Chiari Online Support Group

Recurrence of symptoms post-surgery


#1

I am 9 months post-decompression. My symptoms started to slowly return after 10 days. My symptoms are now worse than before surgery. My NS said that the symptoms cannot be caused by chairi because my chiari was cured since the CSF is now normal. He said the symptoms cannot be coming from the two syrinx in my back because they are too small (one is pre-surgery/unchanged and one is post-surgery). Some of the major symptoms are leg and back pain ( I am sometimes unable to walk). He said those might be from a small disc bulge in my thoracic spine but I have had the leg and back pain since I was about 8 years old. It resolved post-surgery and then came back. The neurologist I saw prior to the NS said there was nothing in my back causing my leg pain and that it all came from the chiari. Does the NS opinion sound odd? He is a chiari surgeon in a chiari clinic and has an excellent reputation for his work (he does more than chiari). He wants me to do cine MRI to check flow again (third post-surgery). If that is negative he wants testing on my bulging disc and if that is negative he said he will consider that it is permanent neurological damage from years of living with undiagnosed chiari. He said his other chiari patients’ symptoms have resolved with surgery. From what I have read in all the chiari communities, recurrence and residuals happen. He did not seem to readily agree until I reminded him that he told me pre-op that he may not be able to stop the progression given the number of years I had symptoms. I’m so confused.


#2

May I ask who was your NS?


#3

I’ll just say he works at the Mayfield Chiari Center. :wink:


#4

Karla,so sorry this has happened again I can’t imagine your pain.I am also 9 months out and so far,I am a lot better than before.There are ladies on this site that might help you research some things that might be happening to you there seems to be other conditions that are common to chiari patients.You might have already looked into these conditions,if not,go to the discussions page and ask about these disorders, POTs,dysautonia? Not sure my spelling is right.I am also having some old symptoms that have been a part of my problems before my surgery,now these have continued and has gotten worse,that makes me think that some other issue needs to be addressed .I will be going back to my NS in Sept.so maybe he’ll have some answers,not sure but I feel there’s something that is another condition.It does seem we take a step forward and two steps back in your case it’s walking backwards,this is devastating,hope the people here can help you look into what might be going on,Beeba,Abby,Tracy,these are some of the names of ladies who are knowledgeable.I sure wish you the best.Lynn


#5

Thank you so much!


#6

Hi Karla ,

I will be a year post op on the 18th of Aug. and I am having more problems again also..

Pressure headaches, Pain in my neck , back of my head. eyesight get's fuzzy, I have bumps that swell up on the back of my head . It wakes me up in the middle of the night from laying on it to long, even hurts just to touch or run brush over it..

Sometimes I have trouble with my speech, I go to type or write and for the life of me can't remember the word, I even forgot how o spell my full name one day.. Also pain has increased in other areas , I will have times when my heart beats so crazy and works so hard I'll break into a sweat but skin is Ice cold? That is just to list a few.

My NS has only done 1 Cine on me that was 3 Mo Post op. and I really haven't been checked since then ?

I live in a small town and the Dr's here don't get it and it' 4 hrs to the NS and I am a single Mom , when I am feeling so bad it;s hard to drive myself down there. I wish the Dr here would call my Surgeon to see what they could figure out from here! They treated me so poorly here before my diagnosis and just kept sending me home and blaming on pain meds and Chronic pain..

I really don't want to have to go through another procedure but pain is getting so bad again I am scared not t go to the DR. I hope this doesn't sound like I'm rambling, have an awful headache and making vision weird too, sorry if it isn't written very well.

Debbie


#7

Sorry you are having issues. :( Have you been checked for POTS and EDS(Ehlers Danlos Syndrome)? I know people with EDS tend to have poorer outcomes post-op and it seems that a pretty high percentage of people with Chiari also have this. It's something to look into at least. I would go ahead and get another CINE and let them explore the disc bulge while also asking about POTS and EDS. I hope you get relief soon!

My NS (also at Mayfield) told me that issues in the extremities would be the last to heal IF they healed at all because those are usually an effect of neurological damage from years of compression on the spinal cord and brain. The way he explained it was that I would see the most relief from things that were caused by direct compression, like headaches and dizziness.


