to any specialist you can think of and try to get some answers. It is not a good thing to mask these things with drugs so I am glad your aren't accepting that. An orthopedist would be an excellent start. My GP doesn't know much about Chiari either and I'm sure I am the only one so I just tell her what I think it is and ask for a referral and it's worked for me!
Venting is what we are here for, I hope things improve for you!
Thank you for your replies Selma and Cmoeller. I want to know if there are any tests I should ask for from my Dr. When I see him on wednesday? Especially for the back and leg pain.. I really want to get to the bottom of this. I mean even if he tells me he thinks it is related to Chiari I would be willing to accept that. I just want to make sure its not something else or new. If it is I want to get it taken care of. I am only 27 years old I am having a hard time dealing with all this pain... I went to the store to get my blood flowing to see if that helps and just driving to the store I felt sick to my stomach. I took pain meds this morning and my headache went away and now its coming back. My leg felt fine walking. Now sitting my leg hurts deep in the muscle just above the knee and my right foot is numb and so is my right middle finger This is weird.....
Well in my experience the biggest problem is that they don't have tests that accurately portray what is going on. Due to the muscle spasms you could ask for an EMG or EVP (evoked nerve potential test) but honeslty, neither of them did me any good. The best bet would to get a CT that is looking specifically for bulging disks like Selma said...especially if you know what area the pain is stemming from and get them to focus in on that.
I know how you feel about wanting to know if this is just Chiari damage or something else. I sort of keep hoping it is something else b/c then that might at least be fixable..but so far everything is pointing towards nerve damage for me. I hope you get some answers soon!
Hi everyone I wanted to bump this back up because today is absolutely horrible! I wrote my pcp a few days ago when I had my 3day headache and asked him to develop a plan and collaborate with my NS so he emailed me back and said he did and is waiting for his response....I wrote him again and asked him to do some imaging on my legs and hips because today is the worst it has ever been I started crying at work and almost want to go to the ER...both of my legs hurt and my back feels like someone to a baseball bat to it.....I also asked him to do some blood work and he said he doesn't think either one will help....I think that is bullpuckey and would maybe shed some light on this and who cares if nothing shows at least I would have my answer.....I got so upset I started cussing and crying and had to walk away from he computer....he essentially said he wants to wait for my NS response and wants to see what e physical medicine dr says on the 4th....I have an appointment with a brand new Dr. Who is the chief and specialist of the physical medicine department and he specializes in neurological and muscular-skeletal issues so he better know his stuff or i am going to ask for a external referral outside of kaiser.... Am I doing the right thing guys??? Do any of u have any advice??
I totally understand your frustration today. Who cares if it won't do any good, according to him...maybe it will. I was crying today because I am so frustrated. i got a reply from my new PCP (who I have never met) about my Vit D being low (its 18, normal range is 30-100 - with 50-80 preferred). she copied some data from a web page and told me to take suppliments of 800 IU, which I don't think will be enough. I replied back listing some symtpoms I have and asking if she could give me a more taylored plan and possibly a cause for the low Vit D. I would think these would be normal things doctors would do. I have had muscle pain for 8 years and I am just tired. I think i have DX and the doctor can't even type a e-mail, she just copies and pastes data!!! WTH!
I agree with Selma and feel this is kind of Kaiser operates...I have felt this way for a long time. They have always been quick to prescibe something with out testing.
To make things worse my husband and I got into an argument because he feels I haven't been doing enough around the house, i tried to explain that I am tired and don't feel well - but that didn't help much!
I really hope you get the answers you need. I can't believe Dr. Won isn't getting back to you!
You could ask for a "provocative discogram" test, or a myelogram, if it would help with your symptoms, but I'm not sure, because I'm not an expert in that field. It sounds like you could use another MRI or CT to see what is changing, but I don't know how many of those insurance will authorize in a short time.
An EMG never did me any good either. My legs have been tingly & stiff for so many years that the skin on the bottom of my lower legs has turned shiny & weird - but it never shows up on the EMG. So I don't know if I'd bother with one, because if it turns out normal, then they could rub it in your face.
Also, if you back & stuff hurts that bad, then I would be wary of physical therapy, because if something is injured but you don't know what, then it can do damage.
Just wanted to keep you posted. I heard from my Dr on friday and he told me my NS wrote him back and told him he wants to see me again and to order another MRI of my brain and check for Hydrocephalus. Is it a possibility to get Hydrocephalus after the PFD surgery? That makes me nervous and So I set up my new Brain MRI for June 4th at 6:30 am and then at 9:30 I see the Physical medicine dr who specializes in Neurological and Muscular Skeletal disorders and then on the 18th I have a Appoinment with my NS. All of this stuff is getting frustrating....The Last 2 days have been good too. Saturday I took my meds 2x and Yesterday I took it 1x which i guess is good considering I usually have to take it 3x a day... So far today I have ony had it 1x too.... I'm getting tired of the Waves of pain....
It is possible to have a CSF imbalance called pusedtumor cerebri or a newer term is Intercranial hypertension....basically u r producing too much CSF...so too much fluid on the brain..... hydrocephalus.
Usually a shunt is placed to help divert the CSF to the stomach.....
Please keep us posted and we will keep u in our prayers Devin..... I pray all goes well.
Well I'm glad to hear that they are going to check it out...I have heard of having hydrocephalus too after surgery...that is why several ppl end up having shunts. Whatever it is, I really hope that they get an answer for you!! Good luck!
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