I was noticing some threads about people that are scheduled to have decompression surgery and it got me thinking; How many of us already have had it? We should make a list. Oh and by-the-by, the term for people that have had it is "zipperhead". I guess like they refer to people with heart surgery as having a zipper in their chest.
I know of a few;
Lovemygirls (who, by the way is doing fine, but having computer problems)
That sounds like a great idea. It would also be really comforting if you "experienced" people could write a list of the aftermath of surgery so as we know what we could expect and also what may/may not be normal. I know surgery is different for everyone but its also nice to hear the good and the bad of outcomes of the surgery.
Yes it can be very different. But I'll mention what I went through:
I was in the hospital for 5 days - ICU for 3 and a private room for 2 (I had the surgery on Tuesday and went home Saturday). My time in the hospital was mostly uncomfortable rather than painful, but I was weak and unable to get out of bed until Thursday. I understand from others that that's somewhat odd - I believe sissy and lovemygirls were walking the floors the second day.
The first couple of days home I was barely mobile; I could walk from my room to the bathroom or living room and watch some TV, but I spent most of my time on bed. My sister (a nurse) stayed with me during the days where my wife could go back to work. After about 3 days I could get along on my own for the most part - I could get around the house and make sandwiches or microwaved food.
I noticed an improvement on a weekly rather than daily basis. About a month after coming home, I got sick. I think it was a stomach virus, but it kinda set me back a little.
It was around 3 months after surgey that I felt well enough to get out for more than just a few minutes at a time.
I'm currently about 9 months post surgery and still have some symptoms. I think my Doctor did a great job, but I was so far along (20mm) that some damage to my nerves from the Syringomyelia had already occured.
I am an official zipper head!!! My surgery was about 2 and half weeks ago. I did ok. I was in ICU for 24 hrs and then I was moved to a private room. My surgery was on the 14th and I went home on the 18th. They gave me the option to stay another night but I was ready to go home. I had a nurse visit me at home for 4 visits to check on my progress. Thank god because I messed up on the pain meds (the nurse fixed me) and I wasnt takn enough and that was rough.
The first night right after surgery I couldn't move my body at all. I was able to sit the second day and walk the third day. It was most uncomfortable when they would come in and take chest x-rays or I would go for a CT. So all went pretty smooth. I am still stuck with the head pain that the meningitis damage had caused. That I will have to deal with for life but maybe some other symptoms will disapear.
I love my NS. He definately knows his stuff. Before surgery was scary but hang tough, and after surgery just remind yourself that everyday gets better. I totally agree with Shane99 that you have to go by a weekly basis because some things take time and everytime I am asked do you feel better or do you notice a difference I'm say ask me next week because this is not like getting a new pair of glasses this is definately a time taker.
Oh yeah I love the way they shaved my head, you can't even tell.
My son, age 15, just came home from the hosptial Friday. He was in ICU for about 48 hours, dr wanted him flat on his back or on side, for first 48 hours to prevent spinal headache. I have heard different things from other people about laying this way. The first 48 hours were the roughest. He did vomit following surgery which was very painful and scary for him. He then didn't want to eat because he was afraid he would get sick again. He really didn't start to eat much until day 4 or 5.
He was moved to his own room on the third day with plans to elevate his bed about 10 degrees per hour, which also didn't go very well at first. He was only able to tolerate the first 10 degrees. However, on the 4th morning(when I was really starting to get worried) the physical therapist came in to help him get up and moving. He felt SO MUCH better when he was up!! He walked around the nurses station 3 times that first time.
We came home on day 5 and are now day 9 post op. At home, he still sleeps a lot, but seems to be feeling somewhat better. He continues to have headaches and back/neck pain, that is sometimes/sometimes not, controlled by meds.
He is getting his staples out later today.
I have time off from work, thankfully, and I stayed the entire time he was in the hospital.
Hope everyone else is doing well.
I am at 4 weeks post op today! My surgery went very well....I was in ICU for 24 hours and then a private room for 3 days. I had terrible pain in my head and honestly was scared to death to change sides in the bed because of the pain..but, it was manageable on the pain meds. I walked the 2nd day...and for the most part did really well. I drove at 3 weeks and every day of that third week (this past week) is when I have seen the greatest improvement. ALL of my other symptoms are gone. Thank God! I have incisional pain, and places in my head that feels like fluid is rushing too (especially inthe middle of the night) - I do not sleep well, I think because of the meds, and it hurts at night. I own a small business, and even though I have a great staff, there are some things that only I can do ( or some clients that only deal with me) - so, I am back at work, but, by 2 I am exhausted ...it is from sitting up for so long. My recovery is so much better than my daughter was. She had her first decompression surgery at the age of 7 and it took about 6 weeks for her to stop vomitting post surgery....after her most recent surgery at the age of 8 on Oct. 1, 2008, she vomitted for two weeks, however, once it stopped she started improving and was back at school for half days at 6 weeks. I thought that since I am 40, it would take me much longer, but, I think I have tough skin, or else, it is just that I had to get up. I was in bed for the first few days except for going to the bathroom....until about 4-5 days and then I was moving around better, but, always felt better moving. I had my mom stay during the day to help me with my children for a week. I have a follow up tomorrow for a soft spot that I have that hurts.....I will have to post a picture of my hair....so, you can see what it looks like for women for those of you curious. I was worried about the 'hair' thing, but, it grows so fast...that it is amazing...they hardly shaved any...because I had my hair shorter in the back - really stacked right before my surgery....and longer in the front so that it would be easier maintenance and it was! God bless all of you.
Wow and thankyou so much. Yes it is all different stories (much like childbirth in the sense that its all the same yet different experiences - sorry Shane you cant share that one!) It is really comforting to hear how you felt immediately afterward and what you could/could not do - the level of pain afterward - walking and moving about and heaven forbid - working!!!! AND..............best of all everyone of you feels sore but better.!
Oh Daisy68 - I have been thinking about my hair and it being shaved up the back. Its so fine and not much of it - I dont think it will cover the shaved bits as I have struggled all my life to grow hair on my head! When I have photos done I pull it all to the front and leave nothing at the back - I might shave it all off so I'm not doing a "comb over".
Sending warm and healing thoughts to you all everyday and well done to you all - never mind the doctor's skills............you are all the brave hearts!
After reading through all this I had to chuckle, as my BIGGEST worry has been my hair! I am new to all of this, only being diagnosed a few weeks ago, but the thing I have feared the most is having my head shaved. My hubby said that if I had to, he would to, and that just started the ball rolling, am up to about 10 other people who have pledged to have a 'buzz cut' so I won't feel so awkward. I know from what I have read, it is up to the individual surgeon how much hair they shave, but I have such thick, coarse hair (that is getting grayer and grayer) that has a strange growth pattern as it is, that I think shaving the whole head and starting over would be my best bet.??. It's funny tho, with all the modern advances of medicine I worry MORE about my hair than about someone cutting INTO my skull!
Hi! I'm about 7 months out of surgery and I have to admit that hair was one of my concerns too and my dad said the same thing. He was shocked when I said that I was scared people would laugh at me for missing some hair. That wasn't the case, most people thinks its cool that I had brain surgery. My NS only shaved a section on the back of my head you couldn't/can't even tell that my hair was shaved because the top covers it! My hair still hasn't completely grown back though and when I put my hair up for softball you can see it sticking out. Its a great conversation starter, though!
My surgery was 1-29, I was in ICU for 2.5 days and a regular room for 2 days. The first two weeks after were miserable, I lost 10 lbs from not being able to eat. At first it was nausea then I started vomitting. I went to the ER twice the first two weeks, for a UTI and again for constipation, I didn't have a bowel movement for 13 days and got a blockage. The five days following were miserable, that was about when I started to vomit.
I am doing better now and am able to eat, but I still get nauseas. I stoped taking the pain meds because of this and now am just taking Tylenol, which does help. Right now I am just tired and have to pace myself throughout the day. Yesterday I went to my art class for the first time since surgery and had to come home and take a nap. I try to walk everyday, but it makes me tired so I space that out from other things like taking showers which also tire me out.
I have been super emptional and have been crying a lot, but not because of this, but from things on TV I am watching, so I don't know if I am depressed, or what. Okay, I did breakdown at the two weeks post op visit because I was just so tired and felt like ****.
My wound is healing great, my head is still very tender and no meds ever make that go away, but the meds do stop the HA's.
Speaking of which, when are the HA's suppose to stop? When can I stop taking the Tylenol?
I am out of work for 5 weeks, but I don't know how I can go back being so tired. Today I am running some errands so this will be a good test for me on how tired I get...