#8

I agree get checked for EDS and POTS. I had my decompression done last year in June and I am certain it failed :(. I have gone downhill in 6 months . I was just diagnosed with EDS and Dysautonomia. The Doctor wants me to get a test to check what kind of POTS I have. I may also have a Tehered Cord which probably Occult because of the EDS.


#9

Mayfield surgeon for me too, who doesn't want to acknowledge that issues are still there after surgery.. even with positive test of an infection after surgery. I hope you find answers... I have a follow up there on the 19th and if he is unwilling/uncooperative as usual I will be switching to another surgeon there. Mayfield is great, the surgeons are great... not speaking poorly of them, however I do believe after a lot of research and talking to other Chiari patients that see the same person... if it isn't "textbook" it can't happen.

Good luck! We all know how much it stinks and how frustrating it can be.


#10

You all have been wonderful. I only wantd to make sure that I wasn't being unrealistic and you've given me a lot of information. For the record, I tested negative for tethered cord. Also, while most chiarians have headaches before surgery my primary symptom was leg weakness. I think I remember having low grade headaches more often over the 2-3 years before the surgery but not knowing the significance I brushed it off. I started having more frequent headaches 4 months ago, which are now every day, all the time. Doc put me on Fioricet which hasn't seemed to help (two days so probably pre-mature). I will ask for the additional testing suggested. Thanks again!


#11

OH My Gosh Abbey,

This sounds like all that I am going through! EDS and Pot's..

I was wondering and it might already say just fairly new to using tool's on this site... Can I email the post's I just read explain symptom's and disease ? My Surgeon is 4 hrs away and Dr's where I live ( small town ) just label me a Chronic pain and brush me off.. If I had this info to bring in and they could communicate with Surgeon( until I can drive down ) maybe together they could at least start looking into these and also get me feeling some what better!!

SORRY, not trying to take away from Karla question's..

deb



Abby said:

Signs and symptoms TETHERED CORD

In children, symptoms may include:

  • Lesions, hairy patches, dimples, or fatty tumours on the lower back
  • Foot and spinal deformities
  • Weakness in the legs
  • Low back pain
  • Scoliosis
  • Urinary irregularities (incontinence or retention)

Tethered spinal cord syndrome may go undiagnosed until adulthood, when sensory, motor, bowel, and bladder control issues emerge. This delayed presentation of symptoms relates to the degree of strain on the spinal cord over time. Tethered spinal cord syndrome appears to result from improper growth of the neural tube during fetal development, and is closely linked to spina bifida.

Tethering may also develop after spinal cord injury. Scar tissue can block the flow of fluids around the spinal cord. Fluid pressure may cause cysts to form in the spinal cord, a condition calledsyringomyelia. This can lead to additional loss of movement or feeling, or the onset of pain or autonomic nervous system symptoms.

In adults, onset of symptoms typically include:

  • Severe pain (in the lower back and radiating into the legs, groin, and perineum)
  • Bilateral muscle weakness and numbness
  • Loss of feeling and movement in lower extremities
  • Urinary irregularities (incontinence or retention)
  • Bowel control issues

Neurological symptoms can include a mixed picture of upper and lower motor neuron findings, such as amyotrophy, hyperreflexia, and pathologic plantar response, occurring in the same limb. Profound sensory changes, such as loss of pain, temperature, and proprioceptive sensations, are common. Last, progressive symptoms of a neuropathic bladder are noted on over 70% of adult patients, versus only 20% to 30% of children. These symptoms include urinary frequency and urgency, feeling of incomplete voiding, poor voluntary control, and urge and stress incontinence. Chronic recurrent infections are common and occasionally lead to nephrolithiasis (kidney stones), renal failure, or renal transplantation. Female patients also give a history of ineffective labor andpostpartum rectal prolapse, presumably due to an atonic pelvic floor.

DYSAUTONOMIA

The symptoms of dysautonomia are numerous and vary widely from person to person. Since dysautonomia is a full-body condition, a large number of symptoms may be present that can greatly alter a person's quality of life. Each patient with dysautonomia is different—some are affected only mildly, while others are left completely bed-ridden and disabled.

