I had a lumbar fusion in 2007, a cervical fusion in 2009 and a chiari decompression and cervical laminoplasty together 9/23/13. The surgery was a great success to most problems. Was completely chair bound before surgery, not able to do anything. I still have quite a bit of neck and shoulder pain and headaches, but it is expected being only 4 months post surgery and having 2 procedures. I am wondering if the headaches will go away? Also I still have quite a lot of pain in the middle of my back. It is difficult to sleep as pain makes me/change positions a lot. One very embarrassing thing that happens mostly after I shower or when I go out is I swear uncontrollably, I mean I am soaked. Most of the time it is with little or no exertion. I see overheating is a symptom of eds/pots. If anyone e is familiar with ed/pots would you please tell me if it sounds like I should be checked? I am seeing my Chiari surgeon (Dr. Heffez) next month and want to know if I should talk to him about this. I can't tell by reviewing info of Pots/Eds what all symptoms are. Any advice or help would be greatly appreciated. Thanks Karen
Here are some POTS symptoms (see www.dinet.org for more info)
Symptoms presumed to be related to cerebral hypoperfusion:**
- Lightheadedness 77.6 % (Grubb, 2000)
- Fainting or near fainting 60.5% of patients report near fainting (Grubb, 2000)
- Generalized weakness 50% (Low et al.)
Symptoms presumed to be related to autonomic overactivity include the following:**
- Palpitations 75% (Grubb, 2000)
- Tremulousness 37.5% (Low, Opffer-Gehrking, Textor, Benarroch, Shen, Schondorf, Suarez & Rummans, 1995)
- Shortness of breath 27.6 % (Grubb, 2000)
- Chest discomfort and/or pain 24.3 % (Grubb, 2000)
Sudomotor symptoms include the following:**
- Loss of sweating 5.3 % (Low et al.)
- Excessive sweating 9.2 % (Robertson, 2000)
Loss of sweating and excessive sweating are more common in patients with elevated norepinephrine levels (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007).
Symptoms that may reflect dysautonomia:**
- Delayed gastric emptying 23.7% of patients report gastrointestinal complaints, including bloating (Grubb et al., 1997)
- Bloating after meals (Grubb et al., 1997)
- Nausea 38.8% (Robertson, 2000)
- Vomiting 8.6% (Thieben et al., 2007)
- Abdominal pain 15.1% (Thieben et al., 2007)
- Diarrhea 17.8% (Jacob & Biaggioni, 1999) (sometimes with alternating constipation)
- Constipation 15.1% (Thieben et al., 2007)
- Bladder dysfunction 9.2% (Thieben et al., 2007) (this may include Polyuria(Jacob & Biaggioni, 1999) (excessive urination)
- Pupillary dysfunction 3.3% (Thieben et al., 2007) Pupillary dysfunction may or may not be responsible for some other reported symptoms, such as: Blurred Vision (Grubb, 2000) and Tunnel vision (Low et al.).
Generalized Complaint symptoms:**
- Fatigue 48% (Grubb, 2000) (which can be disabling)
- Sleep disorders 31.6% (Low et al.) (can cause unrefreshing sleep and an increased need for sleep)
- Headache/migraine 27.6% (Grubb, 2000)
- Myofascial pain 15.8% (Thieben et al., 2007) (characterized by regional muscle pain accompanied by trigger points)
- Neuropathic pain 3% (Thieben et al., 2007)
Other symptoms reported in research that are not categorized above include:
- Dizziness (Grubb, 2000)
- Tachycardia(Grubb, 2000)
- Exercise intolerance (Grubb, 2000)
- Clamminess (Grubb, 2000)
- Anxiety (Grubb, 2000)
- Flushing (Grubb, 2000)
- Postprandial hypotension (Grubb, 2000) (low blood pressure after meals)
- Blood pooling in limbs (Grubb, 2000) (can make legs feel heavy and appear mottled and purple in color)
- Intolerance to heat (Grubb & Karas, 1999)
- Feeling cold all over (Grubb & Karas, 1999)
- Low blood pressure upon standing (Grubb, Kosinski, Boehm & Kip, 1997) (Some physicians feel orthostatic hypotension is a separate entity from POTS)
- Cognitive impairment (Grubb et al., 1997) (may include difficulties with concentration, brain fog, memory and/or word recall)
- Narrowing of upright pulse pressure (Jacob & Biaggioni, 1999)
- Cold hands (Low et al.) (and often feet & nose)
- Hypovolemia (Low et al.) (low blood volume)
- Chills (Low et al.)
