Hi, I just had my Decompression Surgery 14 days ago, and I am still in a lot of pain, but the Doctors are so afraid to give me anything for the pain because of the surgery?? Is that right? Anyways, I think I am going though new symptoms but not sure… since my surgery I have noticed that shake more than normal and my sense of fear and anxiety are SO high sometimes it drives me crazy… anyone else gone though this? Also, it feels like my shoulders can’t relax and are always pushed up to my head!! ugh!! I just want to relax and its so hard too… I know it’s so soon after surgery, but is this normal? and how can I get help from my doctors? who don’t seem to believe me?
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Hi Mommy of 3,
I think everything you are describing is normal this soon after surgery. Try to relax your shoulders as much as possible and move your head and neck as much as possible. As far as the shaking, that's normal, and I also had the anxiety and fear soon after surgery. I think our hormones and brains get all messed up! Give yourself a good 6 months before you start to compare your symptoms before and after. The pain issue is another story. Did they give you anything at the hospital or when you first came home? That is crazy to think that you are completely painfree at 2 weeks post-op. Maybe you could ask your regular or general doctor to help you out on that? I don't understand why a neurosurgeon would not prescribe a mild pain reliever like tramadol. Most of us that have had surgery came home with Vicodin or something stronger to get thru the pain when we got home. I don't think their not prescribing it has anything to do with the surgery. That should be the reason they DO give you something! Glad you found us here on the site. We can help with support and understanding. You are no longer alone!
Love,
Carla
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Hi Carla, Thanks… I feel a little better now… thought I was going crazy… as far as the pain… In the hospital I was on Pain Meds every 3 hrs, which worked for the most part, but My Neurosurgeon gave me percocet for at home which doesn’t even touch the pain at all!! So I went to my Pain Doctor and he said because of the Brain Surgery he didn’t want to give me anything stronger for the pain because it can cover up the symptoms I might have after the surgery!? So for me to go without pain meds!! My BP was 150/109, because of the pain I was in!! My neurosurgeon didn’t want to write anything stronger because that’s not his “field”… and he wanted me to go see my Pain Doctor! but now the Pain Doctor won’t help!! I just don’t understand!! It’s really hard to recover and relax when you are hurting so much… I’m not asking for a lot here just to be comfortable… but then I feel like when you ask they think that’s all I want is drugs!! which is NOT, cause that’s why I wanted the Surgery so I could get off all the drugs!! Just seems like it never ends… Ive gone to my general doctor and another doctor and every single one of them refuses to do anything or treat me because of the Brain Surgery I just had!! They said I am a Brain Patient now and I have to stay with my Neurosurgeon Doctor!! Just frustrating!!
Hello im sorry that you are going thru all the pain. I’m almost 4 ems post -op my 1st 2wks was painful also I was prescribe periocet also but I didn’t get it. I just had vicidon. And another med but they didn’t work. I was having head aches im not sure what type pain you are having but if its headaches try excerdin migrane that helped better than the stronger meds that made my head hurt worst. I find that when I lay done my shoulders be pushed up to my head also I I was trying the keep from hurting my neck. Try those pills and let me know how that work.
Hi, Yeah my meds are just not working… I still have my headaches and some strong pounding on the right side of my head when I stand up as well… and at all times my shoulders just feel pushed up and I can’t seem to relax them at all. My neck is still very stiff too. I know its still so soon after surgery, but I tried heat and ice, but neither no seemed to work either. I just lay around it seems all day. Maybe just more rest… Thanks =) How do you feel now after your surgery? What did you have done?
Im doing better I had decompression surgery. That stronger meds I found to make my head hurt worst so I was told by my insurance nurse to try excedrin migrane it worked wonders. You had to try and move your neck though after the sutures/staples are removed you will feel much better. I hard a set back because I have one area is not healing because my neck is fat which caused a leakage. I was in the hospital again overnight dr put more sutures in which stopped the leakage now im waitng to get them removed. You got to move and not favor one side because you will get a crook in your neck which hurt like crazy. Let me know if anything I said helps.
