I really need your help! Another post-op decompression surgery question

Symptoms and Treatments Surgery and Recovery
1

Hello all!
I’ve read through quite a few threads on trying to get some sleep post surgery; but couldn’t get through all 238 pages lol. I have yet to get even one full night of sleep- even at the hospital with all the pain meds to keep as comfortable as they could.

I had a craniectomy and laminectomy, so my head and neck both are extremely tender.
I’m currently 7 days post-op and have not gotten one full nights sleep yet.

I’m a side-sleeper, so I cannot sleep on my back, and most certainly can’t sleep sitting up. I’ve found sleeping on my right side is slightly less painful on my neck than my left for some reason. But I wake up every couple of hours and have to switch sides because the pain becomes intolerable. My legs, hips, and shoulders all ache (I guess from being in one position for too long).

Before surgery I took Melatonin every night before bed, but have not needed it since surgery as I’m usually asleep once I lay down.
All I take is my pain medication and my muscle spasm medication before bed.

I have been sleeping with two pillows underneath my head. And I pull one up right over my shoulder, and my hand underneath for a little extra neck support along with a pillow on the side to cuddle onto.
I try to have the same setup on thr the other side for when I have to switch sides. Turning over is extremely painful for my shoulders ache, my arms are extremely weak and don’t want to lift me up since I can’t use my neck to lift my head and my hips and legs feel dead from being cramped in the same position too long.

I have two regular pillows, a large soft pillow but not too squishy its flat which is my main and is incredibly comfy. I also have one of those, what I call, and airplane pillow- those neck support pillows, but I can’t sleep with it because it puts too much pressure right on my incision.

I know that was probably over-detailed, but I was hoping to make answering simpler.

Does anyone have any suggestions for side-sleeping, with the least amount of pressure to the neck/incision site, the wont cause me to wake up every couple of hours due to pain and headache?

I’ll also add that my incision goes from the base of my occipital bone to the top of my shoulders.

Thank you in advanced for any advice/suggestions. I’m desperate for a good sleep!

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they make a pillow for slide sleeping Usually they are memory foam. Just google side sleeper pillow. I did see them at Costco this weekend. They are similar to a CPAP pillow.

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I just had the exact same surgery 9 weeks ago, with duraplasty with graft site on top of scalp. I am a side sleeper as well. I still can’t lay on my back and am miserable sitting down for too long. I took ambien 10 MG after my surgery. It was wonderful. If I woke up during the night I would take pain pills and go back to sleep. I sleep on a down pillow with arm under it, on my side. I had to basically knock myself out to sleep. Still do. Hope it gets better for you. I have been back to work as an RN working 12 hour shifts for 3 weeks now. Definitely not pain free, but better than the first few weeks! Good luck!

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I was the same way then I started sleeping on my stomach and I been sleeping that way every since

5

After my surgery I slept in a recliner for 2 weeks. It helped take the pressure off of my head. I didn’t own a recliner so I actually rented one for 2 weeks. Best $50 I spent.

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I wouldn’t be too concerned that you are not sleeping through the night after only 7 days. I slept whenever I needed it - 2-3 hour spurts on and off all day/night for several weeks. Basically it was like I was taking a lot of naps, day and night, like a newborn. I eventually had to take sleeping pills for a short time to get my body back on a regular sleep cycle, but that was months post surgery. I slept in a recliner for several weeks. I did even manage to sleep on my side in the recliner.

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I found the armchair or backrest with arms a huge help. It took awhile but I can sleep all night 6-7 hours. Prayers for a quick recovery.

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Thank you all for your replies!
I’m trying to find ideas that doesn’t involve me having to buy any special pillows- no job, no work, no money lol.

I’ve been too scared to try to sleep on my stomach, I’m afraid that would put my neck in a terrible position and I would regret it greatly when I woke up :frowning:

I usually will nap throughout the day sometimes, I get tired very easily and quickly.
I tried the melatonin just the other night and it didn’t really help me sleep any more than usual. I have found that I tend to wake up arupdound 5 or 6 am every morning. So I just take another pain pill and valium and can usually fall right back to sleep once I find a comfortable position. Then I’m up for the day around 8. My body has made its own schedule.

I was given a soft plushy-like neck brace from a friend my mother works with that she used after her neck surgery; and though I forgot to wear it to bed last night, I did wear it when I fell asleep for my involuntary nap this morning lol, and it helped greatly! It added so much extra support to my head and neck without adding preasure to my incision.

I strongly recommend asking your doctor for one, or where you can get one. Maybe CVS or Walgreens?

Thank you again for your advice and suggestions, it’s so very nice to have a place just for people that have been through this and can help each other out. :slight_smile:

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Have you thought about taking you Melatonin again, or asking your doctor about taking it? As for sleeping comfy part, I'm also a side sleeper, so i have a pillow or two under my head and a teddy bear tucked under my chin so my head is somewhat level. That is the only way I'm comfy without putting too much pressure on my head. Hope you find something that works for you so can get more sleep!

