Hi, my name is Karen and I had a Chiari decompression and Cervical Laminoplasty on Nov. 23,2013. I had Tethered Cord surgery 6 months later. Right now the Chiari doc has sent me to a headache specialist to get my headaches under control. Now I still have left arm pain, pretty severe neck and shoulder pain, plus the headaches. I also getvsevere pain in the right temple area when moving like to get up from my chair and when straining in the nathroom or coighing or sneezing. Now I am getting pain in left leg, pain in back when sleeping, numbness in left side including down to leg. Numbness is very strong in face and even in swallowing. I am also having a very hard time emptying my bladder. I have to push to go and then really strain usually 2 more times to get the urine out and I am not sure it is all emptying. I also have blurry vision at times, trouble breathing at times and extreme sweating at times. If anyone has had these symptoms or can offer any insight, i would greatly appreciate it. Thanks Karen
I’m having some of the same symptoms… the bladder issues I’m having a super hard time with, back pain, headaches, lower abdominal pain, some trouble swallowing, headaches, sore neck, etc. I had decompression surgery on Sept 30 2011. I did well until about september/october last year but things have gotten a lot worse pretty fast since march. I’m lined up to see a gi specialist, a urologist, a neurologist and if my mri (whenever I get it done) comes back abnormal I will be seeing my follow up Neurosurgeon again.
Wow Beebe, I am so sorry you are going through this. I hope your Neurosurgeon can help you. I don't have problems with incontinence or controlling my bladder, it is that I have an extremely difficult time getting the urine to come out. I start to go but it takes me hard pushing 2-3 times to get it out and I am not sure I am emptying. I can feel,fullness up to my ribs, but I was not sure if that was constipation. Thanks for your response, let me know how you make out at the Neurosurgeon. Karen
NieNie0326 said:
I'm having some of the same symptoms... the bladder issues I'm having a super hard time with, back pain, headaches, lower abdominal pain, some trouble swallowing, headaches, sore neck, etc. I had decompression surgery on Sept 30 2011. I did well until about september/october last year but things have gotten a lot worse pretty fast since march. I'm lined up to see a gi specialist, a urologist, a neurologist and if my mri (whenever I get it done) comes back abnormal I will be seeing my follow up Neurosurgeon again.
Thanks so much for your response NieNie. Who did you see that sent you for all these appointments? Just wondering if I should see my GP doc or call my Neurosurgeon? I wish you the very best, let me know how you make out. Karen
NieNie0326 said:
I'm having some of the same symptoms... the bladder issues I'm having a super hard time with, back pain, headaches, lower abdominal pain, some trouble swallowing, headaches, sore neck, etc. I had decompression surgery on Sept 30 2011. I did well until about september/october last year but things have gotten a lot worse pretty fast since march. I'm lined up to see a gi specialist, a urologist, a neurologist and if my mri (whenever I get it done) comes back abnormal I will be seeing my follow up Neurosurgeon again.
My family doctor sent me for them, however my Neurosurgeon suggested having those specialists in place prior to sending him the MRI results. My neurosurgeon (he didn’t do my surgery but he did my follow up because I had to move provinces) saw me in Feb 2012 and he is really great. He thinks he may know what is causing all of my problems, he thinks it’s stenosis, and he said to get new mris but to line up these specialists just in case it’s not stenosis or Chiari.
I’m having the same bladder issue almost. I have a lot of lower abdominal pain and on days that the pain is super intense, the bladder is okay, but the following day, usually in the morning when I first wake up, I am in so much pain that I can’t squeeze to make myself pee. It’s like my muscles are so cramped up and locked that I can’t squeeze or release them in order to pee. I have to sit and really concentrate. And then once I finally pee, I’m going pee every 10 to 20 minutes for the next 10 hours. And I always feel like I need to pee. I’ve never had any leakage but I feel like I need to wear a pad all the time even after my period is over because I just feel like I need to go.
Hi NieNie, so sorry you are having so much pain. My symptoms are a bit different. I do not have pain in the abdomen, I have a fullness/pressure. I have trouble getting all my urine to come out,,I have to really strain, I go and it does not all come out then I have to really push a couple of times and I am not sure I am emptying all the way. I also do not have to go that often during the day. I wish you the very best and hope that you find some relief very soon. Karen
NieNie0326 said:
My family doctor sent me for them, however my Neurosurgeon suggested having those specialists in place prior to sending him the MRI results. My neurosurgeon (he didn't do my surgery but he did my follow up because I had to move provinces) saw me in Feb 2012 and he is really great. He thinks he may know what is causing all of my problems, he thinks it's stenosis, and he said to get new mris but to line up these specialists just in case it's not stenosis or Chiari.
