Surgery recovery time?

[Nuggin1983]

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?

[selmaS]

  Hi and welcome to the Chiari forum.

Many times it can be a related unDX'd condition that can be causing set backs post op.....

Can you explain the NMH abbreviation?

It is also possible activities he is doing post op may be too soon....

I would ask if ALL related conditions were ruled out....

Then ask what exactly was done during surgery....what type of dura patch was used.....

[adviceonChiari]

Family member had chiari malformation that became symptomatic after a crash. Diagnosed with Hypoplastic posterior fossa, symptomatic. Neurogenic bladder secondary to C.M. and NMH/POTS secondary to C.M.

he had a sub occipital craniotomy, duraplasty and partial tonsil resection. A rim of C 1 was removed as well. 2 months later he ended up in ICU with sterile meningitis and a shunt.
Now ever few weeks the pain builds up in the back of his head. Sever and debilitating. Then a few days later the pain subsides but his low back is in a lot of pain and it shoots pain down both legs making walking almost impossible. A shunt o gram and CT from a few different trips to the ER have shown everything is "as expected" but they can not explain why he has had this series of symptoms ever few weeks. The pain is almost unbearable. Any suggestions as to WHY this could be happening?

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask what all was done during your surgery?...Did you have a lamenectomy, cranionomy and dura plasty? If a dura plasty what type of patch?

Also were ALL related conditions ruled out?

Depending on you and how you heal, this could be "normal"...for someone else it may not....so look to other medical issues you may have had and look to how your recovery from them were....

[rickyann]

I had Brain Decompression in May of 2014 and am still in great pain with the same symptoms as the person above in which I have my hands get numb, pains down the back of my legs and rushing in my ears.  Seems like the symptoms I had prior to surgery have returned three weeks ago and are becoming severe once more.  Today is a good day in which I can communicate but I have trouble with my memory and talking.  Very embarrassing.   I read some of the postings and I pray this does not start all over again.  I had this problem due to a CSF leak that was not caught right away.  Do you think this is normal and I should give it more time.  The pain is so bad sometimes that nothing works

[selmaS]

  Hi and welcome to the Chiari forum.

Many times it runs out and the person is left with no job and no INS....depends on each individual.... 4 weeks will be too soon to go back to work....what type of job do u have?

For ur meds...follow a schedule....do not wait until u need meds or they will not help.

What type of INS do u have?....FMLA covers the job, but not if u get paid....depends on ur job and if u have paid sick time, vacation time , personal days....some employers have u take all of this to get paid while out....once that is gone, u are on ur own or need to lean on a partner as many of us have done.

Do u have savings?....

[Seattle_Hughes]

I just had my decompression surgery 8 days ago. My neck hurts so bad but as long as I am on my meds I am ok... But certainly can tell when it's time to take the next dose! I have medical leave insurance that is helping for know but what do people do if they don't? I thought I would be back to work in 4 weeks. So what if insurance runs out and I am still recovering? How do people recovering from a decompression surgery survive financially?

[selmaS]

  Hi...sure....
  If u click on ur name it will take u to ur profile page, u can also access it via the shortcut drop down ( under the My MedHelp Icon )at the top of this forum on the right hand side.

May I ask what means u r using to access the site? Lap top, Iphone? as u will see more features via a lap top or desk top computer.

On the Profile page u can add photos, and journals....all sorts of things....trackers....

Let me know if u r still having an issue navigating to ur profile page and Journal.

[chiaricyndi]

Hello.  I am not very familiar with posting to a journal or accessing my profile page as I haven't ever joined in on a forum.  Can you guide me as to how this is done?  Thank you.

[selmaS]

  Hi and welcome to the Chiari forum.

  So glad u had such a positive outcome....not all are so lucky and do experience issues and set backs.....

It is wonderful that u r willing to share ur journey with us.

To make it easier, u may want to post ur journey in a journal on ur profile page for others to easily find ur info...many of us have our surgical experience documented in this manor.

  Also, please look at our list of Drs to see if ur Dr is on it, if not please add his name to the thread so it gets added to the Health Page list : )

[chiaricyndi]

I had the surgery August 2013.  Decompression, laminectomy, and duraplasty.  My recovery time was 6 weeks or so.  I had a very positive outcome in that all my Chiari symptoms were gone after the surgery.  My herniation was 17mm and I had csf blocking. I am interested in encouraging anyone facing the surgery and am willing to answer questions, etc., about my experience.  I'm a 48 year old female. Thanks :)

[selmaS]

  U should not be doing laundry at this point...that is too much lifting and bending...

4 weeks??? goodness that is again too soon...this could be why u feel as u do, many develop or redevelop symptoms at 3 months as we heal, but the first  2 months u need to go slowly and allow ur body to rest so it can heal...as it can take up to 2 yrs to fully heal the nerves....it is a continuous process for some time and doing too much too soon can cause set backs and pains.

For many they may still be weaning off the RX pain meds from surgery....so for u to be on OTC meds...I am surprised...and ur Dr will be better able to tell u what and how much....

I know it is not easy to be home, but we need to be patient in order to heal....u just may need to cut back on some of the housework and see if u feel better as a result....

[audrey00115]

I had the surgery on 1/9 and am glad I did in the end. I was fortunate enough to be diagnosed quickly after an MRI was done. The recovery has been very tough at times. My doctor warned me about the pain from day one, but I didn't imagine it would be real bad sometimes.  My symptoms are almost gone. My tinnitus is decreasing. My main questions are: how long is normal to take over the counter meds (AM) and pain med (PM), is it normal to feel dizzy after doing laundry, dishes or shopping and how can you sit in a chair at home and feel comfortable? The pain is the worst at night. I went back to work 4 weeks after, which probably was not smart, but I got tired of staying home. I work part-time and am pretty much at a desk. However, keeping your head up without support wipes me out. I still have a lot of pain in my neck and sometimes pain above my left eye and back of head on the left side. I believe this is probably part of the recovery process.  I am trying not to focus on benchmarks to determine if I am doing better or not, which was what the doctor advised me, but it is hard. My 2nd follow-up doctor appt is 2/24.  Any Qs I should ask? Thanks for this website.

[selmaS]

  Hi...I did reply to this same query in a different thread here.....

this is the link - http://www.medhelp.org/posts/Chiari-Malformation/pre-op/show/1739433#post_9748588

[audrey00115]

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.  

[selmaS]

  Hi and welcome to the Chiari forum.

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.

[tay1980]

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 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

[frankie_rush]

Hello Heather,

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

[selmaS]

  Hi and welcome to the Chiari forum.

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.

Keep us posted <3

[Tailajade_xo]

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!!!

[selmaS]

  Hi and welcome to the Chiari forum,.

Dx'd with ??? Chiari and a 19 ?...mm herniation?

Chiari is not rare, nor the length, but Drs well informed and experienced with Chiari, now that is rare...could be this Dr has not really dealt with Chiari and that is y  he/she feels it is rare....??

What symptoms do u have ? ...Did they check u for a CSF obstruction?

[shsmith11]

I was just diagnosed with a 19 and have heard I am very rare.

[selmaS]

  Hi and welcome to the Chiari forum.

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.

Good luck with the NS and do post an update : )

[heather238]

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.

[selmaS]

  Hi and welcome to the Chiari forum,

Thank u for sharing ur chiari journey with us....

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....