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I am hoping someone can please help me figure out how to get my primary doctor who knows next to nothing about chiari and is hesitant to do anything to help manage the pain I am in. I had surgery as I was told it was the only way to stop the pain but 4 months and a day now I am still in pain and I have bad headaches again. Now he wants to put me on gabipentin which I have never heard of to help with the pain. Does anyone know anything about this medication or the side effects it has. I am treated as a drug seeker everytime I go into his office and he actually asked me what I want him to do. What I am not a doctor and the neurosurgoen who did my surgery says I need to go to my primary. Since the surgery I have more sensitivity to light blurry spots in my vision, a liquid squishing noise when I move my neck and if I look up or down it feels like my brain is being punched. Is this normal after surgery is there something wrong? I just came from my primary doctor and he was clueless.
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Selma is correct you should be having a 6 month post op MRI...they need to make sure that nothing has changed. My NS told me that I had to wait at least 6 months so they could be sure there was no re-blockage.
The after care of surgery is almost non-existent and you really have to rely on your GP to send you the right places. Thankfully, mine got a lot better about helping me once I got the dx.
I was started on the Gabapentin at 4 months post op too..for the same reasons you are. I was still having a lot of pain, in my head and body and I finally gave in and realized I would have to try something. So Gaba came first and the side effects were hard for me, it made me sleep but I felt like a zombie for half the day and I had kids to take care of. Then, it stopped even helping the pain (and in my case, my leg spasms) and the only solution was to take it in the day too which I can't do b/c of the drowsiness. So I switched to Lyrica, pretty much same results except the side effects were much better. Still, nothing was touching the midday pain ( couldn't take that in the day either). Just recently, my GP added Amitrityline to the mix (with the Lyrica) and a bit of the drowsiness first came back but has settled down. I noticed a bit more improvement in the morning but still...by the end of the day, the pain is back full force. I am starting to realize that maybe meds are not the only answer..
I have been and still am in the struggle you are...trying to figure out why there is so much not right after the surgery. My NS reminded me that there was not guarantee of anything getting better that the goal was to stop the progression (in my case, stop it b4 I couldn't walk at all). He also said that it can take up to 2 years to see the final results. I have to admit at 8 months I have started to see more improvements again. That said...you can't just sit by and wait either. It has been recommended that I start some rehab and that is what I am going to do.
I have had weeks of bad headaches too since surgery...but then it seems to ease up for awhile. I think you really have to look at what you are doing each day. When I went on holidays, my symptoms were much better b/c I was relaxing so much. If I get a headache, I know it's b/c I lifted something I shouldn't or did something..but in my life it just isn't possible not to.
So don't feel intimidated with these Dr's..go in there and tell them that you can't just sit by and suffer and decide that is "all there is". Tell them that you need to get your quality of life back to as close as you can to what it was b4. They can't fault you for that..no one deserves to live in constant pain. It sounds like you've had recent stress lately too which can't be helping...I'm so sorry about that...I couldn't imagine having to move at 2 months post op!!!
Keep on advocating for yourself!
Carolyn
Selma is correct you should be having a 6 month post op MRI...they need to make sure that nothing has changed. My NS told me that I had to wait at least 6 months so they could be sure there was no re-blockage.
The after care of surgery is almost non-existent and you really have to rely on your GP to send you the right places. Thankfully, mine got a lot better about helping me once I got the dx.
I was started on the Gabapentin at 4 months post op too..for the same reasons you are. I was still having a lot of pain, in my head and body and I finally gave in and realized I would have to try something. So Gaba came first and the side effects were hard for me, it made me sleep but I felt like a zombie for half the day and I had kids to take care of. Then, it stopped even helping the pain (and in my case, my leg spasms) and the only solution was to take it in the day too which I can't do b/c of the drowsiness. So I switched to Lyrica, pretty much same results except the side effects were much better. Still, nothing was touching the midday pain ( couldn't take that in the day either). Just recently, my GP added Amitrityline to the mix (with the Lyrica) and a bit of the drowsiness first came back but has settled down. I noticed a bit more improvement in the morning but still...by the end of the day, the pain is back full force. I am starting to realize that maybe meds are not the only answer..