- High blood pressure (Low et al.)
- Hyperventilation (Low et al.)
- Numbness or tingling sensations (Low et al.)
- Reduced pulse pressure upon standing (Low et al.)
- Low back pain (Mathias, 2000)
- Aching neck and shoulders (Mathias, 2000)
- Noise sensitivity (Stewart, 2001)
- Light Sensitivity (Stewart, 2001)
- Disequalibrium (Sandroni, Opfer-Gehrking, McPhee & Low, 1999)
The above are symptoms reported by POTS researchers. Other symptoms sometimes reported by POTS patients include:
- 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
- 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
POTS symptoms can vary from day to day. They tend to multiply and become exaggerated upon upright posture. Blood flow and blood pressure regulation are also abnormal while supine or sitting, but these abnormalities may not be as apparent and may require orthostatic stress to become evident (Stewart & Erickson, 2002). Some patients do report symptoms occurring while sitting or lying down. Heat, exercise and eating can exacerbate symptoms. Women sometimes report an increase in symptoms around menstruation.
If you are suffering from some of the above symptoms, you need to seek professional help. Please do not attempt self-diagnosis.
Here is some info on getting an EDS diagnosis:
Thank you very much for the info. Karen
Karen, Heffez will screen you for hypermobility (EDS). If there is any question that you have hypermobility and “neck problems” during your consultation please make sure that you guys absolutely rule out cranio cervical instability before you get a decompression. Heffez did my surgery, he is great and I highly recommend him! But my CCI was missed and not corrected at the time of my decompression. If Heffez determines that you are hypermobile he may ask you to wear a cervical collar. if he does please follow all of the instructions (I didn’t and that was part of the problem)
Can you see a cardiologist for the dysautonomia symptoms?
Jenn
Thanks for your response Jenn. I did have a Chiari Decompression along with a Cervical Laminoplasty by Dr. Heffez on 9/23/13. I had so many symptoms and basically could do absolutely nothing before surgery. Dr. Heffez did check what I think hypermobility, if that is when your joints bend back in a way they should not. He did have me try a collar before scheduling surgery, but because of the previous cervical fusion, it made me very uncomfortable. My surgery was a success, my symptoms are much less than before surgery. I do need to see a cardiologist because my family history particularly on my mother's side, has very very bad heart problems. I still have very bad ringing and swooshimg in ears, trouble swallowing, trouble sleeping. I sometimes feel like a weight is sitting on my chest. When I am up, not necessarily doing anything strenuous, I get extremely sweaty and feel light headed, this happens all the time and is extremely embarrassing when out. I also have a hard time after showering, feeling light headed and faint and sweaty. I am very grateful to feel better than I did, but wonder why these things happen and if there is anything I can do about them. I still get headaches pretty much every day and still have pressure in my head. Sometimes my head just feels funny, full. I also have neck and shoulder pain and middle back pain. I am trying to get in to see Dr. Heffez sometime in the next 2 weeks for a scheduled follow up. Another thing is I am still on narcotic pain medication, and I was wondering if that is normal? Does anyone get completely better? Do most people have to take some form of medications? I am really wanting to get back to some kind of a normal life, I am tired of missing out. Will Dr. Heffez tell me if I need to see a Cardiologist? Thanks Jenn, sorry for being so long winded, trying to figure all this out. Everyone has been so helpful. Thanks Karen
Km, if you need a referral to see a cardiologist I would just go through your PCP, and Em is right about finding one with dysautonomia experience. I have heard from people who become symptom free after surgery, but I think most of the people who are on this site still have symptoms of varying degrees post op- also I think that people who are symptom free are probably out enjoying life and not on a support site :)I have dysautonomia that came on after surgery. I take a beta blocker and that has greatly reduced my Dysautomomia symtoms.
When you see Heffez I would ask him if he thinks you could have CCI and that could be contributing to the continued pain?
I’m glad your doing better since surgery, but sorry you are still having pain. Do the narcotics control the pain? I was taking a narcotic at 4 months post op as needed, probable once a week to every other week. Not sure if it’s normal to still be taking them regularly. What is your activity level like? Is the pain associated with higher levels of activity? When I was at that stage in recovery I had very little stamina and had to be careful of overdoing it.
Jenn