My hair didn't/doesn't bother me. I can cover it, even if I wear a ponytail, honestly it's kind of punk rock and am pleased to have less hair to groom right now. I have super thick long hair, so having less is a relief :)
I was a little emotional too after my surgery. I would get upset about really little things. My dr said that it was normal because of the physical and emotional trauma.
I am 7 months post opp and I still sometimes get HA but I've been told that I'm trying too hard to get back into sports. I think its pretty normal to have occasional HA even a year after.
Has everyone been really bad with nausea afterward? I vomited only three times, twice in the hospital when they were trying to get me up to use the bathroom and take the cath out and once after the car ride home. I was on nausea meds but it wasn't that bad for me.
I found out about 1 1/2 weeks before Holloween and was in surgery about a week later. The docor did not tell me what it was in detail, i had to find out on my own. I was in ICU for one night and do not remember it much and was in a regular room for 2 to 3 nights. I do not remember the stay much and do not remember who was up there with me. We stayed in town the day i got out of the hospital and then traveled two hours home. Since i have had surgery i have had problems with my eyes, thinking, concentrating, cordination, and balance problems. I still have my headaches but now they are different headaches and they are not better. I can not longer drive my self around unless i have someone with me and i'm having a good day. There are days that i do not even what to get out of my PJ's. They have considered me about 65 percent paralized now. I was only 50 percent before the surgery. I may need more time to heal or the surgery was not a good idea for me.
I vomitted in the hospital two times (when I say two times, I mean two different days because when I vomit I just keep vomiting several times until there is nothing left.
Then the day before my two week post of visit I started vomitting, this was after not being able to eat for two weeks. I stoped taking the pain meds prescribed and my vomiting is all gone and my appetite is back. I am taking neasea meds twice daily though just in case because my stomach is still upset.
redkim do you think it was then the meds making you vomit rather than the surgery outcome? Hope as days go by you are feeling better - do think of you.
Shane99 - you had progressed quite a way when you finally had surgery hadnt you?
If I remember rightly you didnt have much choice in the matter of surgery? Is this why you are not allowed to drive also? Or are siezures a part possiblity post surgery?
Sorry for all the questions.....................its getting close.
I am enjoying reading these posts here. I have just been diagnosed with Chiari I recently, and now have my surgery scheduled for March 11th. I have to have another MRI done this coming week, to get more detailed look at things I guess. But not knowing too much about all of this Chiari, and the whole process, this website has been a good resourse for me. I have been preparing for my surgery, and trying to figure out if I will need someone at home with me during the day, etc... but in reading the above posts it looks like I should be able to take care of myself, if all goes well!
Does anyone have any experience with Dr. Gregory Foltz at Swedish Hospital in Seattle? that is where I am having my surgery.
It has been more than 9 years since I had my surgery. I had the surgery 11/15/1999. I was in the trauma unit for 24 hours and then a regular room for a day and released. I vomitted twice after surgery which they said was from the morphine. They switched me to a different pain medicine and the vomitting stopped. I was sent home after 2 days with no medical support or help. Luckily, I have a good husband and a large family that were by my side 24/7. I went back to work after 7 weeks. I had a couple of check-ups with my NS. He said that everything was fine and I would have no problems ever again. I have not had any follow up in the 9 years since my surgery.
I have since been diagnosed with Fibromyalgia and several other disorders. Lately, I have had a lot of headaches and other symptoms return with a vengeance. I have been trying to research the effects of Chiari and decompression surgery years later, but have not seen much information. I haven't seen anyone that is 9 1/2 years post-op like me. Has anyone found information on what we can expect years down the road? Has anyone had the surgery before 1999? If so, how do you feel now?
Hi and welcome to our forum.
I am sorry I can not answer ur question, but ur statement that the dr said u would not have ne more issues from ur chiari is a remarkable one in that most here have the understanding that there is no cure for chiari only treatment.
It also depends on ur condition at the time of surgery on thet recovery u may have....some will have perm nerve damage.
I wonder who ur dr is that he did such a great job that u felt so good for all these yrs.I know it is possible for the chiari to re-herniate..or grow.I also wonder if u have ne other of the related conditions to chiari...like a syrinx...tethered cord,DDD, scoliosis.....
I am also under the impression that u should have yearly check ups with MRI's to keep an eye on the chiari.
I am not sure if this answered ur question and I am sure other's that have had the surgery will chime in.
I do hope u continue to share ur chiari experiences with us, since u r thru some of the issues most of us r still facing.
Its not that I felt great all these years. Some of my symptoms were relieved after the surgery. But,I have been diagnosed with so many different things over the years since my that I am just now putting together. I would like to go to my regular doctor to see if he can put these things together and help me.
Since my decompression surgery in 1999, I have been diagnosed with Fibromyalgia, Irritable Bowel, Irritable Bladder, Severe Chronic Sinus Infections, Sleep Apnea, Migrains Headaches, Osteoarthritis in my knees. All are being treated as separate illnesses by my GP. Except the sleep apnea, I do go to a sleep doctor for that and use a CPAP.
I have not had an MRI in 9 years. I do not know what syrinx, tethered cord, or DDD is. I was told before my Chiari diagnosis when they were doing xrays and tests to find out what is wrong that I had slight scoliosis. But, it was nothing to worry about. Do you think I need to find a good doctor? It sounds like I have been suffering in silence for a long time thinking that I am just a hypochondriac.
Wow....most of ur issues sound like what most chiarians deal with and I am sure most here would agree r likely chiari related.
DDD is degenerative disk disease...most with chiari seem to have it.We all get it as we age, but those with chiari seem to suffer sooner than most.
A syrinx or syringomyelia is a cyst filled cavity in the spial cord...it fills with CSF.this can stay one size and non- symptomatic for yrs.Trauma can cause the syrinx to grow larger and become symptomatic.It can also cause chiari to form.
Tethered cord is when the spinal cord attaches to the spinal column and pulls down on the brain stem ...again this can cause chiari to form and many other issues such as bowel and bladder issues.and is a main cause of scoliosis.
I suggest u find a chiari specialist and have a full exam.
Many of us do feel like the drs think of us as hypo's...and we all get to feel like that.
Read the poem by Dr Oro it is a comfort to read when u feel left down by the medical community.
And again the health pages here on MedHelp have alot of info too...there is a link in the Welcome at the top of the forum.
Hello - sorry to hear that your symptoms are comming back????
Much to my surprise I have found out that a friend of my sister had his chiari 1 diagnosed and had decompression surgery years ago - I think in the early 90's. I know he still suffers headaches but generally gets around ok and holds down his job as a mechanic efficiently. He was apparently one of the first here in western australia to have this kind of surgery for this reason. I will give him a call and ask him a few questions.
How bout that .............I thought the only people I knew were here on this forum with this condition and I have been socialising with this guy for about 6 years now and didnt know.
I knew he suffered headaches and had had some kind of surgery but it wasnt until i spoke about mine that he said he had the same thing. I will return with info from him - the only person I know who is longterm post op.
I know of no one that has ever had the surgery or a Chiari Malformation. I felt like I suffered alone all these years. It blows me away to see your stories and actually get support and help from someone.
My daughter had the decompression surgery at age 7 and after she recovered, her exact symptoms came back. We went for 2nd opinions and found that she had Cerebellular Slump because there was not enough bone beneath her cerebellum to lift it. The NS felt that it was only 50/50 chance that adding a titanium bridge beneath her cerebellum would help...and guess what??? It worked. Her symptoms are gone and she is 9 and has recovered. So, please get more MRI's like the others have suggested...because even without a syrnix these symptoms have other causes. They feel that it was just the way she grew that her cerebellum began to slump. Take care, and God Bless
I thought about the tonsils drooping down and that may be what caused my problems. that was a good point. thanks. I will be seeing an new NS soon at the OHSU Spinal Hospital. There is a Chiari specialist up there. Just have to put the paperwork in place.
Hursty, yeah when I found out I had Chiari, I already had a 20mm herniation. I had the surgery 3 weeks later.
It's doubtful I'll ever drive again, but maybe. Sometimes I feel fine and think "I could head down to the store on my own." But then I think about what if I had an accident? I could kill someone - or even from a purely selfish reason, if I did some damage or hurt someone and their lawyer found out that my Dr said I shouldn't drive, they could sue.
I have just got off the phone talking to Jason (my sisters friend who had decompression surgery in the 90's). He said he still gets headaches but always has. He is confident that his headaches are migraine which runs in his family and not the chiari issues as his headaches are now "different" - apart from that he said all othe symptoms have gone and they have not returned. He said that the first few weeks after surgery were hell and there was alot of pain (he also had a sryinx), and vomiting and generally feeling very sick but slowly slowly he improved. He had some swelling happening and was scheduled to go back in and have more stitches put in for the fluid leak but somehow or other between making the appointment and the time to go - it resolved itself - he said it would swell right up when he lay down but then the swelling would subside when he stood up. All in all he said that he is overall happy with the outcome.
