Hi. I don't know if this is a comon problem, but I had surgery in March. I am getting so much worse than I already was. My surgeon makes light of it, yet is now talking about doing another surgery.....Is it reasonable to want another surgeon to take a look at my MRI's and weigh in on this before i blindly follow orders but get no real explanation as to why the pain is progressing or probably need another surgery....which I can't bear the thought of in the shape i'm in from the first one,,,,,ALL the surgeons recommended here in NY WILL NOT GIVE ME THE TIME OF DAY. I NEED HELP BAD!! Once they know I have had 1 surgery that is it, They do not care how long ago, or perhaps I relocated....WHY WHY WHY can I not have an appointment??? I have heard many will not see you until a year after your surgery, but I am getting doors just slammed in my face. I am not mad or complaining about my surgeon, but now that I have better insurance that allows me to be seen by top chiari surgeons and im almost a year out and doing very bad...SOMEBODY PLEASE EXPLAIN WHY THIS IS HAPPENING? Nobody ever warns you that you lock yourself in for life and lose your right to ever see another surgeon,,HELP??????? pain unbearable .... also.. I asked the hospitals for recommendations and same happens when I call. I am holding my breath waiting to see "if they can find someone on staff who will actually deal with this" I thought this is what they do?
Hi Jessica,
I had a situation, similar to yours, after my decompression surgery. My NSurgeon's practice was in a state that was several thousand miles away from where I live, and after surgery, I just did not seem to feel a whole lot better.
I tried to get an appointment with a NS in Alaska (where I live) but NOT ONE would let me make an appointment. What I was told by my primary doctor was that none of the local surgeons wanted to take on, what they thought, might be another NS botched surgery, and/or complications. I do understand how the local Drs might feel, but I needed help! My surgeon did NOTHING wrong. I developed a CSF leak, and just wanted to have someone local to consult with, and to have that person monitor my leak. In my case, I had complete faith in my NS. It all worked out well, as my primary ordered tests for me, and we sent the copies to my NS. Long story short, flew back to see my NS, and had leak repaired. Even after everything repaired, it was 2 years before any NS in my state would talk to me. I could not even get a Neurologist to take me on for over one year after the repair. It is a good thing I have a fairly decent Primary Care Physician!
Do you mind sharing what symptoms you are experiencing now?
I'm so sorry you are experiencing these problems with obtaining a second opinion. It is totally reasonable to want to seek another opinion if you have doubts. People switch doctors all the time, so, why is it that we would have to keep seeing a physician that we have lost faith in???
I hope that you get some answers soon!
Sending lots of good thoughts and prayers your way. : )
Pam
Thank you for your reply, AKTREK. I suffer from extreme crippling pain in my left side shoulder arm and hand. Also neck and now my back as well. I only now am getting severe headaches, I can't stand or sit too long, I get random brain shut down, I have severe fatigue. I think my nausea is mostly associated with my head pain, I get bouts of such skin pain from my scalp and incision down my neck straight to my hand. The pain seems to now build up in my hand. I have numbness and at the same time have hypersensitivity to hot and cold.
ABBY....I DO have a severe syrinx. It goes from top of cervical to well into thorasic and has a secondary syrinx growing out and upward from it. Apparently there is a name for that, I forgot it, and its pretty rare. My 2 MRI's since surgery have shown a slight shrinking of primary syrinx and a little restoration of CSF. But I am progressively getting so much worse and all I am told is go to pain management, which is fine for now, but I know what kind of horrific pain I am desperately trying to mask with pills, patches, injections and so forth. I would like an opinion or even an educated guess of why I am on the road to never getting out of bed! Just got yet another call back from a Surgeon recommended from HERE who has zero interest in giving me 20 minutes of his time and getting paid for it. They are NOT interested in WHY I need to see a surgeon once they here I have had 1 surgery. They are NOT interested in ow long ago....what my problem is, maybe I relocated or my surgeon id retired....NOTHING.. ABBY...THEY DO NOT EVEN