New Member- Post op questions- week 7

Symptoms and Treatments Surgery and Recovery
1

Hello all- Had decompression surgery with first vertebra notching back on May 25th. This was not my first surgery "attempt" to correct the head rush pains I had been suffering with for over 10 years that I can document. The first was just shy of 3 years ago having 2 disc fused together by an orthopedic. He was very unhappy with himself since it did not fix all my issues of the head rushes and weakness in my hands. Awesome doctor!! Little more background info, I have degenerative disk, at minimum 2 more bulged disk, and many bone spurs in my neck. basically it is a mess! Anyway, now week 7 post op I have questions about the recovery. My surgeon has NO follow up bed side manner and has already referred me back to my primary care doctor who has never dealt with anyone who had/ has Chiari and our type of surgery. Basically I feel like I am on my own now. Here are the questions:

-when should I follow up with an MRI? 6 months or 1 year?

-what type? CSF flow, MRI, MRA.....

-when will I get my full energy back? I go back to work on the 25th for 2 weeks of half days but am afraid that will not be enough. Any suggestions to push back the energy? I get tired after about 6 hours. ready for nap around 3pm everyday.

-is it normal to have a feeling of numbness about 2 inches above where the skull was removed?

-It also itches under the numbness so cant scratch it.....ugh!

-this area also feels like someone is pulling my hair. will this ever go away?

-right around where the skull was removed, feels bruised and once in a while feels like something tears then it gives me lots of pain down my neck and across the incision.

-is it true that I could have experienced a small stroke in about week 3 post op? one morning I got a MAJOR pain thru out my head. My husband said my eyes even looked "weird". I never really woke up that day. I made it from bed to couch to go back to sleep. seems like it took me a few days to get back to where I was in my recovery. Just scared this could happen again if I overdue it.

-one last question- for full recovery I understand about one year. what is considered full recovery?

-will I still get the "head rushes" once in a while when I bend over or strain to much?

-will there still be times of memory loss or in my case lack of being able to speak what my brain is tying to say. that is so frustrating. it has gotten much better but still haunts me once in while.

Any suggestions will be taken. To others out there nervous about the surgery, don't be it is worth it!!

2

You had a lot of questions. Hopefully you can find a medical person to help you out with the more concerning ones. And, I am sure that you have noted that recovery is an individual affair. Please know that people who make excellent recoveries tend to move on with their lives and do not hang around on Chiari discussion sites so that people's experiences tend to skew towards those with lingering difficulties.

I would like to speak on what I know about incision care - not if it gets infected or a leak develops, but how to maximize recovery of the incisional area sensory capabilities. Some people heal up with nary a concern whereas others need a helping hand. This is the same for a knee replacement incision or with the Chiari site incision. As a physical therapist, I have treated incisions on others and myself with great success. Just takes time and effort.

1. Numbness occurs as small, superficial sensory nerves can be severed. Frequent touch of all sorts can help with the numbness which can continue to improve for sometime afterwards. Sometime it remains.

2.Sensitivity to touch and pressure in the incisional area can also occur. Treatment for both is touch, touch and more touch.

Start with light, gentle touch for short times frequently during the day. Vary the type of touch, intensity and duration as tolerance improves. It sounds like the incision itself should be healed. A physical therapist familiar with post-surgery care of any sort should be able to guide you with progressions and any set backs as needed. Scar mobility can also be important to give flexibility to the scar and help with sensitivity. I had to spend quite a bit of effort in desensitizing the area which was worth it as now the area has no sensitivity concerns. Desensitizing treatment can be started even well-past the surgery date. It is never too late to give it a try! I just had a gal 11 years post brain surgery with incisional pain who is progressing nicely.

Rest and sleep are very important in recovery, I found that overdoing things was detrimental in getting better. Rest, pacing activities, and delegating proved invaluable.

Good luck in finding the answers to your questions.

3

ENJOY your holiday/ vacation. I'm sure you deserve it:)

You have given me more information than anyone so far. I will research the touch/ desensitizing therapy and start on it. Next time I see my primary doc I will see if she knows of anyone who can help me out. as for the rest and overdoing it, I had that figured out already. the more rest the better for the body to recover.

thank you for all your responses. at least I don't feel like something is wrong anymore and I know the issues are normal. If only the surgeon would have explained it to me, it would have been nice. He is a great surgeon but a HORRIBLE after surgey person. Sorry but on 2 week staple removal you don't want to answer questions and send me to primary doc, your not a doc I will recommend. this was not a normal/ routine surgery of any kind and does require after care.

being a therapist, do you have any sites I could research the desensitizing theory? again thank you!

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Hi! I have no helpful tips on your recovery process, as I have not yet had he decompression surgery. I wanted to ask you if you knew what caused the debilitating "headrushes". This is the most horrific pain I've ever felt and I've had 5 csections, gallbladder removal, and tonsillectomy! Some days are worse than others. Also, I know you just had the surgery, but have the headrushes subsided at all? That's my greatest hope for surgery...to get rid of those! I pray you have an uneventful and easy rest of your recovery

:) Katie

5

Hi Katie- sorry took so long to respond, I start back to work Monday and used yesterday as a vacation for myself. The cause for the headrushes is the cerebellum tonsils pinching your nerve canal in your spine. then the fluid flow is unable to reach your brain like it should. When there is downward pressure applied to the neck muscles being tense it really causes your fluid flow to be abstracted causing the headrushes. This is the only thing I can think of that causes them. I have not found any doctor who can give me any other cause. Since my surgery YES the rushes have about stopped. the only times I am getting them is ONCE in while when I bend over and pick something up over 20 pounds and stand up quickly. Once in awhile when I cough to hard. Basically they are bearable and NOT anything like they were. I was actually blacking out for seconds when the rushes happened and now I don't:)

Here is a suggestion: if your rushes are worse in the morning when you get up, wear a soft neck collar to sleep in. It helps to keep your neck inline so you are not pinching the spine. I learned this trick from my fusion surgery for 2 bulge/ blown disks.

If your not taking anything med wise try 800 mg of IB Prophine to help keep the inflammation down. Again my thoughts not doctor proven--- the tonsils can swell. since January this year I have had MULTIPLE MRI's and the tonsils were measured at multiple sizes: 22mm, 10mm, 9mm. they "shrank" after I stared the IB. I was up to taking 4 pills 4 times a day. Your doctor should be able to prescribe it so you don't need to take so many at one time. I was just using over the count IB because a nurse friend suggested it. I now take prescription DUEXIS 800-26.6 MG only once or twice per day, if at all. I stopped all meds on a regular basis after week 5 of surgery. Once in great while weeks 5-7 I would take Robaxtin 750mg for muscle spams. If your not on any muscle relaxer I would ask for them as well. the more you can keep the neck muscle from tensing up the less severe your headrushes hopefully will be. At least this worked for me.

If your question is "was the surgery worth it?" the answer is DEFINATLY!

Sounds like you have a few children:) After surgery keep in mind recovery is about 1 year from what I have read and researched. Make sure you will be able to STAY down for at least the first 4-6 weeks. I spent most of these weeks sleeping and napping. For a while I only had about 2-4 hours of awake time, then it was back to 2-3 hour nap. I am a true believer in rest after any surgery and not pushing yourself to allow your body to heal from the inside.

here is web site I found that is easy to read and understand and explains our condition. I had even printed out the PDF file and gave it friends to read who were interested. http://www.conquerchiari.org

Hope some of this helps you. Good luck and NO your not crazy or the only person who has the headrushes, Your not alone out there!!

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