I also have a friend who has fibromyalgia and she suffers hugely with body aches and pains and tiredness. I hope that you find a way of coping and feeling better. I know alot of the people over here who have fibro also take "magnesium" suppliements and they say pushing yourself to go for slow walks etc... helps - not that you feel like doing it though i know.
Jason is driving down to visit me on Monday so if there is anythng you would specifically like me to ask him please let me know.
I am supposing that your condition had deteriorated quite alot before you were diagnosed and surgery performed then? This not driving was not just an outcome of your surgery? Its really limiting as to what you can do if you cant drive isnt it. I would be helpless in that position with a young one to get to and from school and a business to run. I guess you can only do what you can do. Yes it would be horrible to end up in an accident - what about a gopher scooter - dont know what they call them in America - the little battery run scooters that you generally see old people who cant walk very far using? I mean - wouldnt get you to another state or holidays but would get you out and about to the outside world without a chaperone?
I sure am getting scared.
I just have one question for Jason. Has he had any follow-up doctor visits or MRIs in the years since his surgery? I have not. My doctor told me that I wouldn't have any more problems.
As for my Fibro, I take a supplement with MSM and Glucosamine. I do walk regularly (3 miles a day-3 or 4 days a week). I do have to force myself to do it, because there are days when I don't feel like I can even get out of bed! Luckily, I have a very good friend who makes me walk with her and I have a dog who needs to walk.
Thanks for your help. It's ok to be scared. The first couple of weeks after surgery are rough. But then each day gets a little better than yesterday. I don't know if you already said it, but when are you having surgery?
Hi - I will ask Jason tomorrow about any follow up MRI's as that is one question I had in mind for him anyway which I wishI had of asked him on the phone the other day as I am wondering for myself if this is what happens - I would kind of expect some periodical examination?!
My surgery is scheduled for March 18th. I need to try and settle myself as am making myself feel quite sick thinking about it.
I had surgery 10 weeks ago and while everything went really well, had surgery on Tuesday, went home Friday. I didn't have alot of pain, never got sick, my arm pain has
not gone away. NS said it could take 6 mo or more to get better. I'm trying to be optimistic. My hair was also a big deal for me but it really didn't look too bad. I ask my
NS to at least flip my hair up and to keep it as even as possible. He laughed but did a good job!
You are just music to my ears. I can only hope. Sorry to hear that you are still waiting on your arm to make improvements but the rest sounds great.
I send wishes that you will keep improving - I know from other surgery I have had in the past - (not ever this big!) - like my /section to have my last baby - the nerves around the incision took at least 8 months to heal - I thought part of my stomach was going to be numb forever and then all of a sudden one day I thought oh how long has it been feeling normal for! So hopefully slowly but surely it will happen for you.
I spoke to Jason today. He said he had 2 MRI's in the first year after op. First one was not long after the op to check out the fluid leak which had resolved itself by the time he got to see someone after the MRI and then he had another one a while later to check everything out and all was fine so he has not seen anyone since regarding chiari. He said his head skin and bone still gets sore and always has since the op so after this long is not expecting it to ever go away and he showed me how he has a dip in the back of his head now instead of it being rounded - where skull bone used to be.
It was very encouraging to talk to him. Scarey cause he was completely honest but also encouraging because he got better and better. It took him a good 6 months to notice an improvement in his whole self and symptoms and said he even felt like he had gone backwards at first and then got better. So I think maybe what you should do is go back to a specialist and be checked out - I know its a pain in the proverbial but get your answers and find out whats going on in there - its the only way your mind will be at rest after having this. Wish you all the best
Thank you and tell Jason that I said thank you. I have that same "dip" in my skull but I have long hair to cover it. I hope all goes well with your surgery. Please send a note or post on this site how you are doing after surgery.
You're in my prayers.
I first started realizing that something was wrong with me in Autumn of 07 - dizzy spells, headaches, bad memory etc.
My PCP at the time (I have since fired her and replaced her with a really good one), kept putting me off, telling me it was high blood pressure etc.
In early 2008, I fell out on the kitchen floor with my wife standing there. Scaring both of us. We went to my PCP and she finally agreed to send me to a neurologist (my wife threw a fit in her office :).
The Neurologist did nerve induction tests and sent me to get an MRI. The next day he got the MRI back and called to tell me to come see him immediatly. I did and he informed me that I had Chiari 1 with a 20mm herniation and I needed surgery immediatly.
3 weeks later, I was a zipperhead. :)
I had reached a point where I couldn't drive a few days before I fell in my kitchen. My neurologist took me off work and driving the day he saw the Chiari (April 1st of last year) and I haven't been released yet.
I have some spinal problems that cause a lot of walking to become painful. But I get around failry well with my cane.
I know all this is very nerve-racking, and I don't mean to get you down or scare you any worse, but there is no cure for Chiari. I believe fully that the operation can help tremendously. The longer you wait, however, the worse you are going to get. Probably.
Chiari acts differently to different people, but most get worse over time - the time frame can vairy drastically though. Some people are aware of it for years or even decades, where in others it grows quickly.
I was in a car wreck 6 years ago. My doctors think that it could have been a catalyst that "kicked-started" mine. So, it may have grown over a 6 year period. Another patient on these boards herniation doubled from 5mm to 10mm in a couple of months.
So, please don't put this off. I'm not necessarily suggest surgery is right for you (that's something between you and your neurosurgeon - hopefully a Chairi specialist), but please stay on top of it and don't just hope for it to get better - or ignore it and hope it goes away.
Thanks for getting back to me with your history and symptoms. It appears once your symptoms started you progressed quite quickly. Were these your very first symptoms in Autumn 07 or once you found out what you had - has the penny dropped and you now realise that you have had milder symptoms all your life? Or was this all happening all of a sudden? I feel like mine happened all of a sudden until i realised that I have had back of the head and neck pain and pain on straining most of my life however I thought this was normal as didnt know any different but knew straight away when the vision probs started with headache and nausea late last year that is was NOT normal. Having you tell me how you passed out on the kitchen floor reminded me that over a year ago I had that happen to me twice over a period of about 3 weeks where I became nauseas and then flaked it - with no obvious illness. Chiari related? - who would know.
Over the past week I have been so very tired, and mild headaches always lurking and hanging about and just generally not feeling me. I know that I am going to go through with the surgery. I dont know if my neurosurgen is a Chiari specialist or not, though he has Chiari surgery listed on his website with info about it so I guess he is up there with the chiari ops. I am going to a private hospital which resembles a 5 star hotel (wish it was for a rest and not this kind of surgery!! - cause am suspecting I wont care really how nice the place looks) but am thinking that they wouldnt allow someone who stuffs up to be operating there and I have a friend who has part of her physiotherapy pratice at this hospital and her staff have worked with patients of my surgeon's and they have been impressed with his work. So that is good news to me.
Your story reminds me of what I wanted to say to my doctor (not the specialist) when he said to me "you've had this all your life - dont worry about it now" (I've replaced him too :) ) - Chiari gets worse as time goes by!!! Either slowly or all of a sudden. It appears that just because its been there all our lives doesnt mean that it stays the same for all our lives. Why cant normal doctors see this????
Dont worry about scaring me - I like to know what I am up against and my imagination is really something! - the truth is far safer ground.!!!
Lloyd0307 is having her surgery today - cant stop thinking of her - hope we hear soon how it went/goes.
I hope one day you get to drive again - do you still have dizzy spells - blackouts?
I cant see why they cant review this? Anyway best of luck.
I am going in for my surgery next week on 18 march.
Hi, I had the surgery in June 07.
I am a zipperhead from Australia (it seems most of you are in America)
I had my operation at 3pm on a tuesday (my mum's 50th Birthday - 'Happy Brithday Mum') I spent the night in th ICU then moved to a private room and was discharged on the Saturday morning.
I didn't have a problem using my hair to cover the new hair cut :) I was out of bed the next day and was able to have a shower - but needed help dressing. The hardest thing I found was moving because I couldn't turn or move my head in any way. I had 24 hour care for the first week then things started to get better and I could rely on myself more.
I was back to work part time after 4 weeks and full time after 6 weeks.
At about 8 weeks after the surgery I was rushed to hospital in an Ambulance, I was in so much pain, I couldn't move and I couldn't stop throwing up - even when there was nothing left to throw up. My surgeon was at the hospital and drained fluid off my brain in the ER with a big needle, I was in so much pain and delirious I didn't know what was going on. This was a Friday - I stayed in hospital over the weekend in anticipation for a 2nd operation on monday but I didn't need it - my condidtion didn't get worse again.
