I am a 25 year old male and I had decompression surgery 6 months ago. I am still suffering severe pain in my neck and shoulders and heavily depend on pain relief (Endone) I feel like I am never going to be normal again. Has anyone had the surgery and what was your recovery like...how long until the pain subsides?
I had the decompression surgery three months ago and still have to rely on over the counter pain meds. Luckily, it has not been as bad for me as others. Did your doctor give you a rehabilitation program? From what I have heard it is not that abnormal to be in pain, I have heard that it could take 6-8 months to start to feel better, especially when using the muscles. Hang in there.
First, I hope things begin to get better soon. Second, I have been told that various symptoms Chiari patients experience post surgery may take months to up to two years as the body regains strength. I think, in some ways, those of us that have had surgery for Chiari will never be 'normal' as we knew 'normal' prior to surgery. Some of us may discover that we cannot participate in various recreational activites and others may still experience a variety of varous types of pain, some of whic we did prior to surgery. I hope you have understanding friends/family and that you will be patient w/ yourself. As we know and as noted about, we all respond differntly and at different paces.
I know i'm really late but I was just randomly searching the internet for what recovering from surgery is like and I saw your question. I had surgery in july of 2008 and im still in severe pain. I was told before surgery that the recovery time is between 3 weeks to 6 months and now 2 years later i'm still struggling a little bit. My doctor told me the pain is something that i have to live with because its been so long. I'm just glad im not paralyzed (that's the silver lining). My cerebellum was 18mm and it tore my spine up. But I'm alive, I can function, I can walk and write, which are things i couldnt do after right after surgery. I hope your feeling better and if you havent i hope you've gotten used to the pain like I have. I think what helps is to do little activities that will stretch your shoulders and strengthen your body because i think that was my downfall.
I had chiari decompression and a neck fusion done on feb15, 2010. I have a syrnx. I am in constant pain it gets worse at night. I wake up with my hands completely numb and pain going down the right arm. My muscles in my shoulders neck and back are always in pain and still have pain when I move around for long periods of time. I have to lay down every few hours and the hardest part for me is no one seems to believe I could still be in all this pain after 8 months. quality of life really ***** I really need support. I need to find a doctor and support here in columbus. Really need some Hope
I am so sorry u r having such a rough time post op. Have u had a post op MRI? Do u know if CSF flow was restored?
Many times pain like u describe can be a sign of something else going on, be it from the surgery itself or in addition to.....
May I ask, is ur NS a chiari specialist?.......this can make a difference in getting the proper care......and finding out what else is possibly going on.
We do have a list of chiari drs u should research....and be advised u may have to travel to get to one.
The next thing is do u have a NL....the after care for chiarians is basically non existent....the NS just checks on the surgical site and CSF flow afterward and he is done....then most r left hanging......
Do try to find a NL to see if they can be of help to determine y u r in pain.
My son Jimmy is five years old with Williams Syndrome and on January 8, 2010 had surgery to correct his Chairi Malformation of 17mm. Jimmy is still weak and sometimes suffers pain in his neck but we try to help him relaxed as much as possible. We just had a follow up and Jimmy will start with muscle relaxers and is now wearing a neck brace. We have mostly good days and some bad hopefully soon they will all be good
My Daughter is 3yrs old with Williams Syndrome. She has recently been diagnosed with CHiari Malformation as well. We have seen 2 nuerosurgeons. The first came highly recommended and she is reccommending surgery to prevent further damage. As I'm sure you know there are additional risk with WS and surgery and anthesia. I'm wonsering what your recommendation is being that you have already gone through the procedure. Do you have any advice?
I am 3 months post op and have very little neck pain. Even my pre-op neck pain has gone away. It is really nice.
I was in excruciating pain after the surgery for like a month, month and a half. Then it started to decrease. By a month and a half I had stopped all my prescription pain meds. I rarely even use Advil for neck pain now.
Hi....What u need to find out...is the NS that is suggesting surgery a true chiari specialist?....did they check ur DD for a CSF obstruction and do they feel the benefits out weight the risks?Not all with chiari require surgery, but u need to find out how it is impacting her health....
Next, the anesthesiologist should be able to adjust to work with ur DD to aid her comfort and safety during surgery .
