Post-surgery headaches

[Nikolatta]

Hi all,

First I want to thank everyone for their questions and responses, this forum has been extremely helpful to me post-diagnosis in May, 2015 as I tried to quickly understand this disorder in order to make an informed treatment decision. Even though I have not posted until now, I have been reading and extremely appreciative.

I chose to move forward with decompression surgery and duraplasty on Oct 26, 2015 after discovering that I had an 11mm herniation and a syrinx 6.4 mm deep, that crosses from C6 to T4. Interestingly, while I have had a number is random, intermittent symptoms pre-surgery, I had not experienced the typical Chiari headaches in over 6-9 months, and I believe they remitted due to weight loss (~25lbs) over the past year. Other symptoms I have experienced included chronic, intermittent fatigue and dizziness, chronic tinnitus (like the ocean) for approximately 6 months prior to surgery, numbness in my left leg for about 2 weeks that then remitted several months prior to surgery (this is what brought me to the doctor), intermittent facial flushing in the afternoon for 5-10 minutes, and occasional nausea while eating breakfast. In general, the surgery went smoothly. I was moved out of ICU after 1 day, I went home on the morning of the 3rd day, and I discontinued pain mess after a week. My stitches are out and my scar is healing well.
Ok, so here is my concern...even though I hadn't experienced Chiari headaches in months, they returned 1-week post surgery and they have been worsening all of this week. I know I am only 2-weeks post-op, but I am getting nervous that this surgery made things worse rather than better. I knew that was a possibility going into this, but I am really hoping that is not the case because my symptoms were really very mild pre-surgery. The only reason I went through with this is that darn syrinx! Just checking to see if anyone else had a similar experience and hopefully your headaches remitted over time

[lasel22]

My doctor orders a MRI at 6 months as long as everything is healing normally and their are no problems post op.

[selmaS]

  Hi...when I saw Tarlov cysts I wanted to check something and I was right they are associated with EDS....but you said that was ruled out....thing is they can cause HA's too....and a few other symptoms....

I also see they are different types of cyst....do you know what type it is?

[Nikolatta]

It's not set yet, and I am really curious about the position of my cerebellum and the impact of the surgery on my syrinx. I am hoping my dr will order one at 3 or 6 months post-op, but he says that he typically only orders them when clinically necessary. I am a psychologist, so I am used to repeated measurement points and it sounds like that is not his philosophy. I am curious if that is typical of neurosurgeons or if it is a personal philosophy of his.

[selmaS]

I am glad it is possibly connected with your monthly then a post op issue....keep a journal and it will be better to see just how your body reacts and when during the healing process.

The follow MRI will depend on each individual patient and Dr as they seem the need....mine was done at one yr post op...I did not have any issues post op  like some others have had which may have made their Dr do one sooner....and then some Drs do one immediately post op to check on a specific issue they found once inside....

When is yours set for?

[Nikolatta]

Side question: How soon after your surgery did you all have your next MRI?

[Nikolatta]

Thank you both, EDS and tethered cord were ruled out, although they did also find Tarlov cysts in my lower spinal scans. The doctor said they are unrelated, but I have my doubts about how unrelated they are. The headaches are all exertion-related, I have been lucky in that my neck muscles appear to be healing well. I also have been lucky this far with my dural patch healing, no fevers or detectable leakage thus far. I am feeling better today, which is nice. Back when I regularly experienced Chiari headaches, they were always worse right before my period, and this week was also the week prior to my period, so I wonder if that may be part of it. My fingers are crossed that they will remit with continued healing over the next month, but I am pretty nervous. Thanks so much for responding to my post!!!

[lasel22]

Are your headaches just in the back or all over? Do they only come with an increase in exertion?  I'm asking because if they are just in the back and are constant it might be from muscle tension.   I had surgery Oct. 13th and have still needed the valium from time to time to help loosen the muscles up.  I would start to feel tension in my shoulders and neck which would spread up into my head.  I find it would get worse if I did too much.

[selmaS]

  Hi Congratulations on becoming a Zipperhead !

There can be a number of reasons for post op headaches.....1- part of healing....the nerves get so compressed b4 surgery that some pain is no longer felt...but once released they can be over stimulated.

Another possibility is, it could be surgery related....a CSF leak or rejection of the patch which could include infection ....keep an eye on your temp, and keep a log of symptoms....call your Dr if your symptoms continue to concern you.

Was EDS and ALL related conditions ruled out b4 your surgery?