I was good for about a year - with the exception of headaches after anything physical - that I still got! Now however I seem to be back to where I was before I even had the operation. I saw a neurologist yesterday. He put me on anti-depressants to control the pain - this is for a month while he talks with my surgeon and gets a 2nd radiologist's opinion on my scans from before and after (I don't think he is extremely happy about the change that occured)
I have spent so much money on my condition it is getting ridiculous. Now I am at the point of being on medication that can have some bad side effects and possibly needing a second operation - this is going to be hard on my working opportunities!
I know how it is with the "happy birthday", my surgery was 1 week before my 17 birthday. I guess it's the worst and best gift at the same time though.
I was doing really well after my surgery too but last weekend I had 2 dizzy spells in one day! The first one I was at the store and I ended up catching myself of one of the shelves, if I hadn't I'm not sure what would have happened, then I was pretty shaky the rest of the day. I haven't had anything that bad since though. The only thing close is being slightly light headed during any physical activity. It seemed that I have been getting worse since I started school because it was like it is now before christmas break then I felt great over the break when I wasn't doing anything and now it's the same again. definitely not as bad as pre op but I'm afraid of getting worse and ending up back where I started
The only support I can give you is that my ns said it could take even a year to be totally normal again.
Hope everything goes well with your drs and that they can give you some help
Hey there - most of everyone here is in America - cepting me. I am south of Perth in Western Australia. Where are you?
I am having my surgery at the mount hospital next wednesday and my docs name is Emil Popovic. I sincerely hope I dont end up exactly the same after putting myself through all this.!
I hope that your surgery goes good and i pray that everything is good when you recover. I have had heard some good ones and bad but it all depends on you. Just do not let it stop you from you wanting to do. Good luck on your surgery and keep us posted on it.
Hi - nice to see someone in Australia.
I am in Adelaide.
I haven't really researched specialist in Chiari but my surgeon is a Professor and I was told at the time he was the best.
I do think he did a good job but it is just annoying with it continuing.
I have found some relief in some tablets I have been recently prescribed but that is only for the next month until the neurologist talks to my surgeon about whether a 2nd operation is an option!?
Best of luck with your surgery!
I am at home now, just had my decompression surgery on the 11th. The surgery went well! I was only in ICU one day, I was then moved to the Post OP Heart Monitoring Area for a couple of days, so that they could keep track of me for some other issues, then down to the Neuorscience Area Post OP for a couple more days. All the while I was improving each day. I came off my IV drip of pain medication right a way. I just didn't need that much constant medication I guess.
All in all is was a very good experience. There were only a couple of times that the pain got a head of me and the nurses/doctors.
If you have any specific questions, please let me know.
I wish you the best of luck! Just remember that you are that much closer to Headache Free! Just keep up that positive attitude.
So good to hear you are doing so well.
I came off meds pretty much straight away too as morphine just made me vomit too much. I am finding I am having a lot of pain with just panadol but am told this will pass - i hope so - are you having headaches at all re:surgery? Am having a little nausea and balance issues but not huge. Hope I am doing as well as you. You sound GREAT. Congratulations I am so happy for you. Please stay in touch and compare with me.
Love and Best wishes Sue
I have had a house full of company during the last couple of weeks. My sister came from out of town to care for me. But I think that might have slowed my healing process. I wasn't able to SLEEP as much as I should have been, with all the people coming over to see her and see me. Now that she is gone, I have been sleeping A LOT! The last week or so I have all but lost my appetite. Everything I eat and drink tastes the same. Even water doesn't taste good to me anymore. And when I do anything to exert any energy I get nauseated and dizzy.
I have decreased my medicine to almost none, so I have trouble blaming the nausea on the medicine. So, I find my self just laying around and sleeping a lot. It is about the only way that I find comfort. I haven't vomitted yet, but I sure feel like it all the time. Just sitting up for any length of time, makes my stomach ache, and feel like I am going to Vomit. Has anyone else felt this?
Hey there - this was happening to me and I kept calling the doc thinking something isnt right - phoning him to the point of embarressment!!! Yes, after having a steady flow of visitors the next day I was off the planet. I could hardly move from pain in my head. The doctor said this would pass and that he wanted me to do gentle head movement exercises and see me getting up and moving around a little each day. Even though I just wanted to lay in bed and never move again and sleep for years - I made myself get up and move about slowly and slowly but surely I felt better. I dont know if this would help you any but it seemed to do it for me.
Hope you have improvement too.
Amy is officially a zipperhead. She had her surgery on Tuesday afternoon and left the hospital on Thursday morning. She is recovering quite nicely and has almost resumed "normal". She has gone to the boys soccer games (Saturday morning) and helped us feed my boyfriends horses while he was away rodeoing. The only thing she can't do is drive or return to work, which is KILLING her because she is so self-sufficient.
Hey! Count me in as a zipperhead. I had my surgery on Oct 17 2008. Everything was classic. Luckily I didn't have to have the duraplasty- my NS (specializes in CM) measured the flow after decompression and determined it was good, so he stitched me up.No cauterization needed! I was in ICU for a day and a half then onto the general floor. I was in on friday and out by the next tuesday. I don't remember much about the hospital stay or the next week..I just remember the extreme nausea from the anesthesia and the pain meds. But they got that ironed out..
Now I am experiencing some new symptoms: vertigo, tinnitus (i had that occasionally but now it is constant and LOUD) and headaches in the front of my head and eyes. One other symptom that I had before surgery but now is worse is this strange disconnected sensation when I drive. Almost as if I am not 'there'. It happens after about 5 minutes of driving local roads and is definitely worse if I go on the highway. I've had this for about 2 years but post surgery it has gotten to the point where i feel like I'm going to pass out if I go on the highway. Luckily I work only 3 miles from work (local roads) at a job that is very flexible..I feel very fortunate because I would go crazy if I had to sit home all day thinking about this!
Also my eyes don't seem to focus well and blurry vision is a constant challenge. I went to my eye doctor and he said that although my far away vision is just a little worse, my upclose vision is markedy worse. He said he didn't think the surgery had anything to do with that though.
I went back for my 3 month visit and my ns sent me to see an ENT, thinking that I'm having an inner ear thing going on. The ENT ordered a ECOG and an EMG. I go to him on Wednesday to see if he found anything. One thing he did say at the first visit is that I might have something called "atypical migraines, or posterior fossa migraines"...which makes me really afraid that the surgery exacerbated the problem...that maybe it was all for nothing and it caused all these other problems...
Has anyone had any of these symptoms too? Vertigo, tinnitus in both ears, disconnected sensation while driving, eye pain/blurry vision? Has anyone had multiple problems that you had to "dissect" post-surgery? Just wondering...
hi everyone... ive really enjoyed hearing all your stories!
im in the process of scheduling my surgery and i was wondering about the stitches/staples..........what do they use and doe sit hurt when they takke them out ??
I had just run of the mill sutures (not staples). It didn't hurt at all when they removed them, but they did itch!! I put cortisone cream on it, and that helped. I had them in for a really long time too- longer than other people! They were taken out 2 weeks post surgery.
Hi there - I have just had my op 2 weeks ago in Australia and I had staples and they were taken out before I left hospital - 5 days after op. That didnt hurt at all - least of your worries. Seems they get quicker and quicker at getting the job done and getting you out the door.
Hey there. I had my op 2 weeks ago and yes I am still getting slight vertigo (when I overdo it) and also have to concentrate on focusing even though I seem to see fine - a strange sensation even though i had this before the op. And I havent tried driving as yet as I cant turn my head right round as yet - too stiff and sore - so am thinking I am not safe on the road until I can look around to see whats comming up beside me - so time will tell on that one. Hope its not all due to your chiari op. My sister has a friend who had the op in the 90's and he doesnt have any probs apart from migraine like headaches. I'd like to go his way.
I had staples and stitches. They took the staples out while I was in the hospital (I barely remember that happening) it didn't hurt at all. The stitches started to itch the more it healed. My doctor wouldn't let me put any cream/lotions on them. I got them removed just short of two weeks post op. I think they rule is 10-14 days. Getting them removed didnt hurt at all either. That whole area back there doesn't have the "feeling" that it used to, before the operation. From what I hear, we might not get the "feeling" back for a long time. Not to scare you, but the staples/stitches thing is one of the smallest things to worry about.
It is great that Amy is doing so well! I would warn/tell her to get some rest too! My first week home I was doing great, and not getting enough rest, and it eventually caught up with me. I would hate for her healing to be delayed by her over doing it in the begining. Just let her get some rest and take it easy.