Hi, I had my surgery for chiari on June 23 2008. I felt better the moment i woke up from surgery! My surgery took 4 1/2 hours because my brain had dropped further since my last MRI the farthest it was down was to my second vertebrate. I had virtually no pain post op, even after i left the hospital. I asked the Dr to take me off the morphine the day after my surgery and took barley and of my pain meds when i got home. I was rock climbing three weeks after my surgery and went back to playing ice hockey that winter. I had no complications and had an awesome surgeon that really made me feel comfortable in what he was doing. I had my surgery in Eau Claire Wisconsin at the Luther hospital, i went to see another Dr in Minneapolis but chose the smaller hospital instead i'm really glad i had the surgery, even though my syrix is still there but getting smaller.
I am to have decompression surgery on Tuesday. General advice as to what to expect during recovery time? My NS said a minimum of a month of no driving, anything, so I am hoping this will help aid in my recovery. I only have a 5mm prolapse, but very high symptomatically. I was given a 50/50 chance of good outcome. I have nothing but time to lose. What is your opinion??
It is diff to say just what or how ur recovery may be as we r all diff and it depends on what is going on b4. Do u know if u have a syrinx or other Chiari related condition? Things like sleep apnea, tethered cord, disk issues,ICP, elders-danlos,are good to know if u have prior to surgery. Do u know if u will have a dura pasty, and if so what type of patch?
I had surgery 2.5 yrs ago and still no driving as I do have other issues,but am so much better post op.
4 weeks to drive may be soon depending on how u do with mess etc.....
Then again u could be fine. The important thing ida not to over do it post op even if u feel u r up to doing more as it may cause set backs.
Feel free to read the members journals here for a insight to some of our experiences.
My daughter was just diagnosed and she has a 18mm is that really serious. She has had systoms for 11 years but was blammed on Mild C.P and Mild Autism.. They are talking surgery If anyone out there has had a 18mm please let me know I can't find anything on the internet to define it for me
Hi...in that the herniation is long, that is not the main concern, is it wide as well and causing a CSF obstruction?..Does she have overcrowding?
I explain it this way- imagine the skull where this herniation is like a funnel and the herniation a piece of shoestring licorice...u can hang a single piece thru the funnel but still pour water thru without trouble...but, if the herniation was more like a upside down gumdrop, short and wide it would cork up the opening obstructing flow.
Make sure u find chiari specialist that is well experienced with chiari and related conditions. They will want to check ur DD for a syrinx, CSF flow, disk issues, ICP, EDS, sleep apnea.....
We do have a list of Drs, it is not all chiari specialists, but there are names of drs that treated the members here....u need to call them and research them to find the right one for ur DD.
The list is not meant as a referral...just a starting place for ur research.
I think alot depends on what you have done during your decompression, as not all are the same.
In 2009 I had a decompression surgery that removed a small portion of the base of my skull, and a small section of my spinal column. I was in the hospital for 5 days recovering then sent home. It took me roughly 2 months doing physical therapy to feel "comfortable" driving, meaning i finally had a range of motion in my neck where I could check my blinds spots with only feeling a slight bit uncomfortable with the movement. At the time I thought that was the end of my recovery although to be honest looking back at 2 months I was no where close to being fully healed (I felt back to normal were I was exercising and doing strenuous things with no negative effects around 1 year). The hardest parts for me were up and down movements with my head, and showering. My tips would be to practice every night small head movements and shoulder rolls to help gain strength back into these muscles and if you do run into issues with balance and pain in the shower then you can do what I did, I invested in a plastic chair that I placed in the tub and used to sit on and had a friend install a hand held shower head with a mounted holder kind of low down where it was easier for me to reach. The hand held shower head also had the benefit of having a softening stream that in the first month was the beneficial as the area around my neck was very sore and tender and traditional high up and hard streaming heads agitated the area pretty badly.
Thanks for sharing some helpful tips that u learned along ur chiari journey.....
How long post op are u now?...the member u directed the reply to has not been back since the mention of the surgery.....I would imagine that, the member is recovering since that was Nov.....but ur kind words may help other members as well.
I am not sure but do u mean PFD surgery for a CSF obstruction?
Not sure what u mean by wanting to know the results...we r all different and will have a slightly different experience and results...it depends on ur age, and what other related issues u may have and other health concerns that may not be related to chiari.
How do u feel so far?
DO u know if u had a dura plasty? ....laminectomey?
How long were u in the hospital?Did u have ur surgery in India?
The best thing u can do at this point is rest, walk when u can, and exercise ur neck to avoid it getting tight and developing scar tissue, there r certain exercises u should be doing....no lifting, pushing or pulling...no bending....
At this point u need patience to allow ur self to rest so u can heal.
