I am 48 yo female post-op decompression 12/2012. I had an ICP of 55 when they opened and they could not get ahead of the swelling. My dural patch leaked on day 4 post-op. I had obstructive hydrocephalus and a pseudomeningocele.I have now returned to work and am functional, however, I still have headaches daily (not a surprise), numbness to my lips and intermittently to my face. Nightly and occasionally daytime, I have arm numbness with neuro pain and some nights, hip pain. I have intermittent dysphasia. I have continued fatigue and vertigo but markedly better than preop. Occasional dysphagia. Continued tinnitus in my left ear with associated hearing loss. I have had a post-op MRI with flow that shows an improvement. I just don't feel right. I can't put a finger on it. Any thoughts?
Side note; In your experience, does chiari continue to advance even post decompression?
You have to remind yourself it hasn't been that long since you had surgery and it does take time. Selma mentions here about the 3 month reacurrance and I can vouch for that. I had the same symptoms 3 months out and I thought something was wrong. Just keep resting when you can and please still don't bend, lift, or pull if you don't have to. I know it has been almost 3 yrs post op for me and I still can't do these things. It's learning what and what not to do with your body. Just listen to it and it will tell you. Wishing you the best.
I am so sorry u r having issues and it is not uncommon as Linny said to have some symptoms return as u r healing, they tend to show up around the 3 month post op mark. It also depends on what u r doing daily.
The fact u had a leak and a pseudo makes me wonder if u were tested for ehlers-danlos b4 surgery and what type of dura patch u had.
I can say I noticed a change in symptoms and marked improvement into my 2nd yr post op....and my NS said it does take up to 2 yrs for the nerves to heal....
U r very early in ur recovery and I also have to ask what type of job u have, it and what u do daily may be affecting how u r feeling.
I have been pot op since July 2012 and some thiings has come back but they also left. especially if you had a syrnix it is common from what my NS said for it to happen and leave cause the nerves are reattching or re-routing. I hope you do start feeling better. Yes lesten to your body it will tell lyou alot. Please don't bend to pickup anything stoop down to do it.
I am just over the three month mark. Surgery was 12/17/2012. The patch blew on the 21st. They did not specifically look for EDS pre-op but I have no symptoms that would indicate EDS is underlying. My graft is autologous pericranium with dural sealant augmentation. I am a pediatric vascular nurse. I place central lines for a 110 bed pedi hospital. 8 to 9 hour days with some call. Not a ton of lifting. Lots of standing, focusing, looking down for extended periods and the like. I get through my days alright, just not a lot of me left over? Weekends I just want to relax. Hubby is a go getter. The up at 5 AM to fish thing makes my week seem endless. Seems like 8 hours of sleep is now a must?
Hi...I did not I had EDS symptoms either, but I do...we may not be aware of what they r and can be as we have so much going on with Chiari.
EDS can cause patches to fail, and leak....most that have this happen find out they do in fact have EDS and once they look closer are able to find relief. I am surprised that ur own pericranium patch failed...may I ask how did they repair it? And the pseudo?
Sleep is a must, and so many of us have insomnia like issues....it may be too many hours to start...all u can do is try to adjust them and then build up....see if that helps..
I was diagnosed one month prior to decompression. Looking back, I had been symptomatic as long as I can remember but attributed symptoms to neck damage sustained in MVAs during childhood. Over about a year period my symptoms became debilitating. As with many others, I was scuffled from Dr to Dr. Finally ended up in a NS office and he diagnosed it. Normal ICP, as I'm sure you know, is 7 to 15. Mine was 55 when they opened. My NS is doing a study on chiari opening pressure so fortunately we were aware right away there would be potential issues. They started mannitol and 3 normal saline but couldn't get ahead of it. On day 4 it let loose. They needle decompressed the pseudo and placed an external shut for the hydro. Re-intubation and medical coma for 6 days to allow the area to heal. So far so good. On 3 month post-op MRI, small fluid collection at the shunt site but the incision area looks good. More flow.
Sleep is hard because I side sleep. Whatever side I'm on, that arm goes numb and then neuro pain sets in. Wakes me up so I never sleep more than about an hour at a shot. I have tried different pillows and positioning without success. I'll ask my neuro on the EDS. I see him again in June. If positive, how is it treated? I'm not familiar. Thanks again!
It depends which type u r DX with as there r several types.Here is a link to one of the tests - http://www.coreconcepts.com.sg/mcr/beighton-scoring-system/
Then there is a litany of questions...do u bruise easy, slow to heal, scar, blue tint to the whites of ur eyes.....and more.
As for ur side sleeping, I side sleep as well and I would wake in pain, so since having surgery I do just what the nurses did for me while in the hospital....u can use a body pillow or a blanket rolled up...lay on ur side and lean against the roll u can lay more on the roll then ur side if u can follow my meaning....it takes the pressure off. My shoulder would pop out of joint sleeping on it all night so this helps me.
Goodness u really went thru the ringer.....
: ) Thanks, I'll check it out. Sounds more like my daughter from what I've read. She is also positive for chiari.