The primary symptoms present in patients with dysautonomia are:

Other symptoms frequently associated with dysautonomia include: Gastroparesis (delayed gastric emptying), headaches, pallor, malaise, facial flushing, salt cravings, mydriasis (abnormaldilation of the pupils), constipation, diarrhea, nausea, acid reflux, visual disturbances, orthostatic hypotension, numbness, nerve pain, trouble breathing, chest pains, in some cases loss of consciousness and seizures.[1] Dysautonomia can also present with orthostatic hypertension.[2] A full list of symptoms may be found at the Dysautonomia Information Network.[3]

Dysautonomia

From Wikipedia, the free encyclopedia
Dysautonomia
Classification and external resources
ICD-10 G90
ICD-9 337.9
MeSH D001342

Dysautonomia (or autonomic dysfunction) is any disease or malfunction of the autonomic nervous system (ANS). The autonomic nervous system controls a number of functions in the body, such as heart rate, blood pressure, digestive tract peristalsis, and sweating, amongst others. Dysfunction of the ANS can involve any of these functions.

A number of conditions are forms of dysautonomia: postural orthostatic tachycardia syndrome (POTS), inappropriate sinus tachycardia (IST),vasovagal syncope, pure autonomic failure, neurocardiogenic syncope (NCS), neurally mediated hypotension (NMH), orthostatic hypotension,orthostatic hypertension, autonomic instability, and a number of lesser-known disorders such as cerebral salt-wasting syndrome. Dysautonomia may occur as the result of other diseases, such as diabetes mellitus, multiple system atrophy (Shy-Drager syndrome), Guillain-Barré syndrome, andEhlers-Danlos syndrome, along with a number of other conditions that may affect the nervous system.

EHLERS DANLOS

Signs and symptoms[edit source | editbeta]

Individual with EDS displaying hypermobile joints
Individual with EDS displaying skin hyperelasticity

Signs vary widely based on which type of EDS the patient has. In each case, however, the signs are ultimately due to faulty or reduced amounts of collagen. EDS typically affects the joints, skin, and blood vessels. Following is a list of major signs and symptoms.

Musculoskeletal:

Skin:

  • Stretchy skin with a velvety texture
  • Fragile skin that tears easily[8]
  • Easy bruising, which can be severe
  • Abnormal wound healing and scar formation, leading to widened atrophic scars
  • Redundant skin folds[8]
  • Molluscoid pseudotumors,[14] especially on pressure points
  • Subcutaneous spheroids[14]
  • Fatty growths on forearms or shins
  • Angioplasia

Cardiovascular:

Other manifestations or complications:

Because it is often undiagnosed or misdiagnosed in childhood, some instances of Ehlers–Danlos syndrome have been mischaracterized as child abuse.[22] The pain associated with this condition is a serious complication.

I totally agree, get those tests and evaluations to determine if you might have EDS, Dysautonomia and Tethered Cord.


#12

Thank you so much Emmaline,

I guess I am going to have to make the trip back to my Surgeon. EDS really sounds like the symptom's I am having ..

the Problem where I live there is only 1 Neurologist and doesn't know much at all about Chiari's , she mostly focuses on MS.. I told my regular DR ( who came here from Mayo ) about it but he ran a few blood tests and said Normal.. and sent me out the door no follow up or calling Surgeon to see what else he might do!!

I was having a really bad problem with my heart a few yrs ago, they made me wear a Halter Monitor for 30days the alarm went off all the time!! Then they did a Tilt Table that came out positive.. The Dr gave me some salt pills and said it was more annoying then dangerous? Even though I had a extensive family history of vascular and heart disease? The Cardiologist found out I had a 30% blockage somewhere and he was in such a hurry to make his T off( Not kidding) it was awful and scary , the Nurse finally called him out on it and said to slow down! He told me nothing to worry about have it rechecked in a few yrs? Now everyone just blames the flare up's on stress, Chiari's etc.. and refuses to rerun tests 7 yrs later?

I lost my Dad at 48, His 2 brother's passed before they were 50, My Mother at 52 and brother at 32, I also have 2 cousins who've had strokes in there 30's and they told them not to worry about their symptom's they were to young!!!

