Did anyone order a CINE MRI to check your CSF flow or a lumbar puncture to check your CSF pressure?? How is the surgical site now?? I had my surgery the same day as yours, however I had a sneezing attack 5 weeks post op which caused a CSF leak. I am now nearly 4 weeks post op the CSF leak repair & doing very well considering I had 2 brain surgeries within 9 weeks. I had horrible headaches with the lumbar drain while in the hospital, but rarely get headaches now. I think that you need to have more tests done & that you will probably have trouble finding a doctor to take on your case since your surgery was so recent. Was your NS a Chiari specialist??
No tests were ordered so far. I have been told to wait to see if I heal. Not sure how long inflammation near the brain takes to heal. I asked. My next appt is in August when they will order a CINE MRI. My surgical site healed fine after 2nd surgery. Right now I am looking for more help to cope with my present symptoms as they are worse than before my surgery. I am not really wanting another doc as of yet. My doc was not a Chiari specialist however he has done many and only has had 1 failure. I am looking for more help coping with my current symptoms; too much pain. Fantastic to hear that you rarely get headaches now!
Wow its terrible that the pain is worse now!! Have they given you anti-inflammatories?? Just wandering if you were checked for EDS which Chiari patients are prone to have, because it can cause healing issues & rejection of the patches. I don't really know a whole lot about it since I was negative, but Selma will respond with much more information that may help you. I do know that it takes the body a long time to fully heal (up to 2 years). Just curious......did you have a Syrinx?? Syrinx can cause pain in many different places depending on where it is located in the spine. I will definitely keep you in my prayers & hope that you can find some answers soon. August seems so far away when you are suffering so much!! Maybe you should ask your PM doctor to order tests in case something is wrong!!
No anti inflammatories just the words: Wait. I do not have a
Syrinx. I have looked all over Google to see if anyone ever ended up with a post operative infection then with worsening symptoms and could not find even 1 case. I do not believe that I have EDS as my patch was just fine and NS double checked that. He was more concerned about my Type 1 Diabetes. I leaked badly upon having my stitches removed and thought the PA removed them to early. I had an area of tenderness that was red and thought since I was a diabetic that she should have waited. In retrospect, the NS agreed. The 2nd surgery, he used supertight stitches and staples and they waited very long before removing. I see my neurologist next in a week. Hopefully he can help alleviate some of the pain. Thus far, he has been frustrated
Hi and welcome to the Chiari forum.
May I start by asking were ALL related conditions ruled out b4 your surgery? There are a few that can cause symptoms to worsen once surgery is performed if measures are not taken to help pren=vent them....so unknown this could be the outcome.
Tethered Cord, and Ehlers-Danlos*.....EDS can cause us to reject foreign materials....the dura patch alone could cause rejection and that can lead to infection....sometimes even increased CSF production.
It does not have to be just an issue with the dura patch that could be just one issue....but having diabetes can delay healing just as much as EDS can.
I would be interested to know if tethered cord was ruled out as was Syringomyelia...as they can form post op as well as pre op and be anywhere in the spine....and unfortunately some Drs only check the cervical spine for a syrinx.....
May I ask what you are doing activity wise on a daily basis?
How does one rule out related conditions? I looked up EDS, I have no symptoms of that condition. My infection happened after my stitches were removed and I leaked profusely. The NS attributed the infection to flow of csf fluid probably backwards from the skin's surface from the leak. My CINE MRI showed no Syrinx. My diagnosis is cerebellar tonsillar ectopia.
I have not asked the surgeon the questions you are posing but I will when I go back. I see my neurologist in week who is less trained in these matters. However, I will give it a go with him. Back spasms are constant and severe at times and the headaches wear me out. This concerns me. Not even sure which doctor to turn to.
What specific questions should I be asking my neurosurgeon? How do you rule out these underlying conditions? Having this question requires that the patient be educated and that is why I am at this forum.
Again, I have not seen a single soul that ended up with an infection on top of their patch. I though my head was going to explode. I would like to ask if you know of anyone that had an infection and what was their experience and if the surgery helped them?
I tremendously value both you and Lottida for your wise insight. I am doing my best.
Thanks so much!
Actually the NS should have checked you for the related conditions, however many of them are not up to date with Chiari related conditions unless Chiari is there specialty. I personally would ask about EDS, durapatch rejection & ask to have another CINE MRI to see if CSF is flowing appropriately.
Also inquire about Aseptic Meningitis as it can cause similar symptoms. As for the infection on top of your patch, I would think that the open area of the incision where it leaked likely allowed some type of bacteria to enter (that space is on top of the durapatch) & of course your diabetes makes you more prone to infections due to it hinders healing. Makes me wonder if you could still have some lingering infection........people don't ALWAYS run fever with certain bacterias. A lumbar puncture to test the CSF would show if there was any bacteria remaining.
Try to make a list of all questions that you may have to bring with you for your next appointment. This helps to remind you of things that you can't remember to ask..........its overwhelming especially when you are not feeling good!! Curious to hear what your doc has to say.......good luck!!! :-)
I will ask if I was checked for Chiari related conditions at my next NS appt and will mention dura patch rejection, possible lingering infection. I am supposed to have another CINE MRI soon. I am also concerned about my spine right now as I woke up in the middle of the night and had trouble getting my back to settle down and my arm was numb. The spasms seems worse each day. Can they be linked to the infection I had?
I believe my bloodwork came back negative which led the NS to believe that I was clear of infection. He did not perform a lumbar puncture.
I will make a list from both of your posts. Thanks so much!
