I had decompression surgery Sept. 22nd of this past year. The pressure headache is gone, the swallowing problem is gone…but the memory and concentration issues, tingling and numbness, fatigue, depression and anxiety…along with the pain in my neck and shoulder are still an issue every day!
My NS told me he fixed the Chiari and sent me to another NL ( because I hated the first one I went to). She told me that the numbness and tingling in my fingers and toes, the memory loss and the fatigue must be due to Lupus. (I’ve had discoid lupus since 04). My eye doc and my ear doc told me that the broken blood vessels in my eye and ear are probably from Lupus. Go to the rheumatologist today…he says no! these symptoms are not from that, even though my blood work showed a high ANA.
So now he says I have to find a NS that specializes in Chiari malformation and find out how long is appropriate to feel this way. I’m going to have to look for someone else now! Any suggestions? I am in southern NJ so NJ, Pennsylvania or NY would work for me.
Well, decompression surgery is a treatment, not a cure. For most
of us surgery just helps stop the progression it doesnt always
"cure" your symptoms you had before surgery. I’m 8 years post
op and still have 90% of my symptoms. Continue seeing your
NL for issues and maybe find a Physiatrist (pain mgmt doc).
Good luck! Monique
I am almost seven years post decompression & I have all your symptoms plus the pressure headaches and more. I totally agree with Monique. The decompression surgery is just a treatment to stop the progress of your cerebullar tonsils from falling into your spinal cord and cutting off your spinal fluid to your brain. Most people have major post surgical symptoms. I hope yours improve. We have a list of NS on the top of the page under the Doctors Header. If you need additional names let me know. I know there is a Chiari Institute in New York and there is always John Hopkins in Baltimore, Md.
Dr. Ray Secola is in the Pittsburgh metro area. He was partners with my NS that recently retired. Ray is maybe 40 years old & very skilled and personable. If you are interested in him & can't locate a # for him.....let me know and I will get you one. If my daughter ever needed a NS I would call Ray. That is how much I think of him.
TracyZ said:
Hi Monique,
I am almost seven years post decompression & I have all your symptoms plus the pressure headaches and more. I totally agree with Monique. The decompression surgery is just a treatment to stop the progress of your cerebullar tonsils from falling into your spinal cord and cutting off your spinal fluid to your brain. Most people have major post surgical symptoms. I hope yours improve. We have a list of NS on the top of the page under the Doctors Header. If you need additional names let me know. I know there is a Chiari Institute in New York and there is always John Hopkins in Baltimore, Md.
Tracy, is the doctor you spoke of associated with The University of Pittsburg? I was told they are wonderful there, but it is a 5 hour drive for me. At this point, I would drive it.
TracyZ said:
Dr. Ray Secola is in the Pittsburgh metro area. He was partners with my NS that recently retired. Ray is maybe 40 years old & very skilled and personable. If you are interested in him & can't locate a # for him.....let me know and I will get you one. If my daughter ever needed a NS I would call Ray. That is how much I think of him.
TracyZ said:
Hi Monique,
I am almost seven years post decompression & I have all your symptoms plus the pressure headaches and more. I totally agree with Monique. The decompression surgery is just a treatment to stop the progress of your cerebullar tonsils from falling into your spinal cord and cutting off your spinal fluid to your brain. Most people have major post surgical symptoms. I hope yours improve. We have a list of NS on the top of the page under the Doctors Header. If you need additional names let me know. I know there is a Chiari Institute in New York and there is always John Hopkins in Baltimore, Md.
Hey You..glad you posted...though sad you are still having issues..I too, see a Physiatrist and totally agree with Monchio-Monique..Suregery is not a cure all.
Sept may seem like a life time ago....but for some of us ...to feel all positive results from the surgery can take well over a yr!
I have no experience with Lupus..sorry.
Have you had a follow up MRI?????
Tracy gave input as to go to DOCOTRS..Thanks Tracy!!!
Let us know..we care!!!!
mochico-Monique said:
Well, decompression surgery is a treatment, not a cure. For most of us surgery just helps stop the progression it doesnt always "cure" your symptoms you had before surgery. I'm 8 years post op and still have 90% of my symptoms. Continue seeing your NL for issues and maybe find a Physiatrist (pain mgmt doc). Good luck! Monique
Yes…follow up MRI and a follow up to the follow up because I had an episode of Bells Palsey 2 weeks after the first post op MRI.
I guess I knew that it wasn’t a cure. Either I chose not to listen or I had forgotten ( my memory is terrible), but my hubby said that the NS told us that before hand. He also suggested that I go on here because he was reading the post pre surgery and he remembered that everyone had said that it takes a long time to recover.
You r right about the time frame, it seems so long ago, yet also like yesterday.
I am on a waiting list to see a physiatrist, apparently the practice that 2 of my docs referred me to is the same one that everyone uses. Luckily (? Maybe) disability is sending me to one next week as I am already on meds for anxiety and depression( I wonder why). But my family doc prescribed them because at the time I REFUSED to see a “shrink”.
I have attempted to find a “Chiari specialist” but the closest ones are at least 4 hours away, so I am going to back burner it and see how I make out with the change in Lupus meds, and with time.I see my NS next week, but his last answer was that my brain was back where it belonged and something else is causing he problems. I just want answers, which my hubby and my bestie both told me " may not happen".
So with that said I’m going to turn up the volume on God, and try to turn it over to him. I am trying to learn patience, but am not succeeding.
On the plus side I am keeping myself busy with an 18 week old puppy which I am training to be my service dog. She’ll do hearing and emotional support…if I can’t be my old normal, then I’ve decided to ind a new normal to keep me busy!
Sslakemom2,
I totally understand where you’re coming from with the confusion of having an auto-immune disease and Chiari (I have Sjogren’s Syndrome, Celiac Disease, and Cicatricial Pemphigoid). I just found out I have Celiac in July 2011, but the other two were diagnosed one year before my Chiari was found. The majority of time my symptoms all overlap each other so I have no clue what is what!! It used to really frustrate me, but 8 years later I just do the best I can. I am lucky that all my docs really communicate with each other.
Try to be patient, because you may never really have a clear cut answer. There isn’t an answer to your “how long is it appropriate to feel this way”. Everyone is different, especially when you have other medical issues. Give yourself some time…you are still so early on in your recovery.
I’m in Colorado so I can’t help you with a referral, but keep us up to date with how it’s going!!
Monique