When they did the 1st scan for Chiari's they found 13.5 dozen white mater lesions on my brain! the Doc was overwhelmed and said he had never seen so many on a person my age.. I had to have a Spinal tap but when it came out clear for MS I was told not to worry about it??? Even though it can be vascular, Alzheimer or from an Immune disorder... I am so tired of being shoved to the side!! This only happened once I lost my real insurance and was given Medicare!!

Do you know if any of the diseases that can go along with Chiari's can cause White Matter Lesion's??

Sorry for the long post just frustrated , tired of feeling so bad and also scared they are missing something Big!

Thank you so much for your in put and time,

Debbie


#13

Hi Karla(:

My name is Macie and I am a little over a year post-op decompression from TCI in New York. I also had problems after decompression. About two weeks after my surgery, my symptoms returned and started getting worse. Unfortunately, my doctors could not do a full examination of me, considering I was an emergency case and needed to be treated right away. When I told my doctor I was symptomatic again, he told me to do a series of MRI's, CT's, ect. Basically, the full work-up he wasn't able to do before my surgery. We found out that I have a connective tissue disorder called E.D.S. E.D.S. is where the tissues between your joints is thin and continues to wither down rather quickly. E.D.S. is very common in people who have Chiari. In the decompression surgery, my doctor had shaved a bit of my skull, and removed the herniation; letting the pressure ease and allow my spinal fluid to flow freely again. This resulted in my shoulders/neck not being able to hold my head up any longer.(Due to the E.D.S). Now with the answer we needed, my doctor then proceeded to tell me what the E.D.S had caused and what our next steps were. What I had was called a Retro-flexed Otontiod. Basically, because my head was no longer supported, the pressure of my brain and skull weighed down on my Odontoid bone; causing it to press into my brain. After finding out this information, a second surgery was scheduled. 3 months after my decompression, I underwent Cervical Spinal Fusion from Skull-C1. My doctor put metal bars in my head to hold it up, and relieve the pressure off of that bone. He also put the Otontoid bone back in place. I now live with little symptoms and am able to do everyday activities.

What really bothers me though, is the fact your NS told you your Chiari was cured. There is no cure for Chiari. The surgeries are just to help you live a little easier with Chiari, considering the fact that you can always re-herniate.

Try asking your NS about a Retro-flexed Odontoid. If he doesn't know what it is, I recommend a second opinion. I'm not saying that what you have is a Retro-flexed Odontoid, but it's possible.I hope this isn't coming off as me saying he's a bad doctor, because that is absolutely not what my intention is. I'm sure he's a wonderful doctor and NS! I just want you to have the most information possible about the different possibilities you could have. You deserve the best!

I hope I helped a little and I hope you find the answers you're looking for and get the best treatment. I wish you good health and happiness!

Sincerely,

Macie


#14

DR ORO,

What a great man, and his staff from 1-10 = 10

Also the Hospital staff that works with him were top notch.. I was very impressed by the whole treatment and procedure..

I just live a 4 hr drive and friends work.. I am a single Mom so it makes it hard to run down there with every new issue I have.. I was hoping to work with a GP that communicate with the Surgeon but that hasn't happed..

Thank you for your post!



LizSpencer said:

May I ask who was your NS?


#15

Thank you so much,

You all are so very helpful.. We have to be our own advocates it seems to get the right Dr and also 1 who listens..

I have read the symptoms for EDS and POTS and they sound dead on what I've been dealing with... My NS is great but I don't feel I received enough info on what happens post op and what to look for..

SomethingWitty said:

Mayfield surgeon for me too, who doesn't want to acknowledge that issues are still there after surgery.. even with positive test of an infection after surgery. I hope you find answers... I have a follow up there on the 19th and if he is unwilling/uncooperative as usual I will be switching to another surgeon there. Mayfield is great, the surgeons are great... not speaking poorly of them, however I do believe after a lot of research and talking to other Chiari patients that see the same person... if it isn't "textbook" it can't happen.

Good luck! We all know how much it stinks and how frustrating it can be.


#16

I’ve read the symptoms for those conditions mentioned. I don’t see that any of them match me very well so I want to ask do any of you have extreme leg and back pain? I’m too the point my legs can barely move. Just trying to narrow this down.