Hey, My mom is 29 years old and had the Chiari 1 decompression surgery Feb. 29, 2012. She was in ICU the same night as surgery then moved to a regular room the day after. After 3 days in the hospital, she was up moving around and trying to make her own bed. She was allowed to leave the floor and go get lunch in the Veranda down on the Main Floor. She was discharged on the 5th day. When she come home for the first time, she still had limited movement of the neck but she was up and about just a little slower than she wanted. She was told that she would have to have Rehab when she left the hospital, but on the day the Home Health Care nurse was suppose to come the Dr called and said himself that it was not nesscesry. So she contiuned to take it easy and learn her limits.
By the 3rd week she was back to normal, or so we thought. She had been out to the grocery store and everything within those 3 weeks and she felt okay. Then it hit like a ton of bricks. She had the headaches and certain numbness returned. Her Dr mentioned something about a Chiari Stroke but we done alot of research and could never find anything about the strokes.
And as of today, April 26, 2012 she is in so much pain. She did head her head a few days ago and she had this weird feeling come across her for a couple of hours. The hit did not knock her out. She said the feeling just went away like a normal hit would do. The next morning she woke up and had to have help getting out of her bed. And had a killer headache that would not go away. She had soreness in her right side of her neck, and shoulders, and pain going down her spinal and across her back. She had slight numbness in the right side of her face and across her upper lip and down her right arm, (numbness in the right arm and across the face and lip were one of the things that were present before surgery.) She took her pain meds and her muscle relaxers as directed and nothing helped. We took her to the ER after she called her Dr and he didnt have an opening for that day and he told her to be seen immediately. We get there and talk to the ER Dr and he reviewed all her history and he described the pain she was feeling as SEVERE whip lash. And that she would be more likely to get whip lash or something similar because of the surgery, (the Dr had to remove part of her skull and part of her 1st vertabre) but when we asked the Specialist who done the surgery about the risk of this happening, he told us it was not any more than likely than anyone that had not had the surgery.
She is to the point of giving up, because she feels she is getting the run-around with the specialist and that there is no way she is going to make it though the recovery. We have a large family and many friends that are not going to let her give up though.
She has a friend that also had the surgery 4 months prior, and she has made a full recovery. She and my mom have compared notes on the way pre-op, surgery, and post-op has been for them and they have been on completely different of the spectrum.
Is there anyone out there that has had the decompression surgery and has a Dr that told them the risks and that whip lash was more likely than anyone else. Please we need some answers because we cant get them from the Drs here.
First ur mom should not compare her recovery to her friends as we r all different and she may have other issues going on..it is possible to develop issue s post op, and this is y it is good to have testing to rule some things out b4 surgery.
Do u know if ur mom was tested for a syrinx, tethered cord, ehlers-danlos, sleep apnea, disk issues, PTC?
If she has ne one of these it can affect how she feels and heals post op.
It is also possible to develop an issue due to having surgery, our bodies sometimes react to the trauma of surgery and we can develop PTC, or intercranial hypertension....and other issues could be med related, not doing neck exercises, doing too much, .....
It may take her body longer to heal....I am one with EDS and I am slow to heal, plus I do have other issues in addition to chiari...that slows the process....
Also how long she had symptoms b4 she got a dx and treatment....this can determine if some of the symptoms will go away or if she will continue to have them post op.
If her HA's r worse then b4 surgery she should call her Dr....or if she develops a new issue.....u said she hit her head...she may want to call her Dr and let him /her know. When does she go back for a post op visit?
I had decompression surgery 3 weeks ago, but they didn't tell me anything about neck excersises. My neck muscles are pretty tight and sore. Can you tell me what excersises I am supposed to be doing? Thanks.
Also, I still feel pretty dizzy and disoriented and have to lay flat most of the day...is this normal only 3 weeks post op?
Yes, dizzy and nauseated...vertigo symptoms mostly. This is what I struggled with mostly before my surgery. The doctor told me it might take 6-8 weeks to feel better and to just give it time. So that's what I'm trying to do. I go back to see him in about a month so I'm hoping to feel better by then.
It does take time to feel better, but u should not be laying in bed everyday., u should be able to sit up, walk around....and as I said move ur neck in order to prevent the muscles from getting tight and scar tissue from forming.....
We r all different and it may be a slower process for u....but do try to sit up, and walk everyday.
I can sit up and walk around, and shower and do some light activity. It just seems like I get dizzy and nauseous just by doing very little. It is frustrating and I hope it is normal and will eventually go away. I am a mother of 2 small kids and used to be a very active person so it is very hard to not be able to do the things I used to do with no problems. Thanks for your help.