I have been and still am in the struggle you are...trying to figure out why there is so much not right after the surgery. My NS reminded me that there was not guarantee of anything getting better that the goal was to stop the progression (in my case, stop it b4 I couldn't walk at all). He also said that it can take up to 2 years to see the final results. I have to admit at 8 months I have started to see more improvements again. That said...you can't just sit by and wait either. It has been recommended that I start some rehab and that is what I am going to do.
I have had weeks of bad headaches too since surgery...but then it seems to ease up for awhile. I think you really have to look at what you are doing each day. When I went on holidays, my symptoms were much better b/c I was relaxing so much. If I get a headache, I know it's b/c I lifted something I shouldn't or did something..but in my life it just isn't possible not to.
So don't feel intimidated with these Dr's..go in there and tell them that you can't just sit by and suffer and decide that is "all there is". Tell them that you need to get your quality of life back to as close as you can to what it was b4. They can't fault you for that..no one deserves to live in constant pain. It sounds like you've had recent stress lately too which can't be helping...I'm so sorry about that...I couldn't imagine having to move at 2 months post op!!!
Keep on advocating for yourself!
Carolyn
COMMUNITY LEADER
Hi...I am sorry to say this, but it sounds like ur dr was not a chiari specialist...it can take up to 2 yrs to fully heal from this surgery....yes ur incision may have been healed on teh outside 80%...but, the nerves and inside is what really matters.
U should have had a 6 month post op with a MRI....
May I ask who did ur surgery? Do u have access to ur MRI's and reports prior to surgery?...if not request them and send them to a chiari specialist.
U r doing too much right after surgery...and need to let urself heal.
I am sooooo sorry , but the after care of chiari surgery is non exsitant...and we have to get this changed, but ur care is much less than many of us were able to get.
"selma"
U should have had a 6 month post op with a MRI....
May I ask who did ur surgery? Do u have access to ur MRI's and reports prior to surgery?...if not request them and send them to a chiari specialist.
U r doing too much right after surgery...and need to let urself heal.
I am sooooo sorry , but the after care of chiari surgery is non exsitant...and we have to get this changed, but ur care is much less than many of us were able to get.
"selma"
Since the surgery my family was hit with a string of bad events. My husband lost his job a week before the surgery and we were evicted from our home 2 months following the surgery. I had to help move our family to a 25 ft trailer and cleaning. I have been told by my NS that I was healed 80% at my 6 week appointment and that I did not need to come back that my primary doctor would be able to follow my case. My doctors are passing me around none explaining to me what I need to do or what Chiari is I have learned what I know from support groups and my own research online. I have not had any further MRIs since the surgery. Since I was told I am all but pretty much healed I have gone about my life as usual and I do not feel usual at all exhausted tired all the time and sore from head to toe. My neck aches bad and I have a pressure headache that will not go away. I am frustrated and confused I do not have any answers and I need to get an understanding of what I have and what I need to do. Heck I do not even know what is normal and what is not.
COMMUNITY LEADER
Hi ...I was on Gabapentin to help me sleep, the only thing it did was mess with my IBS issues...so I stopped taking it...many however do have positive results with it...I mention my issue bcuz the dr that RX'd it for me a sleep clinic dr said it would not affect my IBS and it has it listed as a side effect.
Surgery is not a way to stop pain, but a means to slow progression of the condition..and hopefully lessen pain.Also, u r only 4 months post op...u need to give urself time to heal as the healing process can take up to 2 yrs.
Have u had ur MRI post op yet?..usually u it is done at 6 months, but some drs do them sooner.Also have u been to ur NS for a 6 week post op visit?...have u informed him of how u feel?
The squishy noise does not sound normal to me...u need to be checked...call ur NS and let them know what is going on.
May I ask, what activites r u doing since u r post op?
"selma"
Surgery is not a way to stop pain, but a means to slow progression of the condition..and hopefully lessen pain.Also, u r only 4 months post op...u need to give urself time to heal as the healing process can take up to 2 yrs.
Have u had ur MRI post op yet?..usually u it is done at 6 months, but some drs do them sooner.Also have u been to ur NS for a 6 week post op visit?...have u informed him of how u feel?
The squishy noise does not sound normal to me...u need to be checked...call ur NS and let them know what is going on.
May I ask, what activites r u doing since u r post op?
"selma"
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