It could have been way worse. I'm grateful for every day and being able to go back to work. My job is a lot of who I am. Helping the kids here keeps me grounded. No matter how tough I think it is, when a little one, no hair from chemo, gray tint to the skin, and clinging to life, runs down the hall to hug me, suddenly my problems seem so minor.
As a nurse I have seen many whited out CTs and know the outcome is never pretty. My CT was whited out. When I finally woke up I failed my swallow study, couldn't walk without a walker, couldn't sign my name, turn on a cell phone. It was terrifying. Today, a little less than three months later, I am working full time, back to life as I knew it, ALMOST. We are a tough group!!!! :)
That's great! I hope you find something rewarding!!! Perhaps speaking or writing about your experiences?
I did not go home with the walker, thank God. I had a scissor step when I woke up after my third intubation but in the week I was there after that, I was able to relearn. I was a little shaky but no walker!! :)
Not sure I am the writing type...lol....I do a lot of crafting and hope to go with something in that vein.....
I was a florist for over 20 yrs, so if I could I would love to do that again, but the lifting is just too much....but to do occasionally would be nice, I did my DD's wedding flowers and really enjoyed that.
For now I am sewing, crocheting and painting...I will find the best $$ maker for me and this area....it takes time to find the tight item....that people r willing to pay for.
True that. Tell me, what are the lifting limitations once you pass the initial post operative phase? What about sit ups and push ups? I was super into working out pre surgery and now I feel like I have to be so careful? I feel pretty good so I'm thinking I can start doing more? Normal day to day stuff is fine and lifting up to 40 or 50 lbs seems to be OK. Just don't want any more leaks :)
I have read lots of conflicting stuff. Seems like some folks can never do much again and there are othrs that lead really active lives? How do I know which I am? When does the risk of leaking go away?
Sorry for all the questions. My NS is so vague on his answers. I was his nightmare patient lol. First one he has ever had to intubate post op and he reintubated me twice! I think he's scared to tell me anything.
OK, one more question. I have been reading about EDS. Ehlers-Danlos Syndrome Type IV is associated with increased tissue fragility results in a higher risk of surgical complications. EDS classic type is not associated with tissue fragility, however, there is a 12.7% chance of EDS classic associated with Chiari 1. Maybe I read that wrong but if you are EDS classic then tissue fragility is not a risk?
I am not sure that is a constant....just as some with Chiari do not have the headaches....as I am sure this is y my NS still took precautions with my incision and my dura patch....they harvested skin and used glue and sterri strip to close the incision to help prevent issues with closing....'
I have seen more then not that do have skin fragility even with the classic type DX....so, it is better to be overly protective with this issue then to deal with a problem. JMHO
I think we all r at diff places post op with lifting....and it also depends on how far post op....
I developed upper body weakness yrs b4 my DX...it got more and more diff to do what I had been doing for yrs, making major floor moves in a retail shop....from moving fixtures and all the merchandise to not being able to....I had no idea what the issue was....
If u were able to lift with out issues b4 surgery u may be at a place to do so b4 I was or am...lol...bcuz I lost it for so long....not sure if I am making sense. Orders from my Dr was no lifting etc for some time as we r healing, and the outside heals long b4 the inside, the nerves can take up to 2 yrs...so listen to ur body and slowly try to do these things, but talk to ur Dr to see if he feels u r ready and for what weight he feel ur body is up to.
I hear you on the weakness thing. Mine did not get profound till about 3 months prior to surgery, although I had to stop working out (boot camp) about 10 months before surgery due to cardiac dysrythmias and extreme HA after working out. As with you, I had no idea why. It is truly a live and learn thing. I did rehab 3 days a week for 8 weeks post op. I think that helped tons! Still not where I was before chiari but getting closer.
My NS is great with a knife but not much on the people skills. Hard to get a straight answer from him at times. Lots of "as tolerated". So what the heck does that mean? If the graft leaks, it's not tolerated? Hehehe. Don't want to find out that way.
I think I read nerves heal about an inch a year so it depends on the extent of injury? Sure hope the nerve to my lips heals. Numb lips feel so strange. :)
Best to just start well below where u believe u were and gradually build up, if u get to a level that causes HA's and other issues back off for a bit.
I also have EDS and TCS, and a few other things so lifting and I may never get together..,.lol...now I know y I never liked it as I always felt dizzy and off after doing nething strenuous,,..but I was able to hold my own at work for a long time.....
Now I am happy to get back to some cooking and things around the house.....I am sure I have a few yrs on u as well,...lol...that does not help me....and with how long I had issues I may have some perm issues as a result.... I get tremors just carrying nething, not even heavy, but my arm and hand go crazy, looks like MS or Parkinsons....I was told that is the EDS....but makes it diff to do certain things,
U will know what as tolerated means when u pass it....believe me u will..
Three and a half months. Surgery was 12/17 and graft leaked on 12/21. I was discharged from the hospital 01/07. TCS? I'm not familiar. As to age, I am 48, 49 in September. It amazes me that we dealt with this our whole lives! I hated running because it rattled my brain and gave me screaming HAs. I thought it was my neck lol. I can't believe it has to almost kill us before anyone figures it out. What a shame. Why is it so unknown in adults. I know in the pediatric community it is a fairly common diagnosis however usually found due to an obvious co morbidity.
