I am newly diagnosed, but have been seeing specialists for years trying to figure out what all was going on with me. I have had horrible headaches, neck pains, facial pains, numbness and so on. Anyways, long story short syrinx were found in spine MRI that I had after I had a nerve conduction study and it showed troubles in neck and back, as well as hands and arms which is why I was having the test. After the finding of the syrinx my orthopedic doctor referred me to a neurosurgeon who ordered an MRI of the brain which showed the Chiari. So then he referred me to Vanderbilt for second opinion. Went to see specialist there last week and she said that surgery is needed soon or else the damage may be irreversible. I go back to see her this week with my husband, because I went alone last week since I figured she would say something like…we will do another scan in a few months and compare… This however was not the case and I was very overwhelmed. I am thankful for having doctors who care and want to treat, because I have read many posts from others in other groups that aren’t getting support from doctors. On the other hand I am very nervous about the thought of surgery. Any info or suggestions that you all can give is greatly appreciated!
Amanda, welcome :). My advice is to pace yourself and read everything you can get your hands on about chiari and the other diagnosis that can tag along with it. I’m glad that your doc seems clued in, but with your own research you will be just as clued in or more and you can make the best decisions for yourself. The syrinx makes your situation more serious, but you are not alone many people here are in the same situation.
There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.
Vitamin d deficiency
Magnesium deficiency
Vitamin Bs deficiencies
Syringomyelia /syrinx- cyst within the spinal cord as a result of CSF hypertension/blocked or partially blocked CSF flow.
Ehlers Danlos syndrome- google the Brighton Critetia and the Beighton Criteria. This can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required.
The me too a of surgery scared me too but the idea of no longer having these awful migraines and symptoms of an elderly person were exciting. I am 5 days post op and have been doing great. Its also the first medical thing I’ve had except MRIs. Remember, when things go well, fewer people look for support or blog. So don’t get overwhelmed by what seems like a flood of scary information!
Thanks for the positive response! So glad to hear that you are doing well!! When you are feeling up to it, please let me know what your surgery, pre and post op consisted of. I am concerned about all that leads up to, during and after surgery. What did they say your recovery period? How do you think you are doing compared to how they said you would?
Sorry for all of the questions, but I’m sure you know exactly what I am feeling and thinking now.
Becky-Kelley said:
The me too a of surgery scared me too but the idea of no longer having these awful migraines and symptoms of an elderly person were exciting. I am 5 days post op and have been doing great. Its also the first medical thing I've had except MRIs. Remember, when things go well, fewer people look for support or blog. So don't get overwhelmed by what seems like a flood of scary information!
I have downloaded and printed lots of information on it all. I am still so overwhelmed. I am making a list of things to ask my neurosurgeon tomorrow. If you can think of anything let me know so I can add to my list.
Thanks for all the info!!
jcdemar said:
Amanda, welcome :). My advice is to pace yourself and read everything you can get your hands on about chiari and the other diagnosis that can tag along with it. I'm glad that your doc seems clued in, but with your own research you will be just as clued in or more and you can make the best decisions for yourself. The syrinx makes your situation more serious, but you are not alone many people here are in the same situation.
There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.
Vitamin d deficiency
Magnesium deficiency
Vitamin Bs deficiencies
Syringomyelia /syrinx- cyst within the spinal cord as a result of CSF hypertension/blocked or partially blocked CSF flow.
Ehlers Danlos syndrome- google the Brighton Critetia and the Beighton Criteria. This can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required.
I am two years post op and I am very happy I had surgery and if I had to do it over again I definitely would! I was only in the hospital one night which is not typically so I'm not the best person to ask about that part of the surgery. From what I've read most people are in the hospital 3-5 days. Unless there are complications the hospital stay is usually focused on pain management. I have a good pain tolerance so I choose to be released the day after and I just stayed in a hotel near the doctor for a few nights! After surgery I was out of work for 8 weeks. The first 6 weeks there was no driving, no bending over, no housework, and no lifting over 5 lbs. I had neck exercises I was to do several times a day and walking was encouraged.
Well I am scheduled for surgery the first of December. I am not so sure how my pain tolerance levels will be with this. I am hoping I will do well though. I am having the decompression, but they are also opening up the dura to examine the brain and spinal cord and possibly adding tissue to create more space for the flow of CSF. I am just hoping and praying for no leaks or troubles with anything. I of course forgot to ask about driving after surgery and whether there would be stitches or staples in back of head.
Anything else I need to know or questions I can ask them at my pre op appointments.
Thanks for your response and info!!
Anglyn said:
I am two years post op and I am very happy I had surgery and if I had to do it over again I definitely would! I was only in the hospital one night which is not typically so I'm not the best person to ask about that part of the surgery. From what I've read most people are in the hospital 3-5 days. Unless there are complications the hospital stay is usually focused on pain management. I have a good pain tolerance so I choose to be released the day after and I just stayed in a hotel near the doctor for a few nights! After surgery I was out of work for 8 weeks. The first 6 weeks there was no driving, no bending over, no housework, and no lifting over 5 lbs. I had neck exercises I was to do several times a day and walking was encouraged.
I had the same done and also a piece of vertebrae removed. With regular pain meds at home (percocet and valium) the pain level is about a 1 or 2. At the hospital (there for 2 days) it stayed about 3. I had stitches to be removed after 14 days, and I’m not allowed to drive for at least 4 weeks
You we should ask about hair washing, bending like household chores, who to call if you get nausea or cough because that can be troublesome. Also who to remove the stitches, sometimes your local PCP can if they are closer. Alao if you love in a rural area with crazy rough roads, I would ask for a soft collar
I wish you the best! I’m 6 days post op and I feel great!
I had the same procedure w/ the dura and then the C1 laminectomy. I was released with percocet, valium, and robaxin. I didn't have stitches or staples. I had the surgical adhesive.
I had the same done and also a piece of vertebrae removed. With regular pain meds at home (percocet and valium) the pain level is about a 1 or 2. At the hospital (there for 2 days) it stayed about 3. I had stitches to be removed after 14 days, and I'm not allowed to drive for at least 4 weeks
You we should ask about hair washing, bending like household chores, who to call if you get nausea or cough because that can be troublesome. Also who to remove the stitches, sometimes your local PCP can if they are closer. Alao if you love in a rural area with crazy rough roads, I would ask for a soft collar
I wish you the best! I'm 6 days post op and I feel great!
I was worried about staples or stitches back there and how that would feel as you lay down on it. What is the surgical adhesive like?
Anglyn said:
I had the same procedure w/ the dura and then the C1 laminectomy. I was released with percocet, valium, and robaxin. I didn’t have stitches or staples. I had the surgical adhesive.
Honestly I had an allergic reaction to the glue but for most people I would say it’s not bad. You can wash your hair right away with it and it doesn’t need to be covered with a bandage! I’m allergic to bandages so we were looking for a way to avoid that and it seemed like the surgical adhesive would be a good option but I was allergic to that too!!! lol. I just had to rotate Benadryl in with my other meds and it was under control. Otherwise no complaints!
Laying on your incision can be a bit weird. One of those u shaped travel pillows can help since it leaves the actually area that was cut alone but supports around it.
Thanks for the info and advice! I sometimes have reactions to things as well, I always have Benadryl on hand at home, but I’m sure they will have some in the hospital if needed as well.
What all did you take to hospital with you?
Other than having my babies I have never packed for a hospital stay.
This may seem like a silly question, but what do I need to pack to take to hospital for my surgery?
What kind of shirts or tops am I going to want to wear afterwards? Like can I pull things over my head or do I need button or zipper type shirts?