I will do the things you told me. I understand I just need to be patient, but boy is it hard! It's hard not to get depressed over it all, you know? and sometimes I second guess having done the surgery...I just hope it is all worth it in the end. Thanks again for your help. :)
There r stages of recovery and depression is one of them, so yes I do know...and u r not alone in that....it is very hard to sit and take care when u r use to pushing urself to get thru things....but, we should not have to push, and in order to feel better we have to allow the healing to occur....otherwise we can end up worse off then when we started.
No worries and do keep us posted on how u r doing : )
Thank you for the neck excersises. They seem to be helping a little. I wish I would've known to do them right away, but at least I know now. I am going to go for a walk in a little bit. Thanks again for helping give suggestions for my recovery. I already feel like I'm more optimistic today. I appreciate it more than you know. :)
when you did the neck muscles did you have any tightness and soreness in the muscles on the side of your neck? For the past days I have felt extreme tightness and soreness in the muscles that start right under the ear and attach at the base of the neck. At night they bother me so much it seems like my throat is closing up. I have been taking ibuprofen and putting an ice pack on them but it doesn't seem to help that much. My surgery was a month ago and I've just started feeling this in my neck the past few days. On a good note- my dizziness is getting better and I am able to be up longer doing more and more everyday. I' m trying not to push it though because I seem to suffer the next day if I do too much. At least I'm not having to lay in bed all day anymore though. :)
To be scared is quite "normal" I really think we all were scared b4 having this surgery, but the journey to get to finally have a DX and reason for the pain to allow the fear to keep us from moving forward with what we know we need.
The issues r also that u r confident with ur Dr and all the testing that has been done to this point....if so, u should be able to go forward and know u will be ok.
I am happy to welcome u, but so sorry for the reasons u r here.
I had my surgery 9/20/2012. I was terrified. I expected the worse. I had a laminectomy with occipital craniotomy. I was in the ICU for a day and a half and then moved to a regular room for 3 days. My pain was controlled. My only discomfort was the stiff neck and not being able to lay on my back or sleep on my left side. I am 4 wks post op and I am off the pain medication, I still have occasional nausea, mostly when riding in a car. I will try driving with a passenger next week. Neck is still tight and somewhat stiff, but I exercise by turning my head a little each day. Feels better in the shower. Go into your surgery with a clear and open mind that everything will be better then before. Think positive and above all pray.
To help prevent that tight neck, r u doing neck exercises? this can also help prevent scar tissue from forming....use heat for 15mins b4 u do ur exercises and then again after u r done....this should help loosen them up,,,,,I do have a chart of diff exercises that r good for this type of surgery recovery.....so if u would like to see it let em know.
I am happy to welcome u, but sorry for the reasons u r here....
My 14 year old son was diagnosed with type I chiari malformation with a syrinx. He had a chiari decompression done on the 31st of October,but nothing to the syrinx. Before his surgery he couldn't walk without crutches due to sever left leg pain and weakness. He was on crutches for 3 months before the surgery. He did well through the surgery and while in recovery he told the nurse "my leg doesn't hurt as bad." That was the first thing he said, "not my head don't hurt anymore" but his leg. He is still off crutches and we are so happy because during this whole ordeal he got depressed. He is a very, very active teen. He swims, runs marathons, track, CC, played football, and just got his advanced divers cert last summer. So you can see where he might have got down. But he is now going to PT 2 days a week and had seemed to be doing well. Over the past two weeks his head has started hurting, pain is coming back in his leg, dizzy and nauses. He goes back to the DR on the 14th of Dec. is there any thing I should ask about other than the HA, LP. Thank you for listening.
I am so sorry ur young man is having to deal with this and at that age I do not want to insult him and call him a boy, but I know he is ur little guy and always will be....
May I ask what he is doing daily outside his PT?
It is pretty typical for around 3 months post op to get some symptoms back as the nerves heal....it should not be the same as it was b4 surgery or last as long, or diff...if it is or if it is new u should ket the Dr know.
I am surprised with Chiari he could manage crutches as we tend to have balance issues....add crutches and it can make things worse....I had them for a short time after surgery...but not sure I could have gone 3 months...
Depression is also normal for those with Chiari, post op and even pre op to go thru, it is one of the stages we all journey thru some get past it more quickly then others,....we r all different so will our journey 's.
Did they check him for a tethered cord, disk issues, ehlers-danlos?
He should make sure he is not over doing it, also make sure his PT know about Chiari and they r not having him do certain things that could make him feel worse afterward...not all PT know the best way to work with us.