#17

May I remind everyone that CM symptoms return post surgical at any time. They may be the same or different from pre op symptoms. Also, if you have CSF Blockage the pressure makes new pathways causing CM complications and post op symptoms. It doesn't always have to be an additional disorder. I have POTS and EDS but most of my post op symptoms are because my extreme CSF blockage pre emergency 16 hour CM & rebuilt C Spine surgeries. I can live with POTS and EDS not Chronic IH and severe neck pain from my vertebrae being pushed out of spinal column from CSF Pressure. Duration of CSF symptoms also influences outcome.

http://www.conquerchiari.org/subs%20only/Volume%205/Issue%205(5)/Surgical%20Results%20From%20China%205(5).html

http://www.conquerchiari.org/subs%20only/Volume%203/Issue%203(3)/Quality%20of%20Life%203(3).html

http://www.ncbi.nlm.nih.gov/pubmed/16357496 PCT is Intracranial Hypertension

http://www.chiarisupport.org/forum/topics/recurrence-of-symptoms-post-surgery?id=5129359%3ATopic%3A243502&page=2#comments

http://www.conquerchiari.org/subs%20only/Volume%206/Issue%206(2)/Symptom%20Recurrence%206(2).html

http://www.conquerchiari.org/subs%20only/Volume%202/Issue%202(7-8)/Symptom%20Duration%202(7&8).html

http://www.conquerchiari.org/subs%20only/Volume%202/Issue%202(7-8)/Brazil%20Series%202(7&8).html Details which symptoms improve with surgery.

http://www.conquerchiari.org/subs%20only/Volume%201/Issue%203/Options%20after%20failed%20surgery%201(3).html Treatment options after failed Surgeries.


#18

Hi I am now 20 weeks post op and since returning from my holiday in June I have become symptomatic each day. This time the symptoms are a bit different. I do still have the pain and pressure in my neck but now have back pain, terrible swirly headaches when I lie down, numb bum and numbness in my legs. I had been doing really well and was symptom free and off all my pain killers. Has anyone else experienced this and what was the outcome. Thank you


#19

Hi, I am about 2 1/2 years post op and have had multiple problems since my surgery. I don’t know how long you lived with your Chiari but I was 48 when I had my surgery, so a lot of damage was done. I think when they do the surgery, some doctors forget to mention that there may be nerve damage and depending on age, it could be worse. I walked around for 48 years with that, so it did damage for that amount of time. I have neuropathy in my hands and feet from my Chiari. I, like you, still get headaches and pressure and pain in my neck. Mine will radiate to the back of my head. I will swear my chiari is back but if I just stay calm the headache will go away. I had to have emergency decompression surgery so I do freak out a little bit when I get severe headaches. My outcome has been I am disabled and trying everything in my power to get disability. That may not be your outcome though depending on your age. I no longer have the focusing and concentration needed to work. I am foggy headed almost all the time and I had an abnormal EEG that showed epilepsy that I did not have EVER before the surgery but they say is not related to my Chiari. I am on a ton of medications, I have problems with depression and stuff like that because I cannot work. I get numbness and pain in my legs too, but I have pretty severe joint and allover muscle pains . It is almost impossible if you have not noticed, to get answers from these neuro and NS. They really do not Know as much as they should or could about this condition. So when I throw a new thing at them they say it is not related. I don’t know what they are telling you, but I know the numbness they are telling me, at least, that one is. Because nerve damage, is prob related to the Chiari and can be permanent. There isn’t too much they can do, although I am going to have a nerve conduction study and see what else they tell me. I can let you know if you want if they recommend PT or something else. They also checked my vitamin levels first to make sure it was not a vitamin deficinecy first which it was not. You may want to ask about that too. I hope this helps. The numbness is really a troubling issue, as exercise is almost impossible, as my feet get numb, I start tripping, and then I fall. Let me know what you find out as well. Maybe we can share information and help each other.


#20

Hello Leprachaun
I wish you well with your recovery and hope the symptoms ease up. I can’t really put my finger on it, but some days I feel grea and others not so much. However, recently I have noticed a strong correlation between a good night’s sleep good next day and a bad nights sleep and bad next day. Also been advised to sleep with CPAP for sleep apnoea and now starting to wonder how important night time oxygen levels are in our recovery. Have you had a sleep study?