Did you do the neck exercises after surgery since you had the laminectomy?? Often times light stretching of the neck & arms help relieve the muscle tension near the inner shoulder blades. I do remember having burning between both shoulder blades but it was because I allowed those muscles to stiffen. Sometimes people tend to stay in bed a lot or just curl up on the cough & this just causes the pain/spasms to get worse. I do find that I was generally hurting in all of my joints also because I was too sedentary after surgery. Its really hard because you have to push yourself, but you should be walking everyday to get some exercise. I now find that since I walk at least 1 mile everyday, my pain is essentially gone. I had to start slow though because I felt like an OLD lady with my hips/knees/ankles hurting.....lol!!! Also does the numbness go away once you are out of bed?? I will have numbness too but it is usually from sleeping in the wrong position.
I would make sure your doctor is ok with any exercising or stretching before doing it tho!!! Is your spasms just in your back?? Just wondering because low potassium levels can cause muscle spasms too but they are usually all over rather than isolated to one area. I'm sure the muscle spasms can be from the surgery, but I would think they should be getting better instead of worse. Hope you find some relief soon!!!!
Hi a CINE MRI is not the only way to rule out a syrinx.....they are done to check CSF flow.....a syrinx can form anywhere in the spine so a MRI of the cervical, thoracic and lumbar spine should be done to rule out a syrinx. Many Drs do not look beyond the cervical spine for a syrinx....this is why a true Chiari specialist is what we suggest you look for as they will rule out ALL related conditions....even ones you do not think you fit the symptoms....I said the same as you after reading EDS symptoms....only to find I do have it...it is not something we can dismiss by just reading the symptoms.
Infection can be the body's way of rejecting a foreign material...so depending on what type of patch was used...that could be a reason....chat with member zygy2 she has been thru this a number of times and can better give you first hand account of how this can and does affect recovery.
How did you find out that you had EDS?
I wanted to ask about pain I am having in my neck, back and right arm. It is all right sided. My back is stiff and quite painful. Saw Pain Management who gave me muscle relaxants and something for pain so I could sleep He said my Traps were super tight. Went to Neurologist who ordered an EMG but that wont occur until late next month. He is concerned about issue with my spine. Could this be Chiari related?
I asked about the patch possibly being rejected. He seemed thrown off by the question. He also thought that I could not possibly have any infection issues at this time. I also asked about the possibility of Chiari related conditions but he definitely had no idea of what I was talking about so I see what you are talking about. However, he is not the NS who did my surgery. I see him in 2 weeks. I will ask very specific questions from your post. I am going to tell him that my body is attacking itself it is.
I will talk to zyhgy2 as I assume she too had an infection.
What type of symptoms do you have that you did not think you EDS? At his point in time I think I could have Guillain-Barré Syndrome. I have listed these symptoms to the neurologist too many times and not realized it. That is an aside.
Thanks so much for your help.
selmaS told me that I should chat with you. She said that you issues with rejecting your dura patch. What specifically happened? I developed an infection. Not sure if I am rejecting the patch or not.How did you find out that you were rejecting the patch? Thanks so much for your insight.
Hi...my Chiari specialist DX'd my EDS.....I was at a Chiari conference in '08 and one topic was EDS and they listed symptoms....I had a few, but really did not think I fit the profile of being hyper mobile as I really could not move like very flexible people can. After learning more about it, I found our muscles get tighter to help hold us together and can make certain movements difficult on our own...but, when in PT they could move my joints past where typically someone would get tight.....it did not hurt, but I tried and I could not move that way on my own....so being able to move into those positions with help still means I am hyper mobile.?? I was surprised as I thought I had to be able to do those things myself....so that is why I felt I did not fit...hope that helps.
The EDS thing is funny, I felt the same way Selma! When I started on the boards I read about it and said "that is not me" I WAS WRONG! It was me, only when I was younger! As a child I was still super flexible (as my daughter is now). There were red flags, when I had knee surgery I remember the surgeon saying "your knees are so loose" I had no idea what he was saying and totally forgot about it. Now after being diagnosed I remember things and laugh. I am not at all like I was as a child but at 44 I can still stick my foot to my head :) My fingers and wrists are not like they were as a child but I guess joints are still loose compared to others. I wish I had known more about it before surgery but now I know and keep learning about things like EDS and Hyper-Pots. I am now dealing with optic neuritis and have no idea if it is related to anything. Life just stays interesting :) -Zygy (sent private message to Koja)
Thanks zygy.....I never was able to do any of it as my muscles were always tight even as a kid which is why I felt it was not me....however I did have low healing and bruised easily....I was told I had blue sclara but had no idea what that implied...
My lax joints did affect me as a child tho when it came to playing the violin....my finger joints would fall and I could not press down as hard as needed....at the time I had no idea that is what was going on.....my teacher had no patience in telling me...just press hard....and no up up up !!! lol...funny that I only figured it out a few summers ago....I sat down at a piano and saw my fingers and immediately flashed back to a violin lesson...sigh....
Keep us posted on what you find out on the neuritis.
Thanks for your suggestions. I have a rather extensive list of exercises from a physical therapist that I got before surgery that I am still doing. I added to them to address the tight traps. I walk my dog daily. I also garden, clean, make homemade bread and essentially try not to just sit around but sometimes I am in too much pain and end up with ice on my head and a heating pad on my back. I'm taking a multi vitamin to make sure I have balance but have not had my potassium checked. I should because I have 20 meds prescribed. I don't take them all but they are there if I need them. It is rough when you have multiple conditions. I asked whether this is a fibromyalgia problem but the fibro folks told me that fibro is not focused on one side of the body. My neurologist thinks there could be a pinched nerve or something wrong in the spine. I wake up in pain. I will let you know after I have the EMG next month that is if I survive that long.!
From your list of activities it sounds like you may be doing too much and could also be why you feel as you do....try slowing down a bit....keep us with the walks....but not so much bending , lifting etc....
Keep us posted on the EMG,,,,,