I copied this from my update. I am now an official zipperhead. Decompression surgery was on Mon April 6th. My NS said my brain was 'so cramped' into my skull that he couldn't believe I was functioning at all before surgery. When he cut out some of the bone in my skull, my brain(and chiari) moved into place where they should've been all along. Then a sling was put in to hold my brain in place. He did not have to remove my chiari. I have a reaction to narcotics so meds were put in my IV for nausea, but did not expect a reaction to anesthesia or that my body wouldn't respond to pain meds.
Mon - The first night in ICU was he*l and the staff wasn't supportive. I wanted to try other pain meds, but the staff would not even tell my NS. I could not move, was in severe pain and had the 'dry heaves' all night into Tues. I knew that my symptoms after surgery would be severe, but at this point, I regretted having the surgery. I felt like the pain would never end and had not slept more than 15min at a time since surgery.
Tues - It was a blessing when my NS asst moved me out of ICU a day early and into the surgical unit. This staff was very caring. Everytime they entered my room, they asked how they could better assist me. Tues night into Wed morning they continued to call my NS for a new pain meds. At 1AM they finally found a pain med that gave me instant relief and I slept like a baby until 4AM.
Wed - I found better relief by taking 1/2 pain med every 2hrs vs. full dose every 4hrs. I was sleeping for 4hrs at a time and was able to get up out of bed and walk around. I still could not keep anything down. We tried liquids given after surgery: ice water, soda, popsicles. Nothing worked.
Thurs - My student nurse got me a hot cup of decaf coffee(vs. cold liquid) and I drank it down like it was a Mocha latte from Starbucks. That day I finished another coffee, beef broth with saltine crackers, hot tea and cream of wheat with warmed apple sauce.
Fri - Today, physical therapy walked me up and down stairs and around the floor. I was able to drink room temp liquids, eat more cream of wheat, oatmeal, toast and by the time I went home at 5PM, I could keep down cold liquids. Also - my PCP came to visit me everyday. It was not a 'stop and see you later' five second visit, he stayed for a decent length visit and always had something encouraging to say.
Sat - My first full day home - I AM NOT HAPPY - the hospital staff failed to mention that pill meds don't work the same as liquid IV meds. My IV pain med worked instantly and the pills take up to 30min. The pills also give me an upset stomach. A friend of mine is a nurse and was supprised by the high dose of my pain med. She said to cut the pills in half and take one half pill every 2 to 4hrs instead of a whole pill every 4 to 6hrs. When my home nurse came today she said the same thing and it has worked. On the plus side - my husband and I took a walk around the block. My NS said to walk at least 15 minutes per day.
I see my NS on the 21st to get out the staples. They only shaved a small patch of hair and my scar is not very long.
Thanks so much for sharing your experience. I went for a 3 week post op visit to my neurosurgen last wed and because my neck is still so stiff and sore I asked for some pain killers. Well I wish I didnt do that. I have only just been out of bed and off my back for 2 days and have stopped the meds. I woud rather have the pain. I have been feeling depressed because I am not one to sit around but I pay dearly if I dont listen to my body and try and do things. Its driving me nuts. Hopefully it wont take too long to start feeling normal again.....................i am wishing. I am still getting dizzy and today my body just felt like it weighed a ton when I got up this morning. I'm wondering how long all this goes on for???? The doctor who did my op is just the typical surgeon who does his job and doesnt seem to think that he needs to explain ANYTHING. I have nothing to compare to how I am going apart from this site. Anyway best of luck in your recovery
I just went for my one month post-op visit today with my NS. I am progressing right along. I am working part time, and resting in the afternoons when I get home from work, so I don't "over do it". Each week gets better and better, believe me! I had a week (couple of days) in there where I was not so sure that I was going to make it without some major help, but I survived :-) ... and you will too! Just get plenty of REST . . your body really does need it!
Keep up the good spirits and smiles.
I am going to be joining the "Zipperhead" Group. I am having Decompression surgery on May 21st. Any words of advice you all might be able to offer me before surgery. I would really appreciate it. Thanks.
Hey there - I wish you all the best for may 21st. I dont have any advice for pre-surgery but take it easy post surgery and take good care of yourself - its going to take time and TLC, afterwards. Will be thinking of you.
So good to hear you are back doing part time work! Good on you. How many weeks post op are you now? I am still getting a few sharp pains in the back of my head and typing on this computer makes my shoulders ache. Still a little vertigo now and then but am only just gone 4 weeks post op. Think I will be needing physio for my stiff neck though have been doing gentle exercises with it - turning it etc...Took my 6 yr old to the cinema the other day - wasnt quite sure how my head was going to handle the crowd and the noise but I went really well. I feel guilty not being out playing cricket etc.... but couldnt think of anything worse than jumping around at the moment!!! We have school hols here at the moment so after another week when school goes back I am going to start going into our shop for a couple of hours then come home and rest a bit before school pick up time. I too have had that post op slump around the 3 week mark for about a week - I wonder if that is a common place thing.
Hey everyone I was on google trying to search things about chiari and i found this extreme makeover (home edition) episode about a mother and her 3 daughters with chiari....just though ide let u guys know... the famiy's last name was carter... it was on tv a while ago.. i just thought it was cool that they had something about chiari on tv haha
search it....it was wicked good... i thought lol
Hi...yeah I actually met Julie Carter at a chiari/syringomyelia conference...she is very active with Chiari people in Billings, Montana...just look what one person with chiari, EDS and tethered cord can do...she is an inspiration!!
Hi group! First off, I would like to say how appreciative of all of you and your stories. When I learned I had Chiari, I was too scared to even research anything on the subject, and really just left everything in my NS' hands.
My decompression surgery occurred on Thursday, April 23. From the first day of surgery, I remember seeing my family prior to being taken back; changing into the fashionable hospital gown, and my mother and father coming into the room right around the time the anesthesiologist came in. The next thing I remember, my head was stuck to one side and I was listening to another’s family laughter in my SHARED hospital room. Really, I was too out of it to complain. I don't even remember who was there the first day to visit. By the third morning when my best friend came to visit and heard the noise coming from the other side of the room, she demanded they place me in a private room. I'm pretty sure I owe her big for that work of magic. The other woman in the room was recovering from KNEE SURGERY and in far better spirits.
I'd like to say the hospital stay was good, but unfortunately, the shared room was only one of my issues. I'm extremely sensitive to most medications, and apparently my veins are as well, as the IVs they were running blew three veins (one of which had an allergic reaction which only added to my misery). Additionally, I vomited every day while in the hospital. They did have me sit in a chair for all of five minutes on day 2 and walking to the bathroom in the room on day 3. The IVs were removed on day 4 when I refused to have another blown vein. I was unable to eat much more than a graham cracker or two during my entire hospital stay. I was not released until Wednesday morning.
Now, nearly one month post op, I find that I really struggle emotionally with the up and down days. They told me in the hospital recovery would be like a roller coaster ride, however, nothing could have prepared me for what I've dealt with. Much like many of the other posts, nausea, vomiting, and vertigo have been issues. I stopped taking my pain pills, and with that the vomiting, nausea and vomiting seem to be eliminated. Unfortunately, the consequence is extreme headaches and lack of sleep. It's hard to say which is worse! I see my NS for the first post op visit tomorrow and hope he will have some alternative pain meds to offer me.
I think it's interesting that many of you had staples and stitches that had to be removed. Mine dissolve, though they have not dissolved yet. Must just be the preference of the NS?
Any of you out there with young children...My first child is just about to turn 6 months old (the NS thought delivery may have caused the progression of the Chiari). How long before I can lift her? Docs said not to lift more than 10 lbs and my child is nearly 19!! It's killing me to not be able to hold my own baby!!
Also, I've found myself almost daily regretting having had the surgery. After reading your stories, I'm glad I did it when I did. I cannot imagine having something more serious happen if it progressed!!!
I'm a new zipperhead as of Friday 6/5/09.... successful surgery, decompression - Dr. Pierre Girgis at University of Rochester/Strong Memorial Hospital Rochester NY... Wonderful, experienced, great bedside manner. AND can deal with the unexpected, despite MRI's, when he opened me up he found my skull was fused with my spine, and he just managed it fine.
WOW !!!!!! YOU SOUND T double R iffic !!!!! surgery on Friday? did I read that right or is my brain hanging out? Good job ! and another graduate to the zipper head club. sending warm thoughts and hugs your way girl ! keep us posted on the recovery. take as much time as you need. Know we are thinking of you.