I had decompression surgery June 2010, just one year ago. I was in the hospital for one week before getting sent home, even though I told the doctor I was still in excruciating pain. Then I went into the emergency room 3 times in the next week. All the doctors told me was that I must have a low tolerance for pain and I just needed to give it time to heal. Needless to say, a couple days later I went back to the ER because I had CSF fluid leaking out of my incision! I then had emergency brain surgery to fix the leak. It turns out, I also had an infection (bacterial meningitis) that was causing all the pain! I can not express to you how frustrating it was for me to keep telling the doctors something was wrong with me and no one believed me! So my advice to you…you know your body better than any of those doctors, so if you know something is wrong, keep calling or going to see your doctor until they figure out what is wrong and how to treat it!!!
Thanks… How did they know it was fluid leaking? How did you know? I just don’t feel right at all!! I can’t believe I should be hurting this much!! Plus today I found more stitches still in that they forgot to take out!! Which I think is now infected!! Now back to the Doctor’s tomorrow!! Just seems like such a long road, and what’s so hard is that all of my family and friends have gone away since my surgery… and now I am totally alone =( I think that has been the hardest part… I can’t even drive, and Now I have no way to even get to the Doctors!! Just sometimes don’t even feel worth the fight!!
Its clear fluid and it was leaking down my back. I still have 3 stitches that are worrying me im gonna get them removed tomorrow. You don’t have anyone there? You need someone because you should not be driving at all. Ill send you a private message with my number so you can call if you feel like talking.
Hi....
I am so sorry that you are in such pain ...you are still considered a 'fresh post-op' IMHO....Your NS should be helping you out with your pain control at this point!!! How infuriating !! I would suggest calling his office and telling him that your pain is not under control what so ever...be firm....Sometime these NS have such HUGE EGOS....we tend to get intimidated by them...Don't be...you are the paying patient...you deserve to be heard and helped!!!!
Now...as far as the driving....I didn't drive for many mths and I still don't drive the Thru-Way...but that is just me....but for you, 2 weeks post op is way too soon to drive...again, that is just my opinion. I know it is hard to have to depend on others for rides ect...but it won't be forever...trust me....you will be behind the wheel again!!!
I can totally understand when you wrote that you weren't sure it was worth the fight....Honey, remember your entire body has been through hell with all this....I hate this saying...but I found (find) it to be so true....Time takes Time...
Know that we are here for you...I find Chiari to be a lonely condition, personally...but now that I have you guys..I know I am not alone...
Keep us updated on how you are doing.....XOXOXO
Lori
Hi Lori, Thanks… Yes it is very very infuriating when the Doctors won’t listen or believe that you could be in so much pain!! I just don’t know anymore… I go back to my NS tomorrow because they forgot to remove some of my stitches in my head, so I WILL be asking for something more for this pain!! I just want to be comfortable… u know? Also, I know I shouldn’t be driving but my problem is that my family and friends have all gone away since my surgery so that leaves me with NO help what so ever and NO one to drive me anywhere!! and to top it off my parents just left to VA for a week!! I have to go to the doctor’s to get these stitches removed cause I think they are becoming infected now… so I have to drive… that’s the sad part… I just want to recover… but seems so hard… Thanks so much for the Support =)
lori said:
Hi....
I am so sorry that you are in such pain ...you are still considered a 'fresh post-op' IMHO....Your NS should be helping you out with your pain control at this point!!! How infuriating !! I would suggest calling his office and telling him that your pain is not under control what so ever...be firm....Sometime these NS have such HUGE EGOS....we tend to get intimidated by them...Don't be...you are the paying patient...you deserve to be heard and helped!!!!
