Dear sir,
My daughter Aneesha underwent the decompression and duroplast surgery on the 9th of July 20014. The doctor kept her in the hospital for 9 days…There was no CSF leakage or other scary after effects.Though she did have very high blood pressure and a lot of headaches, for which pain management was provided.Since the surgery she has been complaining of difficulty in swallowing…she was shown to an Ent and the doc says that there is no infection in the throat but the cause of this swallowing is due to the swelling in the cord…After her return she was holding hands and walking to the washroom too…but since the last 4 days she has suddenly become highly fatigued ,having difficulty in swallowing, very irritable and keeps stooping in front as if bending right in front …she says she cannot sit as she would before. And is very upset …she says she has some numbness in her fingers and a liil in the right palm toro…she is very weak in lethargic…
We kept
Her on saline and dextrose drips for two days and even injected some vitamins to make her stronger…though more alert she is really down and constipated…
her surgeon today took her Mri…of the cervical spine and said that the surgery went good and that the syrinx had already started to dissolve,but the issue with her back ,not being able to sit straight still stays on…she has an 80 degree scoliosis curve and this is also adding to her misery…the doc says that maybe the odontoid peg is pinching the brain and causing this as he has created a lot of space for the syrinx to dissipate…I am really worried…Please do let me know if this is a common happening after the duroplasty and what do you think is causing this change in her? She was perfectly fine except for the pain and swallowing even ten days after surgery…Your valued advice will be greatly appreciated…the next appointment is on the 5th do August.The doc also advised her to try and wear a collar to keep the pressure of…She is eating and drinking better now but refuses to stand up as she says she is too weak and feels very tired when she sits up…she says she having trouble focussing on watching the television too…Is extremely agitated …The doc has stopped all the meds and said if need be she should be injected with the pain killers that are either Daclaron or Kinz.
Now I am concerned as to maybe this is the cause of her feeling so low…she was on too many meds in d hospital…like…Brufen ,neubrol forte,maxilon,risek etc…tonight I plan to give her Valium for her to help her sleep…is that o.k or will it be harmful for her as she is only 16?
Waiting anxiously to hear from you or anyone familiar with all this happening after duroplasty…
Regards,
Ambareen
Ambardeen, I’m sorry your daughter is having trouble. Has her basilar invagination been addressed by the surgeon? Many people with basilar invagination who get a decompression without having the BI fixed (corrected odontoid and or fusion of the skull to the neck)have continuing symptoms and even worsening symptoms (cervico medullary syndrome). How is her breathing, especially when she is asleep? She needs to be tested for sleep apnea right away. I’m glad she is wearing the cervical collar, but hope her doctor is watching her very closely and is able to take the next step if necessary. I would be adamantly questioning until you get to the bottom of her condition or you seek another opinion from a surgeon with BI experience.
Can’t say about the medication, you should ask her surgeon about this. Please stay in touch so we know how she is doing.
Jenn
Dear Jenn,
Thankyou so much for your quick response.yes she is having some breathing issues when she sleeps…it seems as if she stops breathing for 15 seconds and then starts breathing again…She neverhadthis issue before the surgery…she has cervical medulary decompression and duroplasty…this is the procedure mentioned in the files…Is she supposed to even wear the collars even when she is laying down? We are trying to get in touch with her surgeon to discuss what you have suggested…I am really getting unnerved after reading all this information …should we give her oxygen? The doc wasn’t keen on doing the occipital fusion as he said that her c1 and c2 were too thin and d screws wouldn’t hold as he had shaved them off when he did the decompression without the duroplasty last year…he said he it would have to be fused from op? c3 to c4 and didn’t seem keen on it so we opted out of it , but he never informed us that the basilar invagination would play havoc if this procedure was ignored…we were only concentrating on the syrinx being dissolved…PLEASE keep in touch with me…these symptoms didn’t occur until two weeks after the surgery…how come…shouldn’t they have started post ? She walking and fine except for the pain in the head?
Waiting to hear more from your end ,
Reg rads,
Ambaree
Ambaree, the cervical collar is to keep her head from bending forward and backward- this prevents extreme stretching and bending/kinking of her spinal cord and medulla,so unless the surgeon said otherwise she should wear it all of the time including during sleeping. It sounds like she may need a C-pap for sleep apnea - her breathing would be the highest priority and should be addressed right away. I don’t know if she needs oxygen that’s a question for the hospital. If she does have cervical medullary syndrome from the cranio cervical instability and BI, sometimes it takes days, weeks or months to develop. I have it, but mine didn’t begin until 4 months post op.
Is there another option for you to consult a different surgeon who has expertise with fusions issue?
Hi…
Aneesha my daughter is Complaining of not being able to focus properly…though she is eTing and drinking and is alert…sh e complains of numbness I. Her hands and feet and says that she cNt focus properly as if an object overshadows another…she was fine until a week back when her blood pressure suddenly dropped and she was even unable to sit…her surgery took place on the 9th of this month…she was fine after that…but is very agitated and upset now as she can’t even watch T.v…though she can text on her phone and can even see a mosquito flying…we are really concerned at this new problem cropping up…for at least 15 days she was on heavyweight meds …like 3 maxilons daily …3 ibrufen tabs…3 tramadols…3 nude roll forte…and 2 risks…besides these she was getting tramadol and Kinz Intravenously…now she is given daclaron injection only once for the pain management…should I give her Valium 5 to help her sleep in the night instead of daclaron I.v???
please do let me know ifNyone else has had these symptoms after duroplasty and how can they go away???
the vision is really bothering her…waiting to hear from anyone please…
regards
Ambareen
Ambareen, we will try to help as much as possible, but one thing we cannot do is recommend changing prescription medications or adding prescription medications. The medication question should only be handled by a physician.
What does her surgeon think about all of her new symptoms since her surgery? Some people do get numbness to hands and feet, and sometimes it goes away as things heal, but not sure if this could be related to her BI?
Jenn