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I don’t have any problems falling asleep since surgery, (which is great because I’ve relied on melatonin for years) I’m now able to fall asleep almost instantly after laying down.
I usually have two stacked pillows and have recently tried a pillow on the side of me next to the wall to create a kind of V shape to craddle me in attempt to Sleep somewhat on my back. Side sleeping without being able to reposition as a please is doing a number on my legs and hips (I’ve had hip problems since 17) so I definitely do not need anymore pain in that area.
But like I mentioned in my last response, I recently acquired a soft neck brace, so I’ll be giving that a try tonight. I’ll post if it worked ttomorrow, so maybe it can help you all too!

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my surgery was on the 10th of April and im going though the same thini cant go to sleep I take mt pain pills and nothing is working im up now I didn't sleep yet its getting very bad im starting to get depression and crying every night because I cant sleep and the back of my heabh is very tender I cant even touch it

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Hi Kayla, Do you have a recliner chair,I started sleeping in a recliner before my op because of aspirational pneumonia.After my op I found it really hard while in hospital sleeping in the bed,I had decompression and duroplasty with C1 removed ,was pleased to get home to my chair,I have an elasticized single mattress protector over the chair with a pillow tucked in the end to keep my feet comfortable as the pillow gives a bit extra length to my footrest. I can't sleep on my back or stomach because of spinal problems,can't sleep left side because of twisted pelvis which causes my left hip to protrude, used to sleep on right side but my right rotator cuff has tears in it so I'm out of options and the recliner let's me sleep comfortably for usually 6hrs,I bought my chair for sleeping so got an electric one,wish I had gone the bit extra and bought the tilt one as I do find it hard getting out of it. Do hope you can start getting some good sleep,its such a big part of recovery.Good luck.

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Even though I’ve had this same surgery as everyone on this discussion, when I read the comments from some it still pains me to see someone gping through these things. I forget for moment I’ve had this done, and I feel such Empathy.
I’d never suggest that surgery should be one’s first option, even though it was mine since I had no idea what to expect after.

@Dolphinlove, I feel your pain; I was the same way afterward. What sleeping positions have you tried? Maybe I can elaborate on some to make them a little better for you. I take two of my pain meds before bed, along with my muscle relaxers; then when I wake up in the middle of the night, I usually take another pain pill, but just one, so I can fall back asleep. Did your doctor give you muscle relaxers? I recieved valium, so it helps relax the neck muscles while also relaxing me- it’s a diazepam, like xanax, so it also helps with sleep. If your doctor hasn’t given you any, I would suggest explaining to him how you feel and your neck is stiff and still haven’t been able to get sleep. Also, have you tried Melatonin? I’m a huge melatonin advocate, it’s all natural compared to those other sleeping medications because your body naturally makes it- its what normally helps you to fall asleep. It won’t interact with any other medications and may Help you to fall asleep faster. You could also try Benadryl- it’s what I was given in the hospital to sleep.
I know how you feel about your head being tender, mine is very sensitive as well, so laying on my back isn’t really an option. Try surrounding yourself with pillows and Let me know what positions you have tried that have somewhat worked for you.

@Vicki, you poor thing :frowning: I can only imagine the difficulties you must go through. Is your mattress cover a memory foam type one? That may help be more therapeutic, or even a heated blanket to lay on- I know its summer and extra heat is probably the last thing you may want to sleep with, but it could help a lot with your hip and shoulder. Heat does wonderful things to relax and losen up muscles and joints :slight_smile:

I wish I could sleep in a recliner, we have a very Nice one in our livinh room, but I just can’t sleep sitting up, not even propped up too much in bed :frowning:

But as I mentioned in a previous comment, the soft neck brace I received has actually helped tremendously with sleep. It helps hold my head up, so that’s a lot less stress on my neck- I don’t know about you, but that’s one of my biggest difficulties, it’s like my head constantly weighs 100 pounds :frowning:
The brace has also helped to keep my neck steady so I don’t try to move it too much- turning my head is still very painful.
I strongly recommend asking your doctor to provide you with one, just make sure it’s soft!!

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Kayla, I probably spent a year trying all sorts of different pillows. My decompression surgery was the MOST painful thing I ever endured in my life of 66 years. I remember laying in the ICU, thinking "What HAVE I DONE?!!!"

I only consented to surgery because the doc told me that, if I didn't, I WOULD have a terrible stroke and be paralyzed on one side, and not be able to talk either. I actually went back to work after 8 weeks. By the end of the day, I would come home and just cry. I thought - This is my life. I can't stand it. I probably would have committed suicide if it had not been for my husband. He was/is absolutely the BEST.

All I can say is - It WILL get better with time.