Hi there.... yes indeed... it's been a full week since the nightmare hospital stay. I was in a Stepdown ICU which I guess is one step down from ICU recovery, but a step up from general recovery room. Soooooo, there were four patients in this large room, with privacy curtains. The man next to me decided he needed to have sex one night with his wife, who had insisted on staying, although visitors overnight wasn't allowed, so I got to lay in severe pain and vomit while they did their thing.... pretty gross. It was also a very hectic and noisy room with bells and whistles going off. Plus being high on pain meds... the whole thing was scarey because I couldn't make long distance phone calls, and everyone I knew was far away. After a couple days of this bedlam, I was moved to a semi private room with a poor girl who was so brain damaged she couldn't remember that an alarm would go off on her bed if she got up (because she couldn't walk - she would fall or have seizures from some other illness). 2 o'clock in the morning they moved her somewhere else and my next roommate was much more comfortable to cope with... poor woman had had a stroke and couldn't move her right side. Sooooo, yeah the hospital stay was insane and the pain was insane for 2 days, but after that I stopped vomiting, pain medication worked, and I went home on the 4th day, able to walk short distances but very easily tired. I make myself sit up a lot, and walk frequently for short trips up and down the hall, and I'm staying with a friend and her husband just to have someone around in the event of who knows what. I do have ringing in my left ear, and a sense of fullness there, but no numbness or tingling or other headaches.... exertion causes the throbbing headaches that sent me to the doc in the first place but I'm hopeful as things heal I will experience less of this. I get the 21 staples out on June 16th and have a followup appointment on the 23rd. I think I mentioned that my skull was fused to my spinal cord, in addition to the brain slumping? But my doc is quite impressive, and while this apparently made my surgery 4 hours rather than 2, i understand that he was not freaked out by this surprise.
So that's what I experienced, so far. God has blessed me in so many ways.... a good doc, great family and friends, and really a very easy recovery so far. :)
Just a follow up to my decompression surgery that I had on March 11, 2009:
I went to see my NS last week for the routine follow up MRI (with contrast too to check the flow). And he says the surgery was a complete success! I have very few headaches/migraines.
I have resumed close to full activity level, with some restrictions on lifting weights, and extreme activitys.
Life is starting to get "normal". It is nice to live life without a migraine halting all activities.
Good Luck to everyone else!
Add me to the list of Zipperheads! I had my PFD January 6, 2009 by Dr. John Oro in Denver, Colorado. When I was first diagnosed in February 2005, my herniation was 8mm. I slipped on some ice on Halloween of 2007, fell, and hit my head. I immediately began to experience a rapid onset of symptoms. My herniation went from 8mm to 15mm. I had to take my care into my own hands because my former NL simply did not understand ACM. I researched online, found Dr. Oro and asked for the referral. To make a very long story short, I finally got my appointment with Dr. Oro. I left my initial appointment with him with the recommendation for surgery.
I made is through surgery like a rockstar! But then again, I had the best! Dr. Oro is awesome. My recovery went very smoothly with the exception of one bump about 5 weeks out. Out of the blue, I had the most excruciating head pain and I could not move my head in fear of bringing on more pain. They could not find a CSF leak. After spending about a week in bed, I began to feel better.
I'm the type of person who is constantly on the go so I was really chomping at the bit to get back to work. I felt good so I felt I had the capacity to get back out into the workplace. My position requires a great deal of travel so Dr. Oro was hesitant to allow me to go back full bore. I did a gradual return to work schedule and it worked for me...initially. I've been back to work now for almost 4 months. I came to an important realization this past week--while I was on leave, that was not 'real world' for me. I didn't have the pressure, demands, and stress of balancing my life with work, family, home, etc. Now that I'm back in the real world, I'm finding my coping ability is not the same. Factor in most of symptoms seem to back and I'm quite upset to say the least.
I've very glad to have found the forum with so many individuals who are experiencing the same or similar hurdles I am. I live in the middle of nowhere and it starts to feel as though I'm the only one here. I've also been experiencing some skepticism from uninformed, uneducated individuals on ACM in my world who have been bringing me down. So it makes visiting here a very welcome prospect for me!
I know you aren't doctors, but I have been reading these posts because I suspect my 15-yo daughter has headaches due to her Chiari I. She started experiencing severe headaches in Nov 08. By December, we had had enough, and i "demanded" a CT. That was on Dec. 23. On Dec. 24, we headed in for an MRI (also at my "request") as we found a suprasellar teratoma (brain tumor) on CT. MRI verified the tumor (benign but inoperable), and an 8-mm Chiari was also noted. The Chiari has been poo-pooed by the neurosurgeon and the rest of her team. According to them, her headaches are CDH/Migraine/tension/fill in the blank. I am convinced they are Chiari-related as they are suboccipital, have reduced the range of motion in her neck, and she fits multiple other criteria on a web site for a hospital in Long Neck, NY.
Any type of pressure on the back of her neck causes a headache. We got a special harness so she can still play her sax, but she still gets a headache when she exerts herself too much. Not looking forward to school starting, as i know she will have a 6/10 every day, and she will refuse to stay home for fear of getting behind. We tried PT, but that was a disaster. PT made her headache double and caused terrible nausea. Her pupils swell to the point that she has no iris on PT days, and she has to sleep for hours to avoid the pain. No pain meds are helping, though we have not tried any migraine meds like Imitrex.
the driving parts of these posts are intriguing to me too. She took driver's training and passed, but earlier this week, her driving took a definite turn for the worse to the point that she pulled over and asked me to drive the rest of the way.
I have said that I would do anything to help her with these headaches, but this sounds too scary. Soemtimes the headaches are a 6/10, sometimes a 2/10, and other times an 8/10, but they are constant. She has not had a headache-free day since November 1, 2008. However, I am not sure cutting into her brain, especially with the close proximity of the medulla, is a good idea, and I can not imagine what being out of school that long will do to her. There have been times that both her principal and I have begged her to come home early due to the pain, but she is so stubborn.
Is there anything else we can try before we go to the neurologist for a Chiari evaluation? I would like to be as prepared as possible, so that we are not wasting any more time and we can help her.
I sympathize with you and your daughter. I suffered from headaches for over twenty years, and am finally pain free. Although the surgery was not a "walk in the park" . . I am very thankfull that I did it, and have had such great results. While she may be out of commission for 3-6 weeks post-op, this is minimal compared to the freedom she will have from being headache free for all the years to come. While it is not an easy surgery, the results definately out weigh the bad from it. There are several Chiari Specialists that can look at her case and give their recommendation. You would be surprise how quickly they can schedule her for the surgery. She might even be able to have it before she goes back to school.
howdy - Iam so grateful to have found this forum .... and must admit that I feel a bit silly for not looking sooner! I had POC for Chairi 1 4/07 (only 24 hours in the hospital - absolutely crazy - sent home prior to even urination!!). I have my balance back and can dance again, sing again, and no more confusional migraines. But, I had a team of doctors that mostly see children and do not wish to hear anything about the symptoms that I am having now. I have had recurrance of my most severe symptoms 3 times since I finally recovered 12/07. I had recurrences when I look up too much or, this last time, when I had a quick pop of my head up. This is not something I look forward to continuing to experience, but I have no doctor that knows anything about the after effects from Chairi surgery. I need to get my HMO to agree to have me seen outside of network and the only way to do this is to have a doctor in network agre that the specialist I need is not available in network. So, I could look up Dr. Oro, however, I wonder if any zipperheads (or others) can recommend a specialist in Southern California or on the west coast.... If the best is in Colorado, fine, but I would love to see if I can get my insurance to pay for the transportation and visit, which will be tough.
There is a hospital in Missouri that is doing research and surgeries as well.
New York and several others that I am sure that others that I do not know about. I am sure that someone will post the list. As soon as they see what all your questons are.
We are all firneds and get along great. This is a great support network.
Thank you for your responce Roy and for the welcome!
I have checked out the thread on the chairi medical experts. I will look into the doctor at Stanford, Seattle and Dr. Oro and the more I have been thinking of this the more I realize that it may be more important to see the right team than to keep it local. (I don't know how I would pay for the visit if it was not local, but I guess that just puts me in good company.)
I have sat here and read all of these stories and i want to thank you all for posting, I am not a current "zipperhead" I am currently in limbo waiting to hear from a Chiari doc in Wisconsin. Anyway I have to say this was enlightening.
and if i ever need surgery I am going to have them either save my head or a nice short cut. LOL..
again thank you all for posting... I know a little more of what to expect if this is the route i need to take.
lol...I knew what u meant.....but don't do nething to ur hair until u talk with ur dr.....mine said to leave it long it is easier on him for surgery....and since I can not dye my hair, the longer the better with hiding the gray....lol....
