It has been 6 mos since my decompression surgery - things went fine for about 3 months, but have back-slid since then. The NS said everything healed great, no more need to see him. I was seeing a neurologist for continued headaches and neck tension/spasms, but around when I returned to work full-time, and to light land-based exercise like elliptical trainer, some symptoms started to return (headache, right-sided weakness, equilibrium problems) and some new ones have cropped up (tinnitus, exteme fatigue and sleeping problems, systematic right-sided neurologic deficit - motor, sensory, reflexes, strength - everything.)
I'm seeing a second neurologist and going thru various tests (so far, all normal) to see what else might be wrong - some overlapping / underlying disorder with the Chiari, demyelinating disorder, etc. Have an appointment a few months off for potential genetics issues like EDS diagnosis, but I've rather exhausted the pharmaceutical options (neurontin, misc. others, tramadol - no use, or more harm than good) and can't just stop work to wait for a diagnosis or improvement that might never come.
I had the conservative surgery (craniectomy + C1 laminectomy with no dural opening), 7mm herniation (slightly asymmetrical, longer on the right, and have not re-ascended since surgery.) I'm thinking maybe the surgery did not provide adequate decompression and de-crowding?
Other people who have had revision surgeries - how long did you wait, or how long did it take for you to re-develop symptoms severe enough for revision?
Also, does anyone know: if you have had decompression and your CSF flow has been improved, are lumbar punctures still a hazard? How about as a possible diagnostic tool for generalized low CSF pressure?
Hi...well what many of us r learning as we share our post op journey is that we all go thru a rebound of symptoms as we heal. Plus, it can take up to 2 yrs to fully heal.
I would encourage u to get a CINE MRI if u feel u may have a blockage.....but, it could be that u r experiencing the normal healing process.And, as a zipperhead, u can do too much and get slam dunked afterward just like b4 surgery.
May I ask , was ur NS a chiari specialist?...do u know why he chose not to open the dura?
getting tested for chiari related issues is great and should always be done...most times b4 the first surgery.
A LP for a chiarian will always be an issue...u need to be sure the person performing it is aware u have chiari and knows they have to draw slowly to avoid a re-herniation.
But, it is possible for a tool when needed.
May I ask what u r taking med wise for pain?....if it is a NSAID med like Tylenol...that could be part of ur tinnitus .
Have ur drs mentioned demyelinating from ur brain MRI's?
I would also ask ur drs to check u for autoimmune issues like RA, Hashimoto's....ect...chiarians r prone to these types of issues including disk herniations of the spine...so if u did have that it could be the reason for the numbness too.
If ur MRI's r showing clear of overcrowding and obstruction of CSF I do not think u could get another dr to do another PFD on u at this time. As I mentioned this could be a result of doing too much too soon.
Getting copies of ur MRI and getting a second opinion is not out of the question tho either.
Try to get as much rest as possible and if u r in an area where it is extremely hot out...keep hydrated with water.
Yah, I figure it's unlikely I'd get a revision so soon - I'm impatient because this really has my life on hold until things are resolved. My symptoms were suddenly severe, so there was just a week between discovery of cause and surgery (thank goodness.) I'd also hate to have these symptoms continue and be told, say, next Feb. that I should have a revision (time-wise and money-wise.) And it makes me nervous that without proper diagnosis or treatment of the symptoms, I may be risking more damage - nerve, brainstem or otherwise.
I'm getting checked (or have been already) for various autoimmune disorders (RA, lupus, lyme, etc. etc.) - nothing so far. Checked for disc herniations, arteriovenous malformations, cervical or craniocervical instability - nope. No demyelination or lesions indicated on the MRIs, but the second neurologist thought there were some clinical signs of demyelination on physical exam (have only had a first exam with her, so will ask more about that when all the test results are in.)
My NS wasn't a Dr. Oro, but does dozens of chiaris a year, although most are pediatric - he is excellent and as close of a specialist as one can get without going to Stanford (closest specialists for me.) I have my copies of my tests, to if I go for a 2nd opinion if this round of tests is inconclusive, I'll go there. To open the dura or not is a hot-button question for neurosurgeons, I know - as I understand it, he chose not to open the dura because he has found the conservative dural micro-scoring approach is just as effective for most cases because the dura is itself a semi-expansile structure and that once bony obstruction is removed, the dura will be able to "flex" and have the room to accomodate CSF flow. Additionally, he didn't consider my herniation to be especially big, and it's less risky, of course.