KNOW ABOUT MY WEIRD SYRINX OR WHO MY SURGON IS!!!! I DO NOT TELL THEM I HAVE A PROBLEM WITH HIM, JUST THAT I NEED A SURGEON WHO CAN LOOK AT MY PICTURES AND TELL ME IF THERE IS A PROBLEM....I hear stories all the time here about doctors who are known for fixing someone else's bad surgery...I am not even saying I had a bad surgery, but WHO WOULDN'T WANT A SECOND OPINION WHEN EVERYTHING IS GETTING SO UNBEARABLE AND YOUR SURGEON IS SAYING HE MAY NEED TO DO ANOTHER SURGERY???? AM I NOT BEING REASONABLE???? again..I am not saying I think my surgeon did something wrong, BUT BEFORE i GO THROUGH THIS AGAIN I WANT AN IMPARTIAL DOCTOR'S OPINION. I AM JUST ABOUT OUT OF DOCTORS FROM HERE. I AM GOING BROKE WAITING ON SSD AND CAN NOT JUST TRAVEL AROUND FOR OPINIONS. My husband left me while I was just diagnosed. I am using his insurance now before divorce is final. NOBODY TELLS YOU .....ONCE YOU SEE THIS DOCTOR, YOU ARE LOCKED IN. IRONICALLY...I CHOSE MY DOCTOR CAREFULLY, MY SURGERY THAT I APPARENTLY NEEDED VERY FAST WAS PUT OFF FOR A YEAR. A HORRILE YEAR OF BUILDING PAIN BECAUSE FIRST A TUMOR WAS FOUND IN MY SPINE. IT DID TURN OUT TO BE BENIGN, BUT THEN I WAS NOT ONCE, BUT TWICE INCORRECTLY DIAGNOSED WITH STAGE 4 BONE CANCER, SO UNTIL I NSORTED THAT OUT, I DO UNDERSTAND WHY THEY WOUDNT DO MY SURGERY, BUT AT LAST POSSIBLE SECOND WHEN I WAS GOING IN FOR SURGERY..FINALLY..THEY SWITCHED MY SURGEON ON ME..I FEEL VERY VICTIMIZED BY THAT. HE IS A NICE MAN, BUT VERY SPINE ORIENTED. I AM VERY SURE THAT MY SURGEON WHO IS QUITE OLD WAS MENTORING THIS OTHER GUY SO NOW HE CAN ADD CHIARI SPECIALIST TO HIS RESUME AT MY EXPENSE. .SO SORRY FOR MY RAMBLING.....BUT BOTTOM LINE.....WHERE ARE ALL THERE TOP SURGEONS WHO FIX THE BAD SURGERIES??mAYBE MINE IS NOT BAD, BUT I WOULD NEED AN APPOINTMENT TO KNOW. OR DO I LITERALLY HAVE TO WIND UP IN AN EMERGENY ROOM IN THEIR HOSPITAL??
oh.and ABBY...I am so far past all that. I have seen my surgeon regularly, came in on emergencies, landed in emergency room 5 times..but now know that is a joke...see my neurologist regularly, but he is not a surgeon, The lady who just called me today from [dont know if I can use hospital name} a highly recommended doctor from here said no.when I tried to tell her why or ask why she told me she is sorry, it is what the doctor said. Nothing she can do and maybe I should go to my neurologist. Is it me or is this a sorry state of health care. And my original surgeon is pretty sharp. He did not diagnose me with anything else and I am always researching and learning. There are a few things..slow heart rate...and such but I think he or my neurologist [or me..lol] would have caught it. I saw a lot of surgeons before I met my CHOICE man, when he asked to see my hands just wondering how many times i have burned myself and not known, I thought, he kind of gets it...but when he looked at the same MRI everyone else did and was the only one to see the gross abnormality of the syrinx i felt my search should end. Maybe I did make the right decision, but I was pushed off on another surgeon. I panicked so bad, called my surgeon like a crazy person making him promise HE is doing surgery, but I think his protogee did most of it
No Abby, Nobody has. The only mention I have ever seen of that word is here, BUT THAT SCREAMS ME!!! What does it mean if you have it? Why arent we checked for things like this...are there any treatments? How do they test?? I feel like everyone I speak to feels its the end of my road with getting help and im being dramatic or impatient. The lady who called me back from the city today said " if surgery has been done there is rarely any other course of action"...WTF..I guess that includes trying to find out why my pain is worse and I always feel sick...I will bring that up to my neurologist...My surgeon also but I know he will mock me and tell me to stay off the internet and stop diagnosing myself......I do feel like I have instability of the neck but I thought that was normal. Can you tell me anything else about Dysautonomia?
Abby..I just looked it up....I find this very strange...I used to suffer from nasty unexplained sudden bouts of sweaty dizzy fainty spells with nausea. I was sent for blood tests and diabetes test...a few times and nothing turned up. I believe it was when I was put on propranolol for migraines is when that just kind of stopped. once in a very rare moon has it happened again and I still take propranolol but I am convinced that there is a connection
So, again, I had all those fainting spells before propranolol, When are you OFFICIALLY considered diagnosed with that? Do I see a neurologist?