I was 48 when I was DX'd and 49 when I had surgery.....
Oh I know, I also could not stand to run, jump blow up balloons...and a plethora of other things....I just thought I was odd not liking to do those things and always assumed everyone else felt the ame way doing the same things and never understood y they would want to do them...lol...
It is not well known bcuz u need a MRI to locate it while we r living, other then that they would find it during an autopsy.....MRI was developed for use in detecting Cancers and was used in the late 70's in testing stages...the first full body scan was done on my birthday in 1977 the yr I graduated from high school....so, it helps to know if they were not able to see these areas they certainly would not know what to do when they could.
OK, so we had our surgery at almost the same age. What is your general impression of life post decompression? I have seen so much from younger folks but our age group has less.
For me, I lived with the symptoms until a few months before surgery. I thought they were "normal". My cardiac symptoms became severe, the vertigo was lasting hours with constant vomiting, the headaches were screamers, and my mental status was effected. I was so sick I couldn't work. I took 10 days off. I was diagnosed in those 10 days, put on diuretics that offered some relief. I was able to return to work 6 to 8 hours a day 4 to 5 days a week till three days before surgery. I had a significant run of V tach that day and decided it was a sign to stop. I know I will never be "normal" but am hoping for closer to normal? I think the fatigue is the biggest thing for me right now. Does that ever go away?
Well it is hard to say if the fatigue ever goes away, I also have other conditions that affect me, so for me it has not, but I know for others it has.
I feel age and the amount of time we have had our Chiari symptoms can affect how we feel post op...for me it is better then b4 surgery and I continued to feel better each yr that passed post op....This May will be 4 yrs and I have to say my balance is finally better and I feel stronger if that makes sense....I still can not do too much or I have issues...swelling of my legs and feet, tremors in my arms and hands...but that is from my other conditions.
So I no longer work, as I no longer Drive....that was and is the hardest for me....my depth perception was lost yrs ago b4 my DX and that is not better and my night vision is really bad....but I am finding things to do to keep me busy and hopefully at some point to earn some $$$$.
I completely understand about the balance and feeling stronger. I hope it continues to improve for me as well. I'm so glad you have come so far. What a journey! Tough old girls we are, lol.
I was sooo grateful when they let me drive again. It is so incredibly difficult to function without driving. I admire you. Just getting to and from PT became such a headache much less keeping the house running.
I'm sure you'll find something that you love to do that pays the bills. Maybe speaking? You have so much to offer!
That is a thought not sure how to make $$ from that or who would want to listen to me...lol....but in High School I was in public speaking contests, and i am use to speaking to crowds as I was HR and did large hires and orientations, as well as trainings....
But I am hoping it will be more along the lines of sewing, crocheting or painting....lol...asI do not have to get out to do that...not driving is an issue for me....
What do u hope to get back to? I really do not look to get back, just to move forward....so driving may not be in the cards for me so looking back is harder then looking forward : )
Hospitals hire speakers fairly regularly to speak to staff. It gives us a patient's perspective and allows us to be better care providers. Medical conferences have speakers. Maybe a neuro or neuro nursing conference to help surgoens and nurses understand the patient side? Anything where they are dealing with any of your diagnoses. I use to speak for a drug company. The money is very good but it interfered with my "regular job". Besides, I'm a more "hands on" person. : ) Start by contacting companies that make products for chiari. Dural grafts, any of the drug companies and that kind of thing. They love to have interesting speakers that can tell how much their product has helped them.
Another thought is a formal support group your local hospital. Who better to run it than a sufferer?
Speaking could be great if you can find a niche. I could make an extra 2 K a month working two or three days. Would depend if your symproms would allow?
Oops, I forgot to answer what I would like to get back. Up to about three months pre op I was active. Snorkled, swam, fished a bunch! Pre that, boot camp and serious work outs. We traveled, went to events and the like. Right now, once the work day or week is over, I'm done. I just don't have the energy to go and blow. This weekend we are headed to Houston for Supercross. Fingers crossed that it doesn't wipe me out for a week. My daughter has an appt in Houston Monday at 0730 with the neuro optho so I am staying an extra night in Htown to take her to that. Drive the three hours home and head for the hospital to do however many cases are waiting. In the pre chiari days, no sweat. Now?????? hehehe Guess I'll find out.
I have been to conference for Chiari and they only had Drs speak...hmmm mayb an idea for them to add a patient....not sure they will and not sure they would pay as a non profit puts the conference on...and I think they get the Drs to volunteer their time.....
Unfortunately my area does not have ne Drs that feel Chiari is something to be concerned with...to them it is an incidental finding....
I pray u can get back to some of ur activities....just know to take ur time in trying them....as it can take time until our bodies may be ready.....
We do not have a support group here, I know there was one in a nearby town, but not being a person that drives it would be difficult for me to get there....this is y I think something to do with crafts, that I can do at home....unless my mobility changes...who knows : )
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