Pain meds have varied, but naproxen (just double OTC Aleve) seems to work as well as any without some of the side effects of others. Valium still helps some with neck and shoulder tension. Tinnitus seems independent of meds. Have had a few headaches lately where I resorted to a small amount of percocet, though - first need since the month after surgery. Fioricet is usually my stand-by for bad headaches, but it wasn't touching these.
Hi...well again, many of the issues u r having may be just part of the healing process......and u r not too far along...I was feeling great the first 2 months then I felt like I was backsliding....I am stabling off....but, I do have a few other related conditions feeding into my symptoms.
I am curious...how can a dr see demylation during a physical exam?....I thought a MRI and a LP were the only way...symptoms can help steer them to look at it, but if not found on the MRI I am curious.
I was just reading all this and I'm thinking "she sounds just like me.."
I am 6 months post op too and looking for more answers. Things got better for me too after surgery..especially with my gait..I had a few months of feeling pretty good and then the pain started to intensify. When that happened I went back to my GP and got all the AI testing done too. I found out that I had Hashi's and a slightly positive ANA which was later confirmed to be nothing.
I decided to request all my MRI reports and did find out that there were some issues with my discs that I wasn't told about b4. I am still waiting for my follow up with my NS. I too, didn't have a specialist as there aren't any close to where I live but I did have an excellent surgeon who gave me the time of day when no one else would.
I had all 3 done: laminectomy, duraplasty and craniotomy. I got my post op MRI reports and according to them, the surgery was successful (no blockage now).
I would suggest going over all your reports and seeing if there is anything that was missed or not mentioned.
I don't think she "saw" demyelination during the exam, but there were some things like systematically reduced reflexes, distal motor and sensation problems, slower pupil response in that eye, possibly something she saw suggestive of optic neuritis or optic nerve issues - not a definite "this is evidence of demyelination" but gave her a hunch, at least.
Maybe it is just "normal" backsliding, although none of the neurologists seem to see it as such. The only odd item was a high B6 level (which can cause nerve damage - axonal, I believe), but a second test came back normal for the neurologist thinks the first level was spurious (no telling, though...) and that it's an unlikely cause due to the one-sided nature of my deficits. I will make a follow up appointment with my NS as well, if the next neurologist appointment is a disappointment - see if he still thinks all is well, and that it couldn't be dural issues.
I've been through a lot of my reports and scans (won't say all, my medical record is now 100+ pgs!)...most things look ok, really, albeit to an untrained eye. No total obvious things, but maybe a specialist would see something. I'm young(ish) (just turned 30 - I told my friends I wouldn't mind it so much if I didn't *feel* like I were 70...), so my discs haven't had too long to develop problems. I'll just keep asking questions until I get some help or relief.
Sorry to hear you're having similar experiences, Carolyn - I wish you luck as well! These boards do seem to follow the "misery loves company" adage...or at least it's nice to know you're not the only one with these issues!
Thanks for sharing that info...I know we have a few members that do have both MS and chiari and was not sure of the comment....I didn't think it possible to "see" demlyation, but wondered what was seen symptoms wise to feel it was that and not possible nerve damage due to chiari?
I pray the NS can shed some light here for u and I pray it is not back sliding...or MS!
Wow. The similarities in our stories are quite the coincidence, right down to the herniation, surgery and the returning symptoms.
10 months post-op I decided to try exercising. I was an over weight 35 year old sedentary smoker and something needed to be done. I quit smoking, hit the elliptical and dropped twenty pounds. The elliptical wasn't cutting it for me anymore and I decided to try jogging.
It wasn't until I tried jogging that some of my symptoms came back. My headaches never went away they just got less frequent. The same with the fluttering full ear feeling and ringing. But now my left sided weakness has returned pretty much non-stop.
I don't want to hijack your post, just wanted to share the similar circumstances.
Welcome, and you're not at all hijacking the post! Seems like several of us share these issues - sorry to hear that you share them with us!
For the couple of months before the onset of my severe symptoms, I was doing some plyometrics and pretty high-impact stuff, although I have been athletic all my life (but, also had headaches much of the time.) I certainly do wonder if returning to exercise and "gravity", really, are a problem but I have avoided higher-impact exercise like jogging for that reason - seems like elliptical was enough to do it to me. I've felt most "normal" in the water - I swam a lot when I was younger - so I'm thinking I should probably try returning to swimming as my primary form of exercise. (I swam in the cold river here on a hot day on the 4th, and oh, how wonderful it felt!) Maybe it would work for you, too, Jim?
What bothers me most was that things were going so well for those few months, and especially the one-sided weakness had seemed to improve so much, although the headaches never really went away. The post-op tiredness transitioned to a different sort of fatigue without being able to distinguish one from the other, so I really couldn't say when one ended and the other began. It seems that if the surgery was only going to stop the progression, I shouldn't have seen so such improvement - anyway, we'll see what my neurologist and NS say!