You MUST cut yourself some slack. Recognize your disabilities and then organize your life to live within them. I'm NOT saying, "give up, and sign up for disability". I'm saying that you CANNOT do EVERYTHING you want might want to. Find joy and satisfaction in what you CAN do.

I position my keyboard and computer screen for comfort. Frequently I wear a soft collar, if my neck is spas-ing. When I wake up, part of my hand (on the side I've been sleeping on) is frequently numb. It just takes a minute for it to wake up.

I LOVE flower gardening, and have a big yard, but looking down and slightly forward strains my neck, so I will pay for it the next day, if I spend too long in with the flower beds. I have found the FLECTOR patch really helps. I cut a 1 inch strip and paste it across the back of my neck and use tape to help it stay stuck in place. I also will pull a small sweat band down to around my neck, to help it stay stuck against the back of my neck. THAT has helped my chronic neck pain more than anything I've tried. (And I've tried a LOT of things.) I also take Lyrica for fibromyalgia.

Hang in there.

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Thank you so much for the positive and uplifting words!
I know what you mean about waking up and wondering what you had done. I had instantly regretted my decision once I was coherent enough to realize the pain I was in; but my mother was there the entire time, reassuring me that once it’s all over, I’ll have a normal life back and be glad I did it.

You had an awful choice to make between brain surgery or risking a stroke and paralysis, but I imagine I would have made the same choice in that instance too.

I’ve seen a lot of people posting about how they were able to return to work after two months, I’ve also read where some people say even 6 months later they’re still not ready.

You’re very lucky to have a caring and supportive husband to help you through this. I’m so grateful for my mother and her patience with me; I wish I could say the same for my boyfriend, he hasn’t helped hardly at all- I’ve just been an inconvenience, and that makes this whole process so much more emotionally difficult.
I’m 9 days post-op now and I can tell I’m starting to get a little better- I can walk around more, and finally shower and wash my hair on my own, which makes me very happy; relying on someone else to bathe you is a helpless feeling.
I too am into gardening, I’m new at it and had just started growing my own flowers before my surgery but I’m still not strong enough to get out there and tend to them. I tire very easily, but again, thank god for my mother and her help.

I think my doctor still wants me on most bedrest, but I cannot stand laying in bed all day, so I’ve began to spend most of my time on our back porch, watching tv and working on projects. I’ve picked up a lot of crafts, and its very low impact while also keeping me busy.

My suture removal is scheduled for next week and im hoping he will tell me all is healing well and give me an idea of when I’ll be able to return to the workforce.
I haven’t worked in probably… 6-8 months because my symptoms before surgery were so bad I couldn’t get out of bed most days, so I’m looking forward to getting back out there.
I’m still in quite a lot of pain, but its not the chiari pain anymore and I’m very grateful for that.

I will also have to try those Flector patches. I believe my mother still has some that she recieved after her neck surgery and I hadn’t even thought about trying thouse, but they would be great for my shoulder pain.

Thank you, again, so much for your positivity and advice! I so greatly appreciate it!
I hope you continue to heal and hold on to your optimism. We need more people like yourself in the world :slight_smile:

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Please do not use flector patches unless your doctor approves. They are a pretty high dose of dicloflonac and can increase your potential for bleeding. They are expensive so its good your mom has some though................... There are also some OTC NSAID creams

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I was taking 12 Advil a day, and worrying about my kidneys (at my age). Since I started using just 1/3 of a FLECTOR patch across the back of my neck at night, I've been able to stop all the others. I had bruises all over my arms from all the NSAIDs. Now my arms are free of bruises. FOR ME - and I emphasize that, it has worked well. It has also cut way down on my incidence of migraines. but then I'm NOT just 2 weeks post op.

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This is true, you both make excellent points.
I’m pretty sure I read that I shouldn’t be taking any NSAIDs until 4 weeks after my surgery?
I suppose I could mention it to My NeurosurgNeurosurgeon (since I refuse to deal with my primary unless I HAVE to and I’m dreading being released back to him. I have to call Tricare and change my PCM before that happens)
But I’d just like to use the patch for my shoulders since they’ve been incredibly tense.
I so have a cream that my old doctor (I paid extra to see her since tricare wouldn’t approve her as my primary) gave me that has all sorts of pain relievers in it- diclofenac was one, along with baclofen, Ketoprofen, prilocaine, menthol, some steriod, and some kind of liquid/cream quivalent of
tramadol; plus one or two things I can’t recall off the top of my head. But its for pain relief And muscle relaxer. It works wonderfully.

What are your thoughts on that? As long as I keep it away from my incision?

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Give yourself more time. 7 days post-op is still so close to surgery. It does take time to heal - go easy on yourself.

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I really appreciate all of the reaponses from everyone.
I know the best option is being patient but its so hard with still being in pain, not getting proper support from the doctor and being so exhausted.
But I’m very grateful for everyone’s input and advice you all have been very uplifting and the positivity radiates :slight_smile: