Hello, my wife is 28 yrs old and was diagnosed with Chiari Malformation with a syrinx a few months ago after having pain in the back of her head and neck, especially after exertion. She had the decompression surgery, (including widening of foramen magnum, duraplasty- with her own tissue, and removal of a portion of C1), about 9 days ago. She seemed to do well at first and even walked out of the hospital a couple days later. However, at about day 3 post-op, she developed escruciating pain in her upper back, between her shoulder blades, especially when standing upright. It has not gotton any better, worse if anything, since then. Her only position in which she can find any relief is lying flat. If she gets up to go the bathroom or walk to another room, the pain quickly worsens and becomes severe. We saw her surgeon 2 days ago, and an MRI was done. He said there is a small CSF leak, and he also noticed the syrinx is bigger now than it was about 1-2 months ago, the last (first) time it was scanned. She has been instucted to lay flat. My question is: Do you know what is causing this upper back pain? Could a small CSF leak cause severe upper back pain? Could the syrinx be causing this pain, and if so will the pain go away if the syrinx gets smaller or goes away? Should we be moving towards draining the syrinx? Please help me get my wife back to the active life she enjoyed prior to surgery. I should also mention my wife is 16 weeks pregnant. Thank you very much!
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Thank you for your recent inquiry concerning your wife.
I will try to assist to you the best of my abilities, but I must preface my comments by saying that I am a Neurologist and not a Neurosurgeon by training. Your wife's issues are definitely neurosurgically related, so I have performed my own research in addition to curbsiding my neurosurgery colleagues to provide more insight into answering your questions.
I am sure that you already know quite a bit about Chiari malformations, but please allow me to offer a brief educational introduction before formally answering your questions.
Chiari type 1 malformations (CM1) occur in the region where the brain and the spinal cord join. In this disorder, the portions of the brain called the cerebellum and/or brainstem lie lower than usual and may protrude into the spinal canal. This causes a pressure phenomenon, leading to the following symptoms: headaches, especially at the base of the skull, dizziness, double vision, weakness in the arms, and/or difficulty walking.
The association between Chiari malformations and syringomyelia is well documented.
Syringomyelia is a disorder in which cerebrospinal fluid enters the spinal cord, forming a cavity known as a syrinx. The danger with a syrinx is that is has potential to expand and elongate over time, leading to destruction of the center of the spinal cord.
The treatment for both the Chiari malformation and the syrinx is decompressive surgery. The type of surgery is tailored to the extent of the disease. The surgery you described above (widening of foramen magnum, duraplasty, and removal of a portion of C1) is commonly performed.
Before I answer your question, I must advise you that my comments are based on the history and symptoms you provided above. I am extremely limited in the fact that I am unable to perform a full neurological examination of your wife, nor am I able to review the pertinent neuroimaging on my own.
My comments should not serve as a substitute for formal medical evaluation by a certified and trained physician.
You stated that your wife is experiencing "excruciating pain in her upper back, between her shoulder blades" and your concern is that this symptoms is related to the syrinx.
In my opinion, there are two potential causes for her symptoms:
1) Post-operative muscle pain/spasms: This is primarily due to mobilization of the nearby muscles during surgery. We often see this type of pain in patients who undergo decompressive surgery for Chiari malformations, as well as patients undergoing spine surgery (in nearby locations for other reasons.) The fact that her symptoms began 3 days after her surgery is not atypical.
At our institution, we typically prescribe muscle relaxants like Flexeril (generic name Cyclobenzaprine) or a benzodiazepine like Valium (generic name Diazepam) to relieve this type of pain. Please be aware that medications of this nature have side effects, namely sedation and impairment of cognition. However if taken properly and as prescribed, patients rarely find these side effects troublesome.
2) Pain related to the syrinx: This is another possibility, objectively supported by the findings of the her last MRI (increasing size of her syrinx.) What argues against this however is the fact that she seems to have isolated intrascapular pain. As mentioned above, a syrinx usually causes a combination of the following symptoms: muscle weakness and spasticity, motor impairment, and sensory loss. Your wife does not appear to have any of the other stated symptoms. Thus, my suspicion for her symptoms being solely related to the syrinx is extremely low.
I am comforted in knowing that you seemed to have established a good relationship with her neurosurgeon and have been diligent about her follow-up visits.
I advise you to see him routinely and be followed clinically and radiologically with serial MRI's.
If her pain is still an issue currently, perhaps you can discuss the use of muscle relaxants with your neurosurgeon.
If her symptoms persist or progress, please do not hesitate to seek urgent evaluation. If the progression is rapid, seek help at the nearest emergency department.
Given that your wife is status post recent surgery and pregant, makes this critical.
Thank you for your inquiry,
Best of luck and congratulations on the new baby,
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