Jessica, so sorry you are still having issues… I second everything Abby said. I take propranolol as a beta blocker for POTS. If you are still having Dysautonomia symptoms you may need to see an electrophysiological cardiologist to revisit if there is a better med for you. Also want to suggest you spend a lot of time looking into EDS. I’m going to paste a response I gave to another member about her recurring syrinx…you may need to go outside your state for the right doctor. It hard and more costly I did it twice, but you deserve to get the help you need. Stay strong and know are not alone.
Ehlers Danlos Syndrome is a hypermobility disorder. A collagen elastin problem causes soft tissues to stretchy and lax. Lax ligaments allow CRANIO cervical joint and lower cervical joints to become unstable. This instability will Streatch, and deform spinal cord and or brain stem. Symptoms mimic Chiari, most NSs are not aware of Cranio cervical instability in Chiari patients, so don’t screen for it. CCI is present with about 20% of chiarians. There several kinds of CCI: vertebrael instability (translational movement), basilar invagination, retroflexed odontoid, sharp clivo-axial angle.
The NSs who diagnose and treat CCI in chiari patients are:
Henderson, MD
Sandhu, MD
Patel, SC
Rosner, NC
Bolognese, NY
TCI, NY
Trumble, FL
Frim, IL
I’m sure there others who I have not heard about.
These are some great videos about EDS and CCI
CSFinfo.org
Videos
Greater metro area
All videos about Chiari/CCI/EDS
Google the Beighton Criteria and the Beighton Criteria to get an idea of how EDS is diagnosed.
Keep at it you will find the help you need…
Jenn
Yes I experience many of those. I don’t know what to do. I feel like back when I was first diagnosed with chiari. I’m just one erwhelmed
Abby said:
Jessica, one of your doctors suspected Dysautnomia, and put you on Propranolol. I take nadolol, which both are in the beta block family.
Here is some symptoms for you. Please check out DINET.org for a full summary. I am so sorry you suffer with these symptoms, I have said this to many folks, but sometimes the dysautonomia symptoms are way worse than chiari. The heat kills me and drains me of every bit of energy I have. By the way, headaches are another symptom of Dysautonoma. Go read about this and I have some other stuff I will gather up for you. Sending you hugs.
Most Common Dysautonomia Symptoms
Ever wonder why you feel some symptoms but not others?Its all normal.we are all different.This is a pretty detailed list of Dysautonomia symptoms that you may or may NOT experience:
This is a compiled list of symptoms put together by researchers of dysautonomia. You can see why the puzzle is so big and hard to put together and why most days life is a struggle for us. At.any time we can experience any combination of these things not just from day to day, but from hour to hour.
Lightheadedness
Fainting or near fainting
Blackouts
Generalized weakness
Palpitations
(irregular heart beat that causes conscious awareness of it's beating)
Tremulousness (uncontrolled shaking of body parts)
Seizure like activity
Shortness of breath (air hunger)
Chest discomfort and/or pain
Loss of sweating
Excessive sweating
Loss of sweating and excessive sweating
Delayed gastric emptying
Bloating after meals
Nausea
Vomiting
Abdominal pain
Diarrhea
Constipation
Bladder dysfunction
Polyuria ( excessive urination)
Pupillary dysfunction
Blurred vision
Tunnel vision
Fatigue (which can be disabling)
Sleep disorders (can cause unrefreshing sleep and an increased need for sleep)Headache/migraine
Myofascial pain (the connective tissue that covers the muscles)
Neuropathic pain (nerve pain)
Dizziness
Tachycardia (rapid heart beat)
Bradycardia (slow heart rate)
Exercise intolerance
Clamminess
Anxiety
Flushing
Postprandial hypotension (low blood pressure after meals)
Blood pooling in limbs (can make legs feel heavy and appear mottled and purple in color or swell to sometimes twice it’s normal size)
Intolerance to heat
Feeling cold all over
Low blood pressure upon standing
Cognitive impairment(may include difficulties with concentration, brain fog, memory and/or word recall)
Narrowing of upright pulse pressure
Cold hands (and often feet & nose)
Hypovolemia (low blood volume)
Chills
High blood pressure
Hyperventilation
Numbness or tingling sensations
Reduced pulse pressure upon standing
Low back pain
Aching neck and shoulders
Noise sensitivity
Light Sensitivity
Disequalibrium
Arrhythmias (irregular heart beats)
Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications - may only need small doses)
Easily over-stimulated
Feeling full quickly
Feeling "wired"
Food allergies/sensitivities (some foods seem to make symptoms worse) Hyperreflexia
(overreactive reflexes)
Irregular menstrual cycles
Loss of appetite
Loss of sex drive
Muscle aches and/or joint pains
Swollen nodules/lymph nodes
Polydipsia (excessive thirst)
Weight loss or gain
Feeling detached from surroundings
Restless leg syndrome