Each dr shaves a different amount...so do wait and see.
I was diagnosed with a 25 mm herniation about two weeks ago and met with my neurosurgeon Monday. I don't have a syrinx in my cervical spine and I'm having an MRI of my thorasic spine next Friday. My ns strongly recommended surgery, but said it wouldn't be "required" unless they find a syrinx in my thorasic spine. I do plan to have the surgery in October. I've had headaches and neck and shoulder pain for 20+ years, but attributed them to stress. It's nice to know there is a cause and (hopefully) something that will help.
My ns is a pediatric ns, but he treats some adults. He does about 20 Chiari surgeries a year. He is very well respected by other doctors and by the nurses in the hospital. He spent about 30 minutes with my husband and I during our first visit and was very reassuring.
It's been interesting to read eveyone's comments about hair and staples. My ns said he doesn't shave the hair at all. He said he just parts it out of the way... And, he said he uses dissolvable staples. So, I guess I won't have to worry about having them removed.
I'm nervous but hopeful. I don't seem to have any neurological damage, so, hopefully, I'll see big improvements.
The size of ur herniation is considered beyond large.....what symptoms do u have?
A syrinx is not the reason u should consider to have or not have the decompression surgery. U may also want to ask if the surgery is endoscopic and if they do a patch......also were u checked for tethered cord...or if u have a CSF blockage?
.....ne NS can do these surgeries, but u will want one a bit more experienced.
I've had occipital headaches and pain in my neck and shoulders most of my life (I'm 37). I also get dizzy moving up and down (to garden or clean, etc.) and sometimes when I stand up from laying down.
I know my ns hasn't done as many "chiari" surgeries as some, but I have absolute faith in him. He seems very knowledgeable about the condition and very supportive. I asked him about rehab -- as that seems to be something that many ns don't tell their patients -- about and his response was ABSOLUTELY. He hasn't (and isn't planning) to order a cine MRI. He said with my size herniation and symptoms there is no doubt that flow is obstructed. I have another appointment with him on Sept. 14. I'll ask about tethered spine. I've read that there are an average of 3,500 chiari surgeries a year in the US. So, 20 a year seems like quite a few for someone who isn't in a major metropolitan area or at a Chiari center.
Sorry I have been away from the forum for some time. My old computer crashed, I had a TIA recently - which I was finally relieved to find out was not caused by the decompression surgery and an asprin a day should keep me sorted there.
I have also just come back from holiday to the eastern side of Australia where we went to movie world among other places and i went on some pretty wild rides, so i am thinking the surgery was the best thing I have done. It has taken 5 - 6 months to get to where I am now (surgery was on 18th march 09) but I feel "normal" as I ever will. The only symptom from surgery which I seem to have now is a bit of a numb feeling up the back of my head where the scar is which is just annoying really but I guess with time hopefully that will go away too but if it doesnt its a small price to pay. I wish everyone luck and hope that you all get the best from your surgeries as well.
On OCT 5,2009 i became an offical zipperhead ;)
Dr. Heffez in Wisconsin Done my surgery, there were no complications, and there was actually more crowding then what presented its self on the MRI's, I now have a small titanium plate in the back of my skull. I was in the hospital 4 days (in on monday out on friday)
when i finally woke up from surgery I was Hungry and I wanted to eat but then said no sorry we cant feed you now all you can have are ice chips- I guess i wasnt too miffed about it and the ice chips settled me down LOL But i do remember the nurses saying WOW we never had someone wake up from this type of surgery being hungry this is a first.
I was very happy when the tubes started coming off,I did some PT in the hospital walked around alot my husband noticed 2 things almost immediately 1 my voice has changed some and 2 i could walk a straight line without holding onto anything. Nurses couldnt believe how quickly i pounced back. They were some of the nices people i ever met especially the ICU nurses,
The only thing i noticed which i hope goes away soon is the side tip of my tongue feels like i bit it its got the swellen numb feeling (similar to when u bite it ) the anasthia(?sP) doc said well it could be from the tube we put down your throat or it could be from you tongue sticking out for 3 hrs, so iam hoping as my body continues to rid me of the stuff they gave me it will come back to feeling normal soon.
Over all i feel pretty good i get some dizziness and occasional rining in the ears but i am hoping that all goes away when the swelling goes down. I still sleep alot and doing things is almost impossible right now (because i get real sleepy) but over all if i move gently and not rush things i am ok...in no way am i ready to drive yet (suggested i dont for 3 weeks) and in no way am i ready to run a marathon..but i can keep up an conversation now atleast.LOL...
I read the list of thngs to take with to the hospital and actually took most of the items
the spray shampoo is not needed because once you are up and around you can wash your hair (actually take a full shower) the candy was a good suggestion even if the nurses eat most of it LOL...never even had a chance to read the books i took nor do a puzzle, I would suggest some things for those driving home. take the hospital bath pan OR have a small container in the car just in case. a nice soft pillow or neck pillow..and stop EVERY 2 hrs so you can lay flat for 30 minutes..<-- that is KEY!, have some small extra pillows for your arms the more comfortable you are the more comforable your neck is, have some peppermint patties or gingerale soda for the ride home just incase your stomach feels queezy, and make sure you take your pain meds before you start your adventure home,
currently iam not doing too badly my neck on the right side feels kinda stiff when iam looking down but really i feel pretty good...
i got my staples out yesterday (10/14) wasnt nearly as bad as i thought it would be.
when we got home i had my huisband take a photo of it for me and I couldnt believe it you can barely see the inscision..I was amazed!!..
I am having some issues, and iam not sure what it is or if i should go to the doc
my mouth in the morning has this white slime on the tongue, and then after i brush and druning the day the slime is clear my tounge and cheeks slightly burn, and i have an awful taste in my mouth
Ive stopped taking my oxy awhile ago I am still taking flexeril, I am wondering if it is an allergic reaction to the flexeril, something called STOMATITIS which is basically an inflammation of the mucous lining of the mouth
I didnt take the flexeril yesterday and lastnight (thinking if it was an allergic reaction i was having this would make it a little better) But, i woke up at 1 am with this head pain beyond belief, laid flat didnt help, the pain subsided a little bit- was able to get back to sleep, but i woke up with a little more then slight pain, and reamined that way throughout the day, (mainly in back of head and neck but also in eyes)
I was wondering if anyone has experienced such a thing and if so what was it?
im thinking its either this STOMATITIS, or thursh (but i dont have the classic white dots or pasty tongue its slimy(silky like))
Hi Hon...sounds like u have thrush...call ur dr and tell him abnout ur tounge u need an antibiotic and if u get yeast infections ask for diflucan .....u take the diflucan after the antibiotic is done, and it prevents the yeast infection.
Sorry its taken me awhile to get back here., Here is an unexpected update-
time passed and things once seemingly getting better were going down hill fast on 10-21 i went to my doctors office for THRUSH he sent me to urgent care, received IV fluids and sent home with some meds, the next day i muddled through, 10-23 my head hurt so bad my husband took me to my local ER for pain was give morphine, and more meds to go home with, then on 10-24 i was wisked off at 3 am to my local ER, massive head pain they done a CT scan and said I had fluid on the brain and i needed to have an emergency shunt put in, I was released from Hospital on 10-27-09 and iam home and healing, I have some weird headaches sitting standing etc..and i still have thrush issues, I really hope once i HEAL everything will be GREAT!...
If i wrote this somewhere else before I am sorry I dont remember. and really dont feel like looking to see LOL
i forgot to add- that the last day i truly remember was 10-21 after that the next time i remember was sunday the 25th waking up in an ICU room with a 1/2 of head of hair and unknowing why i was there or what had happened.
dr. heffez, ns wisconsin chiari center, milwaukee, wisconsin. november 23, 2009.
this dr made a horrible condition tolerable for me. he has the patience of a saint and talked/treated me as his equal....no godlike syndrome here at all! as far as having brain surgery, i would choose him again tomorrow if needed! highly reccommend!~
I thought I updated this but I guess I didn't yet. I am an official Zipper head. 5 weeks and 3 days post op. It still feels like it was yesterday. October 29th 2009 surgery done by Dr. Won at Kaiser Permanente in Fontana, Ca. He is a great surgeon and very nice. I am healing well but not with out putting up a fight. had 1 complication about 8 or 9 days after surgery where my brain swelled and I had a collection of fluid at the surgery sight. I was re-admitted for about 5 days on Nov. 7th. They gave me steroids and blood thinners and insulin because the insulin raised my blood sugar levels. Dr won said this will sometimes happen with patients and it is just the way my body heals and reacted to surgery. He is very conisistent with returning calls and still says for me to give it time to heal. I was back in the ER with a monster headache on November 18th. They gave me morphine and toradol and then sent me home. Overall my experience has been awesome with the Dr.s and hospitals. The healing just takes time and a lot of my symptoms have not been as intense as before. I am pleased that I got the surgery.
