I had my appointmnet with the neurosurgeon today. The one that I have been waiting for three months to see. This was my fourth opinion. All of the previous NS said that I needed surgery. I decided to to see the NS that was rated number 1 in his field.
He told me to come back in six months. Why, do you ask? Because he wants me to lose 80 pounds before he does the surgery. I weigh 207 lbs and I am 5'1. I had weight loss surgery in Februrary of this year because I had always been told that my weight was the source of all my pain and agony. I have lost 80 pounds since February and I hurt WORST than before I lost the weight.
So, now I have even more decisions to make. Do I
- wait six months with no pain relief to lose 80 pounds to have the surgery done by the 'best'
- have the surgery with one of the other doctors FROM HIS PRACTICE that said I needed to get done
- transition back home to Memphis, TN and start this process over.
Well my heart says number 3 because I want to be with my family. This depends on if I get approved for SSI. I had a mental status exam by a psychologist selected by the SSA. He thought I had dysthmia with recurrent major depression and post traumatic stress disorder. Lord, knows I can't stop crying. Thank God my daughter came with me to the appointment. She has been trying to cheer me up.
Nykki, I can understand why you feel so defeated. What a blow - I’m so sorry. Beeba has said this before, and it’s true…if you ask 5 NSs about the same patient you get at lease 4 different answers. It’s so frustrating. You are smart, you will think about it and then pick the right one.
You are not alone withthe way you feel. Try to remember they do have your best interest at heart. I am in a similar position and understand your frustration. I am on my lunch break and have to go, but feel free to message me anytime.
Ok so now I am concerned because I have surgery scheduled for October 2nd and I am 5’4 weighing 224. I have seen 3 doctors they all say surgery but haven’t discussed my weight and I have high blood pressure. I am now wondering if I need to try to lose weight first and reschedule.
I know exactly how you feel. I believe I may have pseudotumor cerebri, but because I am underweight the doctors just look atme like I'm crazy when I mention it. Now I am in the midst of a crisis and loosing my hearing but I have to wait to see an ENT! It's crazy sometimes. But the doctors do the best they can, usually ruling out the most common factors first.
I too am low on patience but we need to remind ourselves that if we don't work with them, they won't work with us.
The pain and frustration with this condition is unbearable at times, but allowing our stress levels to soar doesn't make things any better. Try to find something to take your mind off of this for a bit then reevaluate. Trust your gut and be persistent. If you aren't getting relief you need, find another doctor, then another, then another if that's what it takes.
Just getting this diagnosis is half the battle, just try to keep your head up in the meantime.
Weight loss is always nice but not necessary for surgery. there are greater complications with heavy patients(not necessarily neurosurgical, but medical, e.g. respiratory(more issues with sleep apnea and difficulty getting off the ventilator), circulatory(higher incidence of deep venous thrombosis in the legs), endocrine(higher incidence of diabetes), and cardiac.
It sounds like you ultimately need to make a decision. It sounds like every neurosurgeon you have seen has recommended surgery. the question becomes the risks. Can you wait to loose more weight? How bad are your current symptoms? Reading many of your posts, you talking about SSI, etc, it sounds like you have very significant symptoms. Which probably means it's time to have surgery. the risks rise a little, not dramatically. As a surgeon, we are just operating in a deeper hole, so the incision may need to be bigger. Otherwise, the surgery is the same.
I am so glad you posted your results. My daughter also has a macular sinus cyst which I am told is unrelated. She had migraine w/aura and only 1-2mm herniation, no Chiari diagnosis.
Anyway, looks like you are certainly in need of surgery. I would consult afew different neurosurgeons about expectations, the procedure itself, recoveryand long term things like potential relapse as well as oriental additional surgeries. Intracranial hypertension sounds like it could be an issue as well, which typically shunning and or medication can treat.
Did they discuss the possibility of Chiari bring secondary to intracranial hypertension? I'm not very educated in this area but I believe I have ih and have seen that Chiari can be sure to pressure pushing the brain downward.
I am so glad you posted your results. My daughter also has a maxillary sinus cyst which I am told is unrelated. She had migraine w/aura and only 1-2mm herniation, no Chiari diagnosis.
Anyway, looks like you are certainly in need of surgery. I would consult afew different neurosurgeons about expectations, the procedure itself, recovery and long term things like potential relapse as well as possible additional surgeries. Intracranial hypertension sounds like it could be an issue as well, which typically shunning and or medication can treat.
Did they discuss the possibility of Chiari bring secondary to intracranial hypertension? I'm not very educated in this area but I believe I have ih and have seen that Chiari can be sure to pressure pushing the brain downward.