FWIW, I did end up having a lumbar puncture a couple of weeks ago - and boy am I glad I did! I made sure the doc knew about the CM1, and he didn't "draw" fluid at all, but did a passive collection, waiting until it fluid came out on its own. Seemed to work fine - no spinal headache or other problems afterward.
So I went in for the LP initially to check that my intracranial pressure wasn't too high (I was hearing whoosing noises) - they said no, everything else came back fine, so I went home. Turns out the pressure was too *low*, not too high, so now they think I have a CSF leak (why it had to wait until I saw my neuro again and they didn't tell me this the day I had the LP, I'll never know.) So maybe this has been causing my problems over the last 6 months...everything else so far has come back pretty close to normal (my B6 levels were up once, but then back down - hard to tell if they were ever up or it was a lab error to begin with.)
Here's to hoping I'm leaking and they can find and fix the leak!
Carolyn and BigJim, how are you faring these days?
Hi ..I am glad the tech did the LP slowly for u...and u have a possible dx or reason for y u feel like u do.
If they told u the pressure was low and it was a possible leak, did they tell u what to do to help it heal on it's own?...there r some things u can try...they do not always work, but may help.
U should lie down...and drink plenty of water and some caffeine as it can help the healing process....if this does not work after 4 to 5 days, they should try a blood patch next....and after a few attempts with this, if this also fails, then surgery is a last option.
They did not tell me what to do to heal it - I may get that info if they find it. The NL told me a leak could be associated with the surgery, or spontaneous, or longstanding and not related to the surgery (you can leak into your sinuses...) I think depends on where they find it how a fix might go - a blood patch is just a clot over the spot, so if you have a large or persistent leak, it may not work well.
Thanks for the update! I am doing a bit better symptom wise but my head still feels like it is full of fluid and any kind of exertion makes that a lot worse.
I always suspected that I may suffer from Intracranial Hypotension due to some type of leak. When I first became symptomatic, and even still to this day, laying down has made me feel better 100% of the time. This is classic for hypotension and the exact opposite for what I know of Chiari. Even my NS looked at me kind of funny and said I shouldn't feel better being horizontal, I should feel worse.
I have also had the occasional unexplainable runny noses and what can only be described as a fluid dripping sound in my ear.
The most disturbing thing is Chiari can actually be caused by this(albeit rarely). The incidence of hypotension is reported to only be 5 out of 100,000 people though. Interestingly enough, and this is a direct quote:
"The symptoms for both conditions [Intracranial Hyper and Hypo Tension] are often the same, leading many medical experts to believe that it is the change in pressure rather than the pressure itself causing the above symptoms."
To wit, a sustained increase in ICP can also cause Chiari:
I am just thinking out loud, but I have to wonder how many people may have Acquired Chiari over Congenital Chiari. I don't think some acquired chiaris are going to be "fixed" by PFD surgery as you could be treating a symptom and not the cause. Perhaps this is why some Chiarians feel better for a few months and gradually their symptoms return. I was never offered an LP to determine my pressure and I just had my first flow study 1yr post-op.
I never had an LP either..and it is something that I thought about from time to time as well. Most of the time I feel like it's high pressure though b/c I get the throbbing in my head, feel like I am going to pass out when standing and it does throb when I lie down.
Zippyjo..thanks for asking...I am doing alright. I have had my post op MRI and everything looks good so everyone is satisfied that I am dealing with post op damage and that it is not due to any re-blockage. So I am on few meds and I will be meeting up with a rehab specialist in September to try and see if they can re-train my muscles. The theory is that is what is causing the pain, I am still not walking and carrying my body properly so I am still incurring damage. I will be having a gait assessment done etc.. So we'll see...
So for the leak, what kind of tests are they doing to confirm you have one? I hope that if there is one, they figure it out so you can get to feeling better!!!
I am so happy I found this post. I had decompression surgery June 18. Everything that I have been reading sounds pretty much what is going on with me. I thought the hard part was getting to the initial diagnosis, but I think it feels now like just the beginning. I first started having symptoms a year ago when I coughed and I felt a strong pain down my left arm. That continued and continued and left my left side from face to foot numb. I also had headaches and dizziness, body jerks and a whole list of other things. I had the surgery and for 3 months everything seemed the same, no better, no worse. Then my eye started bothering me, it gets blurry and sometimes it feels like it is itching behind it. My face, arm and leg are still numb and both my hands are stiff, numb and tingly all the time. It is hard to sleep at night because I cannot get comfortable. My ears ring constantly. I seen the NS last week and had another MRI yesterday and will be seeing the NS again this week. So I am at the mercy of what the doc has to say at this next appointment.