New zipperhead for the list, as of Dec 17, 2009. Now at 4 weeks post-op, but still having activity-induced headaches such that I cannot drive or work yet. After consulting with my NS about an inflammed incision around 2.5 weeks post-op, he referred me to a neurologist for the continuing headaches, and for PT to resolve some neck tension / chronic postural issues that contribute to headaches.
I had dissolvable sutures, which my body didn't like too much as they dissolved - looked and felt like mosquito bite welts. Took Percocet for a week or two post-op and then weaned off. Am taking anti-inflammatories and valium for the neck tension issues, but I need to get something stronger for the periodic headaches - we'll see what.
My zipper is only about 4", only a very little shaved stripe, and I had the dural-scoring technique, rather than a full patch. No time in the ICU, but 3 full days in the hospital plus the two half-days of admission and discharge.
Although my tonsillar descent was relatively small (7ish mm) my symptoms were suddenly substantial - surgery was a "no duh", so to speak. After 10 years of daily headaches, dismissed as "tension" headaches, I collapsed at work in early Dec. (may have been a "drop attack") and had tachycardia, severe and constant dizziness (felt like I was on a bongo-board the whole time.) The Chiari Malformation was diagnosed by MRI in the ER the day I collapsed. I also had grip strength weakness on the right, vision issues, what I thought was an ear infection, vertigo, nausea, and (of course) headache, etc. starting a couple weeks prior until the PFD procedure the following week. Occasional at first, but constant after my collapse.
Post-op, the grip strength returned within 2 days, while in hospital, though I still had equilibrium issues for a couple of weeks and used a walking stick (I'm only 29...I refuse to call it a cane!) Mostly gone now, but occasionally I will still lose my balance and bump into a wall. I still cannot be up and about for more than a couple of hours without a monster headache - this is the main impediment to my return to work.
Recommendations for those going in to surgery: have an advocate or family member to watch medicine dosing times - don't "chase" the pain - see if you can get your nurses to give meds on a schedule and not "as needed"...because once you need them, it's too late! Also, if at all possible, leave the hospital on the meds you intend to take at home. Go off the morphine or whatever they have you on, and try a day of the oral meds before they push you out the door. Makes it easier at home.
I felt great and giddy (no more bongo-board or vertigo feeling!) on the meds the first few days at home, but trying to resume some semblance of normal activity is the real test - at 4 weeks, I'm not there yet. Good luck to all my fellow zipperheads!
I was told by other zipperheads to expect to have a return of some symptoms as u heal.They should not be as severe or last as long. I was also told it can take up to a yr or more to see all the benefits and complete the healing process......so go slow....listen to ur body...when u r ready u r ready......I am 7 months post op and still not driving, but I do have other issues going on.....but give urself a break, u had major surgery.
I had my surgery (PFD, C1 laminectomy, duraplasty) on Dec. 29th so I am four weeks out of surgery.
I found the first couple of days pretty painful however I am allergic to several narcotics and my problem was largely due to unsuccessful pain management. I had to ask and WAIT for sometimes up to 1/2 hour everytime I needed a pill. I found it really difficult to find a comfortable place on the pillow and my incision hurt a lot and would get very warm (an ice pack helps if you can handle touching the incision). I was on bed rest for the first 24hrs, I then tried to get up and immediately have severe dizziness so I stayed back in bed for another 12hrs or so. I got up the next morning and was able to move around, mu neck was still extremely stiff but I was happy to see that my gait had improved somewhat. I was given the option to go home on the 4th day and I grabbed at it, happy to have the choice to medicate myself!!
The first two weeks at home were rough, I got up for 5-10 mins at at time but still slept a lot and had quite a bit of pain. I had family members come and stay with me for those weeks to help with my 2 year old and to get my other kids off to school. After two weeks, I went it alone and did well as long as I didn't push myself too much.
I am noticing improvements on a weekly basis but I am not yet back to "normal" (being my chiari normal). I do still have a lot of symptoms that have not resolved but I am told over and over that it just takes time so I am patiently waiting!! I have managed now to control my pain with just over the counter meds and I can do most things around the house that I did before.
I think this is a great idea, I wanted this information so badly before I had mine done and I didn't find it soon enough.
PS( for the ladies, I hardly had any hair shaved either and my incision is hardly a scar already!!)
I am one of you now and it feels great! I can't believe what a difference already. No snoring, I sleep well (ok, I know it could be the meds, but I'm hopeful because I didn't sleep well last week but pain is lessening)and my current sleeping problem is not that I fall asleep all the time, but that I have TROUBLE drifting off and staying asleep. when I wake up at night, I feel wide awake. ODD! And no serious bouts of numbness or tingling. I still have swollen lymph nodes and I am still having chiari type headaches with straining, even though I try not to do any of the things to trigger it, sometimes I just have to laugh (I have 3 little boys after all!). I'm still hopeful that all symptoms will subside, although right now i have to say that I am just grateful that being in relatively good health otherwise has given me an easy and quick recovery compared to many of the stories I've heard. It's so easy to get scared by all the "what ifs" and all the negative possibilities, but they don't always happen. It's been really hard, but I'm glad I did it. My incision itches like crazy and I have to keep my hands occupied by knitting (or typing) or I will scratch the heck out of it! My lower back muscles and sciatica are acting up, and my legs are sore -- but that's from sleeping and walking in odd positions and it could be lots worse! I am SO GLAD I did it now and not later. I haven't had tightness in mychest or shortness of breath since leaving ICU the day after surgery.
I am praying right now that dear Alex has as positive a result as I did! And that Jada eventually finds the relief that I have found. Dear friends, thank you so much for all of the support and encouragement!!!
Hello , I thought I had put my date in here but, I guess not. I became an official zipperhead on 1/6/2010. My doc was Dr. Kim at the Micher Neuroscience Inst. in the Texas Medical Center. So I am approx 5 weeks post op, had a few little bumps, small csf leak at first. Then I had some fluctuating swelling at the incison site. We think it is my body trying to adjust to csf flow, on a course of steriods now and alot of rest. I feel great currently! No headaches this week, my neck feels strong just swollen with fluid. Heading back to the NS Tues to evaluate for possible LP shunt or something to try to get the fluid off the back of my neck. Keeping up the positive vibes though! I enjoy this site alot, you guys are so supportive of each other, and it is nice to hear others experiences. I plan to post some pics on my profile of my experience. Thanks alot.
I've been a Zipperhead since Nov '05. I would love to have this magical story about being completely healed but it's just not the case. But I do have an amazingly incredible life with a husband that loves me very much (even though he's in Korea for the year) and a great 20 yr old kid who is in college. I am spending the year traveling even though I have plenty of medical problems such as, migraines w/ aura, dysequalibrium, diastolic dysfunction, neuropathy, insomnia, central sleep apnea, brain fog, etc. However, my life is completely amazing because I am capable of loving and feeling loved.
Glad to have one more Zipperhead in the group : )....not happy u have to deal with the condition tho.....It is great to have someone with a longer history of being decompressed....I had mine in May '09...so coming up on 1 yr....doesn't seem that long ago....but I am getting there : )
Zipperhead :) May 26th, 2010. Can't belive it is over! Now just the recovery to worry about... need to stop typing, getting some muscle spasms right now, feels funny to think that typing has caused this. My husband surprised me with a HUGE beautiful recliner to relax in and he also got me 15 longstem red roses for our 15th anniversary that I had to spend in the brain unit :) Isn't he sweet!! :)
Official Zippa Head from New Hampsha!
Decompression and Duraplasty on 6/30/10 (4 weeks today)
In ICU for 1 day then a beautiful private room until released on the 4th of July. First couple of days were not fun. They tried to get rid of me on the 3rd but I said NO WAY. I still would have liked to stay a few more days. Have had nurse visiting up until yesterday, PT, and OT.
Still recovering. Taking it one day at a time. Some days feeling really good and some moments just need to lie down.
So far no regrets. Still on pain meds and my neck is pretty stiff sometimes so not driving yet.
See the NS on 8/9. We'll see what he says.
bump...please add ur name here if u had the PFD for chiari and if u liked ur NS please add his name to our specialist list...and if u r out of the country...we r trying to compile lists there too, with out ur input tho we can not get it accomplished.
We have a list started for Canada and Australia.....
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.
We're in the process of updating our system during which our trackers and health tools will not be available. We are doing our best to finish this update quickly. They should become available by 6:00 p.m. PST