Now...as far as the driving....I didn't drive for many mths and I still don't drive the Thru-Way...but that is just me....but for you, 2 weeks post op is way too soon to drive...again, that is just my opinion. I know it is hard to have to depend on others for rides ect...but it won't be forever...trust me....you will be behind the wheel again!!!
I can totally understand when you wrote that you weren't sure it was worth the fight....Honey, remember your entire body has been through hell with all this....I hate this saying...but I found (find) it to be so true....Time takes Time...
Know that we are here for you...I find Chiari to be a lonely condition, personally...but now that I have you guys..I know I am not alone...
Keep us updated on how you are doing.....XOXOXO
Lori
Hi Tradee30, wow… Sorry that happened to you… Did they leave stitches in you too? I don’t understand how that happens? I have been in the Medical Field for 10yrs and that just makes no sense to me!! I know I shouldn’t be driving… but what do I do? NO I am alone!! NO one to help at all… I got your message Thanks So Much =)
Tradee30 said:
Its clear fluid and it was leaking down my back. I still have 3 stitches that are worrying me im gonna get them removed tomorrow. You don't have anyone there? You need someone because you should not be driving at all. Ill send you a private message with my number so you can call if you feel like talking.
Hey do u have health insurance? If so call the helpline and see if they can help you out with a ride. 3 wks post op I still found it difficult to be alone. You are doing good. No friends around? I thank God for my friends and family! I got my 3 stitches removed today I pray that this area healed and no more set backs! No im claiming no more set backs! Don’t forget to call!
Hey… Yes I have Health Insurance… I will call… Didn’t think about that… Yes it is VERY hard to be alone!! I feel trapped… I have a best friend, but she has a 4yr old and 1yr old twins and very busy… but other then that… No friends and the family I do have I can’t count on cause they have excuses and are too busy so I don’t bother anymore!! I pray you heal and NO more set backs too =) It’s time you get to be better now!!
O ok . Try the insurance im sure they would be glad to try and help because they don’t want to pay out any more money. Thanks for the prayer. Im wishing for healing but not to go back to my job. Im praying for peace there!
Hi Guys, Well I just wanted to say Thank You SO MUCH for your support and Good Words to make me strong enough to go to the Doctor’s today and to really stand up and tell him just how much pain I have been in, and Yes he did listen!! Now I can relax and recover better. I would love to call some of you and talk as another way for support. =) Again Thank You So Much!!! God Bless…
HI MOMMYOF3:
I am soooooooooooo happy that stood up to your dr. and told him how bad your pain is....THANK GOD he listened!!!!!
I hope you are able to relax some today..very hard with no help I am sure. We are here for you..even though it is not the same as being there..I hope you feel less alone knowing we really do care!!! I know for me, Chiari can be very isolating and extremely lonely....I think i told you this before..my memory is shot lately..LOL....anyway...our group here has been a God send to me..I have 'met' some wonderful folks here who truly care and I feel comfortable with.
Blessing,
Lori
PS: Keep us updated , OK?????
gm, so how are you feeling today? did you find a driver?
Well… I had to drive myself… I wasn’t ready at all!! I paid for it later tho!! Bad rest of the day and night =( I WONT do that again!! I PROMISE!!!
Thanks Lori, Yes I am glad he Listen too!! Thanks so much!! Yes so far I have met some GREAT people here too!! Finding this place for support has helped me =) and finding people like you =) and Tradee too… Thanks Guys…
lori said:
HI MOMMYOF3:
I am soooooooooooo happy that stood up to your dr. and told him how bad your pain is....THANK GOD he listened!!!!!
I hope you are able to relax some today..very hard with no help I am sure. We are here for you..even though it is not the same as being there..I hope you feel less alone knowing we really do care!!! I know for me, Chiari can be very isolating and extremely lonely....I think i told you this before..my memory is shot lately..LOL....anyway...our group here has been a God send to me..I have 'met' some wonderful folks here who truly care and I feel comfortable with.
Blessing,
Lori
PS: Keep us updated , OK?????