My 23 year old daughter just had chiari I decompression survey 2/14/13 and is home from hospital. She has good. Days and bad nights. They have her on an array of pain meds an was tapered of decadron which is a steroid. The day after her last dose she had a horrible day to the point you couldn't even touch her. She was complaining o severe pain in the top of her head not so much the incision site. They put her back on the steroid and she's doing better. She is on 15mg morphine 2xday. Also 10 mg Valium at night before bed and 5mg Valium in the day if needed. Does anyone know what's next for pain meds. To be honest the Valium is really helping relaxing the muscles but as far as pain meds does anyone know what they may prescribe after the morphine cause I can't see her taking that much longer!!!
It is still very early in recovery for ur DD...and it may be a few weeks till she starts to cut back off the pain meds....
It sounds like she still has inflammation, so watch her temp to make sure it is not an infection.
Post op we do feel over stimulated from lights, loud sounds, and even emotions run a muck....this we r told r the nerves healing and coming back to life...I do not know if that is what is going on with her.
I was not on morphine, I was on dilauid and when I stepped off that , I did not move to another pain med, but did continue with the valium for a while...or when I had muscle spasms.
AS I said it is the steroids that she can not continue with much longer, but it may indicate a CSF leak or infection...so do keep an close eye on her temp and her symptoms.
I am sorry to hear your little man is going through this. But he sounds like a fighter. I am a 46 year old male that spent 16 1/2 years in the Military. A Marine and a Solider. So you can see I was very active to, the day before surgery I walked into the hospital with no help. I had the surgery and could not sit up by myself. I left the hospital in a wheelchair. But 6 months later with the best therapist and best place Patrica Neal in Knoxville, TN I am walking with no help, driving and back to work as a computer tech. So tell him I am very proud of him and never give up, you may have to take and do it a different way but you can always do it. Like ai used to tell my people in the military I don't care how you get it done, just geet it done. Semper Fi
I had my surgery 5 wks ago and I have been tryin to get strength back In my muscles In my legs and neck arms etc... I have my good days and my bad days good night and bad ones. I still have alot of stiffness in my neck and some numbness In hands and parts of my legs will be numb. The doc can't do mri til the 2month post or. I need to go back to work. MY job doesn't require anything except walkin and checkin doors. I also have to wear a hard hat. I can't wear that yet but can try a bump hat. Will this be a big risk to go back to work?? I'm post to start back tuesday day after my 5 wk mark. I suffered for 4 years b4 I Found right doc at the semiens murphey insutuation I have a great doc. The fluid was completely gone In my neck brain was already sitting On my spinal cord In my neck. Had severe migrane (migraine) and chronic pain in my shoulders and arms I was clumsy so I thought. I have done some little house work but not all at once and every time I do a little of anything I hurt so bad I can't sleep can't get comfy for nothin. Is this normal? Some days I dn't do anything except get somethin to eat or drink. It's easy meals like oatmeal ,yogort or any soft foods cause still can't chew long or tilt my head back to drink I still drink out of a couple wit a straw. I'm not sure what I'm askin I'm just miseriable
May I ask y u need to go back to work? 5 weeks is so soon to be going back to work regardless of ur duties....driving to get there is too much at this time....the more u do now the longer it may take u to feel better and it can also cause set backs...
Did ur Dr release u to go back to work ?
U should not be doing ne lifting, pushing or pulling....u need to rest and heal...walking is good but a little at a time and u need to do exercises for ur neck so it does not get stiff and to help avoid scar tissue....
I understand how u feel....and it takes time....I am 4.5 yrs post op and each yr that passes I see more improvements....so it is not something u will see right away.
I was recently diagnosed with chiari malformation. I am having decompression surgery in a month. With my insurance changing and the holidays this is the best time. However I would prefer sooner as my neck and shoulder pain continue as well as the tinnitus. My family has encouraged me to have a second opinion, which I am in a week. This other neurosurgeon is too busy to meet with me until then. I liked the neurosurgeon that is scheduled to do the surgery. We meet five days before the surgery to go over everything. Is there anything you can recommend I do at this point? I do have a really dumb question. What clothing will I be wearing while in the hospital? I would think PJs. I am short and all my PJs are too long. I want to know if I should spend the money to get new ones. Also, what should I expect on the pre-op day? Does insurance typically charge for each service or just per day? I ended up getting the diagnosis after having an MRI. My ENT referred me to have an MRI because of my symptoms. All of this has happened in about 2 ½ months. I have just started taking norco for pain at night and tramadol during the day. I am trying not to rely on that. Thanks.
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