I'm having the same bladder issue almost. I have a lot of lower abdominal pain and on days that the pain is super intense, the bladder is okay, but the following day, usually in the morning when I first wake up, I am in so much pain that I can't squeeze to make myself pee. It's like my muscles are so cramped up and locked that I can't squeeze or release them in order to pee. I have to sit and really concentrate. And then once I finally pee, I'm going pee every 10 to 20 minutes for the next 10 hours. And I always feel like I need to pee. I've never had any leakage but I feel like I need to wear a pad all the time even after my period is over because I just feel like I need to go.
Kms, TCs can re-tether. Sorry you are having the recurrence of symptoms. I have the same bladder issues you do with problems emptying, but I also have leakage issues too. My L-spine MRI showed no sign of TC but I’m wondering if Ive got it. Karen and Beeba, did your TCs show up on an MRI?
Jenn
Jenn, not all TC's show up, but if the doc thinks its that, he/she may go in anyway. I hope you find out what it is, as it is certainly not a comfortable thing to live with. Let me know how you make out. Karen
My first one did, I think it was pretty bad. I had that surgery like 6 months after my decompression which was 11/23/13, is it normal for it to come back that soon. I have not even called Dr. Heffez yet with reoccurring symptoms. I was a little disappointed at my last appointment because I got better for a while, but some of the symptoms came back. Dr. Heffez sent me to a Neurologist for the headaches to try to get them under control. That doc put me on Topomax and I am not sure, but I think the headaches may be worse. I have a lot of neck, shoulder and arm pain and Dr. Heffez wanted me to try a collar, but every one I tried pushed on the incision and made the pain worse. My GP doc suggested I see an Orthodic doc to have one made to fit so it was comfortable to wear. The orthodic doc wanted an order from the surgeon and when I called Dr. Heffez, he said I did not need that. So here I sit. Karen
Karen, have you tried the aspen vista with the two cups in the back? The back of my head is sensitive too from the surgeries but if it bugs me I put a folded up sock back there. If you have any type of instability the collar can make a HUGE difference and help with diagnosis. I had my initial decompression (with Heffez) then headache came back but even worse. It was cranial cervical instability; basilar invagination, retro flexed odontoid, sharp clivo axial angle, and subluxation of cranio cervical joint.
Thanks for info about TC :)let us know what happens
Jenn
Oh, and Heffez wrote me a script for the collar…,ask his office again cause the othodic places require a script.
Jenn mine just says Aspen. It has one hole in the back and there are 2 slots for the closures. What did they did they do for cranial cervical instability? It did feel better when I wore the soft collar, however it
hit right on the surgical spot which caused to much pain and it did not breath and made me sweat which I already have moments of uncontrollable
sweating.
I will try to upload a picture of the two-cup model when I get home - but the folded sock is key :)CCI is treated with another surgery- posterior fusion of the skull to C-1 and C-2. The head is usually repositioned onto the neck and then fused together. Worth it if that’s the issue. I went to Fraser Henderson in MD for this. It’s hard to get the CCI diagnosis… You need a flexion extension c-spine MRI, a 90 degree rotational c-spine CT scan, then the right NS to interpret it (I don’t think Heffez does this)
Go to CSFinfo.org
Videos
Metropolitan Area
All videos about EDS and cranio cervical instability.
Please take a very close look at Ehlers Danlos Syndrome.
Wow Jenn you have been thru quite an ordeal and you still have problems. I was wondering if you think I should try a towel in the in the neck brace I have, I will know if it’s working. I am not sure if Dr. Heffez will give me an order for a new one. Do you live in WI? Who did you get for a new doc? I am so sorry you have had to go thru all you have. I will keep you in my thoughts and prayers. Karen
Thank you for the kind words Karen, I appreciate it. Yeah try the towel with the one you have. I hope you can work I so you can give it a fair shake. I live in New Mexico, my second surgeon is Fraser a Henderson in MD- highly recommend him!!
Prayers to you too 
Jenn