I am so sorry u r having post op issues...it is not uncommon, but, we all hope and pray we do not have to deal with this....post op care is not as easy to find as a chiari dr...and we know that was not easy, ot was getting a chiari dx for many of us neway.....
I pray ur dr has some info that will lead to ur feeling better.
Keep in mind, we do go thru diff stages as we heal...and we will get some symptoms back, but it should not be as severe as b4 surgery...if ur issues r new or more intense, it is an indication that mayb something else is going on.
Please keep us posted
Glad to have u join us, but not happy for the reasons that brought u.
Have you tried any medications to help with the sleeping? I had the same awful situation where I just couldn't sleep b/c of the jerks, pain and restless legs. My Dr and I had to do some experimenting but have ended up taking Lyrica and Amitriptyline at night and that has worked to help me sleep.
After surgery, I did feel like a lot of things didn't get much better (except for my gait which was almost immediate). I was so fed up and I went through everything trying to get answers. Right when I was in the thick of it at about 8 months post op I realized that suddenly I did see a few other improvements. However, my experience has been that I have been left with a lot of symptoms (ears ringing, tingling arm/legs, headaches, gait difficulty and chronic pain) of which I have not been able to get answers to.
I hope that when you see your NS he does have something to tell you that will make your situation better. But, if he says that everything is good on the MRI than ask about some rehabilitation or to see a pain management specialist. These people really do care about you and how your feeling and will go out of their way to try and help. That has been my experience anyway.
Thank you so much for your well wishes and understanding. I am so glad I found this site. I was beginning to give in to some of the people close to me that I'm just trying to get attention. I do not think anyone can understand this unless they are going through it. I myself, was starting to think maybe I was becoming a hypochondriac! I am not taking any medication. I didn't know that there was any for this. I take Exederin Migraine for the headaches and usually it doesn't even touch it. The last "bad" headache I had lasted for 4 days. Now it seems like all the "bad" ones last for 4 days. I had to wait for 3 months since my last Dr. appointment and he really didn't say anything except that because all the "discomforts" didn't just happen, it just may take a while to notice any difference. Then when I seen him the other day, he said he couldn't tell me anything until I had the MRI. So, thankfully I that and now the knowlege that there are medications that may be able to help.
Take care and I will surely let you know what happens. My appointmet is this Wednesday.
Don't feel bad...I felt the same way you were describing. All the Dr's and NL that I saw made me feel like it was all in my head and when they keep repeatedly hinting at it, you really do start to wonder if it's true. Luckily, I have a very supportive family who knows me well and then know that I am not a complainer. They were the ones that kept reassuring me that I was in fact, not crazy!!
That's why I think it is so important to have a good NS. When I found mine, he was just so kind and validating and it really made the difference in my own confidence.
The unfortunate problem is that after surgery, there really is no aftercare. For a long time I thought it was b/c they thought you shouldn't need any but now what I realize is there is this gap b/w the surgery and recovery (long term I mean).
I started having headaches out of the blue in November 2009- I thought it was a sinus infection because that's what it felt like. I went to the doctor in December of that year to be told its not an infection but maybe migranes. I was treated for a week for those but of coarse did not work. Had a CT second week of Decemeber and was told right then they saw a Chiari I. I had a MRI the next week and told I had a 15mm herniation.
I saw a neurosurgeon end of December to tell me I would need a craniotomy and c1-c2 laminectomy in January 2010. The symptoms before the surgery had gotten so bad I was taken out of work. I had not only headaches but nausea, vomiting, severe vertigo, blurred/double vision,neck pain and even incontinence. I had to sleep in a high reclined position. It was miserable.
After that surgery, I noticed things weren't getting better so I had multiple trips to the ER for spinal fluid leakage through my surgical incisions and numerous LPs. Then in February I stayed in the hospital for a week with a spinal drain to remove over a liter of CSF. The next week I back again over and over again for more LPs because of high ICP. VP shunt was placed in
I have tried Topromax, Lyrica and Gabapentin for the headaches none which is working. I have seen 2 different neurologists but none will listen to me when I tell them I think I need another MRI. I know something is still wrong but they seem to scared of the VP shunt reprogramming in the MRI. I hurt so much all the time. The pressure in my head causes my skull to be too sore to touch or to even lay on a pillow. The constant nausea, unable to think or concentrate or remember makes life so unliveable at times.
Any advise or words of wisdom would be appreciated.
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