Daniel was doing so well, we had his 4 weeks post op last Wednesday and all looked good. Then Friday he had throbbing head pain every time he stood. This lasted all day and he was better by Friday evening. I called the surgeon and we decided to wait and watch. I also decided to start recording his BP since off and on it has been high when he was in the hospital and in post op settings. About an hour ago I took it lying down and it was 120/70 pulse was 72 I had him stand up and took it right away and it jumped to 135/90 and pulse went to 137. Definitely some kind of othorstatic hypertension going on or so it seems to me. Has anyone else exp. this??? Daniel is 12 years old and 4 weeks and 3 days post decompression surgery. I will be calling the surgeon again on Monday morning. Oh, he has not exp. the throbbing like he had on Friday, but whenever he is up and around he has a frontal headache.
I agree with you guys, orthostatic dysautonomia sounds like the culprit. I’m sorry your son is feeling so bad. I hope the doctor can come up with plan for this soon.
Pain increases BP & HR. I was diagnosed with POTS in December. Keep him hydrated & increase his sodium intake and see if that helps. Have him sit for a while before he stands. Did he have any Intracranial Hypertension prior to surgery or has he had a CINE MRI post surgically? Just to ensure his surgery was successful and his CSF flow was restored?
These are some great links:
Hi Tracy, He had no problems prior to surgery. no he has not had a CINE MRI as of yet. He is scheduled to have on the last week in November, that would be almost 12 weeks post op. Thank you for the links, I will check them out.
Be careful with sodium…that will increase his bp!
I am so sorry to hear he is having problems did they check him for EDS a condition that is saying a lot in combo with Chiari. there is a condition known as CCI craniocervical instability that can cause all the things that you mentioned above in your post. If the neurosurgeon is not well versed and Chiari and all the related conditions and issues that it can be the end he will not look for it or know to look for it or even understand what he’s looking at what he does see it. this is one of the number one reason for surgery failure or an unsuccessful surgery if not the top reason do to surgeons inexperience in all these multi-faceted conditions that can be seen with Chiari. CCI craniocervical instability can mimic symptoms of Chiari and POTS postural orthostatic tachycardia syndrome. if decompression is performed and a person has EDS with CCI involvement the surgery most of the time will cause the CCI to become even more and stable causing new or worsened symptoms.
Simple dehydration can also cause spikes in heart rate. Was he ever checked for POTS? My bp is usually all over the place. High sodium intake and over hydration can really spike bp as well. I wish you both luck…
Yes our son had this about 4 weeks post op could not stand up straight! Called a spinal headache and it’s due to a leak of the csf. If it’s moist at all at incision you need to take him in, otherwise it’s contained inside but still stinks!! Many doctors go right for the steroids but our ns was very wait and see, drink caffeine and plenty of water and rest.
Hello. Im adult 1 yr after decomp. The issues sound about comparable to mine. It took a long time for me to heal, i still have throbing. I still cant drive, cause my eyes dont reflex focus very fast. I have nerve problems. I get cold easy and it shocks pain thru my whole body. Very forgetful too. I have been treated with acupuncture since april, from an OMD its costly but helps with a large amount of my sufferage. And ive improved well with using it